Let's introduce ourselves.....

.....add any information that you feel comfortable with...

Age of Child

Special Needs

Diagnosis

ETC

I'll start.....

I have 3 children...two girls 8 and 5 and a son 3.

My son is 3years old. He has a severe expressive delay.

Going to a specialized preschool and is just starting to say words like blueberry, uh oh and finished....

He can sign words like me, give me, eat, more.

We are working on potty training and it has let's say been interesting so far....

looking forward to chatting with all of you....

Edited to add I'm in Levittown

Message edited 11/7/2008 1:11:28 PM.

Hi all,

My name is Heather and my eldest daughter, Ariel, has Mosaic Down Syndrome and is considered High Functioning Autistic.

She will be 15 in January. She attends the Life Skills Program at Smithtown High School West and Wilson Tech.

When she was born her pediatrician, who was in the delivery room, noticed that she had low muscle tone. B/C of this and some other findings he ordered a karyotype. 6 weeks later we found out that she had Mosaic Down Syndrome. Mosaic Down Syndrome differs from typical Down Syndrome in that she is essentially half "normal" and half Down Syndrome. She has a normal female cell line of 46XX as well as an abnormal cell line of 47XX+21.

She started Early intervention when she was 2 1/2 months old and received her services through The Childrens Center through UCP. She stayed there through preschool.

When she became school aged she was in an inclusion class in the South Huntington School District through 3rd at which point we place her in self contained for 4th & 5th grade. She attended Middle School in the Smithtown School District in a self contained 15:1:1 class with a general, though modified, curriculam.

Im sure Im leaving some stuff out....

Please feel free to ask me anything...Im open to answering questions regarding Down Syndrome, services, medical etc...



ETA: We live in Nesconset.

Message edited 11/7/2008 7:59:53 AM.

i'm so happy they added this board! my name is michele and we live in queens.

i'm a special ed. teacher that now has a son with special needs.

josh is 18 months old.

he has sensory processing disorder (sensory seeker).

his main "issues" are:

he has short attention span, very active, low muscle tone, and low oral muscle tone which causes him to have poor articulation and he can't chew his food. he vomits A LOT and hates eating. it's a battle every day and most of his food is very mushed. he'll only eat if he is being distracted by books, toys, etc. and he eats super slowly. he also has proprioseptive issues and bumps/falls a lot (even though he walked at 10 1/2 months). he's cognitively age appropriate.

i paid privately for speech/feeding for a few months when he was about 11 months old and now he receives EI: OT x3 and speech/feeding x3 a week. i'm NOT happy with his OT (he barely does anything and does not deal with the sensory issues ds has) and will hopefully be getting a new one soon. his speech therapist is better but not fabulous. being in the field i find it hard to not want more out of his therapists when i know they should be doing more.

i really look forward to talking with you all!

Message edited 11/6/2008 10:49:58 PM.

Message edited 7/18/2009 7:38:28 PM.

Hi, I'm Lea.

Mom to Cole (3.7) PDD-NOS, Sensory Processing Disorder (Sensory Seeker) and Brady (14 mos.) who is typically developing but attends a mommy and me speech class so we can be proactive.

We have very much customized Cole's education from EI at 17 months through now. He currently attends Briarwood Montessori 3 half days with a SEIT, gets speech 3 times a week, OT twice at Alternatives for Children, and Social Skill mommy and me class once a week at Sensory Street Kids. He's doing great!

I'd love to meet as many other moms as possible ... becoing my son's advocate and networking with other parents and professionals is what has kept my sanity!

im a social worker who works for IGHL (independent group home living) i work with 21+ who are DD, but they have many services for children.

my best friend is the music therapist at ACDS so i know a lot about children with special needs & services for them

Hi, I'm Michelle!

I don't have any children yet, but my brother Steven has autism. He is 18 years old. He was diagnosed at age 2. Because of EI services, he was labeled high functioning. At age 13 he developed Tourette's Syndrome. He would shake his head uncontrollably, but he is on medication and it has helped.

He is doing amazingly well. His pre-school teachers and therapists told my mother he would never make it past a 2nd grade class in a regular ed classroom. With the help of a 1 on 1 aide, he graduated high school and is in college majoring in Graphic Design. He has been doing ninjitsu for the past two years.

My brother is 7 years younger than me, so I remember vividly what it was like living with a toddler with special needs and what my mother has gone through. You ladies are stronger than you will ever know. If you need anything from someone who has BTDT, feel free to ask. I can always ask my mother too!

We live in Western Suffolk.

Message edited 11/11/2008 7:27:27 PM.

Hi everyone,

My name is Kerri. My son Lance is 23 months old. He has been receiving services through EI since April.

Lance's initial evaluation from EI showed that he had cognitive, receptive, and expressive language delays. However, with much hard work, and AMAZING therapists, his scores fell within normal range for cognitive, and receptive language at his 6 month review. His expressive language is still far behind.

Lance receives special education and speech therapy through EI. He is also getting OT from Island Therapy privately. He attends Mommy & me at Kidnastics. Lance also attends the "La La La Language" class at Sensory Street Kids.

I am looking foward to speaking with, and sharing ideas, with all of you.

I am also really looking foward to speaking with my son!

ETA: We are in Western Suffolk.

Message edited 11/7/2008 10:52:08 PM.

Hi Everyone,

I am Dawn and my son is Bryan. He is 21 months old and had been receiving PT, Special Ed, and Speech through EI.
This program is AMAZING.
He started services in June. Went from hardly doing anything to walking and now is almost running. He's climbing stairs and at the advice of the PT we are working on getting down the stairs.

He just started speech on Columbus Day and I already LOVE his therapist and he took right to her.
Special Ed is also going well.

The area that he still is delayed in, is gross motor. He also is not a fan of being told what to do, but, will follow directions and do his "Work". He just needs to communicate back, which, I have hope that Speech will definitley help.

He is measuring at the age of a 16-18 month old. We saw him "Catch up" with PT and hope he does the same with speech and special ed.

This is a GREAT board. TY LIF!!

I'm Joanna and Hannah is 29 mos. I havent posted much about her issues, but she is classified as a preschooler with a developmental delay.

i am a special ed teacher and so is my dh, who is also a BCBA. we had her evaluated at 7 mos for motor delays but she did not qualify. at 1 year she started biting the kids in her daycare and it got so bad that we had to take her out b/c she was getting suspended.

she continued to bite and have extreme tantrums. she also continues to mouth everything and put dangerous things in her mouth. she also still exhibited motor delays. she could not manipulate peg puzzles or use utensils and was very clumsy. we also noticed extreme hyperactivity to the point of literally b ouncing off the walls. she can make herself vomit if she has a severe tantrum, which last for hours. she is inconsolable. its more than just terrrible 2s. she is also extremely ritualistic.

fastfoward to this august for another eval where it was determined that she has a 33% delay in social/emotial, and delays with fine motor. she qualified for OT and we get family training in home and at her nursery school. She really needs special instruction, but b/c she does not have cognitive or speech delays, they would not give it to us. but we were able to work the system by getting FT in the school. hannah is also tactile defensive.

our first family trainer felt she was more delayed in school and that if she was delayed with speech and cognition, she would have thought hannah was on the spectrum. at first i agreed with her, but then i realized that this person should have never given her opinion as she was not qualified to do so. we now have a new trainer that i love and agree with!

we have a good team in place now and we are working together to get hannah through her tantrums and sensory issues. we suspect a sensory processing disorder as a diagnosis. we just need to work on her current classroom as there are some issues with the way the teachers deal with her behaviors.

its so true that when its your own child, everything goes out the window. my dh and i did EI for a living. you would think we would know what to do, but when you are so emotionally involved it is hard to get past it.





etd to add that i am in western suffolk.

Message edited 11/7/2008 12:28:00 PM.

i was wondering if you guys didn't mind, we could also add where we are from. maybe we could have mom support gtg's or playdates in the future.

i'm in forest hills (queens).

I am Maureen and my son is Johnny, he turned 2 in September. I live in VA so I can't make any get togethers but love that this board was created. There are a lot more parents going through this than you realize!

My son Johnny was given a diagnosis of sensory processing disorder at 15 months of age (sensory seeking..). He had cognitive/social/expressive delays as well and while expressive is still delayed, he has been doing great across the board since EI. He goes to school 5 days/week and receives speech therapy and OT. Per his last EI evaluation at 23 months he was considered at an age appropriate range for everything except expressive speech. But that is slowly catching up as well

I am so proud of my little guy. He has had to work VERY hard in the last year but he is so happy, affectionate and has a great time in life. I could not ask for more!!!

Can I say again how happy I am to have this resource??? I think its wonderful...it helps you to not feel alone on this journey which can sometimes feel very overwhelming.

My name is Diane. I have 2 year old twin boys Matthew and Christopher. Matthew is developing typically.

Christopher was diagnosed with PDD-NOS at 18 months and has been receing EI since. In Septemeber he started to attned Building Blocks, where he receives OT twice a week, and speech 3 times a week. He is in an EI class in the morning and gets ABA after. He also gets ABA at home as well. It is NOT strict discrete trials. He is making GREAT progress, and uses a PECS as well as some babbling. I am so proud of my little man, and he has a GREAT brother that helps him out and encourages him in so many ways.


I am in Coram

Message edited 11/10/2008 8:01:29 AM.

Hi my name is Debbie and my daughter Emily is 4 years old. She has a lot of sensory and fine motor issues. She goes to a sensory gym for OT three times a week and attends a typical preschool with a SEIT teacher. She has been receiving services since last April. She is doing very well. We live in Medford

Message edited 11/10/2008 9:59:33 PM.

Hello Ladies, Im Fran my son is Jack, he is 5 and is in a integrated K class. Jack does not have diagnosis but has some sensory and fine motor skill issues, he is delayed socially and we are looking at speech. He is currently receiving OT through school 2x week in a group setting. We will know next week about speech. In preschool he had a SEIT 1 hour a day 5x week and OT 1 hr per week. His SEIT was wonderful she really helped with his behavior issues. He has really come along way in the past year some of his improvement is just maturity much of it form the extra help he has received.

Im glad this board is here it helps to tolk to others in similar situations. Nice to meet you all. We are in Wantagh.

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!

So glad this board is here!!!

My name is Alicia and I am mommy to Ryan, who is 2.5, and Erin, who is 14 months.

Erin is developing typically, and Ryan has a speech delay.

Ryan was first evaluated by EI at 21 months, and did not qualify, but at 2 years old, he did. He received speech and special instruction at home 2x per week for 6 months, and recently switched over to a EI class at DDI in Ronkonkoma. He goes three days a week for 2.5 hours, and has speech 30 minutes each day. He also has some social/emotional issues happening, and we are in the middle of his evaluations for the school district as he is turning 3 in January. He says some words (more like approximations) and has definitely made improvement since switching into this school.

I am in Patchogue and would love to GTG with other moms!

Hello, my name is Karen and my DD is Sophia. She turned 2 a few weeks ago. She has just recently been diagonsed with PDD-NOS and has been recieving EI for about a year now. She began with just OT services and we just ended those services last week. She was still well below average on the OT testing but we all concur that it is not her skill level but a behavioral issues that is causing her not to test well. She also began with a special ed teacher 6 months ago. We have just increased that to 9 sessions a week. She'll be doing a modified ABA session with them.

I do alot of brainstorming with my team on Sophia as she is all over the map as far as development. She knows her numbers and letters and will point them out on command but still says not a word. We think she may have an attachement disorder which is causing some of her behaviors and I start going to private therapist who specializes in that next week. Sophia was adopted about 15 months ago.

I'm so glad they started this forum, I already learned so much just reading the few messages already on here!

Oh and I'm in Coram : ).

My name is Laura and I have No children but am a special education teacher for an autism program in Queens. Please feel free to FM me if any of you have questions. I love to see what needs and concerns parents have as it helps me understand and help my students in the best manner possible. I hope that you all don't mind if I post here from time to time. I'm so glad that they have developed this board!!