I always knew....now how do we begin?

iVillage Member
Registered: 02-10-2005
I always knew....now how do we begin?
12
Thu, 07-05-2007 - 9:20pm

I don't think if this is the exact board that I should be posting on, but I know I'm close.

I'm finally figuring out that my son has some form of mild autism. He is 7, but I knew this 3 yrs ago after reading a book at Barnes and Noble. At the time, I felt silly and thought I was over-reacting, etc.

Let me start with today .... We just finished 2 weeks worth of swim lessons. He cried every day we went there (sometimes in front of the other kids who are all younger than him).The teacher (who used to be a firefighter) VERY loudly called out my name yesterday and said something is wrong with him. OK, it wasn't worded just like that. He said my son can swim, but is experiencing great anxiety and asked if he's experienced some sort of trauma. He then said this wasn't "right" and needed to get it checked out. It just so happends that I was sitting next to a lady whose child has Autism. She recalled that I mentioned my son being a great (and comfortable) swimmer on his back, yet he panics on his front. We then talked further and she discussed her son's disorder, Sensory Integration Disorder, etc.

I know he must have this and something else going on. I knew and now I really know.

Bare with me as I work this out (hopefully I don't ramble too much!).He walked very late (18 months). 2 weeks after learning to walk, he was able to identify and say his ABC's. He loved reading license plates! By 2 1/2 yrs or so he could read and identify the presidents of the US. At 3 he could identify classical composers and the era in which they wrote, as well as states,capitols and countries. Such a smart boy! He'd perfectly line up his Hot Wheels too!

However, he always resisted doing anything physically daring (climbing stairs, or a ladder, going down slides and so on). Once when he was 3 he got "stuck" up in one of those playland climbing things at Chick-Fil-A. He was bawling and a teen girl pulled him out. Even now at age 7, he very carefully walks down stairs and really freaks (even cries) if I make him go down the escalator at Disneyland (a very high escalator).

He has always shaken his head back and forth (usually while riding in the car) and he now mostly flaps his hands back and forth and jumps up and down when exicted. He is easily excited by stimuli and will make loud sounds. He'll also make a loud sounds here and there in the middle of class for no reason.

In preschool I'd walk into his class and he'd be playing alone or looking at the ABC chart in the corner while the other kids played. We started him in Kindergarten when he was 4 yrs old. I know, we should have waited, but the kid was talking about countries and classical music!! HIs teacher would say he doesn't always do ask she asks. She said it wasn't really disobeying...she couldn't put her finger on it. In 1st grade the teacher mentioned the hand flapping. We thought maybe he was so smart, he was just quirky. His teachers also say he is VERY immature.

But after talking with his teacher I did a little research and re-read some info on Aspergers. I mentioned it to his Dr. (head of pediatrics)He immediately dismissed it and said all kids have some sort of quirly habit(he said most pick their noses).

He prefers to play with younger kids and this really bothers me. When I take him to a friend's house, he'll play with the 3/4 yr old sibing while the 7/8 yr old kid is left standing there.

We placed him in basketball, where they said he belonged with the younger age kids. Even then, he didn't excel and acted very young. He hated the entire experience. Gymnastics was a challenge as well.

The thing is, he's very, very intelligent. He makes witty, brilliant jokes that are on an adult level. He reads at a higher level too.

We always knew he was different, but we've pushed him to do many things so he'll blend and actually enjoy life. I don't know that he'll ever enjoy sports, but he does now ride his bike and scooter and is VERY good at it.

We don't want him to be labeled and worry about the school getting involved (not quite sure why). So, does this sounds like some form of Autism? Should we go to a Dr. or the school districy for testing? Where do we begin?

DH and I are loaded with guilt today. We remember taking him to the beach and him being terrified of waves...of screaming while learing to ride his bike and pushing him to do a million other things that must have terrified him. We always wanted him to "act like a big kid" and get over it.

He's the neatest boy and I just would do anything for him. What do I do now?

If you've gotten this far, thanks. :)

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iVillage Member
Registered: 02-10-2005
Fri, 07-13-2007 - 2:18am

Thanks so much to the both of you for the welcome and support! My mom and sister are jr. high and high school teachers and have a lot to say about getting the school involved (both pros and cons). I can't remember if I posted previously, but I think it's going to take a long time to get the soc. worker involved, for she is the ONLY one for 2 large counties here in CA.

Fortunately, DH is a college professor and spoke to the head of psychology. He explained ds' sypmtoms and he referred dh to a children's educational psychology prof. who specializes in Autism and Asperger's. He said she could do the assessment and he could write off the final DX. We might try that, as well as go with the Dr. appt. this Monday.

The main thing that bothers me is bringing ds to these appointments. I don't want to talk about this in front of him. I know he'll feel bad.

Thanks again for the GREAT info. I'll have to get organized. :)

iVillage Member
Registered: 04-09-2003
Fri, 07-13-2007 - 12:55am

Hi! I'm new here too. My heart goes out to you. My son has some similarities with yours. I know how difficult it is to deal with the idea that your kid is different. But sometimes different is better than what we think once we get used to it & learn how to respond best to our children. I too used to treat my DS like a normal kid. I used to think he was purposely trying to push my buttons and would get very angry & yell. Thank God I am much better at that now. Especially now that I realize that it is not on purpose & he is doing his best & I need to learn more effective ways of dealing with him & disciplining him.

You have gotten some wonderful advice from people on this board. The only thing that I want to add is the need to be your child's advocate both at school & with doctors. I struggled with finding a good doctor for my son. Our original ped brushed off my concerns, a psychiatrist was inept & didn't even have the right rating forms for the disorders I suspected. We finally got a recommendation from the nurse at my school. You might want to try that route if you can't find a good doctor to help your child. I am a teacher & see how long it takes to get evals & IEPs started. Even with me being a teacher & my son going to a great school with a wonderful staff I still had to push & it still took too long to get things done. The school's psychologist (who is almost always PT since they are at 2 schools) will do testing. Once you put a letter in writing they have a certain amount of time to get it done. When you meet with the school psych have a list of symptoms you see in your child & what disorder(s) you think he may have. Find out & write down what tests they will perform. We saw the doctor first & he had me request that the school do certain tests. We had a Reynolds Intellectual Assessment (IQ). Woodcock Johnson III Achievement Test, & BASC 2 (behavioral assessment). Request copies of everything (especially test results) & keep a file. Keep copies of everyhting you give them too. I gave all test results from school to both doctors to help them in the dx. I have a binder I put everything in & bring it with me to school mtgs, ped & psych appts, etc. This way I have everything organized & with me.I have tabs/sections for journal (of symptoms/events), test results, doctor visits, medication info, correspondence w/school, school report cards/progress reports, school discipline referrals, school interventions, 504 plan (or IEP). I also have sections for the disorders DS was dx with. Also, bring a list of interventions that you use with your son at home that work as ideas they can modify for the classroom. BTW, don't worry about your son being labeled, good teachers don't care about that anyway. We prefer help in knowing how to best educate your child. By law we have to follow IEPs & 504 plans. But don't assume the teachers follow it all, sometimes we forget certain things. This is especially true once your children get to middle school & beyond. I am a middle school teacher & I teach betweeh 150-185 students each year. I taught about 30 students w/IEPs or 504 plans last year. So you can see how we might not remember every intervention for every student all of the time. It is very important to keep in close contact with teachers. I would suggest that you give each of his teachers copies of his IEP/504 plan & info on the condition he is dx with. I have taught for 10 years & this past year was the first time any of my students parent's did this. She also kept in close contact with us teachers. I was so impressed & it was so helpful.

HTH

Janet

iVillage Member
Registered: 03-20-2003
Thu, 07-12-2007 - 10:05pm

Welcome to the board!


I see you've got some great responses.

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iVillage Member
Registered: 02-10-2005
Tue, 07-10-2007 - 4:38pm

Thanks Sarah! This is all so new and have yet to hear back from the social worker. She is the ONLY S.W. (with this organization) for two large counties here in CA. It's going to be a while.

The only other difficulty he has at school is that it takes him forever to complete his work. He is last for everything (even eating his lunch).

I'd love to read more about teens and adults with Asperger's. Very interesting.

Thanks for the welcome! :)

iVillage Member
Registered: 10-03-2004
Tue, 07-10-2007 - 10:05am

Hi and I also want to welcome you to this board.

You don't mention any difficulties at school beyond the teachers referring to him as immature, and that is great. Our kids can have more and more difficulty in school as they get older, the structure gets looser and the demands, esp. social, get higher. Your ds may never have actual trouble with schoolwork, mine doesn't, but the school is responsible for helping out with more than just academics. Also, if your son has strong sensory issues, those really may interfere more with his ability to learn in a classroom as he gets older. You may want to have an OT eval for sensory issues done by the school. It is, of course, a personal decision whether or not you want the school to know, but labels really mean nothing, getting a child what he needs to succeed and learn is all this is about. And any person who sees a label instead of the child is not someone you want working with your child.

Anyways, I just wanted to add anything I could. In many ways, finding out exactly what goes on with my son and getting professional help has made the biggest difference for my dh and I in terms of understanding and then being able to come up with a plan of action to support him and help him grow.

Sara

iVillage Member
Registered: 02-10-2005
Tue, 07-10-2007 - 12:32am

Thank you all so much for the responses and support. I don't know how long it will take to get a diagnosis, but I'll be reading these boards and studying up in the meantime.

Thanks :)

iVillage Member
Registered: 04-28-2007
Sun, 07-08-2007 - 12:27am

Goodness, your ds sounds likke a classic Aspie to me (aspergers). The memorisation, fear of the ocean and waves (both my boys, in fact ds #2 refused to go near the sea al week on vacation last week), the hand flapping, head shaking etc.

Now as to the school "lebelling" him or getting involved my view is "LET THEM", as they will pay for testing and my ds having that label gets him so many services and supports. Basically without the label he'd be a wreak at school.

If you want to avoid the school for now you can cotact a developmental ped or neuropsychologist and they can help you understand all this more.

Dee

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iVillage Member
Registered: 06-02-2004
Sat, 07-07-2007 - 2:55pm

Welcome to the group! It sounds like you've gotten lots of good info. so far. This is such a great group for advice and venting. I'm sure you'll enjoy it as much as I do.

Amy~mom to Natalie (10 yrs.) and Lily (4.5 yrs, PDD-NOS, Sensenbrenner Syndrome)

iVillage Member
Registered: 04-07-2003
Fri, 07-06-2007 - 7:16pm
I knew there were people smarter than me! I always forget about getting an eval through the school district since our school balked at doing an eval for us, and I wasn't smart enough to push them to do it at that time. We were fortunate that by the time I pushed for evaluations that our insurance was awesome and paid 100% of everything at Children's Hospital.
iVillage Member
Registered: 06-25-2003
Fri, 07-06-2007 - 11:05am

hello and welcome to the board,


I don't know if you have come to the 'right'

-Paula

visit my blog at www.onesickmother.com

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