When did you KNOW/ introduction

iVillage Member
Registered: 10-18-2006
When did you KNOW/ introduction
14
Fri, 07-06-2007 - 9:44pm

Quick introduction first, My name is Brook, I'm a 27 year old single mom with an awesome 5 year old girl, Emma. I'm a full time social worker for the state. Emma is 5 and about to start Kindergarten. At age three I realized we had a problem. She would have regular tantrums with biting and kicking. I got o the point where I could figure out when they would occur. As soon as we got home from any extended (more than an hour) outing, especially if that outing was to somewhere noisy. One day in January she bit me to the point of drawing blood, through my jeans. I staffed with my supervisor the next day, trying to figure out what we would tell a client to do. I called the mental health center and services started shortly there after. We did case management and received several different diagnosis. The first one was ODD, then mood disorder, then several sleep disorders, now currently ADHD. Until the last one Anxiety and ADHD were on rule out status. The ADHD was handed down with a script for Adderall two months ago. Emma's behavior has changed over the past two years, but some things have stayed the same. Since adding the Adderall some things have worsened/intensified.
She has ALWAYs has a sensitivity to sound. In the nursery, 12 hours after birth, the nurses commented on it. She doesn't like public restrooms because the toilets are too loud. She covers her ears regularly. She doesn't play pretend, she plays by lining her toys up. She's always appeared to be the popular kid in daycare. The kids come running to her, but she doesn't seem to care about them. She has to be prompted to make eye contact, sometimes to the point of holding her face.
Since starting the adderall she has become more hyperfocused. She will get so into something that she truly won't hear anything. She has also become more obsessive about finishing. If it's time to be done and she can't finish it's an all out tantrum.
Today I found out that she's been obsessed with building pyramids. Any center she has played at this week, she has attempted to build a pyarmid. This week she began making odd noises in class.
The dr's have asked in the past about Aspergers or Autism, and I've always said, "no, she has friends." Now I'm the one thinking. I've done lots of reading and it seems to fit, but I'm not sure if I'm just grasping at straws. She has a psych appointment Wednesday and I plan to take all this info to her. But before then I wanted to ask, at what age did you "KNOW" something, and what was the final straw that made you accept it?

Thank you for making it through this really long post.

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iVillage Member
Registered: 11-28-2006
Sat, 07-07-2007 - 3:25am

Well I knew something was up when my 11 yr old was small, but people told me not to worry, cuz it was a "Boy" thing, or his lack of speech was because he was learning a different skill at the time.

He had rages when his routine was changed, but I thought "all kids don't like their schedule changed" so I ignored it.

Well last Oct I was on a Dysgraphia board, which I believed he had, and he does, and someone mentioned Aspergers Syndrome. I didn't know what it was and started googling out of curiostity.

My jaw dropped, as they were describing all of my sons quirks that I never understood.

That was when I knew I could put a name to it.

BTW my son is very social, but he has problems and alot of times he separates himself from the group to do his own thing. He has done this for years and it always made my husband and myself think "why does he do this?)

Lainie

iVillage Member
Registered: 11-28-2006
Sat, 07-07-2007 - 3:26am

OOOOPS I also wanted to say WELCOME! This is a great board, with great ladies! Take off your shoes, kick back, and pick a cold beverage of your choice :)

Lainie

iVillage Member
Registered: 08-10-2006
Sat, 07-07-2007 - 9:10am

Hi Brook!
Welcome!!! My son is Nick. He is 5, dx'd ADHD in March, that was the easy part. The Asperger's came just last month, but we knew something else was up. We tried Adderall XR first and the results were not so great, he was very moody, emotional, he hyperfocused to the point he was miserable, it was like walking on eggshells around him. Not only that, his appetite was poor and he started having problems sleeping and developed and eye blink tic (very minor). We switched to Metadate CD (Ritalin) and had MUCH better results. That said, you might want to talk to your doc to make sure the Adderall is the right med for her. Adderall is a very strong stim for ADHD and that might be making her hyperfocus.

So, about a month later, dh shows me an article about Asperger's and says doesnt this sound like Nick? The lining up the cars, the way he is around his friends, the outbursts/rages (pre-meds), etc. I started thinking about all the little oddities and quirks that we just thought were his personality and writing them all down and really watching him, making notes. I watched his dvd's of home movies and such and we did the Asperger's eval's for the docs and we got the dx. It is not an easy thing to "accept" the dx, actually hearing it from the doctor. Even though we had an idea that is what it was. I struggle with it sometimes every day, last night I sat here in my chair and bawled, to be completely honest. I dont know how to explain how I feel, Nick is extraordinary, he is so smart and funny, and quirky. But when I see him stuck on something, break down and meltdown, I get angry that this happened to him. I dont feel a loss for a normal child, to me, he is normal. I accept it every day that I look into his beautiful blue eyes and hear him call me Mommy :). I don't know if that helps you or not...
Christine

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Christine

iVillage Member
Registered: 06-02-2004
Sat, 07-07-2007 - 3:03pm

First of all, welcome to the group! I know you'll find it very helpful. I think I always knew something was "different" about Lily. She has always had poor eye contact, hyperfocused on things that other babies/children wouldn't have even noticed, and never enjoyed physical contact. It took a while for us to convince ECI that something besides gross motor/speech delays was going on. They kept telling us that she smiled too much to have autism. Apparently, they were not informed about the whole spectrum. Now that she is almost 5 yrs old, some things have gotten better but others remain the same. She is very popular with other kids and adults, but she could care less. She is playing better with her older sister now, but still has almost no interest in other children. To be truthful, my dh and I were relieved when she was dx'd with pdd-nos at age three because it validated the concerns that we had for years about her. So many people just kept telling us that we were worrying over nothing. It was very frustrating. I think that you just have to go with your mother's instinct and do what you feel is best for your child. Having answers can be very helpful to both you and your daughter. I hope the the appt goes well.

Amy~mom to Natalie (10 yrs.) and Lily (4.5 yrs, pdd-nos, Sensenbrenner syndrome)

iVillage Member
Registered: 06-25-2003
Mon, 07-09-2007 - 4:19pm

Brook,


I thought I had replied to you earlier but the iVillage gremlins seem to have eaten my post.


So welcome to the board!


I "knew" by degrees, I guess.

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 03-20-2003
Thu, 07-12-2007 - 9:42pm

Welcome to the board, Brook.


I seem to have missed your cut-off for your appointment, which was yesterday.

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iVillage Member
Registered: 09-29-2000
Fri, 07-20-2007 - 6:24pm

I had a lurking feeling something wasn't right by the time Carl was 2 or 2.5, but nobody agreed with me, including DH. And I wasn't quite sure myself. Iffy social skills-well, he doesn't go to daycare. Hadn't quite hit some speech milestones-well, he's a boy, sometimes they do that, right? Never pretended-well, OK, maybe it's just not his thing. Lots of extreme temper tantrums-OK, swell, I have one of the difficult ones. But every time I read "WTE the Toddler Years" etc, I couldn't shake the feeling that I had the owner's manual to the wrong model.

His conversation was more than 50% echolalia at 3.5, but I'd never heard of such a thing and I just thought it was amusing. But when he did it in front of my pediatrician, I saw the look on her face and I realized she'd just seen a red flag. She referred him for speech evaluation, and when I googled "echolalia" I was astonished when a bunch of references to autism came up.

Huh? He's not autistic. He makes eye contact, he interacts plenty, and he doesn't sit staring at fans or anything. But when I started reading about the higher-functioning forms, I had a "Eureka" moment-all of his quirks started making sense. And so did some of mine. I'm not sure I would have been formally diagnosed with anything if I'd been 30 years younger, but I did have some ASD traits growing up-I've shaken off most of them.

Lynda, Carl (12/1/99) and Erica (6/18/03)

iVillage Member
Registered: 09-29-2000
Sat, 07-21-2007 - 9:40am
Oops, forgot to finish my post. Anyway-DS's speech pathologist recommended him for evaluation, but the developmental ped didn't quite think he was AS at the time. We saw a psychologist last summer who gave him the PDD-NOS dx.

Lynda, Carl (12/1/99) and Erica (6/18/03)

iVillage Member
Registered: 04-28-2007
Sat, 07-21-2007 - 7:59pm

Hi Brook,

I am finally getting low on the board to say "Hi" and "hello!" Lol

Liam (7) was my first so it was tough to figure out what was normal and what was odd. Although from the first night he began screaming bloody murder in the hospital. they "encouraged" rooming in, and I was a friggin' basket case by 4am the next morning, (finally dawned in on the nurses to give me a Tylenol 3 and take him back to the nursery for a bottle-nursing was a nightmare too, ate ALL THE TIME).

After that we ran into multiple ear infections, colds, synus infections, needed a nebulizer, had reactive airway disease (infant asthma); also dx with GERD. All his behavior was linked to his illnesses, but at about 16 months I was beginning to wonder. I took Liam to gymboree, and he was all over the place, wouldn't sit with me in circle time, was always off around the equipment just busy ,busy busy, on the go.

He was overly aggressive with his peers and by age 2 when we moved (to a county with crappy services and daycares....duh on our part) his and our world caved in. Behaviors worsened, and it was so hard to deny what we saw. I began researching and by age 3 figured sensory integration dysfunction was a given, which an OT confirmed, and we began therapy. I took him to EI, but he seemed so hf there they refused to give him services. By age 4 his behaviors had become so off the wall we needed to go the route of a pdoc and he was dx with mood disorder-nos. The play therapsit we saw suggested pdd, (I had to laugh as I pretty much always knew that). When we moved to Ga we FINALLY had a school system that cared and listened.

He got the ASD dx and placed correctly. the rest is history, life is improving everyday;) well, with ups and downs...

Dee

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iVillage Member
Registered: 02-10-2006
Thu, 08-09-2007 - 3:24pm

I'm new here.

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