[rjvpmn]

After reading a few of the posts I can see where you might think there are attachment issues. Our son who is not adopted and born premie wasnt a cuddler.. and never seemed excited when we got home .. like yay mama or dada.. didnt do well in new situations. I know now as a 12 yr old he is VERY attached it is just him.. he hates smells or new situations.. he is just him. Everything is heightened for him. I just thought I would mention that to give you hope.

[mommytoEli]

dawn....good luck...let us know what happens at the eval. madelyn sounds like eli. except he likes crunchy lumpy food, not smooth food, but will lick a floor...or a toilet...or a car tailpipe. weird

I love her so much and I just want her to get the help she needs.

this sums up everything i feel when i watch him during the day.

[mamaskoby]

Hi everyone,
I have been lurking here for awhile. My ds is getting evaluated tomorrow for SID and his speech. He is 18 months now, doesn't say one word (came home at 1 year) and is a major thrill seeker, cannot stay still, eats rocks and dog poop as well as many other things that are so gross.
At first I thought he was "hyperactive" but our pediatrician kept saying he is normal. I started looking up what else it could be and came across SID. Asked my peditrician for help and he kept saying my son is still normal and fine. However I have a 5 year old and know this is not normal behavior. Finally I called EI myself and they said he certainly qualifies for an assessment!
I will keep you all posted and let you know tomorrow!

[angelkisses0102]

i know some people would think that it was good news....but him not qualify doesn't make him automatically stop falling all the time because he toe walks, you know?

I so get you...is he getting private OT? Let me tell you, that is what is working best for DS...utterly amazing what a good sensory OT can do.

One other word of caution...just because he isn't delayed today, doesn't mean he won't be. I hate the way that sounds...but let me explain...DS was on target (or below at an acceptable level) until he was 3'ish...then he basically stopped moving forward developmentally. Once he was tested through the school district at almost 4, he was significantly developmentally delayed. It is easier for them and us to compensate for the SPD/SID when they are younger, but once they are preschool/pre-K/grade school level...the delays and issues are more obvious. Even though DS is a classic SPD/SID kid, even with all his 'labels' he did not qualify for additional OT through the school district (outside of his special needs pre-K.) And he still can not even write his name (well) and he starts Kindie is 3 weeks. You can bet I am fighting to get OT added to his IEP along with his current type weekly school ST. I am also fighting to add PT for his weak shoulders.

So longwinded way to my point is...don't give up yet...he still may end up qualifying for the help he needs and deserves once he ages out of EI.

One point with sensory issues and most pedi's...they are clueless...really, honestly clueless. Our pedi never saw DS's issues as issues. But I knew they were. Always trust the mommy gut...while I did, I followed the pedi's wait and see advice for a bit too long...and DS missed out on valueable therapy time.

To all of you who are new to this...it can and does get better...with lots of work, therapy, and of course love. I know parenting my SPD son has made me a better parent and a better person as well. And as always, I will share the great progress my now 5 year old son has achieved...he is getting better and better daily. The transformation in him in the past few months (since he started OT) is noticeable to all who know and love him. He is a different child than he was...a happier, more confident child...who is so much smarter than any of us realized. I can't wait for him to go back to school...his teachers and therapists will be in shock. While he is still not ready for a traditional Kindie classroom...I fully believe he will eventually be able to move into a mainstream classroom...and just be a 'normal' kid in the class.

Hang in and God Bless...

[Lauren57]

I agree wtih angel kisses about getting private OT. My son never qualified for EI, special needs preK, etc. because he has never been delayed in any area. Still, the sensory issues were leading to some major issues...for example the teachers in his first preschool were convinced he couldn't talk (when tested his expressive language was 95th percentile) because when he was overstimulated he just shut down. A preschool change (where they were more open to the accomadations he needed) and OT have made a huge difference. Just following the "sensory diet" the OT set up for him was a huge help. Good luck.

Lauren mom to Michael, 5 1/2 and starting kindy next month

[krafmatic]

We too are going the private OT and ST route. He now does not qualify for either (even though he can't say a single word, has difficulty emptying his mouth and has obvious poor mouth muscle development). I suppose we could push really hard to get him enrolled for ST with EI but The program he goes to is much better at incorporating his SPD and attachment concerns.

Yeah, between private ST, OT, and attachment therapy for 2 kids we are hemorrhaging money.

[AngelQT]

Hi GUys...

Been lurking for a while... But wanted to let you all know, Angelena has been confirmed to have SID.

Long story short... (Watch it be long)....

Angelena came home at 5 1/2 months. Severally delayed... Had Plagiocephaly (deformed head), she wore a Doc Band for 6 months. Tons of changes, still a little off, which makes her Unique~ Meantime, possible Hip Displasa, so off to Scottish Rites Hospital in Dallas. They seem to think that because of the delay, they didn't want to diagnose her with anything yet, but do exercises with her hips... Build muscle up... and it may possible tighten up the hips... She starts walking at 14 months... Hips still click off and on... BUt, now she is ALWAYS falling... Hard... Banged up head... Doesn't stop her... SHe would fall and get back up and keep going... Even when there was blood... 18month check up... Offically Diagnosed with CP, not only her hips were effected but pretty much her left side... Less cordination.... Yet, she compensates with her right side, so it wasn't that noticable to me... (I felt like a bad mommy for not noticing)... 6 months of PT, and she has improved... Alot, but I now see the difference, and notice when she gets tired and her left side becomes lazy... And of course, she is our little ballernia... Tippy toes...

Which brought us to last weeks appointments... She was tested and I was questioned, felt like I was getting the 3rd degree... Little Miss Angelena was confirmed to have SID. Not only are we dealing with the terrible 2's, but with CP and SID, well lets just say, my hands are runith over!~

Angelo has been home for 6 months, and he is COMPLETELY OPPISITE~! Kick back... BUt he HOLDS his own when it comes to his sissy picking on him!~

Angelena's newest thing is washing her hands... EVERY 5 minutes... WHich is a good thing... BUt, she tries to do it herself, and uses the step stool in the bathroom... I have to turn off the HOT water under the sink, and put safty handles on the door to keep her out.

I know I said this wasn't going to be long... SO I will stop here...

OH~ 1 last thing... SHE LOVES ALVIN SIMON AND THEODORE... She got some jiggy on with them this weekend... I tried to tape and put it on my blog... CHeck her out!

[mommytoEli]

welcome to the group no one really wants to be a part of i'm sad to hear about all the things that precious little girl has to deal with. eli LOVES alvin, simon, and "feed-a-dore" too. he walks around saying "major rock star" and "denial" ALL DAY LONG.lol.

[Mamma]

Wow, am I glad I found this thread!
My son was just diagnosed with this. Here some info. I'm sure I'll miss something - it's 12:30 a.m. here and I should REALLY be in bed!

here we go.....

Age of child at homecoming: 18 months
Age now: 6 years old
If adopted, country of birth: Domestic
First signs of a problem: first day we met, but thought it was attachment issue and stress issues.
Age at dx: 6 years old - a few weeks ago.
--------------------------------------------------
Exhibits signs of tactile dysfunction, major signs of proprioceptive dysfunction and auditory dysfunction.

Academically - above average. No problems with speech, movements, coordination, etc. LOVES football, etc. LOVES swimming. Family see him often, do not see any concerns. Think he's a typical boy.

Type of treatment: Don't know! Still trying to figure that one out. Trying to find a "parenting technique" that works for the tantrums which can appear at any given time due to any small irritant. Some days are good and other days are not. Redirection seems to work at times. Rewarding positive behavior has also worked....at times. It's sort of a hit and miss thing. KWIM?

Is attending counseling. I try to read anything I can get my hands on. Considering TSS for school.

Oh goodness.....milk. I saw that on one of the posts. He absolutely LOVES cheese, cheese sticks, chocolate milk, cereal....... Oh boy. Maybe that's something I should consider.

I also saw something recently on an amino acid. What's the name......Theanine or something like that. Supposed to have a calming effect.

[Dawnb93]

Oh how I hate to be the one to keep this thread going, but..... we've officially joined the group. I think. Madelyn was evaluated by our Early Steps program on 8/20. At the end of the evaluation, the lady said something about Madelyn's eating issues being related to sensory issues. Then today in the mail I got a letter giving us the name of Madelyn's Occupational Therapist. I still don't have the official results of the eval yet, though, so I'm not sure exactly what all they found. Well, at least now we can start getting her the help she needs......

Dawn

[mommytoEli]

i know this is not a group people WANT to join...but welcome anyways! you already have an S, so i'll send you a medal.

[krafmatic]

I guess I can make Ian's status official. He was dx 1.5 weeks ago. Thankfully his SI issues are not nearly so bad as Gabe's...of course considering his latest news that would seem overkill wouldn't it?

One of the q's we have with Ian's eval was concerning his nstagmus...it is a possible "symptom" of PVL. I'm not sure it matters what the cause is...I assume we would treat it the same, although I suppose if it is related to PVL our hopes for improvement might be a little less bright. Then again, since I'm still trying to find my own a$$ after last weeks bomb I could be totally off the mark

What an interesting ride this has been.

[NJRach]

Add me to the club. We just came home from vacation, where we watched Manny take off on the beach, never once looking back. Ditto at the campground and restaurants. He puts things in his mouth - coins, ice, Legos, etc. He's a major thrill seeker. He loves for the swings to go as high as possible, swinging in a blanket, spinning until dizzy, and riding his toy car down a steep hill out back.

Although he puts things in his mouth, he has bad muscle tone and drools constantly, at age 2 1/2.

He was in EI for 6 months and improved greatly, but recently tested out. The kid is very smart, so he passed all the steps. He'll see a place once, then six months later recognize it when we pass it. His hearing is also extremely sensitive and he can spot a tiny piece of fabric in a photo and know who's clothing it is.

I have two bio children so I know this is not normal, but EI seemed only to help to a certain point. Now we just try to accomodate him, like getting him out to the hill to roll his cart down twenty times in a row (yep) or walking him to the library and back - about 2/3 of a mile round trip and he sometimes runs on the way home.

One other thing - he has to wear a harness when outside, because he will get distracted things and take off. You never know if he's going to dart into the street.

We, like many others, wonder where he'll be in twenty years - still on his harness?

Here are his stats:
Born in Guatemala, FM said he was a preemie, but that wasn't in the medical report

Age at homecoming - 14 months

Home for 18 months now

This is a great club - NO one understands SI. They think you're a neurotic parent.

Rachael

[krafmatic]

Originally Posted by NJRach

This is a great club - NO one understands SI. They think you're a neurotic parent.

Rachael

Isn't that the truth. Often times people say "They look like they are doing great! All it really takes is love." I just want to laugh...and cry.

[angelkisses0102]

Originally Posted by krafmatic

One of the q's we have with Ian's eval was concerning his nstagmus...it is a possible "symptom" of PVL. I'm not sure it matters what the cause is...I assume we would treat it the same, although I suppose if it is related to PVL our hopes for improvement might be a little less bright. Then again, since I'm still trying to find my own a$$ after last weeks bomb I could be totally off the mark

What an interesting ride this has been.

My DS has nystagmus...in his case no PVL...and no major vision issues we know of...he is 'functional' in a normal sized, well lit room. He is just starting Kindy so we will soon find out how/if it impacts his learning and reading abilities. I personally feel his nystagmus and sensory issues are all related...neuro based issues (he had a minor IVH at birth, not a preemie, and that may play a role in it.) Plus DS is 'night-blind'...most likely his end diagnosis will be 'Congenital Stationary Night Blindness.'

I don't know if you aere familiar with Dr Hertle Childrens Hospital of Pittsburgh - Hertle, Richard W., MD but he is 'the' nystagmus specialist.

You are in our prayers! All the best and hang in!