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Do you have an older child who has Special Needs? (Vent)

Posted by on Aug. 17, 2012 at 12:27 AM
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Hi ladies! My name is Amy. I am a 30 yr old mother of two. My beautiful daughter is 26 months old, and my son, the star of this particular post, is 8 1/2 years old. He is diagnosed with PDD-NOS, Intellectual Disability, Epilepsy, and is on medication for ADHD.

A small historyis that he was born pretty early at 27 weeks. He had delayed development from the start. He began having seizures at 11 months old. He didn't sit up until close to 18 months, and didn't walk until around 2 years old. His ADHD "symptoms" (he's not diagnosed yet) were apparent in Preschool (3 1/2-4 yrs old).

Back to the present, we just had a Neuropsych Eval done, and he was newly diagnosed with PDD-NOS & Moderate Intellectual Disability.

Alot of the services we've been waiting to get are hinging on this Eval Diagnoses. I am finding now I am running into "Oh well, they want kids to be diagnosed (with Autism) before their 8th birthday." I am most certainly not going to let these things hinder the help he gets, but it's just really frustrating as a parent. We were on the waitlist for 2 years before we got this eval done, and getting in for the eval appointments in is no walk in the park either!

So I'd love to hear from other moms who have children that have had "long time" issues, but just recently given a diagnoses that "counts" as far as State Services go. Or, even if you can't technically relate, I guess I just need some uplifting advice, suggestions & comments. :-) Thanks ladies.

by on Aug. 17, 2012 at 12:27 AM
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Replies (1-5):
cjsk
by on Aug. 17, 2012 at 11:52 AM
We had nuero psych testing done a.d it was a huge waste of time. Thier big insight for us was that wee needed to make sure she took her meds. DUH!
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Ammie25
by on Aug. 17, 2012 at 11:02 PM

Yeah, the first eval we had, the doc tried to test him at his age level. He is 8 and most of his development is that of a 2 year old. So that didn't work at all. Anyways, they tried testing him by his age, and worked backwards rather slowly, so in the end, they didn't get the conclusive results they needed. The Psych eval I am talking about here is the one where they said, "where should we start?" And I told them, and they were able to get very solid, current information on him that should help us get in the door. :-)

He literally OVERQUALIFIED on the Autism behaviors, but now, is it too late?

sandbuster
by on Aug. 18, 2012 at 5:05 PM

((hugs))

We are waiting on my son's "offical" diagnosis too. Plus the school is dragging their feet on his IEP.

LadybugsMonkeys Char
by on Aug. 24, 2012 at 1:34 AM
My LEKs are 9 ½ and 11 ¾. We have had a long up hill battle since Jeremiah (my second child & oldest LEK) was 6 months old. Yes I knew when Jeremiah was 6 months old that he was going to be my problem child. But it wasn't until he was 7 until a doctor finally started really listening to my concerns. Our family doctor before just kept saying "oh he is just a boy, being a boy"

Shawn (my third child & youngest LEK) I started thinking that there was something off/different the day he was born. It was when he turned 2 and want talking, babbling or really crying that the doctor finally said lets checking his hearing. From there was speech therapy. Two years later got him into a developmental pediatrician. And that finally got the ball rolling for both of them. (In the Introduce Yourself post is a complete list of what they have been labled with) Shawn finally was tested in November to see if the fell on the Autism Spectrum. There is 11 points that they check for, for autism. Shawn tested positive for 10 out of the 11, but since he already had his 8th birthday, he cant be officially labled with autism/aspergers.
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DDDaysh
by on Aug. 24, 2012 at 10:40 AM

 Delayed diagnosing isn't as rare as it seems, which is stupid considering how important early intervention is for so many things. 

I didn't know "right off" that my son wasn't normal.  His older sister had so many issues, that DS seemed fine.  He had horrible Asthma and breathing difficulties, and we knew about those from infancy, but developmentally things seemed on track or even advanced until he was about a year old. 

It was then I started to worry.  He wasn't talking at all yet and had no interest in signing either.  Most people thought I was crazy to worry about that at that age, but I had been an early talker and so had most of my bio brothers, so it was really weird to me.  When he was still only saying a few words by age 2, his doctor finally got worried and ordered hearing tests, but when the hearing tests came back fine just said that we could maybe try speech therapy.  ECI said he didn't qualify since his only problem was that he didn't talk but he understood language, and there weren't any other speech therapists that took our insurance within 2 hours of where we lived. 

By that time I'd noticed more and more that there was something "off" about him, but it was hard to describe.  People who were only around him a short time didn't notice anything.  So many of his behaviors could be attributed to shyness or "being a boy", so it wasn't until you saw them all consistently over time that you realized they just weren't quite right. 

He finally started talking and that's when I really got worried.  He could go on and on about the clouds or the rain or whatever he wanted to lecture you about, but wouldn't answer simple questions like "what would you like to drink?". 

At 4 it became clear that he was very immature for his age, we also finally qualified for speech therapy through the school for an articulation delay.  (BTW, therapy worked wonders for that part of his issues.  With just 2 years of therapy he "graduated" out, and now at age 8 there aren't any signs of the articulation problems left). 

However, his doctor refused to take my concerns about the rest of his development seriously.  It wasn't until Kindergarten that we finally go a referral for diagnostic testing.  The results came back with a primary diagnosis of ADHD with a secondary diagnosis of Anxiety and a borderline diagnosis of Asperger's.  It is worth noting that even though his pedi had to be coaxed in to giving the referral and still told me that he was probably "just a boy", his diagnostic write up lists his ADHD as "severe" because he meets almost every criteria on the DSM.  Strangely, the couple he's missing are the ones that people typically associate with ADHD, primarily the "acts as if driven by a motor" and the one about constantly running & climbing. 

I suppose that is it is so hard to see if you're only around him for a minute.  He's always moving, but he moves in small ways, he rocks or messes with his fingers, or moves his legs around, or shifts his seat.  He's rarely still, but the movements aren't large so they aren't easy to identify as "hyper". 

So, he was 6 when he was diagnosed.  By that time I had gotten a better job and we wouldn't have qualified for any state services anyway.  I've never seen an age requirement on any of the SSI paperwork though, so I guess it must depend on the program you're looking at. 

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