introduction

iVillage Member
Registered: 04-07-2003
introduction
11
Fri, 09-05-2008 - 9:23pm

Hi-
I wanted to introduce myself, I have been lurking for a while, and now that we have a confirmed diagnosis I know this is where I should be.

My daughter Kaia is 4 years old, she's had sensory issues since she was a baby, I am just finding out now all about sensory issues. I never really did know that most of her issues were sensory, since none of the doctors we've taken her to ever told us this disorder existed. I found out about it from a friend who was lucky enough to meet the right therapist who told her about it. We finally found a developmental pediatrician who believes in SID and actually has recommendations to help her. Most of Kaia's symptoms are:

- can’t handle loud sounds, covers her ears when she hears a loud sound
- likes to be in tight places, either hugged or sitting behind me on the couch
- very picky eater, prefers crunchy foods, and she will not try anything new. She also will not eat any foods that have a liquid and a solid mixed (like macaroni and cheese or soups of any kind.
- does not get dizzy at all, she can spin on a swing and it really doesn't affect her
- Her eye contact is amazing when she is physical, not great when she is sitting calmly
- hand flapping when excited, it isn't a stim, it is really that she is trying to get her energy out.
- loves rough physical contact, jumping on me, or her friends and tumbling a lot.
- she is so sensitive to sound that she has a very hard time with bugs, she actually covers her ears when she sees one inside and can get hysterical. The doctor told us that she is probably hearing the bug which hurts her ears.
- has temper tantrums that I cant calm her down, this usually happens when something she expected to happed cant or wont - like if we were supposed to go to the park and it rains she just cant get herself into the mindset that we need to change plans.

I am sure I am missing some but right now that is all I can think of.

The developmental pediatrician wants her to get 2 sessions a week at a sensory gym in addition to her 1 OT session at school and her 1 private session she has at home.

She also recommended that she start a Therapeutic Listening Program. Basically she’d need to listen to cd’s 2 times a day for 15 minutes and it is supposed to help her with her sensitivity to sounds/noise.

Has anyone heard of this before, and if so do you know anything about it. I just contacted 2 OT’s in our area that are “certified” in this therapy but I don’t know much about it except what I’ve read online.

Thanks for reading my post, and if you have any suggestions that would be great.

Alison

kaia & marin
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iVillage Member
Registered: 09-27-2007
In reply to: alison_nj
Wed, 09-10-2008 - 7:50pm
Love what you created out of that trapoline.....I want matt to make one for Gabe now....thanks for sharing your picture....
Jessie Mommy to Gabe (5.8 yrs old ASD, CAS, SPD) and Zane (1.10 yrs old ESD)

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iVillage Member
Registered: 04-07-2003
In reply to: alison_nj
Wed, 09-10-2008 - 4:28pm

hi-
your husband did a great job with the trampoline. i keep hoping we'll find one at a garage sale or something. we're so not handy in this household.

thanks for posting the picture, i guess we really do need to look into getting her a trampoline.

alison

kaia & marin
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iVillage Member
Registered: 01-13-2008
In reply to: alison_nj
Tue, 09-09-2008 - 2:41pm

well ours certainly doesnt look as fancy as the expensive trampolines but we got a simple one from walmart for 20 bucks and then some pvc piping for about 10 from home depot and made a handle bar, ill attack an old pic for u to see. maybe its something u guys can do too!!


ive never heard of an actual


iVillage Member
Registered: 04-07-2003
In reply to: alison_nj
Tue, 09-09-2008 - 2:28pm

hi amy-
thanks so much for posting. i think kaia can sit for the music, i am just wondering if she will listen to it, if it is not what she likes. she normally likes laurie berkner, wiggles etc......

where did you find a $20 trampline from? we were looking to get kaia one, but the ones i found with the handrail for holding were expensive.

does your daughter go to a sensory gym? we will be starting that and the listening program soon. i am hoping that they both help her with the sensory issues.

thanks again for posting.

alison

kaia & marin
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iVillage Member
Registered: 01-13-2008
In reply to: alison_nj
Tue, 09-09-2008 - 12:02pm

Alison , Hi & Welcome.. your little girl sounds alot like mine! We tried the theraputic listening therapy and i gotta say it didnt work for us. That may not be the case for u though so dont let me discourage u, but the thing is , the child has to be able to sit still in order to wear the headphones and well my daughter just couldnt handle that, nor did she like those things on her ears!


One thing i think would be great for ur daughter is a $20 excersize trampolene, weve had one for my daughter since she was 2 , its in her playrm and its


iVillage Member
Registered: 04-21-2008
In reply to: alison_nj
Mon, 09-08-2008 - 5:09pm
(HUGS) and welcome!

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iVillage Member
Registered: 09-27-2007
In reply to: alison_nj
Mon, 09-08-2008 - 12:49pm

Glad to hear that you had a wonderful eval and that Kaia isn't autistic.

Jessie Mommy to Gabe (5.8 yrs old ASD, CAS, SPD) and Zane (1.10 yrs old ESD)

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iVillage Member
Registered: 04-07-2003
In reply to: alison_nj
Sun, 09-07-2008 - 8:02pm

hi steph-
thanks for posting. yes the sondory gym is a gym with all sorts of equipment, like ball pits, swings, slides etc.... to work on their sensory needs.

i look forward to chatting with you.

alison

kaia & marin
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iVillage Member
Registered: 04-07-2003
In reply to: alison_nj
Sun, 09-07-2008 - 8:01pm

Hi Jessie-

Glad to see you here too. Kaia's speech has exploded this summer she is saying complete sentences and actually starting up conversations all on her own, it has been amazing. We started private OT with her this summer since she doesn’t get any OT in the summer program at school. We noticed that just about the time we started the private OT her speech started to increase incredibly.

We took Kaia to a new developmental pediatrician in august and then for the follow up with the Dr last week. She is in NYC and was highly recommended, so I was really looking forward to what she had to say. Our previous dev ped, was not very forthcoming and very much "by the book" and when we took her there last year I just didn’t feel like he was really seeing everything.

This dev ped in NYC was just amazing and really saw kaia for all that she is. She is the first Dr who told me that she has SID; my old dev ped never even mentioned that even with everything we told him. So I feel so much better knowing that we didn’t have undiagnosed autism for all this time, and it is something we can work on.

We are waiting for the final report from the Dr this week, but it looks like kaia has hypotonia, pragmatic speech delay and SID. We now need to figure out how we are going to pay for all the extra therapies she needs. Right now at school she receives 1 private and 1 group speech and 1 OT; we are in mediation with the school now since we asked for a 2nd OT which was refused. We have a private speech and a private OT each week at home, she wants us to add 2 sensory gym sessions and the listening program as well. All those private services will be about 500 a week, and our insurance doesn’t cover anything as of right now. My husband is going to call the health advocate that works for his company because all of this is going to cost us 24,000 a year which is just going to be very tough. We are hoping that now since she has a diagnosis our insurance will pick something up – at this point anything will help.

Thanks again so much for responding and reading this lengthy post.

Alison

kaia & marin
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iVillage Member
Registered: 09-27-2007
In reply to: alison_nj
Sun, 09-07-2008 - 9:28am

Hello and welcome.

Jessie Mommy to Gabe (5.8 yrs old ASD, CAS, SPD) and Zane (1.10 yrs old ESD)

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