New here and I am soooo confused....

iVillage Member
Registered: 03-25-2003
New here and I am soooo confused....
14
Thu, 12-02-2004 - 9:40pm

First of all please excuse the hat....don't want to offend I just couldn't get the darned thing off tonight... :(

I have a 9yr old ds and he is my life. I love my son more than words can say but am sooo worried about him. I've read and read and read for the last five years and have yet come across something that made me sit up and say "yes" that's it. I've read a great deal recently on SID and must admit that some of the "symptoms" exist but not all. But then that's the way it's been for the last five years. His dr is hesitant to make a diagnosis and every "specialist" I've had him to waffles on a dx. He exhibits some of this, some of that, a little of this and a little of that. As I am sure you all know I cannot begin to get him accomodations in school without a dx.

Reading on SID has brightened the bulb a bit but it's not totally on (as usual)so I thought I'd come here and ask the experts some questions. DS as an infant and toddler was terrified of loud noises in fact I use to come home at lunch time to vacumn lol...anything like a motorcycle, loud car etc scared him. He also had a keen sense of smell, he had to smell absolutely everything even socks...yuk!! Then as he aged a bit I'd say around Kindergarten age he began having night tremors and certain fabrics would make him break down and sob. In fact he still cant stand to touch my work coat. He exhibits a few of those things today at age 9 but not as bad as when he was little. He learned to talk very early and in fact when tested in Grade 1 his language skills were "
too high to quantify." He is an avid reader, has always read well above grade level. He is a very active boy will do cartwheels in the living room etc. and yes he is impulsive. Like other posters he also potty trained very late. Also, like some other posts I've read, I had a piece of cake pregnancy (even though I was 42yrs old and he is my first and only child) but I did have an emergency C Section. The chord wrapped around his ear and they lost his heartbeat. DS tests in the 83 to 87th percentile on the cogat.

Which brings me to the root of the problem. In a one on one situation or in a testing environment he is awesome but put him in a classroom and he crumbles. He simply cannot perform in the classroom. Is easily distracted, lacks focus, etc etc etc I think we have all heard those "buzzwords." As usual I am being pushed by the school but I'm not budging, as usual, I don't know why in the world they want to medicate every kid that presents a challenge. Do I think he is ADHD? Not really although he does exhibit "some" signs but not enough to qualify for a dx....I will be upfront here that meds to me is a very very last resort...he has friends but has never been able to really "keep" a friend very long. He lacks social skills even though he has been in social environments since he was a baby. He is very immature I guess, although I'm not quite sure just how mature we can expect a 9yr old boy to be.

I am sooo very confused and it kills me to watch this bright, capable, funny, affectionate little boy suffer the way he is. We started some testing this week at a place called NeuroEductation. Very extensive testing over a period of several appointments and the Dr seems confident that we can get to the root of the problem.

When I began reading about SID....A glimmer of hope emerged that maybe just maybe I had finally stumbled across something....based on what I've told you and given your experiences what do you think?

Pat

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iVillage Member
Registered: 02-01-2004
Thu, 12-02-2004 - 10:37pm

I am on the board to post that my 32 mo. old passed his Early Intervention screen today, but that doesn't mean that he doesn't have sensory issues (I am new to the board too). But I must tell you that your son sounds like he does have sensory issues, but nothing major. I wouldn't worry and I am sure the Dr's will be able to help him and you soon. He's at that age where it's easier to diagnose. I say this because I have heard that some kids w/ Asperger's Syndrome aren't diagnosed until they are nearly 8 or so. I am NOT saying this is what your son has, not by a long shot, but I have experience w/ the disorder since I have an adopted 8 yr old brother w/ the disorder.

I wouldn't worry by the # of friends your son has. If he has 1 acquaintance, I think that's fine. All kids have quirks. It could also be ADD/ADHD too, but I am not well versed on that, even though I believe I am a little ADD, to tell you if he needs medication. I myself tried Ritalin at the age of 23? for a few weeks and quickly went off of it. My passion for drawing (at that time) was interferred with because I felt like I had to be 2" from the paper to draw when on the medication. I also felt very absorbed into the environment and a trip to the grocery store nearly gave me an anxiety attack (which I kept under control).

My brother w/ Asperger's was recently put on Prozac for anxiety. He only has friends because they want to play GameCube w/ him. He isn't into sports and at 8, acts like a 4 yr old w/ stimulation behavior (noises, annoying people).

I would count your blessings and don't worry about your son. He sounds very bright and will make it just fine in life!

Melanie :)

iVillage Member
Registered: 11-30-2004
Thu, 12-02-2004 - 10:45pm
I'm by no means an expert, but it sounds like SID to me. My dd is also terrified of loud noises. She cries over fabrics too, just say the word "gauze" and she bursts into tears. I have no idea why gauze of all things... Like your ds, she has great reading and language skills for her age, but lacks social skills. She's been in preschool for 3 months now and hasn't made any friends, but it's not because she wasn't exposed to social environments; my older dd didn't even go to preschool and she hasn't had any social problems at school and has many friends. I hope you get a dx for your ds soon, I can't imagine how frustrating it must be to know he needs help but the school won't give it to him.
Good luck!
Lisa
iVillage Member
Registered: 09-30-2004
Thu, 12-02-2004 - 11:18pm

Wow!


I can certainly tell that you are so crazy about your son! Man do we ever feel passionate & resigned to getting to the bottom of what is going on unlike the rest of the world!!?


And hey, I think it's so cool that you had him at 42!!! One of my very close friends just had her last son at 43, and she doesn't look at day over 2- 21 year olds! ;)


By some of what you've said I'd strongly suggest that you follow this lead -- the testing will be incredibly enlightening but get yourself a copy of The Out of Sync Child right away! Be sure that the doc' has full knowledge of this & will consider this in making his/her decision about your son!


Get back to us & let us know how he did, ok?!

Colleen~ Mom of Morgan, 10 -- Madison, 6 & Maxwell, 34months!


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iVillage Member
Registered: 02-19-2004
Fri, 12-03-2004 - 9:01am

I have an eleven yr. old son who is very much like your son, the only big difference is that my son was speech delayed when he was a preschooler.

iVillage Member
Registered: 04-25-2003
Fri, 12-03-2004 - 11:24am

Thank you all so much for your responses. I have to go out at lunch today so will definitely pick up that book.....It's just so hard to help your child when you don't know what he needs. The school isn't much help, they want him medicated period and I asked "for what???" His teacher is supposed to keep him after class a few minutes and help him get his homework all together (that's not happening), we instituted a behavior chart in September (I've seen 1 so far), I did give permission for the Woodcock Johnson test to be done but they balked when I said ONLY if both the achievement and cognitive portions are done (have yet to see that happen)....it's just crazy. Parent teacher conf last week turned into a parent/teacher/counselor conference. That made me mad because I wasn't told that the counselor was going to be there. This counselor had the gall to suggest he be held back and transfered to another school to re-do 4th grade...N O T .....then she went on to suggest that he go to an alternative school for middle school...I told her it was way too early to make that call and that I was not going to make any decisions at all until this testing is complete and we know what we are dealing with.

Of course I am a typical "mother bear" and the school doesn't like that I challenge them and hold them accountable....too bad, so sad. Unfortunately they take it out on my son...so I feel like I'm damed if I do and damned if I dont and in the meantime my son is the one that is suffering.....

Thanks again, I really appreciate all the input and support....maybe someday I can be helpful to someone else going through this.

iVillage Member
Registered: 09-30-2004
Fri, 12-03-2004 - 11:46am

Whoa!


The school is surely out of ling telling you all of those things -- I would direct you to our IEP/504 board at PP too.. the most a school can do is suggest that you bring what they're seeing to the doc & report.... Wow, for them to farm him out is beyond me -- and did you tell them, sure, at the school's expense for they're self-admittedly bowing out?!!!!!!!!!!!!


More later but I had to jump in here!

Colleen~ Mom of Morgan, 10 -- Madison, 6 & Maxwell, 34months!


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iVillage Member
Registered: 04-25-2003
Fri, 12-03-2004 - 3:43pm

My thoughts exactly......I was appalled. They have already made their decisions without waiting for the test results..my son is being targeted, I know it, he knows it and they know it...what they don't know (ace up my sleeve) is that I personally know two people on the school board. I am just waiting for them to put something in writing. Have even considered taping my conversations with them...lol

I am co-cl on the Problems at School board so I have acess to a ton of information on IEPs and 504s along with alot of other info.....and I'm not afraid to use it....lol

Thanks for the help.....I look forward to learning more.....

iVillage Member
Registered: 11-01-2004
Sat, 12-04-2004 - 2:17pm

WOW!

               

 

iVillage Member
Registered: 09-20-2004
Sat, 12-04-2004 - 3:07pm

welcome!! Wow! reading your post reminds a lot of my little guy. He will be four on feb. and we have concidered adhd, he is impulsive, and his ALWAYS on the go, he won't even watch cartoons - he has such a short attention span, a late potty trainer. We think he is such a bright child; even though he is dev. delayed (speech and has hypotonia -low muscle tone). His cord was wrapped around his neck and I had a wonderful pregnancy. I know it is so hard not having a diagnosis. I feel that he could be getting even more help if he did. We have had genetic testing, psychologists, neurologist, but noone can give us an anwer. I would just keep searching and searching for someone to help you. Your son sounds like such a bright boy. I often wonder what hte years ahead of us will hold. G/L and stick around!!!!

Kim

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iVillage Member
Registered: 04-25-2003
Sun, 12-05-2004 - 5:42pm

Rachel, thank you so much for your repsonse.

When Jared was in K there were issues of impulsiveness, inability to focus but I thought heck he's 6yrs old never been in anything other than home day care so I blew it off as being typical behaviors.

1st grade was a nightmare...teacher insisted he was ADHD and "demanded" that I seek medication, wrong thing to do with me..lol So the fight was on. I took him to his doc and was told "ya, maybe but it won't be an issue by the time he's 8." Well, if all my research bears out ADHD is lifelong issue, not something that one grows out of. Teacher that year was horrid, would call me and tell me that Jared was not able to function (would not elaborate, however) she would tell me he was uncontrollable etc. Took him back to the doc and he referred us to a Pediatric Developmental Specialist. This doc spent less than 5mins with Jared and told me it was PDD NOS...well, sugar, now that really tells me alot doesn't it? The school blew off the dx and did their own testing which showed that Jared tested in the 87th percentile and was not eligible for services.

2nd grade was much better. His teacher that year was awesome. Wonderful man that was inceredibly adpet at picking out strong points and using them. He had Jared helping him teach the other kids how to use the computer (he's a bit of a geek...lol ). We had some behavior issues but a behavior chart was implement and Jared did much better. His teacher told me that Jared is incredibly bright but he couldn't find the spark that would make him want to perform or show what he knows.

3rd grade, was the year from hell. His teacher once again insisted he was ADHD and got really peeved at me when I said "we've been there done that and if I cant have stimulant drugs then neither can my son.". Teacher and I butted heads big time. I challenged her on telling my son that "I was going to die becaue I drink coffe" and she told Jared that "he was going to end up in jail, and jail is a living hell." Hmmm wonder how she knows that? Jared's self esteem plumeted and school for him was a nightmare. This teacher is the type that is overly health conscience and would not let the kids bring anything for snack unless it was carrotts, apples etc. BIG problems soon arose, I noticed that Jared's body image was being affected. He would tell me things like "I need to go on a diet" and "I am fat" WHAT?? He is right at average for height and weight. He will still on occassion mention his weight. THEN, one day I get a call from the counselor telling me they are worried about Jared and believe he is suicidal...I about had heart failure. Apparently he had a really really bad day and said to another student that he just wanted to die...this from an 8yr old. To back up a bit here, while talking to this counselor I said "Julie I have no idea what the heck you are talking about." She then said "Oh, geez I'm sorry I was talking about another Jared in 3rd grade." WHAT...my Jared is the only Jared in 3rd grade. OK....back to the doctor, his dr said that it is not at all uncommon for kids to make a statement like that given the fact that they really dont have a concept of death yet. Soooo...onto another Pediatric Development Specialist (this one is the BEST in this state). That dr said he could see how Jared would present an attention problem for a teacher but said that Jared is a bright boy and he saw nothing wrong. We did allow the BASC test to done and the WISC11 but they were horrid...his teacher out and out lied about him....still nothing there to provide for accomodations.

Sooooo we here are 4th grade and it's the battle all over again. I am taking him now to a place called NeuroEducation. They will do extensive testing (over several visits) and hopefully be able to tell me something. I had not even remembered his issues with loud noises etc because they are so seldom an issue anymore. A friend of mine suggested I look into SID...sooo here I am.

I am sure this is a whole lot more than you wanted to know but that's whats happened and that's how I ended up here. I cannot bear to watch my son suffer anymore. I do things for him at home that the teacher doesn't like (I dont'really care...lol). Like if Jared has a writing assignment he crumbles, he will sit and sob. I don't feel there is any reason for that so I let him use the computer...piece of cake, done in no time. I also let him tape his thoughts then he can start and stop the recorder as he wants. Both of these seem to be very viable for him. His teacher calls it "cheating" I don't think so...I think I'm helping my son be successful. She has not mentioned meds to me but the counselor sure has and like I said those are "last ditch effort" as far as I'm concerned. She has told me that she feels she is "fighting a loosing battle." Hmmm lets just give up on the kid then....that really peeves me off.

I hope I havent bored you to tears and that somewhere through my ranting you can pick out some useful information.

Thank you again for your help.....I sooooo appreciate it.

Pat

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