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Some acronyms used on this page:ABA = Applied Behavior Analysis AS/ASD = Autistic Spectrum Disorder HFA = High Functioning Autism IEP = Individualized Education Plan NT = Neuro-Typical (not autistic) PDD-NOS = Pervasive Developmental Disorder - Not Otherwise Specified RC = Regional Center (RCEB = EC East Bay www.rceb.org)
Evaluation for Autism
Questions about resources and support
Hi, I'm feeling a little overwhelmed. I am having really gut feelings that my 14 month old boy displays signs of autism. We have a newphew and cousin who have autism, so I am aware of the symptoms. I tried calling early intervention to have him evaluated, but they say they don't evaluate for autism until 18 months. I know early intervention is very important in terms of outcome, and I'm wondering if there are any families out there that were able to get services for their child at a younger age. If I get him evaluated by a developmental pediatrician and get a diagnosis can we start a program through early intervention? I know 14 months is very young and many people will tell me to wait, but I can't just sit back and do nothing when I really feel like something is going on. I'm already looking into dietary changes, adding some basic supplements, homeopathy, and cranial sacral. Thanks in advance for any advice. anon
I am seeking help and lost at the moment as it relates to my son's primary care provider believes my 2 year old has autism. I am looking for advice on where to proceed from here. My son's doctor didn't have much to say other than you have a lot of work to do and don't let him see tv. If you have advice as to local groups, daycare, centers, etc in the Castro Valley (Eastbay Area) please email me. Thank you for reading my post. Patrick
My 5 year old child who just entered Kindergarten is getting into a lot of trouble at school. He is being evaluated by a school psychologist who is telling us that he could be suffering from one of the autism spectrum disorders and advised us to get a medical diagnosis. I am devastated after hearing this.
We have seen several ''specialists'' since he turned three because we realized that he had some issues and we got several different opinions ranging from ADHD to Sensory Processing Disorder. I dread going to another doctor now but I want to do whats best for my child. If I get recommendations for doctors in the bay area who specialize in recognizing or ruling out Autism Spectrum Disorders, I would be so grateful. I have been researching this online and my child doesn't seem to fit into any of the five categories!
I would greatly appreciate responses from parents who have gone through similar experiences. Thank you. Sad and frustrated mom
I have a child with an ASD, and I'm a professional in the field. I've been impressed with evaluations done by psychologists and psychiatrists at Children's Hospital, but I've found psychologists at Kaiser Oakland and Santa Theresa a little too eager to diagnose after an office visit and not enough investigation into kids' behavior in their natural environments. However, private practitioner Mansoor Zuberi, MD, in Walnut Creek has a lot of experience with kids on the spectrum and knows how to evaluate them.
Are you working with an occupational therapist for the sensory issues? Some of them can give feedback on ASDs. I've heard good things about Susan Campodanico at Alta Bates. Speech and Language Pathologists can also help identify ASDs.
You might ask for a second opinion within your school district. An IEP team can determine special education eligibility without a doctor's diagnosis if the school psychologist and speech/language pathologists are experienced in identifying ASDs.
You're not alone. Good luck! Been There
Our son has PDD-NOS, an autism spectrum disorder. His symptoms mainly consist of language delays. Here is his ''diagnostic history.'' Twice we were told he had no language delays. Then we were told he had Sensory Integration Disorder, but fortunately not autism. Then we were told that he had sensory issues, an autism spectrum disorder and significant language delays. Each professional had a different opinion. We took him to an autism language clinic where we were told that he was not autistic, had no language delay, but that we should take him to the pediatrician for medical advice because he was ''non compliant'' during the assessment.
If there is anything I have learned it is that it is important to ask exactly what assessment tools are being used. I felt that the more informal the assessment was the more off the mark it tended to be. The psychologist at OUSD used the ADOS- the autism diagnostic observation scale. The key word is ''observation''. I still think it is somewhat subjective. I'm not sure my son is on the autism spectrum but at least he is getting plenty of language therapy.
Have you looked up the DSM entry for Autism? You can find it on the internet. If you haven't already seen it you might find it helpful. Autism really is a broad spectrum. I would also recommend reading ''The Misdiagnosed Child,'' not as fodder for arguing with psychologists, which I have found futile, but to learn about the various disorders, how they overlap, and how one can be mistaken for another.
It sounds like you have financial resources, which is wonderful. You might want to get a neuropsych eveluation. Don't give up looking for answers. Good Luck!
My son started Kindergarten this year at Harding Elementary and was in a very similar situation to what you are describing. He is highly sensitive and was easily frightened by the teachers and was acting out. The school teachers and the Principal handled it extremely poorly, telling me there was something wrong with him, that he was not ready for kindergarten and that he needed to be medicated. I did the trip to the Doctor and set up Psychologist evaluations and started to believe what I was being told. However deep down in my gut I knew that he did not act like this with us at home and trusted my instincts that there was nothing wrong with my child.
The first thing I did was move my son to another public school in the school district that was on a faster pace in learning and had a calmer environment. I am happy to say that he is excelling and not exhibiting any of the behavior problems that were happening in the other school. NEVER has he acted out at this new school. Turns out he was bored at Harding and scared of his teacher and the unsafe environment they had set up for the Kindergartners. His acting out was his message to us that it was not the right fit for him. I cannot tell you how relieved we are that we chose to try another school before we were convinced by the teachers that he had a behavior disorder and I really encourage you to look at other schools for your child. If he still has the same problems at a new school then maybe you need to go down the path of looking at diagnoses but please remember that some schools seem to think it easier to label & medicate children (especially boys) than to teach using a variety of methods that encourage every child to learn.
The whole experience was one of the most stressful times in my life and it was truly the public school nightmare that I feared. I completely understand the turmoil you must be going through. If you would like to contact me off the forum I'd be happy to talk with you more - my email address is included. Carolyn
Knowing that there was no way we could afford a $50/hr aide to attend school with him I went into SuperMom mode. We consulted a child psychiatrist who observed him in the school setting. He initially suspected Aspergers but ruled that out in the private session, then tested him ADHD and that didn't really fit either. There was a lot of aggression but when he was in the right setting he could totally function fine and could fully concentrate when he wanted to. We also had him evaluated by an OT for SPD and there was no clear diagnosis there either. I tried to get an appt with Dr. Brad Berman, a recommended developmental pediatrician. but the first available was 9 month out so that wasn't an option.
I read every single book I could find on ADHD/ADD, Austism, Aspergers, allergies, and SPD. One that really blew me away was Healing the New Childhood Epidemics by Dr. Kenneth Bock...it kind of follows along the lines of Jenny McCarthy's experience with her son.
But- again - it seemed my son wasn't autistic or ADD but something was definitely wrong so I took a little bit of everything from all the books and threw it all at my son to see what might make a difference. I did lots of probiotics to work on his gut, started daily fish oil capsules (Dr. Sears kind), and was diligent about multivitamins every day. We started giving him a high protein yogurt smoothie with fruit every morning for breakfast - that was from the ADHD books. I was ready to embark on the gluten and dairy free diet as a cure but it was SO intimidating. A good friend recommended removing everything artificial from his diet - she said it had really helped with her son and his SPD. I decided to first to start with the removal of the artificial stuff would make a difference - that was much easier to handle than gluten/dairy free. We read labels for everything we gave him and made sure it was free of artificial color (including annatto); artificial flavors, artificial preservatives and artificial sweeteners. It is a lot easier than it sounds -just shop at Whole Foods and Trader Joes. I was meaning to have him tested for wheat and dairy allergies but never got around to it - would have been my next step.
Well, we enrolled him at the public school mid-year, fully expecting to be utilizing their assessment and treatment services for special needs kids. He had an amazing teacher and a wonderful school and who would have guessed - absolutely no issues. Well, okay, I think there were a couple minor issues in the first month but that was all. Now, almost a year later we have a child in first grade who completely "normal" and is doing fantastic - we are getting notes from the teacher saying what a joy he is to have in class. When I get those notes I think back to where we were last December and how far we have come. I even cancelled my appt with Dr. Berman because it would have been pointless. My son now says he is "allergic to artificial stuff" and makes sure I remember his vitamins in the morning. He will still have something questionable once in a while at a party or such and we often see a direct result in his behavior, but it is a temporary spike that we can deal with. I don't know if any one thing or the combination of all the things we did that made a difference but we are sticking with it and are thankful for every day.
Please email me if you would like to talk more about our experience - I couldn't fit everything in the space of this newsletter - even in 3 parts! eva
My son was identified as being on the autism spectrum at 3 years old. We qualified for services from our school district (OUSD) and through their language-enriched preschool program, he has made extraordinary progress. He is a smart, funny, social, quirky kid and I would not change anything about him.
In my experience, seeing someone who specializes in ASD is your best bet. Pediatricians tend to dismiss concerns unless they see things like no eye contact or no speech: the more profound markers of autism. Our son is affectionate, verbal and outgoing - very unlike the portrait of autism you're used to hearing about - and our doctor assumed for that reason that he was fine.
Also know that you are not alone. There are a lot of families who have gone through the same thing and are happy to provide support and share experiences. Remember, your son is still the same great kid he was before anyone said the word autism. Please feel free to contact me if you'd like to connect directly. Christa
I wish I had someone to refer you to but I haven't found anyone yet. And all the specialists I've seen all have different opinions. I just wanted to say you're not alone and it is scary, frustrating and sad. I wish you the best Navigating the IEP
I hope you can rule out autism. My friend who is an older teacher thinks that many boys are being diagnoses with borderline disorders when all they really need is more exercise and more intense exercise. Remember when boys used to ride their bikes and climb trees all day? Hopeful
UCSF has a clinic that is designed especially to diagnose autism spectrum disorders. They have a multi-disciplinary team to assess, including an MD, psychologist, speech therapist, physical therapist, etc. I think it's important to get a correct diagnosis so you can provide your son with the help that he may need, early! Don't wait or give up.
Another place to look into is the Bright Minds Institute. Dr. Fernando Miranda is a neurologist that I work with in a hospital setting with adults. He is the founder of the institute and has been featured on Good Morning America talking about autism and how we are diagnosing children with all types of disorders that involve how the brain works, but we are not regularly doing any imaging of the brain to add to the anectodal evidence and behavioral observation. They have a Web site you can find their information and number there. They also have a multi- disciplinary team to do the assessment.
Best of luck! And do not get frustrated, you are doing the right thing by trying to find answers so you can help your son, and you will find them! Kirsten
My son (29 months) is receiving speech therapy and OT for speech delays and sensory issues, and both therapists have recommended an evaluation for ASD/PPD. We're working with RCEB (Oakland) but he cannot get into see a neuro/psychologist until late October -- at which point it seems the docs won't see him because they are limiting their testing to 18-30 month old toddlers. Anyway, we have the means to have him evaluated privately, although I understand from speaking with out pediatrician that the wait will be several months regardless of which route we take. My question is -- for those of you with experience with RCEB/otherwise -- would you wait and go with the RCEB provider or work toward getting a private developmental pediatrician? Interested to hear about your experiences. Thanks. in limbo. . .
My son was diagnosed privately and it just made the RC eval process that much easier. They still provided services, but since we already had the dx we were able to skip a lot of the steps and head straight for them. I recommend Dr. Erica Buhrmann in Albany (510) 540-5320 Feel free to contact me directly. Jill
Perhaps with the opinion of the other therapists, you will have better RCEB experiences to report. (My son's pediatrician never accepted my conviction that he had significant delays, instead insisting he was developing normally.) But my sense is the RCEB is overwhelmed or underfunded, handle their limited resources by stalling evaluations for services, and once services are given, they aren't adequate. Not a RCEB fan
I am seeking advice about diagnosis and treatment for my 3 year old son, who may show some symptoms of mild Pervasive Developmental Disorder Not Otherwise Specified (PDDNOS). One one hand, his intellectual development seems very strong: at 3 he can read almost anything. On the other hand, he seems unable to participate in a spontaneous, two way conversation. Instead, he usually repeats the question asked of him. Other possible signs of PDD include: lack of any imaginative play (when we suggest it, it upsets him); mixes the pronouns ''I'' and ''you''; and strong adherence to routines. Do you have recommendations for assessments, such as a developmental pedatrician and/or recommendations for seeking treatment for a relatively young child. Thanks much. Elizabeth
As for other treatments, there is a lot available out there. A full developmental assessment can help you decide which ones you need to pursue. The traits you described sound consistent with hyperlexia, but again, I really recommend a full assessment by a professional. Anon
I am looking for information to help an autistic 4-year-old boy. The mother does not have much community/school support. But she really wants to try her best to help her kid at home and possibly to educate the preschool teachers as well. Her son has language delay and some other characteristics of autism but seems to be high-functioning kind. Any information and advice you have on this topic is much appreciated. Thanks a lot. Lily
My pediatrician thinks that my 3 year 1 month old daughter is mildly autistic and wants us to have a developmental assessment. I have been looking into this and the wait times for this are extremely long when we are feeling so anxious. We are getting on the waiting list at Children's Child Development Center and have also contacted the East Bay Regional Center. Has anyone had experiences good or bad at these two places? Does anyone have any experience with this type of evaluation they are willing to share? What can I expect? What can I expect with this type of diagnosis? Can anyone recommend a really sensitive great child psychologist who could do the assessment privately? If you would be willing to talk to me about your experience with this I would greatly appreciate it. We are pretty terrified at this point. My daughter is very outgoing and interactive with adults and children (although not with her pediatrician!), has some problems with limits and has been having trouble with language and pronunciation. Her speech is indistinct and words she used to pronounce correctly are sometimes now slurred. She used words earlier than her peers but then progress seemed to slow down and now her inteligibility is not good. Strangers often do not understand her. Frankly, I don't view her as autistic but I am worried about the amount of rhyming that she does. She does it interactively with us and also babbles and rhymes talking to herself alot. She sometimes uses a singsong tone that people have commented on. (We are on the wait list for a speech eval. at Herrick.) many thanks
Carolyn Johnson, Ph.D. at Children's Hospital, Oakland's Department of Psychiatry, also wonderful with small children, is an excellent neuropsychologist who works in an interdisciplinary team that has a lot of experience with autism spectrum disorders.
I have worked with both of them and would bring my own child to them without a second thought. I don't know if either do private assessments, but if you couldn't get in through UCSF or CHO, it's worth investigating.
Our son , 7 1/2, was recently diagnosed with Autism. Would love to meet other like families to talk & share. We are reeling still and feel a bit lost. We're in Berkeley. J.
My son was diagnosed as being on the autistic spectrum. Five months ago, when we received the diagnosis, I felt so hopeless. Now, after working with therapist and using a bio medical approach, my son has improved so much. So now I have two questions on this 1) Am I doing everything I can to make sure that he continues to improve and learn? 2) I know that most experts say that autism never goes away/there is no ''cure'', but have any of you had experience to the contrary? Maybe I'm just kidding myself, but I've seen so many great changes in my son, and family and friends are saying the same thing. I have thoughts that in a couple of years, he'll be a ''regular'' kid. But is that really possible? I'm trying to remain hopeful, but I also want to be realistic about the future. Concerned Mom
I have a 5 year old who has been diagnosed with autism. We have learned to make decisions based on ''at what cost''. I do not mean financially. I mean at what cost to my sons dignity, the trust he has in me, and the family as a whole.
I have called it ''The Velveteen Rabbit'' method. I love Sam so much his fur might get worn off. Knowing there is profound unconditional love surroundng him I belive he will know he is whole and okay. I belive in retrospect this is the most important thing.
Find people you trust to walk with you on the long path ahead. Therapists will come and go as the system requires. Some will be more connected to your family than others. I suggest you search for one or two people who will walk with you for the long haul. I was raised in the Bay Area and now live in PA. Dr. Ann Parker in Berkeley is one of those people for me. She has expertise in neuro developmental disorders but looks at the whole situation with uncommoly good common sense. The other person is Rebecca Klaw in Pittsburgh. She has a background in education and autism consulting.
Your son is still the same little guy he was before the diagnosis. Go hug him and remember to make plans mindfully. Please let me know if there is something I can do for you or you would like to talk. Warmly, Kate
As for your second question, that's a really tough one. We've had our diagnosis longer than you have, 3+ years now, and the most interesting thing I've found is not necessarily how much progress my son has made, but how much *my* expectations have changed. At 2.8 when we got our dx, I, too, went online and read about kids making miraculous changes; entering mainstream kindergartens at the age of 5; nobody can tell there's anything different, etc. Now, at just past 6, those things have actually been true for us. He's in a mainstream kindergarten and it's true that most people can't tell there's anything different about him, upon first glance. But he still has autism. And he still isn't like the other kids. We still have years of work to do, I can't imagine there will come a day when he doesn't need an IEP. He'll never be a ''regular'' kid, but what does that mean, anyway? I think in order for you to get answers to your questions, you need to be able to define your own expectations. What do you want him to do or not do, and if he doesn't meet your expectations, will you be okay with that?
I'm not sure if this is helpful to you or not, these are just the things that I think about on a daily basis! Feel free to contact me directly. Jill
As to your 2nd question - well, if you load on services now, you may find that the ''autism spectrum'' diagnosis was just the closest thing anyone could get to describing your kid at this age, and that as he grows he will change, improve, have fewer symptoms. Would that happen without the therapy? Will it happen if you do nothing? Who would take that risk to find out?
My now 12-year old is a hugely different kid from when he was diagnosed at 4, and is doing great. Is he typical? Heck no. Is he pretty happy and being educated well? Yep. So while I don't think you would say he's ''cured'', he's not at all the screaming, inarticulate, frustrated kid he was at 3, now that he has a lot of modalities in which to express himself! hope that helps. Provide more input, and you'll get more specific suggestions! - Been there
My 2 1/2 year old son was just diagnosed with autism and my husband and I feel at such a loss regarding support, resources, tips, advice. We have another appointment this week to find out more about therapies, but we just feel like we are floundering in limbo and would love if anyone could point us in the right direction about what we should be looking for in regards to therapies, support networks, etc.
We live in Walnut Creek but will travel whereever we need to to find out more or to help our son. He was supposed to start preschool in the fall, but my hunch is that we will need to look for something that better meets his needs and would love any advice from parents who are in or who might have been in a similar situation.
Our hearts are breaking that we didn't realize there was a problem sooner..I guess we were guilty of just assuming these traits (limited eye contact,delayed speech, little interest in other kids, etc) were simply indicative of his personality...having no idea that they were such red flags for autism. So at this point we want to do whatever we can to learn what we can do for him.
A sad Mom who knows things will get better...but is just crushed right now
I can imagine that this kind of news is hard to swallow. Blissfully there is much more we know about Autism now than a decade or two ago, and there are different treatment approaches to choose from.
You may get MANY responses, so I will be brief
An excellent consultant in this area is Dr. Ilene Lee - email is ilenelee[at]aol.com. She specializes in Greenspans floor work.
Another approach is the work of the KAUFMANs of the Option Institute. You may find their book SON RISE intriguing. They developed their method for working with their son and totally CURED the autism ! I met him when he was in his late teens. They have an institute on the East Coast. You can Google them.
Treatment gets costly but early intervention will make a WORLD OF DIFFERENCE.
Dr. Ariel Lenchner
(my specialty is early literacy and learning disabilities)
You have so many options right now and I'm sure it feels overwhelming. In fact, I'm pretty sure I posted a message similar to yours when we first found out. Your son is under 3 so you qualify for services at The Regional Center, which should be the first place you call if you haven't called them already. Please feel free to contact me directly and I'm happy to share with you everything I know and have learned over the years. I've been where you are and I'm more than happy to help!! Jill
Dr. Dave Traver M.D., FAAP 1261 E. Hillsdale Blvd. Foster City CA 94404 650-341-5300 phoneJenny
There is such a wide range of functioning on the spectrum of autism it's difficult to recommend the best treatment. 50% of autistic children will never speak according to 1995 statistic I learned at a PECS conference for lower functioning autistic children. It sounds like your child has some speech.
Hopkins pre school in Berkeley has provided services (including speech therapy)for many children on the spectrum starting at age 3. Alta Bates in Berkeley also has treated many early intervention and pre school age children. For speech therapy Michelle Garcia Winner is one of the best known in the area (San Jose)who specializes in high functioning autism and non verbal disorders. It sounds like your child needs lots of verbal language therapy, pretend play, turn taking, and eye contact. She may be someone to keep in mind when he is older, or for a referral. Eye contact may be the only socialization goal to work on and expect results for age 2-3. Several children without Autism do not engage in interactive play and interactive conversation until age 3-5.
I'm not sure of resources in the Walnut Creek Area, but my understanding is Insurance will cover speech therapy for children younger than school age.
Hope this helps! Pamela
Our three year old son has just been diagnosed with PDD-NOS. We are extremely upset and feel at a loss about what to do next. We are currently waiting for an assesment from OUSD but in the mean time were wondering if anyone in the BPN had any advice about behavioural techniques we can try at home to get us started while we wait for our assesment. Any advice about good books or other resources on the subject? Support groups etc. Most resources I have found on-line seem to address autism alone which is not the part of the spectrum that he falls under. Worried
As for behavioral help, look into Stanley Greenspan's books and don't be afraid to consider therapies that are used for autism. These range from step-by-step recipes for tasks to learning to read body language to understanding what causes behavior and how to encourage or discourage it. Take a look at ''The Out-Of-Sync Child'' and Carol Gray's Social Stories. Disregard anything by Bryna Siegel; her thinking is outdated at best.
Also, it would be prudent to consult with a special education advocate. Parents and school district administrators work best together when they treat each other as businesses, but it's difficult to not take it personally. An advocate will help you stay calm and focus. There are many advocates; an excellent one is Dana Lear, http://www.negotiatingthemaze.org Anonymous
It's hard to give advice without knowing specifically which issues you're facing because the spectrum is large and every kid is different. My son receives 15 hours a week of intensive therapy (called ABA), and if I had to do it over again, I would have started it immediately after receiving his diagnosis. I was a little bit in denial about it, but at some point it became impossible to stay there. Since starting ABA he's made at least 9-12 month's worth of progress in a 3 month period.
Check out autism-pdd.net for lots of information and an online support forum. Don't just rely on the school district for an assessment, call Behavioral Intervention Associates (www.bia4autism.org) for more information about therapies and treatment. There's an online support forum in the Bay Area (I think it's called specialneedsnetwork at Yahoo groups, I'm sure somebody will post the address). I also have a support group that meets every other week at my house. Please feel free to contact me directly if you want to ask questions of somebody who has been there or if you want to come to our group. Jill
If you feel he has a hard time in social settings, or with personal control (tantrums etc) have a look at the sections of autism writings that deal with this topic. If he has sensory issues and could benefit from OT, this is often covered by group insurance plans.
My son is 10, and we have pursued a lot of similar therapies in the 6+ years since his diagnosis with PDD-NOS. Now he has moved out of that diagnosis, and we work under ''learning disability'' but same basic symptom groups: Social pragmatic language and social skills, horrible handwriting / drawing (fine motor skills) and some other learning difficulties due to different brain wiring. But it will be years before you can get to such specifics!
Things that often help PDD-NOS as well as autism kids: routine, routine, routine; multiple sensory paths of learning, like saying, drawing/writing AND movement all to learn a given point; learning with music; social stories; lots of sensory input, if he's not defensive about touching.
Some books we have used (do library first! before buying any)
The Child with Special Needs Building Bridges The Out of Sync Child The Explosive Child How to Talk so Kids Will Listen (and Listen so Kids Will Talk) My Social Stories BookLastly, I will be happy to help you if you would like. My son's a lot older, but I have years of experience dealing with OUSD. There are plenty of other OUSD parents out there who can help, too. Please come to the OUSD CAC meetings - the CAC is like the PTA for special needs kids in OUSD. The meetings are usually the 1st Monday of the month. Good luck and continue to reach out for help. - Nancy
Our 2 year 4 month old son has not be diagnosed with anything, but has been receiving speech services for the 5 months and Infant Educator services for 2 months. A recent observation by a psychologist has resulted in a recommendation for ABA assessment and then therapy. The assessment is 15 hours a week plus 10 hours for parents and therapists. That's 3 hours a week one-on-one with our son. That seems like it's going to take over our life! We are feeling a little overwhelmed at this point especially given that both of us parents work full time. Any suggestions or ideas as to how to juggle all of this? thanks.
My 6 yr old received 1-to-1 services 3hrs/day for 1 solid year. I worked with a sr level therapist weekly for a year. he is now off that intense program but i still have weekly consultations to keep him on track. I use the strategies for my older son as well (9).
Before ABA my 6 yr old was having intense tantrums that were frankly frightening and totally out of control. He had severe OCD, anxiety, as well as his autistic/behavior issues. Now, OCD/anxiety are dramatically lessened, tantrums are minimal and much less severe and I've gotten control of his behaviors.
The bad - it is freaking exhausting! Other parents have absolutely NO idea what we go through. You have to stay on top of it almost in 5 minute increments throughout the day, every day, no break. I've learned ABA works only when parents are absolutely consistent. Once you start relaxing the strategies, the behaviors creep back up/get worse. It really is all about changing YOU so you can be more effective in dealing with your son.
The good-IT WORKS!!!!! Yes, its exhausting but not as exhausting as dealing with the behaviors BEFORE ABA. I'm a single mom with TWO special needs kids and I can manage it (though it is hard).
I have to constantly fine tune the strategies at least on a weekly basis. I have star charts up the ying yang! But it works for certain types of kids, including mine.
Here is an example: yesterday my younger son was with his babysitter. she said 'computer time is over. time to get off'. he went into meltdown mode - slowly creeping up to a level 10 tantrum. i heard it and came in the room. he was getting hysterical. PRE-ABA = we would have had a severe tantrum with kicking, scratching, clawing, biting for probably 30 minutes. POST ABA = i calmly said 'i will put the timer on for 1 minute then you will get off nicely'. i walked out of the room, put the timer on for 1 minute and he hopped off and said 'ok mom' and went to play in his room.
What have I learned? With my son, he needs to feel control. So by giving him 1 minute to get off, he feels in control of the decision to get off. Pre ABA I would have forced him like a mack truck to get off and totally clashed with him. It is that small of a fine tuning that totally avoided a meltdown. I give a little, he gets a little = we all win.
I would highly recommend doing ABA while your son is young and you can help him gain control over his actions. it gets way worse when trying to do this on older kids. You have a chance now to help him learn a better way to deal with his feelings/emotions. GOOD LUCK!! Been there, it DOES work
Let me be straight...All of this does takes over your life. Before I had my son I was a ph.d. level researcher. I knew I couldn't go back to FT work, so I took a PT job teaching and even that was tough. I spend most of every day fighting the regional center or insurance to get or keep services for my son, and when I am not taking calls or writing letters, I am participating in my son's 25-hour a week ABA program or taking him to Stanford for PRT (a type of ABA that teaches parents skills to increase their children's use of functional language). My husband has also had to make sacrifices, including taking a lot of vacation days to help out at home and participate in ABA at home and PRT at Stanford. I will add that I am currently 8 months pregnant and have spent my entire pregnancy stressing about my son and fighting for what he needs.
If ABA was recommended by a psychologist with expertise in working with young children with developmental delays, I would take her recommendation to heart and start ABA, ASAP. How involved you want to be may be your choice. Some parents have to work outside the home (for money or their sanity). Others of us are lucky enough to be able to stay home and participate in ABA more fully. Personally, I'd like to think my active participation in my son's program, keeps the quality of his care high, but there is no way to know for sure.
I dream of going back to work PT soon, but I have chosen to make my son's therapy a priority right now, as this is a critical period in his development. I do still believe that if you can set aside time for activities you enjoy that don't revolve around ABA, you may be happier. We don't have a handle on how to do that, yet, but we are working towards this goal. You might also consider getting on some of the local Yahoo listserves for parents of children with special needs (PPSNK, autisminterventionbayarea). anonymous
ABA turned him around, got him connecting and communicating with the world and people around him. We saw dramatic changes in his ability to communicate almost immediately. I was 'at home' with our other son who was about 5 mo's at the time. So the whole situation was intense. We had therapists in the home with us during all of his waking hours...but they were a pleasure to have around. I got used to it. I didn't get out a lot. I was glad I was home, because even though I wasn't actually participating on a daily basis (it's more 1-on-1 with the therapist), I totally 'got' the approach and could carry it into our home-life. (Things like this really only work when there's synergy with therapists and how the family works at home.)
You asked about working, though. Early intervention therapy is meant to happen ''in the least restrictive environment for the child''. So if your child is in full-time daycare, it happens there. We had about 4 months where it was happening in-home. Then he was at a preschool 2 mornings a week and the therapist was there with him. Then he started at a 4 day/week school and the therapist was with him there for another 2 months (until he turned 3).
We worked with STE Consultants (highly recommend). The thing I found most valuable was the weekly team meeting where all of the therapists and the clinical director got together to discuss progress. I was there for every meeting, asking questions, getting advice and insight, figuring out what to do in the home.
Here's what I would recommend to a working family. Every week, one of you takes a personal day and is at home to 'be around', observe or participate in the therapy. Make sure it's on the day of your team meeting. You'll feel involved. You don't have to be there every second, honestly. But on the flip side, I wouldn't want all of it happening while I was away, because it's so helpful for the parent. If you can't make a team meeting, arrange to call in.
It's such an important time in brain development, you'll see measurable improvements -- and this intensity level won't be forever. But it's worth it. Good luck. PS-6 months after our ABA wrapped up, I'm back at work full time. My son's in a OUSD preschool in the morning and 'our preschool' in the afternoons. - anon
We're starting ABA (Applied Behavior Analysis) with our 2 year old son and I'm wondering what to expect and how to get the most out of this opportunity. Does anyone one out there have experience? It sounds a bit intense. We've been allotted up to 25 hours per week, in-home. He qualified for services through Regional Center East Bay. He has a severe speech delay and has delays in his social/emotional/play/motor to varying degrees as well. He may be on the high-functioning end of the Autism spectrum. We don't have a diagnosis yet.
I was blown away by how many hours it is. I just assumed that it would be once a week, like his speech therapy. But I guess this is what early intervention is all about. I'm eager to get started, but I don't really know what to expect. I'd love insight from anyone who has gone through it. Here my over-arching questions:
- We'll be working with STE Consultants. Anyone have experience with them?
- What is it like having therapists in the house all the time?
- Were you involved with the therapy, or was your child working one-on-one with the therapist? (Did you get to learn strategies to help/guide/teach your child?)
- Did they support your child in a day-care or pre-school setting? How did that work?
- How can we, as parents, help this early intervention to be as fruitful and successful as it can be?
- Is there anything that you know now that you wish you knew when you started off?
Thank you! Anonymous
- We worked with BIA, who I simply can't rave about enough, so I don't know anything about STE.
- You get used to having people in your house all the time. At first it was a little weird, and I did a lot of extra cleaning, but after a while they just became like family members and I was used to it. It helped that I adored all of the therapists we worked with (I'm still in touch with all of them on Facebook, 3 years later) and there was practically no turnover in the 2 years
- I was involved in the planning of the program but not with the actual carrying out of it. This is because when I'm in the room my son prefers to sit in my lap and snuggle and not do any work, so my presence was more of a hindrance than a help, that may not be the case for you. If it's a good program they will work with whatever you have to offer.
- We got classroom support, mostly in the form of evaluations and recommendations, and also IEP attendance (that's a whole other thing you don't have to deal with yet!)
- As for how you can help success, I would say just keep an open mind. These guys know what they're doing, and the first thing I learned about ABA was that it is ''counter-intuitive'' to what you think should work; a lot of it just went completely against my natural instincts as a parent, but that's kind of what autism does to you, it forces you to change your expectations about what kind of parent you thought you might be, because it's in charge, and not you.
- I don't think there's anything I know now that I wish I knew then, we were lucky that we had such a fantastic team and we saw immediate results. My suggestion for you, just beginning this autism journey, is to find a support group, either online or not (online support groups tend to fit your schedule better) because you're going to need the help and support of other parents who are where you are or have been where you are, to help get you through this. Good luck. Jill
It is not easy to have people in your house all the time, but you will become accustomed to it. Therapy can also be done on outings if the therapists are open to it.
If you want to make sure the ABA is successful, you must know what your child is working on and be sure to reinforce it. All will be for naught if you cave to temper tantrums, or it just seems like too much work to do it the ABA way. Nothing is worse than having to start over when the therapist arrives every day. Julie
ABA is provided in a 1:1 setting, by a behavior tech (up to 2 or 3)/supervised by a senior consultant and is based on targets or goals in which data is collected to measure progress. The targets are typically based on an initial assessment. The targets, especially if these are regional center funded services, will focus on getting your child ready for the community - communication, potty training, behavior, eating, dressing and self help skills.
Studies have proven that a program of 25-40 hours per week is the most beneficial to young children r.
I have worked with STE on special education cases and have had the opportunity to work with many ABA providers across the state. I can only speak as a special education attorney and say they are excellent at what they do. To answer your specific questions:
1. Yes, parent training is always involved and you should ask STE how much, when and how you can learn.
2. Prepare your house for therapists and therapy. Have an area dedicated to ABA therapy it will definitely make the services go more smoothly.
3. STE and other ABA providers can support your child in preschool. Regional Center should be consulted and approve this service. However, by the time your child is 3, the school district will take over. Contact your preschool and talk with STE. The targets and goals (as well as the data) will be collected at the preschool site and the 1:1 behaviorist works with your child to contrive opportunities to socialize, communicate and follow the program.
4. As parent, the best thing to do is to stay on top of the program, join some autism parenting groups and read up on ABA. Get copies of data sheets (ask STE to provide them to you at the end of each week), start a binder and keep records. Let STE know that you would like some training (this is almost always part of the program) and how can you be involved.
5. Going forward:Get all of your providers to communicate with one another. Sounds like you may even want to ask Regional Center for more speech. If your providers have each others reports and records, they can capitalize on what the other is doing. Consistency and generalization across settings is key. Mandy
My son was recently diagnosed with autism. CHAI was immediately offered as a therapy option by RCEB and after interviewing with them and other places we decided to go with them. Has anyone had any experience with them? Also I am looking for recommendations for support groups, playgroups( I live in Oakland), and Dr's within different specialties( a developmental optometrist to do a visual evaluation) that you have had positive experiences with. It seems like there are a lot of people out there that are going through this( 1 in 161 children, 1 in 41 males) but despite us being pretty social we don't know anyone personally that's going through this. I think it would be both helpful for us and the other people involved so that we can share information and support. I recently saw a womans post about Aspergers and the amount and sincere compassinate response she got really made me proud to be a part of this network. The BPN was on vacation when we got our diagnosis, and after spending that time advocating for our son I have looked forward to reaching out to others in our shoes. Thanks in advance and look forward to hearing from you! lily
First off, when your child turns 3 you will be transitioned from RCEB to Oakland Unified. That's good news in many ways - Oakland has some great programs for kids on the spectrum. The main parent support group for Oakland parents of students with special needs is the Community Advisory Committee, or CAC for short. We meet usually on the 1st Monday of the month. Contact CAC to be put on its email list at firstname.lastname@example.org
Also, there is a local special needs maillist you can join. It's a Yahoo group based listserv called Special Needs Network. Search for it on Yahoo and join right up.
The schools that are not inclusion schools - the ones that are specialized schools for kids with various needs not served in a mainstream environment - all have parent groups too. So depending on your child's school placement, you may have a built-in support network.
I hope this helps, and I look forward to meeting up with you in one of the other mail forums available! - Nancy
My 2 year old son was disagnosed with mild autism / PDD. He was referred to CHAI (Oakland CHildren Hospital Autism Intervention), but we're not sure that's the best place for him. Anyone have had experience with CHAI or BIA (used to be in Emeryville, now in Oakland) or any other early intervention centers in East Bay? Thank you!!
We have done a Lovass type home program for 3 years, I am a divorced mom with three little ones, my son is six with autism, now after the program he is social and verbal, it took a toll on my little girls and my finances to be able to stay home and do a 40 hour progam but I did it because alot of the public schools had inadequate programs. But at this point I am burnt out and at some point will need to find work and wondering how and when most parents stop these programs?at what age do you stop? how to transistion? does anyone know of other states like CA that have a idea of how to work with autistic children in school? I feel quilty for moving on but its very difficult. Nat
Does anybody have any personal experience with chelation as a treatment for autism? I'd love to hear all about it. Does it work? Is it just quackery? Are there any local pediatricians we can work with who have some expertise in the area? Feel free to contact me directly. Jill
As of the date of the article, I don't think the child's cause of death had been officially determined, but if you're considering chelation therapy, it might be worth following up on this story. Anon
Granted, the man who tends this website does have a point of view -- and he pretty much thinks chelation is quackery, but at least he puts together information from reputable sources, and gives additional leads. Might at least be worth a look. Karen
I am newly pregnant with my second child. My first child was diagnosed with autism at age 2. While he is doing amazing after receiving incredible early intervention, I am quite nervous about baby #2. After getting the diagnosis for my son, and doing a great deal of research, I changed the way my family eats, I now buy almost all natural and organic products, etc. But I'm wondering if there is anything else I can do (take certain supplements, eat or don't eat certain foods, etc.). If anyone has been through this, I'd love to hear your advice. worried mamma
A close relative's 4 yo son is delayed in his language skill, does not want to read and has a hard time learning numbers. He seems to play well in a 2 kids group but beyond that, he does not seem to interact with them well and retreats to play by himself like hiding under sheets, tables or plays with his airplanes. Recently family members and some of whom are in the medical profession told the mom that her son may be in the autistic spectrum and to seek help. The mom told the pediatrician about her concerns but the ped just said her son is just quirky, like the Dad, without even seeing him nor a more detailed examination. To family members, the Dad is a case of undiagnosed autistic with many obsessive behaviors and socially challenged. He is recently unemployed and probably will never find employment again. What is especially difficul to tell whether the son is truly languaged challenged or not is the family is trilingual with French being the dominant language. The most disburting symptom is the son has an extremely high tolerance for physical pain. He would crash his body on objects while playing and never even says owie. He doesn't seem to learn from the painful situation and will repeat it. Family thinks may be something is not wired properly for pain signal to reach his brain. Finally after much efforts, the ped agreed to refer the mom to a long list of specialists and Stanford being one of the institution. But the waiting time is at least 6 months. The next referral was for a Developmental Pediatrician who does not accept insurance and an initial consultation is at least $400 per hour. Family is in San Jose area and can use words of wisdom from families that have traveled this journey...where to seek the right help without severe financial strain. Family was in denial and now starting to seek help. Much appreciated.
Since early intervention is key in autism spectrum disorders, and since IDEA covers pre-school children as well, many districts have services. My district has a Diagnostic Team, including school psychologists and speech therapist, who evaluate children suspected of having special educational needs.
Might be something to look into. There's also the Regional Center. I'm not familiar with services in your area, but a little Googling would probably nail down where these folks are located and whether they can help. Sonia
I am planning to try for a baby, but have to admit that a fear in the back of my mind is the probability of having a child with autism. While I know there isn't concrete evidence of genetic links, it seems that researchers are leaning that way. My husband's family (all on the father's side) includes a sister with an autistic 7-year old, a cousin with a highly autistic 11-year old, another cousin with a 7-year old with Down's, and a 17 year-old nephew with ADD (same cousin). In other words, in a family with 8 cousins/peers on the father's side of the family, three of them have children with developmental disorders. While I know these kids have their own joys, I am obviously anxious at the prospect and hardship/challenges it brings. I am 36 years old and already nervous about the increased chance of complications. My questions are: 1) is there hard evidence of this tie?, 2) any advice on how to approach this fear/risk?, 3) how can I discuss this with family without offending them?, and 4) are there early/pre-natal indicators of autism in the womb? Thank you. Feeling guilty but scared
I just visited my sister's family. She has a 3 yo girl. I have repeatedly felt something was off with ''Nell's'' development. I feel she may have some form of Autism or Sensory Process Disorder. She has many non-typical behaviors for her age. I base this on development of my own child, contact w/ friends' kids, and kids' behavior at my girl's daycare. 'Nell': tiptoe walks, does 'echolalia', speaks in a bizarre lilt, squeals randomly, is obsessed w/ hair, rarely makes eye contact, will play with strands of others' hair, saying ''Hayurr!'' repeatedly, gets emotionally overwhelmed easily, etc.
However, she enjoys contact, giggles, is sweet and gentle, loves books, collecting things outside...So she isn't fully enveloped by a miserable state of being. Here's the rub. My sis and her hub. are completely oblivious to any of these things as indicators that something may be wrong. I am shocked their pediatrician hasn't noticed. I am sad sis and her fam. do not have social contact w/ anyone with similar-age kids. They live in the country and haven't sought socializing opportunities for Nell. They may start her in a preschool this Aug. I feel that may help them observe a cross-section of her age group. Maybe they'd see Nell isn't ''like'' most other kids.
I do not have a great emotional bond with sis. She's not 'California' and I am, to put it briefly. I have tried to have deep talks with her in the past. They mostly end w/her crisply thanking me for advice then blowing it off, or w/ her getting angry or mocking me for whatever I am sharing with her. She resents me for my ''having an easier go of life'' than her. She is very intelligent and has a devastating ability to cut me down and cut me off if I displease her. I fear her and I love her.
Nell has a peanut allergy which causes dark under-eye shiners. She has eczema. I worry that her behavior, sunken eyes and eczema will target her for scorn by her peers. My sis as a kid was bullied due to her own odd, shy, intelligent ways. My heart breaks as I see her daughter sewn deep in a cocoon of behavior and impulse and allergy. I feel sad that sis and her hub may never see these things. I am at a loss. Am I over-reacting and out of line, or if not - should I share what I feel about Nell? I love that little skinny scrap of a niece. I don't want her to hurt. But I don't want to lose my sis by dumping on them my possibly unfounded fears. Advice? scared little sissy
Even pediatricians in urban areas miss the diagnosis, so it's important to be proactive. Also, since the earlier the intervention, the better, I would recommend mentioning it to your sister (or asking someone else to mention it) so your niece can get early intervention (from the school district after age three years). Then you'll have done everything you can do, and then you can let it go.
Allergies are common in kids on the spectrum, and some treatments take that into consideration. Some diet modifications can help some kids (gluten, dairy, etc.) I hope your sister can hear it and get help for her daughter. anon
You are in a very difficult position because if she does have developmental or speech problems early intervention is critical, but that is not going to be possible unless her parents are on board. Is there someone who they would be more receptive to? Another family member or a friend? If you know who the child's pediatrician is you could share your concerns with her and have her keep an eye out for the behaviors you describe. If they do start her in preschool, perhaps a preschool teacher could be of help. If you do tell your sister you think her child has autism, I can pretty much guarantee you will be met with anger and defensiveness and nothing productive will be achieved. Mom of a special needs kid
Stop comparing. Stop talking. Your sister heard you and sees other children. If her child has food allergies she is dealing with a lot. Yes, there is a link between food allergies and Autism. Talk with your sister about maybe how stressful her daughter's allergies may be for her. Get into her world with no judgement and listen. If she trusts you and feels supported she may be open to listening to you.
My son has a speech delay. I sensed it before anyone did-even my doctor. What I strongly resent and will protect him from is the way relatives and friends globalize the delay as if that is all he is about. I have seen how relatives will act differently around him. We all are different. Some of us are differently abled. What you can do is button your lips and gather resources to give your sister if the need arises. wishing your niece the best!
My 39 month old boy does seem to be an odd one. Ever since he started speaking he has had immediate and delayed echolalia, reversed his pronouns for a while, does seem to not interact too much with other kids (but is not scared of being in school). To me the most noticeable issue is that he never seems to talk to any other kid. He will happily follow a kid around but nothing is said. He hit all his motor milestones within the age range and does not show too many typical signs of autism. He maintains eye contact, is not a picky eater, no spinning objects, no self-destructive behavior etc. He does repeat entire books to himself - but when I ask him what he is talking about, he is always able to tell me.
He is very verbal but his usage seems to be developing somewhat differently...he repeats random phrases from time to time and does not seem to know why he has said a particular thing. He does have one seemingly rare speech peculiarity...he re-emphasizes the last sound in certain words...eg milk when he says it sounds like milk-lk-lk-k-k-. Neither his pediatrician or speech evaluator know what this is.
Sometimes I think he is not able to comprehend what is being said, even though I know he is trying. The other day I said, 'do you want to go now' and he echoed it back to me as 'do you want to bring a cow?' Could he have some auditory processing issues whose symptoms mimic autism?
He has passed a recent hearing test and I have gotten him evaluated twice. The second evaluator reluctantly gave him a pdd-nos diagnosis but told me that he might just 'grow out of it.' He does seem to have some sensory issues - big stores and malls cause massive tantrums, he is not really into imaginary play in a big way (though he does run around in a spiderman costume), describes every single thing he or anyone else is doing and goes into a trance from time to time.
On the other hand, he is a smart little guy. He makes some cool connections, and is very affectionate with people he knows well. He is an intense kid who seems to be improving but is not really ''on track.'' I want to get help sooner rather than later as I hear early intervention has the best results. But I am not sure what the problem really is. Others have noticed some peculiar speech stuff too - a friend thought he had a monotone going but even this does not seem to be consistent.
Any insights and advise is GREATLY appreciated. confused
I can tell you with certainty, however, that my son, whose diagnosis of pdd-nos at 33 months was not given reluctantly, always had excellent eye contact, never spun, never was self injurious and from the day he started speaking, he repeated what he heard. We were also told that he might grow out of it, but instead he grew ''into'' it and his diagnosis was changed to autistic disorder just past the age of 4.
It's possible that you might never get an answer to your question, in which case you'll need to be able to answer, for yourself, how important it is that you find out. I know that your goal is to get help for your son, and as soon as possible, in which case I would advise you that with a diagnosis of pdd-nos already in hand, you should head to your local school district (since he's older than 3) and start some OT and speech, possibly a home program, in addition to school. There's nothing wrong with too much intensive intervention; worst case scenario you'll find out he never really needed it. Actually, the *real* worst case scenario (IMO) is to find out later that he did really need it but you didn't do it. While it's never too late to start services, it's true that the earlier you do it, the better he'll be in the long run. Feel free to contact me directly if you want. Jill
I used to ask myself the question ''Autism or not?'' just like you. The ''A'' word is scary at first and no one wants that label for his or her child. However, in some ways, I've come to believe that whether it is or isn't autism doesn't matter. It sounds like your son, like mine, has echolalia, challenges with social language and social skills, difficulty with auditory processing and mild sensory issues. Whatever you call it, these are real issues and real challenges and you are right to trust your instincts and seek out support.
Getting access to early intervention and teaching techniques that can help your son develop the skills that don't come naturally to him is what's important now. A diagnosis is about your eligibility for those services and therapies, not a judgment about who your son is or will be.
We've had a wonderful experience with OUSD's early intervention program. My son goes to a language-enriched preschool program and has made remarkable progress in the past year. If you're not in Oakland, your district may have something comparable. The East Bay Regional Center is also a good resource.
Please feel free to contact me via email if you'd like more information. I also write about raising a not-so-typical child at http://hyperlexicon.blogspot.com/ Your son sounds like an awesome kid and the label won't change that! Christa
Write a letter to your school district asking for a comprehensive psychological and pragmatic speech evaluation and if possible walk it into the office yourself and have them date stamp it. I am not sure what school district you are in, but try looking up the office of Programs for Exceptional Children or Special Education and address it to the director of that department. There is a process where they have to respond within 15 days, you sign a consent, and then they have 60 days to do an evaluation not including breaks, so it may not all get done before summer at this point. Once they evaluate him, if he qualifies he can be placed in a public preschool immediately that will address his needs. You can include a written report from the doctor that gave the PDD-NOS dx in his school evaluation. Also, if you haven't already, you can get an evaluation from the Regional Center to see if he qualifies for any services there. If you want to get him into some kind of intervention while you are waiting for all of this, there are preschool aged playgroups at Word Works in Oakland that focus on social skills and language or call the Angel Network in San Francisco to find an integrated playgroup. Also, have him evaluated by an occupational therapist for his sensory issues. You might want to read the book ''The Out of Sync Child.'' Good Luck. Been There
I would say you have valid concerns and might consider having your child evaluated. If you can get referred by your pediatrician your health insurance might cover at least part of it. The advantage of testing now is that if your son needs help in school or out if it, he can get it early, and at the very least you will be aware of areas he might need help with later.
I would love to hear if anyone else has insight into this particular odd stutter. If the stutter is causing him problems, you can get free speech therapy through your school district. It helped my younger son a lot, and made it easier to get him access to other services once he was in school, since he already had an IEP for speech.
Don't worry, but do follow up on this. stutterer's mom
Through the Regional Center, we have recently received the following services: speech therapy, occupational therapy, in- home behavioral/ABA therapy. We are also giving him some supplements like fish oil, etc. And I have to say for the past four months, we have seen some tremendous improvements. He still has a long way to go to catch up with his peers, and he still has the echolalia and other speech issues. One thing we are going to start doing with our behavioral therapists is have some supervised/guided play dates, so that the therapist will help my son interact with the other child.
So, I'm not sure if I'm answering your question or not, but from my non-professional opinion, it does sound like your son may fit somewhere on the autism spectrum - at ''high functioning'' level, and that he may benefit greatly from therapy. I'm not sure if you've already done so, but I think the first step is to contact your school district to see what services they will provide since he is over 3. J
I think my almost 3 year old son has autism. We have a Dr. appointment tomorrow, but my day care provider has noticed the same things I have. It seems like he's on the milder end of the spectrum, but all the web searches I have done have very depressing prognoses. Can any of you tell me what autism is like when a child is school age or older? My son started speaking when he was 1 but stopped making progress when he turned 2. He can't start or keep up a conversation, and instead repeats exact phrases he has heard from his favorite tv shows. Although he makes great eye contact with me, his teachers at daycare say he sometimes avoids eye contact and prefers to play by himself. He loves to be cuddled, unlike severe autistics, and expresses affection to me and his dad. He points and wants to share what he sees but has a hard time expressing himself. He doesn't have any motor deficits, but sometimes flaps his hands when he is very excited. Not often, though. Does it get worse after 3? How much worse? Was your child like this at 3, and if you started treatment, how much improvement did you see? I am very distraught about this and would really like to hear positive stories of how your autistic child is doing. Very sad
Your son sounds a lot like mine did at that age, except mine didn't point and want to share, so that's actually pretty good news for you. Pointing is the #1 diagnostic indicator of autism, so the fact that he does point is really good. For us, things got really bad around 3.25 and stayed bad for about a year. But then things got better, and now he's almost 6 and in a regular ed Kindergarten.
You'll hear a lot from a lot of different sources about miracle diets and miracle therapies and miracle supplements, but keep in mind that not every treatment is going to work for every kid, and you have to do what's best for your child, as only you know. However, intensive treatment as soon as possible, no matter what kind you choose, will give your son the best chances. It's a lot of hard work for both of you, and you'll have a lot of different fights on your hands and it's not going to be easy, but hard work now will pay off later. My son never spoke except to recite things he'd heard on the TV or the computer, and now he asks meaningful questions and can have a conversation with a peer.
I'm sorry you're sad, I was in your shoes 3 years ago and I was very sad, too. Please feel free to contact me directly if you want to talk more. Jill
I guess that I went into denial about the possibility of autism, and focused on something called ''sensory integration dysfunction'' I took her to the pediatrician who didn't want to label her. So, we recognized there was something - we didn't want to call it autism (which I think is now being overdiagnosed, just as ADD was a few years ago) but we did know that there was something. Among the things we did - we focused on routine, and talked to her a lot if the routine was going to be broken. We enrolled her in gymnastics and music courses. The music course was a HUGE help. At the age of 4, a new teacher at her preschool asked if she was an early talker, because she talked sooo much and soooo well. We talked her through loud noises and convinced her that if she understood what they were, she didn't need to be afraid of them. (she now says about the blender ''I am not afraid of it, but it annoys me'') We worked with her a lot on eye contact. Today she is 7 - she is in first grade, reading at a 3rd grade level. She is also in an Aikido class and taking piano lessons at school. She is also making good friends at school, at brownies, and in the neighborhood. Quite the change from the little girl who never wanted to be with anyone. There are still oddities about her - but overall she is great.
Here is the moral of the story. Take a deep breath - you know your child better than anyone else. Do research, read, talk to other parents, and recognize that your child is unique. Work with your child to overcome some of the issues, but understand that the issues are real. Don't let anyone put your kid into a box. Listen to what the professionals say, but trust your own instinct. Lee
My 6 year-old son has language delays & ADHD....the school district has done some recent assessments & they say he is right on the border for autism. I have always insisted that he is not autistic because he relates well to his family & can read expressions very well.
But, I have a question. Can someone be autistic & be able to read people's expressions quite well but still not understand other signs of social interactions? I was watching my son in the playground the other day & he just didn't relate like the other kids. He talks too close, doesn't want anyone else to get too close, gets mad when someone else wants to do the same thing he is doing (other kids usually like it when another kid joins them).
We see a behavioral pediatrician & he says my son is not autistic...I guess I'm trying to figure out if there is ''social'' type training for autistic kids that would benefit him. Thanks for any answers!
In answer to your question, YES. There are plenty of programs like the one you mention. I do not know what they are in your area (I'm in the south bay) but one of the programs down here is called Friendsmart in Mountain View. The classes are called ''social skills'' classes.
Here are some links from the Bay School's website about autism (The Bay school is a school for autistic children in Santa Cruz): http://www.thebayschool.org/links/links.html
If your child is ''borderline'' some of the resources will apply.
Here is a page from my website about autism resources. Check out the Handle institute - they come highly recommended. http://www.anachronisticmom.com/Medical-KK/Autism-K15.html
I would recomment this yahoogroup ''parents of special needs kids.'' It's located on the peninsula, but has excellent resources - for all kids with any special need.
And finally, here are some links from berkeley parents network:
strawberry canyon social skills camp: http://parents.berkeley.edu/recommend/summer/strawberry.html#social
BTW, I once read about a wonderful program -- a theatre program - used for asperger's syndrome children, where they were taught how to respond ''emotionally'' in situations. It worked well. Turns out that some of our children process social interaction in a more cerebral fashion -- they don't just pick things up by osmosis. And no, that doesn't make them diagnosable. Protect him, get him some classes and help him practice and ... Good luck! another mom
On the other hand, one can be typically developing and also have trouble with social interaction; to not relate like the other kids. The question is, does your son need the ''label'' of autism in order to do well and thrive?
There are lots of groups that work on social interaction, with autistic and non autistic kids. IMO, any kid would benefit from a social skills group, so regardless of your diagnosis, it wouldn't hurt to just find one and sign up. I'm sure you'll get responses from folks who run groups, I'd encourage you to contact them!
Feel free to contact me directly, as well. Jill
Another site which focuses on Aspergers and has resources listed for teaching social skills is http://www.udel.edu/bkirby/asperger/
There are other causes for difficulties with social interaction. You mentioned that your child has language delay and ADHD--have they ruled out Fragile X Syndrome? Also, has his hearing been thoroughly checked? He may have trouble understanding what other kids are saying if his hearing is muffled at all (infections, fluid build up) So he might avoid playing with other kids or learn ''bad habits'' in terms of personal space for speaking. Best of luck. teacher
He is currently enrolled in a weekly class on social skills and social language use through Communication Works, in Berkeley. I think it has been very helpful for him - I would definitely recommend you check it out. You can get more information on their website at www.cwtherapy.com. Good luck! Emma
We are struggling with how to deal with our 4.5 year old son's challenging behavior. Some background: He has been evaluated by Childrens' Hospital as well as the Regional Center of the East Bay. One group of evaluators said he did NOT have autism, the other diagnosed him as being on the Autistic Spectrum. They both agreed he had a challenging temperment and significant speech and language delays. He is currently in a special ed preschool through the school district, where he is getting speech therapy and occupational therapy.
I feel great about his preschool program and the help he is getting there. However, it has become clear to us that we really need help in dealing with his aggressive, disruptive, unpredictable and contrary behavior outside of the classroom. I feel like we need to be seeing either a child therapist specializing in spectrum disorders and the behavioral issues that accompany them; or possibly a behaviorist to work with us on a regular basis. I'm just not sure what kind of a professional would best suit our family and our needs.
Are there others out there who have had success in working with someone on their child's challenging behavior issues? Any approaches you've found useful, or professionals who have helped you would be greatly appreciated. sad & frustrated mom
You didn't specify the type of challenging behaviors, so this may not be completely relevant. It helped my son at about the same age when tantrums and aggressive actions were the problem. The first thing that helped was something called ''floor time'' therapy; we saw Jane Rubin, PhD, 510 704 8759 in Berkeley on Milvia for about 3 or 4 months, and the tantrums largely disappeared immediately. It was like magic - they really just STOPPED.
The second thing I would recommend is a behavioral assessment. There are several good organizations out there. BCRC, www.bcrc.com, is one I've worked with through my son's school. Carl Schrader is the head of the organization. They contract with the school district for aides to help in the classroom, but I think they will also come to the house and help assess what's going on. They can then help you with general strategies to help (like creating a ''what are we doing today'' board to help show the day's schedule visually, which can help organize you son's day for him - which often helps calm these guys down.)
Depending on your school district, you may get some help from them with this too. If your son needs behavioral help in the classroom to ''keep it together'' while in school, the district will arrange a behavioral assessment. You can ask them to include a home assessment component. Focus on the fact that if you are not consistently applying the same principles at home, the school program will not work as well. (It's true!) This will help sell them on paying for it.
Speech/language therapy is a huge help. Some of the reason for his behavior is probably reaction to a very mysterious and inconsistent world. If he doesn't understand what is being asked of him, and then people get cross with him for not complying, it's completely understandable that he would get mad. The faster you can help him with both comprehension and expression, the better. Visual aids like a planning board can really help with daily stuff. I probably have a Word doc of the last one we used, so let me know if you want me to dig it up.
Last thing I would suggest is a book or two. I found some of the ideas in The Explosive Child by Ross W Greene helpful. Actually it was mostly helpful to read about other kids who were as bad as or worse than my own... as I had already implemented a lot of the strategies he had talked about. But I only read it last year.
I hope this gives you a couple of places to try. I'd be happy to talk or email offline too. My son's now 9, and while he does still have explosive outbursts, they are far rarer than when he was 4. Also we know the triggers far better now. Nancy
Here's a link to a sample letter: http://www.bridges4kids.org/IEP/FBAPBSsample.html
If the district says no, then send a similar letter to Regional Center, and tell your case worker that you are willing to go to Exceptions and Appeal if necessary.
Both the school district and RCEB have behavioralists. You could definitely ask RCEB to send someone like the Lovaas Institute, which is a RCEB vendor locally.
At some point, it would be helpful to have a diagnosis by a trained, experienced neuropsychologist. If the testing was just 2 hours done in a tiny room, that's not much help. Elsewhere on the website there are some recommendations for neuropsychs. Anon
I'm just beginning to read about the autism and dairy intolerance link and feel a little panicked about my 11-month old, who definitely has a dairy intolerance. Does anyone have any ideas as to the percentage of kids who have dairy intolerance, versus those who go on to have the onset of autistic-like symptoms around 1 year and a half? While my son is very social and outgoing, he does exhibit behavioral quirks that worry me (selective listening, lots of babbling but resistant to gestures/signing, doesn't wave hello, goodbye). Am I just being paranoid or do I need to put him on a strict gluten dairy-free diet and (maybe even) have him tested? Advice, please! worried mom
My sister and brother-in-law have a daughter who just turned a
year old. She has been described by a nuerologist as globally
developmentally delayed (50%), probably having a communicative
disorder or disability, possibly on the autistic spectrum and
not probably, but possibly having rhetts. She is very very
cheerful and smiley, but is just starting to sit up, does not
crawl or walk, does not babble, mimic sounds, track or make eye
contact or respond to her name or other sounds. More testing is
being done, but they won't have a specific diagnosis for at
least a month (that would mostly be if it is something testable
like rhetts) or much much longer. There's more, but I wanted to
paint just enough of a picture to ask those who have been in a
similar situation, or know someone who has, what are good ways
to support my sister and brother-in-law? what are things we
should definitely not say? what are things that might be helpful
to say or do? I've been doing a bunch of reading (as are they)
and I know everyone is different, but I thought it might help to
hear from people some specific ideas of how to be supportive.
seeking to be a supportive sister-in-law
It sounds as though they may be dealing with Rett Syndrome, but if your niece's diagnosis is, ultimately, that she has an autistic spectrum disorder, I would highly recommend reading the book LET ME HEAR YOUR VOICE by Catherine Maurice. While her children's ''recovery'' is extremely rare, she gives an excellent overview of appropriate therapies and the history of the disorder.
I wrote an essay several years ago about things our family had found most helpful, titled ''Being There: What You Can do For Parents When Tragedy Strikes.'' I'm sure it's not a universal solution, but I just wanted to put together some ideas, some things I wish I'd known earlier when I struggled to comfort pals who'd gotten hit with scary and sad situations.
You can access the piece at the following URL, if you think it might be useful, and you don't have to register or anything to read it:
The most important essay I've read over the years, however, has been Emily Perl Kingsley's ''Welcome To Holland.'' She's an outstanding writer, and (I think) manages to be both profound and comforting in this short piece, without ever venturing into bad Hallmark-card world. The ''official'' version is available here:
Again, I commend you on your approach to all of this, and I hope things turn out well for you and your family.
My son was diagnosed with high-functioning Autism a few months ago on his 3rd birthday. I really want and need to get plugged into Autism resources, communities and groups. I could probably post a question a week on BPN, but recognize there is probably a better forum for all of my Autism-specific questions. So please share, point me in the right direction... online boards, communities, blogs, books, groups conferences. Also, is there anything local/east bay I should know about?
As background to help guide recommendations, we anticipated the diagnosis and have been doing intensive ABA and speech early intervention for the last year (through RCEB). We're ready to move forward, eyes open and want to have all of the resources possible at our disposal as we do so. I see that my son has a beautiful and unique mind and I want to celebrate and foster it, while addressing challenges that might get in the way of his learning or making friends. He's really high functioning, and since he's only three, it's hard to know what that really means.
I really appreciate and look forward to your recommendations. -Mom of a High-functioning Autistic Boy
Not that this changes the need for other resources, just thought her perspective as a neurobiologist was useful. good luck. anon
''Well, both the autism e-mail lists I am on are based in Washington, so a lot of the announcements & so forth would not be helpful to her. I'm thinking that a local support group might be more appropriate for her. Fortunately, they are springing up all over the place. (Well, it's not really fortunate, because it means that more & more people are being affected by autism!)
If she goes to www.tacanow.org (Talk About Curing Autism Now), they have a list of local groups. And they have some information on their site.
The Autism Research Institute has a site at www.autism.com.
And there is also www.generationrescue.org , which can set a person up with a ''Rescue Angel'' in her area -- an autism parent who has been in the trenches a while, & can offer advice & support. (This is the group that Jenny McCarthy has thrown her support behind.)
Do warn this woman that people in the autism community are VERY opinionated, & everybody thinks that what worked best for HIS kid is what EVERYBODY should do. The fact is that autism is VERY complicated, & there are a lot of nuances & variables. Tell her not to let anybody push her around. Anne
My son was diagnosed with HFA around his third birthday as well. He's seven now and doing great in a mainstream 1st grade class. Early intervention really is key, in my experience, as is a positive outlook of acceptance and a love for your child's gifts and strengths. Sounds like you've got both of those!
Check out The Thinking Person's Guide to Autism, website and community with national reach, run by a bunch of local Bay Area folks. They have essays and articles every day by parents, practitioners and people who themselves are on the autism spectrum. It's a wonderful source of positive support and science-based information. http://thinkingautismguide.blogspot.com/
The book ''Quirky, Yes. Hopeless, No'' has tons of advice and ideas for working with everyday challenges.
Finally, I write about our family's experience at http://hyperlexicon.blogspot.com/ and would be glad to answer any additional questions that come up for you via email. You're not alone! Christa
1) The Family Resource Network, in the Bananas building on Claremont Ave. near the DMV - http://www.frnoakland.org/
and 2) Einstein's Clubhouse, info about homeschooling Asperger kids in Berkeley, online at http://EinsteinsClubhouse.org John
We are finally in a place where we sort of know what we're dealing with and starting to understand what we can do to help manage some of my son's issues, but I feel completely traumatized by the last 5 years of meltdowns, being stared at, the daily struggles, etc. etc. I'm hoping there are some books, like other parents' stories that can help me start a little bit of my own emotional recovery and get some better perspective. I'm hoping to start with a cheaper alternative to therapy for now. Any recommendations? anon
East Bay writer/BPN mom Christa Dahlstrom does a great job of describing the fears, challenges, and fun of parenting a 6-year-old on the spectrum over the last three years or so. I'd recommend you check out some of the excellent blogs she links to, and/or contact Christa via on her her 'comments' section. Best of luck to you & your child.
I am very worried about my sister who is having a hard time coping with her autistic 5 year old son. I am looking for advice and recommendations for resources in Santa Cruz or San Jose. I think there are many issues going on, including my sister's depression and isolation which makes it hard for her to get good help (she is married and has a supportive husband, but it is clearly not enough). She is pretty pessimistic about his chances for sucess in public school and feels her only hope is to home school him. Another issue is what can I and our other family members do to help her and her son? She has trouble asking and when I make suggestions I often feel as if I am judging her for not doing things right. I want to support her but I also think she needs to deal with her depression so that she can be a better advocate for her son. She has had horrible experiences with doctors and meds, so I don't know how likely she would be to seek help from a psychiatist. I feel as if my post leaves very little for people to suggest, but I am hopeful. Thanks for you help. anon
My first thought is that she probably does feel judged by your well meaning suggestions. I'm not saying that you ARE judging her, but there's a good chance that she already feels judged by the rest of the world, and therefore does from you, too. This is hard stuff, in addition to being depressed, she might be blaming herself, she might be resentful of your children (if you have them) who are developing typically. She might feel isolated or lonely or guilty or angry or just so many other things.
Therefore, I would recommend not making any suggestions. Instead, ask her what she needs from you. Something like ''I love you and I want to help. What can I do?'' And say it a lot, particularly if she has trouble asking for help, she could say ''nothing'' at first, but after the 10th time of asking she might tell you something. Make sure she knows that you're there to support her and not to tell her what she's doing wrong (not that you are! That's just how she might see it.)
Secondly, I would learn all that you can about autism. Not so that you can teach her anything, but just so that you can be armed with knowledge. And tell her you want to learn. Ask her what her most important resources are, what websites or books you can read. Make sure she knows that you want to make an effort so that you can help her.
And, she needs support, but not from you; from other parents who have been there. And the beauty of the internet is that it doesn't matter where you live, you can find people anywhere in the world. I have a large network of friends with autistic children, and very rarely do I ever see or talk to them in person. They live all over the world, and yet we ''speak'' every day. Some possible resources:
http://php.com/ - Parents Helping Parents. Located in the South Bay somewhere, it's the best chance of finding real life people to connect with
http://autism-pdd.net/ - Lots of good info, including a very active support forum.
I have more, but none that I'm comfortable posting to the world. Feel free to contact me directly if you want more info or just want to talk some more. Good luck!! Jill
I am looking for a private special school for my brother who is a bit autistic and has epilepsy. He will be here with his tourist visa while staying at my place in Rockridge during this summer 06. He is 25 years old and speaks only Korean but very familiar with English language. He is a dedicated Christian, who is warm at heart and very innocent, almost like a boy. In Korea where he lives, there are almost no opportunities or support for people with mental disabilities. I am an only family he's got and luckily I was born here in the states that I wanted to extend some help for him here in the states. I understand that he won't be able to get into state-run programs such by east bay regional office, because he isn't ''american'. So my challenge is to find private organization or institution. However, I am having a hard time with getting such information. I would really appreciate any advice or information if possible. loving sister
There is also the Family Resource Network at 5232 Claremont Avenue. Oakland, CA 94618. Tel: 510/547-7322 website: www.frcnca.org/region3.html I found the staff at FRN to be really helpful. You can make an appointment or drop in and talk to someone about your situation and they will link you up with different services or provide you with information about different programs.
It might help too if you are clear about what you want for your brother, i.e. to learn English, to socialize, to have some fun things to do during the day, to get physical or occupational therapy, do art projects, work on academic skills, etc.. Good luck and best wishes. mma
Hello. I am currently pregnant with my second child. Around the time I learned I was pregnant, I also learned that my first child (now 19 months) has autism. I am very stressed all the time from the effort it takes to fight the regional center and insurance to try to procure services. I write letter after letter, file appeal after appeal, consult with moms, attorneys, etc (it's been 3.5 months and still no services, even though no one denies he has autism) . All this, and my son is not an easy child (e.g., very limited communication skills, needs to be engaged or he stims all the time, always hurting himself because of poor balance and he doesn't understand ''no,'' still doesn't sleep through the night, etc.) Because no one knows what causes autism, I find myself stressed all the time that I will do something that will hurt this baby, too.
If anyone out there has been through a similar situation, I would really appreciate hearing how you managed your stress and coped with all the uncertainy during the long 9 months. Thanks anonymous
My last year, however was really stressful. We bought a house, moved to Oakland -- at the same time we had an infant and our 2-year-old wasn't talking and was showing autism red flags. I did go through the Regional Center East Bay for evals/services and had a really good experience. It all felt slow getting off the ground b/c I felt such urgency. We ended up private paying for speech therapy 2x's/week until the RCEB services started up. We were granted 25 hrs/week of ABA therapy (which STE Consultants administrated) and 1 hr/week of private speech (Word Works). The early intervention services were amazing and really kick-started my son's ability to communicate (he was 2 yrs 5 months when the intervention services actually started and he couldn't talk or even communicate a simple need.
The good news is you caught it really early, you are on it. The services will start. I can't advise you with RCEB, because we had a good experience. (It did feel slow, overwhelming and confusing though.)
Life feels out of control for you right now, and that is so hard. Things turned a corner for me when my son started talking and communicating. A little time had passed, I was getting used to the dx and I finally had the perspective to see that he was going to be ok. Life was different than I had envisioned it, but we were re-calibrating and we were going to be ok. And that's the scariest, most stressful thing -- when you can't see down the road and you don't know if he's going to be ok and you don't recognize what's happening to your life...and you're expecting. I hope you're soon able to get to that place where you realize that he's going to be ok. Be kind to yourself too...you're a pregnant lady after all. Be well, hang in there, you will feel so much better when those services are in place. -Mom of 2
- get a dedicated file box and keep really good files
- get a dedicated notebook and take dated notes on everything...get everyone's name and contact details
- ask your insurance agency for a case manager for your son
- document everything w/ insurance, have things/promises sent in writing. (I got bogged down here b/c my insurance was slow in getting me docs that proved that he was denied coverage)
- follow up follow up and stay on people's radar when you're trying to get the appropriate docs from them.
- consider getting him into speech therapy asap if you can afford it -- at least it is some intervention; get a therapist who has experience w/ autism.
- if you live in the east bay, make a call to the Family Resource Network alameda co. and get their advice on how to proceed. If you're out of county, they can probably tell you who to contact. http://www.frnoakland.org/
- keep notes about his development and when things happened, what concerns are. You'll be asked about them ad nauseum and you'll be surprised what a blur this whole time is.
- if you know the regional center is going to pay for ABA therapy, you could look into getting a Floortime therapist to start coming (something you pay for) as a stop-gap and to help give you some tools to work with your son. We didn't do this, but it could be an adjunct to ABA and something you can start while you wait. You can also get a DVD training course on this approach.
- I found reading books about Autism just sent my anxiety levels through the roof. It wasn't helping. So I really did set the books aside until it wasn't all so overwhelming.
- When Regional Center's services start, you are entitled to respite care. Take advantage of this. (Depending on your income level they either pay fully or partially for a babysitter so you can take care of yourself.) Do you swim? Now's a great time to start. It's peaceful, meditative time to yourself, great exercise, inexpensive and a wonderful stress release. Yoga is too. Start something that is just time for you. Mom of 2
We didn't have any more children (too exhausted!) so I didn't experience dealing with stress while pregnant but I had to write because I felt so bad for you.
Re the stress, I agree, it is really important to keep the stress levels down while pregnant - there are several studies now showing that extreme stress while pregnant can be very detrimental to the baby. The question is how...
1. join SID-DSI_AllAboutKids@yahoogroups.com - it's for kids with sensory processing disorder so it is more of a spectrum group but gives a lot of emotional support & info on getting services in the school but it is nationwide. Another good one for just the Bayarea is Autism-Biomed-Bayarea@yahoogroups.com. I would post your problems with getting services on both these groups along with your stress question and see what responses you get - I think you'll find it very helpful.
2. Get a babysitter, even if I had to borrow money to do this I would, for the rest of the pregnancy and for the first 3 months after birth, it is so important to control your stress right now. Even if you already have a few hours free each day from your son, he may be too stressful and so you need MORE time.
3. Thought I'd just throw this out there in case you aren't already doing it - put your son on a gluten free casein free soy free diet. When we removed casein, we lost 50% of our sons symptoms within 2 weeks. This is NOT the case for every child, only those with a problem with casein. In our case, it was very obvious that he had a problem with casein (dairy) as he wanted only dairy and tried to refuse all other types of food. If you find yourself saying 'but if I remove xxx then he wouldn't eat anything (fill in the blank with milk, yogurt, or bread, noodles, etc) then that is a red flag and probably a problem food that may be causing many problems.
I am so sorry for your stressful situation and please know there are people out there worried for you and sorry you have to go through this. anon ------------------------------------------- My oldest is autistic and I also have two neurotypical younger children. My second was conceived and birthed before the diagnosis. I got through the third pregnancy knowing the new baby would be on an extremely delayed vaccination schedule and believing that would and did make a difference. I also tried to make the best dietary choices I could. I urge you to checkout Julie Matthews http://www.healthfullivingsf.com/ who is a nutritionist dealing with both autism spectrum disorders and prenatal care. She can give you the best advice on what to eat and do during your pregnancy and what to avoid. Also, you should read Rodney Peetes book, Not My Boy! He has a great section on siblings at the end. This child may just be the best ''therapy'' for your older one! Lastly, I would envision everyday the joy you are heading for in raising a typically developing child. Siblings of autistic children tend to be extremely intelligent, mature, caring people. Congratulations! ------------------------------------------- If you do not already know about Peninsula Parents of Special Needs Kids (PPSNK), I would encourage you to join this local listserv. Although the members are largely on the peninsula/south bay, the posts are often about more general advise so that location does not matter. It is a very active and helpful community run by a terrific moderator who herself found out her son had autism while she was pregnant with twins. Her son is now 10 years old and she has recently published a book called ''Coloring Outside Autism's Lines: 50+ Activities for Families with Children with Austism.'' The listserv is a yahoo group, and you can subscribe at groups.yahoo.com/group/peninsulaparentssnk/ (I think). Best wishes to you. Stephanie
My 10 year-old son who is special needs, obsessive compulsive, and autistic seems to go out of his way to make me angry at him. I had a baby over the summer and have an 8 year old son and because of my 10 year-old's behaviorial issues, I have to homeschool him. He is an extremely challenging child and has been since birth. He still has tantrums and will burst into a rage in public if he doesn't get his way. He's always mad at me for something and will tell me he hates me. When he gets his extreme fits for a toy or an outing, I try my best to be patient and walk away from him if I find my head wanting to explode into a headache. Lately, I have felt extremely tired and frustrated that upon my boiling point I start yelling him to stop, he'll start laughing and laughing, whicn only antagonizes the situation. I know I can't spank him because I'm afraid of my own strength and worry I may get carried away. My parents aren't available to give me a break as they're too dysfunctional. My in- laws aren't helpful as they are always judging me and my husband on our son's behavior, which is not a reflection of his parents. I feel utterly frustated, exhausted, and exasperated as he takes away so much of my energy, and guilty I can't give as much to my younger two sons. Sometimes I just wish I could walk away and never come back but he worries me so much as he has a hard time making friends and seems to be jealous of my middle son but thankfully not of the infant. I feel pulled in all directions. My husband is hands-on and will take him to the park, help with school work, take him to activities, just take him for a walk after dinner, and spend quality one on one time with him and the other boys, so he does what he can after his full time job, but I don't know if I'm just tired having just had a baby. Please no negative posts. Negativity doesn't help me. I have heard more than enough from family and close friends who simply don't know what it is to live with a child like this. Thank you. Sad Mom
Now, last but NOT least, you need to focus on self-care. Space and time carved out for yourself, maybe meeting with parents of special needs children in a support group, or just taking time out to meet your own needs. You have taken on a huge job, and will burn out fast without support and care anon
Also, maybe you can see a specialist who can help you set up a behavior plan at home so that you can try and deal with your son's behavior in a systematic manner. I know this is super hard! Sometimes following your instincts about how angy you feel isn't the worst thing to do--different kids need different amounts of imput to get the point. another special needs mom
Insist on an evaluation, and if necessary, pay for a second opinion from an educational psychologist. Are you aware of any private schools or boarding programs that could help your son?
If this is the only way to give him adequate schooling, then the school district must pay for it. (For example, our school district has paid for students to go to the RASKOB institute in Oakland). It takes a lot of persistence, but it may be worth the effort. Second, see if you can find some books on raising an autistic child that you can share with your in-laws. Talk with them frankly about how difficult it is for you and your other children, and see if you can arrange some type of respite time with them. If they cannot provide help with your oldest son themselves (after all, he sounds very difficult), perhaps they or your family could chip in to provide for a helper who comes in occasionally for your son, or they could take the other two, to give them a break. (My son went through explosive rages for several years at about this age, and I would take his toddler brother, and his sister if she would go, over to the neighbors until he was back under control--embarrasing, maybe, but it wasn't like they didn't hear what was going on, and they were very supportive, not judgmental). I found having a diagnosis was very helpful with my family and friends, so educate them with books, documentaries, web sites--whatever you have at hand.
There is an organization headquartered in Berkeley--DREDF http://www.dredf.org/, that can provide a lot of info on the rights of parents of kids with disibilities (which is what your son has). I wish you strength, patience, and luck in dealing with this Anonymous
School was complaining about him, other parents... so he entered therapy as well. Therapist asked that my mom and dad also go, but my mom got uncomfortable after a few sessions of seeing that she would need to shoulder some blame and she refused to keep going. At that point, the therapist suggested that under the circumstances, it would be best if as soon ans my brother started pushing my mom's buttons she would call my dad up and then walk away. If he was anywhere but work, he needed to drop everything and come home and deal with it. (I should add in here that my dad was very hands off when I was my brother's age - my mom was working FT and keeping house, going to PTA meetings, being a housewife and working and my dad was for way too long living the life of the 50s dad who worked, came home, cracked open a beer and watched TV until dinner was ready). So they tried that and to this day my mother said it saved her marriage, her sanity, AND her relationship with my youngest brother. For years, they barely dealt with each other beyond pushing buttons a little and then my dad stepping in. And then one day, it seemed like my brother snapped out of it and by then, after years of therapy, my dad finally stepped up in his own ways, and today, with her children 38, 35, and 32, you'd have never guessed how incredibly screwed up our house was (unless you looked really closely ;) )
In any case, I am not sure if ANY of this might help, but I wanted to give you hope. What helped my mom was being somewhat absolved of dealing with my brother. Maybe you need a long-term break of sorts anon
If he has OCD and autism, these are serious issues, and you and he need as much good, professional, caring help as you can get. He deserves to have the support of good special education teachers, counselors, aides and other professionals provided by the public school and (if you can at all swing it) as much private support (therapists, babysitters) as you can afford.
This is not only for your benefit (though I believe, from my own experience, that it would go a long way towards helping you feel a lot less alone and desperate) but for his as well. He truly needs the help of people who know how to deal with his problems, and who can steer him towards confidence and success. He might very well be a lot less angry and tempermental if he had this kind of support; He might also behave better towards you if he had more time away from you. I think that you also could benefit from having time and space away from him, AND from talking to a sympathetic counselor who could help you deal with your (justifiable) frustrations and angers, and who could help you devise a plan for creating a special "village" to help you raise your children, particularly your eldest. Believe me, I know it is not easy, but I implore you to get some really good professional help for your son and for you. Start with an IEP in your school district (call up the office and they will tell you how to get started). Please get a babysitter right away to give yourself some breathing room so that you can start moving towards getting the help you and he need! Please email with questions/for refs email@example.com
Regular time that I take care of myself has been essential, and it's so worth the effort and possible expense. Knowing my own limits, and replenishing myself. It is very hard to have a challenging child, and people with easy kids have no idea how hard it is. But there are things you can do. Antidepressants have also helped me a great deal. You may also want to consider therapy for your son with someone knowledgeable about these issues.I wish you the best anon
Obviously, a child is in control of very little. We dropped out of any social life, never took her out to restaurants, didn't press for new playmates or playdates. I didn't realize just how far it had gone until her ''normal'' little brother was born, and he wasn't like her at all! I reached the breaking point last January with my daughter, after cognitive-behavioral therapy didn't work, and her rituals started to consume hours of MY time as well as hers. We got her on sertraline (brandname Zoloft) and inched up the dosage over the course of several months and ...
although it's not 100%, just imagine losing maybe 70 to 80% of the rages, the tantrums, the anger and frustration! Rather than feeling sad that she's on medication, I just think about the chemical imbalance that causes the erratic behavior and feel grateful that there's a way to give her some relief. I would love to tell you how she feels and how this affects her, but she doesn't talk about her feelings. She is grateful for the medication, and I actually LIKE being with her now that she isn't tormented by needs that she can't fulfill. I know what it feels like to just want to walk away and not look back. I can't share my name with you because I am not willing for other parents on the listserve to know my child's ''secret'' - it's hers to tell or not, and I must respect that. My heart is with you and your family. This is a painful disorder for all of you. Sad mom, too
I would gently suggest you talk with David Demeray of BioGenesis. His family has a wonderful set of ''tools'' which are working very effectively for many people. The great thing is, anyone can use the tools, they're very simple and easy to use. If you speak with David or his mother Linda, I would suggest you ask them about the boy who recovered from very disabling OCD. It may give you hope and a resource, not only for healing for your son, but for your entire family. There is much assistance and guidance for all of us if we open up to it. Thank you for the courage to expose your struggle and ask for help - that is always the first step. I will post another response with David's contact info, (the website is www.BioGenesis.us), however, I don't have it with me right now. In the meantime, please feel free to call me or email me and I can get the info to you that way. Take care of yourself and thank you for your courage in sharing your struggle - you are a very patient and caring mom whose family is fortunate to have you loving them the way you do. Bless you Laura
We began working with Virginia with our son, who also has similar issues, and the change over the past few months has been remarkable. I hope this will also work for you and your son. Been there too
Were you ever involved with the Regional Center or the state program for older kids with disabilities? I'd think they could connect you with other parents facing the same issues that you could at least commiserate and share information and support with; autism has become so prevalent in CA recently that you have lots of company. It sounds like the homeschooling-having your son home 24/7-is a source of great stress. Trying to provide for all of his needs-while also taking care of your other kids-is just too much. Do you ''have'' to homeschool him? He sounds like a prime candidate for services either in a public, private or ''special'' school, paid for by your local school district. I'm also (slightly) aware of an organization called BIA that does home behavior therapy/education with kids with autism. There's also an advocacy organization-and I hope someone will write in with the name-that helps parents advocate with school systems so that the child's rights under ADA are observed and needed services are made available. You'd also be eligible for some respite care, I would imagine-someone trained who could watch your son periodically. I could see how you wouldn't have time and space to investigate these things, but please do what you can, or ask a friend to help-so that you get the kind of support and resources that will make a difference for you and your family for the long-term. Feel free to email me if I can help you track down some resources. jkh
Unfortunately, your son will only get stronger and bigger and you need to think about keeping him safe, which is why an expensive consultation may be worth it in the long run. Good luck anon
Hi, I have a toddler in a home based day care. The day care consists of mainly infants with a couple of toddlers and one elderly adult assistant (along with the main provider). There are 7 full timers and one part timer (two of her schoolage kids come home halfway through the day). Last week she had a 9 year old autistic child ''drop in'' for two days. This week he has joined the day care. There has been no open discussion. The child does not speak and loves to go outside (will bolt for a door if he sees the opportunity, pushing out of the way).
I am a compassionate person and all for inclusion, but am concerned about the age difference and mimicking behavior inappropriately. I am also concerned that my provider and the assistant are not adequately trained to manage this situation (especially in the event of an ''episode''). I questioned her and was told that the child ''doesn't hurt anyone.'' That was not what I asked her when I got that answer!
I have a very dear friend that has a masters in special needs and her opinion (based on her specialized training) is that it is completely inappropriate for a 9 yr old with special needs to be around toddlers. Aside from the toddlers mimicking him, the 9 year old will mimick the toddlers. It's one thing when a two year old mimicks another two year old hitting, scratching, pulling, but when a 9 year old mimicks a two year old hitting, scratching, pulling, someone can get very hurt.
I am trying to discuss this with my provider but feel like my attempts to openly communicate are not being honored......
one mother has already abruptly removed her child! I am already looking for alternates....
any advice, would be highly appreciated...... anon
With due respect to your friend who is an expert on special needs children, no two autistic children are alike, just as two typically developing children are alike, so her judgement that an autistic child should never be included with young children is too simplistic. Many professionals in child development and education have little if no training about developmental disablities. Teachers training is about typically developing children, unless the teacher is aquiring a supplemental special education credential. I have had to explain my child's discrete-trial training at school a pediatrician.
Autism is a spectrum disorder. If a child has enough characterstics that indicate the disorder a diagnosis can be made, but all autistic children do not behave identically, since they won't share identical characteristics. For example, autistic child may be very ritualistic, while another may only be slightly so. The stereotypical autistic kid who bangs his head or flaps his arms all day is just that - a stereotype - they're all different.
Aggressive behavior would be a reason that the child might not be a good fit for this daycare. Many people believe autistic children are always aggressive. My son is extremely passive and has never shown aggression toward anyone. As a toddler he just seemed like a passive, shy boy. As far as the possibility of the autistic child immitating two and three year-olds aggression in day care, I wouldn't worry, most austic children don't immitate other children. Their aggression is a symptom of their frustrated attempts at communication.
Bolting is another reason the daycare enviornment may not be appropriate if the provider cannot provide for the safety of the autistic child and her other children. When you ask her about this behavior, ask specific questions, ''What action will you take if ''Billy'' escapes? How will you supervise the other children if you need to go retrieve him?'', ''How often does he escape?'' ''Does he stop when told to?'' She probably answered your question with ''he doesn't hurt anyone'' because that is what she thinks you're concerned about aggression. The provider also probably felt defensive both of herself and of the autistic child, since a parent abruptly pulled their child from her care. It's an answer people often give when people are concerned about wierd, but otherwise harmless common behaviors of autistic people, like hand flapping, ordering toys, making odd noises, ect. A lot of people, even if they don't admit it, just don't want to be around people who behave differently, even when the behavior isn't harmful.
If you're concerned about the provider's training, again ask her specific questions, such as ''How do you communicate with Billy?''. ''Does Billy respond to your commands?''. ''How does he communicate his needs to you?'' While teaching an autistic child requires a lot of apecialized training, providing care for a few hours after school would not. Many non-verbal children are taught to communicate using picture cards, so if he brings her a card with a picture of a toilet on it, she would know, with or without a lot of training, that meant he needed to use the toilet.
I hope you can open up better communication with your daycare provider. I think being specific in your questions will help. With the increase in the numbers of children being diagnosed with autism, we will need more people who are open to caring for them, and we will all need to be tolerant of their differences. anon
Do not put all your faith in any particular diagnostician's opinion. Put your faith in your daughter and yourself and your husband. But DO proceed quickly. Early interventions are the best, and the sooner you are aware of the possibilities and her individual needs, the better for her and for you.
I, too, had all those fears and questions, all those unknowns, all that terror and waiting for appointments that you are experiencing. But now, I've got some hindsight. I longed for someone to talk to, some other similar children to observe, any one who could tell me what was happening to us all. Please do feel free to contact me. I would be happy to talk to you, for however long, and give you whatever benefit there is of our own references, stories, experiences, etc.
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