Let's introduce ourselves.....

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Posted by avamamma

OMG, I am soo happy to see this new forum.

I am literally losing my mind right now over my 4 year old DD, Ava.

She has a ton of sensory issues, but the worst is that she barely eats anything and does not sleep. The tantrums are constant also.

I got her evaluated last spring and got OT 2x weekly and Speech 3x weekly at Kidz Therapy. It helped a ton, but ended when the school year did.

Over the summer, her behaviors went backwards and now are worse than ever.

She nows gets services in an Intergrated Pre-k class 5 days a week, for 2 1/2 hours a day.

When I went to her Parent Teacher Conference, they said they have no problems at all, that she is an angel..

They said not to expect any services next year for Kindergarten.

I am meeting with the Committee on Thursday. I will throw myself at their feet and beg for more help...any help.. I cannot continue this way

I can't even take her to a store or out to eat. I believe that she may be hyperactive also.

My heart is broken... I blame myself for her problems everyday...and I have a beautiful 8 week old Baby Boy that I can hardly pay any attention to.

We live in West Islip, and would love to get together. At least with all of you, you will understand when she is acting up and not judge me!

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Posted by MrsR51807

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Posted by avamamma

OMG, I am soo happy to see this new forum.

I am literally losing my mind right now over my 4 year old DD, Ava.

She has a ton of sensory issues, but the worst is that she barely eats anything and does not sleep. The tantrums are constant also.

I got her evaluated last spring and got OT 2x weekly and Speech 3x weekly at Kidz Therapy. It helped a ton, but ended when the school year did.

Over the summer, her behaviors went backwards and now are worse than ever.

She nows gets services in an Intergrated Pre-k class 5 days a week, for 2 1/2 hours a day.

When I went to her Parent Teacher Conference, they said they have no problems at all, that she is an angel..

They said not to expect any services next year for Kindergarten.

I am meeting with the Committee on Thursday. I will throw myself at their feet and beg for more help...any help.. I cannot continue this way

I can't even take her to a store or out to eat. I believe that she may be hyperactive also.

My heart is broken... I blame myself for her problems everyday...and I have a beautiful 8 week old Baby Boy that I can hardly pay any attention to.

We live in West Islip, and would love to get together. At least with all of you, you will understand when she is acting up and not judge me!

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Hello~
I am an OT working with EI through HS students. I saw that you said your daughter doesn't sleep. Does she have difficulty falling asleep or staying asleep or both? I may have something that can help her sleep. Maybe you can try it. I have had pretty good luck using it with some of the kids I treated. Let me know!
~Tara

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Hi,
My DS's name is Lucas and he is 22 months old today . I just had an EI eval done over the weekend in which he qualified for speech and special ed services. I actually thought Lucas had more of an expressive language delay but it turns out it is more receptive.

Lucas has chronic ear infections and has an appt with the ENT in a week. He had an ear check with the ped on Saturday and he still has fluid in his ears, so I know this could affect his speech and even motor skills (due to equilibrium).

An OT is coming to my house tomorrow to do an OT eval. We have our IFSP meeting at the beginning of December.

I am also in the field (I'm a school psychologist) so this was a very humbling experience for me. I wasn't expecting Lucas to qualify for anything but speech. That being said, I want him to get as much help as he needs. I hope that I can be a resource to all of you as well .

I just saw this board!

I'm Michelle and Jordana is 2 1/2. She has sensory issues and processing issues resulting in speech delay. She started EI services after Labor Day- and also started preschool. We live in Manhattan.

Jordana gets speech and OT 2x a week for 30 minutes. We just started OT at a sensory gym last week. She also gets special instruction 1x a week for 60.

I have definitely seen an improvement in the last few months. Between starting daycare and the services, she is able to express her needs. Her grammer is off- and she doesn't do great with open ended questions "what did you do today?..." but she is improving.

her tantrums are so much less and so much more managable.

However, DH has difficulty with her being defiant when he gets her dressed and takes her to daycare in the morning.

I've refrained from posting on this thread because we are still in the evaluation stage. Today was his last. We didn't have our meeting yet, but this is what they are saying:

He has a sppech delay. Some sensory issues. I was told by the psychologist that many of his behaviors are ADHD specific, but she is not making that diagnosis yet because she believes that behavior therapy will work with him. She said it's really difficult to diagnosis ADHD at this young age.

So, I will keep you all posted when we get the final report and diagnosis.

What a wonderful board. 's to all you strong, amazing mommies!!!


DS is 26mos and was diagnosed PDD-NOS back in July. He's been receiving speech, ABA, OT (for sensory issues) and PT (his foot angles in and he's clumsy).

We made the call because I noticed some strange sensory stuff and he wasn't really talking. In the past three months...he has had a word explosion and is basically a parrot. He knows and can identify isolated every letter of the alphabet and 1-20. His problem solving skills are through the roof. He can now follow directions and asks for things when he did NONE of this before. He still visually stims a bit but it's usually when he's bored. We're working on that. He's a great sleeper and eater. Although, he does gag a bit when I put various textures on the same bite. All his therapists feel like he will declassify by the time he's ready for school. EI has been amazing.


Steph...I'm glad you're finally getting some concrete answers. Anything you need...

I haven't been on LIF much lately and I'm so glad I looked around today- I just found this board

My name is Denise and my son Ethan has X-linked Hydrocephalus. It's a mutation on the L1CAM gene that includes him not being able to drain & regulate brain fluid. He's currently 19 months old, but was born at 36 weeks.

We found out when i was PG that he had severe hydrocephalus, but didn't know it was genetic until they did blood tests after he was born. We were told pre-delivery that with how severe the hydrocephalus was, he would most likely be a vegetable or severly mentally retarded. We were offered the option to terminate soon after (around 28 weeks). It was a difficult decision, but we decided we needed to give him a chance. Soon after he was born he had 2 different surgeries to put in a shunt (to regulate his brain fluid). After 9 rough weeks in the hospital (with many issues, rollercoaster rides and nearly losing our little boy) he came home. The doctors told us he will most likely never walk or talk.

Ethan has adducted thumbs, low tone, feeding issues, gastro issues, etc. EI began when he was around 2 months old. Now he's up to 8 appts a week, 2 with each therapist (PT, OT, Sp.Ed & feeding/speech). We are so amazed at all the progress he's made. He can now roll over to his stomach, pushes to sit with a little help, sits & plays pretty solidly when placed, can now put weight on his legs to stand with help, hands are a lot looser, can understand simple things we never thought he would, can say Ma ma, Ba ba, Na na, and just started with dada sounds, etc.

There's so much more, but you get the idea. We are so proud of our little boy and so far, as you can see, doctors don't know everything. Yes, Ethan is delayed, but the point is that he's improving everyday and will be the best Ethan he can be . If you have any questions, feel free to ask. We love all his current doctors & therapists and we're so grateful for EI!!

I'm so happy this board is here and I would love to chat & GTG with you lovely ladies

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Posted by BMonster

I haven't been on LIF much lately and I'm so glad I looked around today- I just found this board

My name is Denise and my son Ethan has X-linked Hydrocephalus. It's a mutation on the L1CAM gene that includes him not being able to drain & regulate brain fluid. He's currently 19 months old, but was born at 36 weeks.

We found out when i was PG that he had severe hydrocephalus, but didn't know it was genetic until they did blood tests after he was born. We were told pre-delivery that with how severe the hydrocephalus was, he would most likely be a vegetable or severly mentally retarded. We were offered the option to terminate soon after (around 28 weeks). It was a difficult decision, but we decided we needed to give him a chance. Soon after he was born he had 2 different surgeries to put in a shunt (to regulate his brain fluid). After 9 rough weeks in the hospital (with many issues, rollercoaster rides and nearly losing our little boy) he came home. The doctors told us he will most likely never walk or talk.

Ethan has adducted thumbs, low tone, feeding issues, gastro issues, etc. EI began when he was around 2 months old. Now he's up to 8 appts a week, 2 with each therapist (PT, OT, Sp.Ed & feeding/speech). We are so amazed at all the progress he's made. He can now roll over to his stomach, pushes to sit with a little help, sits & plays pretty solidly when placed, can now put weight on his legs to stand with help, hands are a lot looser, can understand simple things we never thought he would, can say Ma ma, Ba ba, Na na, and just started with dada sounds, etc.

There's so much more, but you get the idea. We are so proud of our little boy and so far, as you can see, doctors don't know everything. Yes, Ethan is delayed, but the point is that he's improving everyday and will be the best Ethan he can be . If you have any questions, feel free to ask. We love all his current doctors & therapists and we're so grateful for EI!!

I'm so happy this board is here and I would love to chat & GTG with you lovely ladies

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Welcome Denise!

Yeah Ethan..way to go!