I need advice, seeing the doctor on Wed

iVillage Member
Registered: 03-22-2006
I need advice, seeing the doctor on Wed
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Sun, 07-02-2006 - 3:33pm

I’m incredibly unsure about going to the doctor (again) and trying to get some sort of idea why my son does the odd things he does.

In so many ways, ds is ‘normal’ but spirited no doubt. He turned 5 in March.

The main behaviour that worries me to no end is he jumps, hops and skips, back in forth, totally within his own head, like he’s concentrating on something. He sometimes flicks his arms around, jerks them really. He does this in the living room mostly, at home and in the same general way every time. He will sometimes reach down and rub the carpet like he’s feeling the texture and get up and jump some more. He does this over and over. I’ve never seen anything like it before and have a hard time explaining what he’s doing exactly. He doesn’t watch tv all day, he does watch a little before breakfast but we limit it to an hour a day maximum.

This last fall we went to a paediatrician who said ds (4.5 yrs old at the time) was obsessive compulsive. This after talking with us for 10 minutes as well as watching a short video clip. He said he would refer us to a psychiatrist but didn’t think it was necessary.

The ped said we need to distract him when he does it. Which we do and have tried to do since he started this behaviour at 3. The ped also asked if he went to preschool and I said no, right then and there after I said that the ped had his mind made up. He told me to get him in preschool or kindergarten would be an awful shock. I didn’t even have a chance to mention all the socializing he does do, gym class, swimming lessons, friends etc. This year dh and I coached his soccer team and he’s in swimming lessons and we go to the park, library, you name it. I mentioned that I was thinking of hsing he said it wasn’t a good idea. The ped retired two days later.

Both doctors basically ruled autism/aspergers out although I don’t know how they could have ruled anything out with the few minutes they spent with ds.

I’ve been depressed and worried since the jumping started, two years ago. I’m so worried about my little guy. He’s always been a little different, when he was a baby he didn’t chew on anything or put anything in his mouth and didn’t eat solid food until he was 18 months old. He’s had no emotional trauma in his life. He did fall down four carpeted steps onto and carpet and his wrist fractured. I felt just awful about it, did he hit his head as well? I just don’t know and I’m sick with guilt and worry. I’m actually having anxiety attacks (after many years of being free of them) over my worry. Please don’t flame me, I need support.

He loves hanging out with other children usually but is has been rejected and teased because he can be quite intense and loud. He worries a lot and hates surprises and can get worked up easily. Social situations are generally hard because they tend to end in crying and sadness. We’ve had periods of time where this wasn’t the case but we seem to be going through another phase right now, especially in situations where there are a large number of children, the park on the weekend, parties (we avoid parties in general but last Friday we took a chance, it was horrid). High pitched noises send him into instant meltdown. He speaks really well, I’ve had people come up to me in stores and tell me how well he speaks.

I would love to have a diagnosis, something we can work with but I also don’t want to put him through the whole doctor experience again. But, I do think if we had a diagnosis dh could no longer deny that our child is different and that teasing and cruelty at school may be a real problem. He and I don’t see eye to eye about school and in other areas as to what ds might need. Like I want to protect him from the teasing, dh thinks we should try school and if it doesn’t work out we can pull him out. My thinking is why put him through that?

I also don’t want to put him through the whole doctor experience. I don’t have the energy to fight with them over this but deep down I know I have to, for my son’s sake, my own and my marriage. What do I ask for at the doctor? Which specialist? Does my ds sound like other children with Aspergers? I’ve done some reading but am so confused. Thanks for listening, it’s a long rambling post.

edited some typos :)




Edited 7/3/2006 2:58 am ET by ocarina101

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iVillage Member
Registered: 03-27-2003
Sun, 07-02-2006 - 3:45pm
I don't think that there are many of us who hasn't been there from time to time. My son D.J. who is 13 years old now saw the pedi for almost a year before we finally found out he was aspie. The doctor watched the way son acted and reacted to alot of different things. Now we had already found out that son has ad/hd,is bi polar, has phobia's, and is border line IQ. I think the doctor needed time to watch my son before he just assumed and said something that he didn't believe was true. But of course I also have a son that is almost 22 that was nonverbal austic so seeing it's genetic it really doesn't surprise me there. I know this may not help much but I have been there and I am not sure that we have all of the facts "YET". Social security doctors are going to test him seeing I have applied for SSI for him.

 

iVillage Member
Registered: 03-26-2003
Sun, 07-02-2006 - 3:55pm

We would in no way ever flame you. This is a very safe board and you are welcome here. I don't think I have ever in my years on this board seen anyone flamed or unwelcomed. So please don't worry about that here.

Also, hitting his head would not cause those kinds of behaviors or any challenges that he may have. It was not your fault. If he has some sort of diagnosis it is because that is the way he was born and god made him that way.

Next, the behavior you mentioned does sound odd and I don't think the doctors did spend enough time to evaluate him based on what you have said. You definitely need a full evaluation to understand what is going on. Is this a new pediatrician? I would ask them again for a referral. Perhaps call the local autism society and ask for names of specialists in your area if the doctor doesn't know. If possibly going to a developmental evaluation team at some place like a children's hospital might be the best option. If not a referral to a developmental pediatrician, neurologist, neuropsychologist or clinical psychologist that specialize in autism would be good. Psychiatrists may be ok if they specialize as well. Most do not and are more versed in OCD, ADHD and such. If they don't understand aspergers and the autism spectrum he may get an incorrect diagnosis.

If the new doctor gives you a hard time about a referral then I would look for a different pediatrician that is more helpful. I have found in researching pediatricians or any kind of doctor, that the office staff is very helpful if you are open with them and ask questions.

Then when school starts in the fall immediately ask that he be referred for special education evaluation. He does NOT have to be put in a special class but if he has struggles they will be provide him with some supports. Tell them you are concerned that he may have an autism spectrum disorder and are very concerned about how well he will do this year. It takes 60 days to get school evaluations done and plans put into place so starting right away will be the best option. You can even call the district office over the summer. Ask for the special education department and request it there. They will give you all the information of who you need to contact.

HTH and good luck.

Renee

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iVillage Member
Registered: 03-22-2006
Sun, 07-02-2006 - 4:19pm
Thank you, Tina.
iVillage Member
Registered: 03-31-2003
Sun, 07-02-2006 - 4:40pm

I second what Renee has said: try to get another evaluation by a doctor who knows something about autistic spectrum disorders, and also call the school district and set up an evaluation for him there. As an aside, my DD was evaluated by the school district when she was 3.5, before starting preschool, and she had a great time at the evaluation: lots of games, puzzles, things she really enjoys -- so while I was also worried about putting her through a trying experience, it turned out to be not bad at all.

The other thing I'd bring up to the evaluating physician is the possibility of sensory integration issues. A lot of what you describe sounds sensory to me... There are some great books out there on sensory integration issues -- the one I'm reading now is called "Raising a Sensory Smart Child," available on Amazon. It might give you some good tips while you're waiting for the evaluations.

Good luck, and keep us posted!

Jennifer

iVillage Member
Registered: 03-22-2006
Sun, 07-02-2006 - 5:49pm

Thank you, Renee.

Once in a while, in medical literature, I come across the head trauma suggestion. I did mention it once on a Tourette's board and was totally flamed. I guess I'm just really needing hugs and that was my way of getting my concerns off my chest honestly and asking for support at the same time.

I'm on edge these days, I get all sorts of comments about his behaviour like if he had a brother or sister he wouldn't be so sensitive and clingy, that I baby him, that I'm over protective, he's not social enough, he just needs more physical activity, etc. And, I don't even have family! This is all from neighbours and friends. I won't discuss my son's behaviour with anyone any longer. I've really had to re-evaluate my so called friends, I no longer respect a lot of them. Even the friends who are parents just don't understand how hard it is or that there is no quick fix nor do they understand ds is indeed different.

The doc we are seeing is our gp, the same one we saw for the initial referral. I will find our local autism support and get some info. You totally summed up how I feel about seeing the psychiatrist. Thank you for the other specialist's titles, such a tremendous help.

I've not even considered autism or aspergers since both the gp and ped didn't pursue it. He wants to be social and likes to join in. He makes eye contact, etc and speaks well. But ocd doesn't just happen to a 3 year old, out of the blue. There is something else there, whether it's aspergers or something else.

He's not registered for school (kindergarten) in the fall as I'm not sending him. I am going to register him though so our local school will get funding, should I still have him evaluated through the school?

Thank you so, much Renee, I've printed your post off, you're advice and the time you took to post it is invaluable.

iVillage Member
Registered: 03-22-2006
Sun, 07-02-2006 - 5:59pm

Thank you, Jennifer.

Yes, he definitely has sensory issues. I've read a lot about it as well, not sure if I've read the one you mentioned though, I'll look it up.

iVillage Member
Registered: 03-26-2003
Sun, 07-02-2006 - 6:26pm

You can get an evaluation for a child through the school district any time after 3 years old. It doesn't matter if he is homeschooled or in a private school. So I would still start that evaluation process there as well. Even if you don't send him to school they could still provide services such as speech or OT if he needs them. They can help you get him ready for school as well or come up with a positive plan and get him some supports.

I understand being on edge. Unfortunately that is the hardest part about being a parent of a child with an invisible disability like Aspergers or OCD. We are often judged, and harshly. Others who are perfectly well meaning will call our parenting into question to the point that we question ourselves whether or not we are good parents. I think every mom on this board can attest to that. I know I can. Unfortunately, it isn't something that goes away with diagnosis. We just gain a tougher skin and an understanding that it isn't our fault, it is the way our kids are wired and we have to teach them differently and parent them differently.

Plenty of kids who are Aspergers want to be social and join in. I would dare say often many even fully autistic children want to be social, but they do not understand how. I have known plenty of people with autism who do want to make friends and will be socially outgoing when comfortable but they need to be taught how to do it successfully. That kept me from getting my 2nd child diagnosed for a long time. Mike as a toddler and preschooler was very outgoing with other children. However, he didn't have any friends and most kids got annoyed with him pretty quick. He did have a number of boys when he was young who would seek him out because Mike was the ever present clown but he did not have any real friends. When he was young that didn't dawn on me as a problem. My oldest was already dx'ed on the autism spectrum. I thought since he was social then he couldn't be autistic. The problem was he didn't understand social interactions. As he had more and more social failures he quit trying and withdrew as he got older. He is actually my more autistic of the 2 kids.

NP on the help. It is what I live for, lol. I have been at this a while so writing this doesn't take me long at all. Plus I have flying fingers for typing, lol.

Renee

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iVillage Member
Registered: 03-22-2006
Sun, 07-02-2006 - 7:09pm

Thank you so much, Renee. Your son sounds like mine. He wants so badly to fit in but just does not. :( Other kids brush him off so frequently, it's sad. I'm worried he will stop trying, a person can only take so much rejection.

I don't expect parents to start understanding once we have a diagnosis one way or the other but at least my dh will get it into his head (maybe?) that our child is not like other children, that he can't handle the social situations dh always thinks will be so great for ds. When I mentioned all the things that are said to me about my parenting, he has said them to some degree as well. eg: If ds went to this or that activity he would get used to other kids. He is coming around though and has admitted he's in denial, hopes that it will just go away on it's own. Whereas I'm odd, my whole darn family is odd and unconventional, that ds is a different is no surprise to me, nor is it something I see as a total negative, which is what I think dh thinks. I know (mostly) it's not my fault, a diagnosis would help me convince dh it's not my fault.

We are in Canada, do you know if school evaluations work the same here as in the US? Also, are they available in the summer? Thank you so much. :) I am going to call the school district tomorrow and get him registered for school asap.

iVillage Member
Registered: 03-26-2003
Sun, 07-02-2006 - 7:58pm

I know nothing about canada, but I think we have some mom's here that are canadian. I know it is different there. I know on the autism spectrum disorder board the CL is from canada. Her son is still young (not yet 3) so I don't know if she knows how it works with the school but she might.

Renee

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iVillage Member
Registered: 11-12-2005
Sun, 07-02-2006 - 9:02pm

My ds Noah is 9 has Aspergers and every so often he jumps around the house excitedly and the look on his face is very intent and focused. He is in group/social skills therapy with some other boys who have AS and they all do it in some form or another and the therapist said they sort of "have to do it" They get over stimulated and have to let it out. He also will flap his hands when excited -that was our first clue that he was "different" and that he had Aspergers. I also notice sometimes (not too often) that he will touch a table and then come back and touch it again. He has never been diagnosed w/OCD but probably has a "touch" of it - it's just never been an issue that has become a problem.

So far, this has probably been of no help to you whatsoever. Sorry! How about this? You know your son better than any doctor, friend, nosy neighbor, school teacher - anyone! Don't give up and don't let them think you're crazy for feeling that your son needs help. My DH thought I was crazy when I first brought up Aspergers too but he now "gets it"

If you're unsure about going to the doctor -again! how about just not go! What would that hurt? I know you're anxious for answers but another unproductive doctor visit may discourage you more. There is time! Your son is 5 - we didn't even know why my son was so different until he was 9 but he's getting help now. Research a little bit online, stay on this board - it's got a wealth of information and then find someone who actually knows about Aspergers, sensory issues, etc.

By the way, I have decided to homeschool my son next year - in part becasue of his Aspergers. Teasing and bullying was an issue and I'm not willing to put my son through that and luckily have the option. My son is "normal" but he's not in the sense that he doesn't conform to our societies standards of what "most kids" are like. He wants to be social (sometimes) but is really bad at it - he has to learn it. He HATES large groups of noisy, chaotic kids (public school?!) does well with 1,2 or even 3 kids. He will never be the "life of the party" "the social butterfly" or the Prom King? So what? He's a gifted, sensitive, funny, complicated, deeply caring child.

Take some deep breaths and realize that there is help out there for your son and you will find it. Stay on this board and you will realize that you are not alone.
Jane

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