Anyone else have special needs kids?

[marissa]

One of my 6 year old twins has autism, learning disabilities, and a communication disorder. His twin brother has autism, anxiety, and learning disabilities. My 4 year old has a genetic syndrome called 16p11.2 duplication, autism, and a communication disorder.

[Llama in Mules]

I don't, but one of my closest friend's 3 year old has communication and emotional problems. She has had great success with equine and music therapies.

[EloiseWeenie]

As far as I know, my kids aren't special needs (but they're 3 and 7 months). Are you a SAHM or do you work outside your home? Do you have a good support system?

[Glitter Tits]

I can't imagine having 4 boys! How did you handle having a 5 yr old when your twin boys were born? The only logical answer is alcohol.

[Deleted]

May 17, 2012 19:35:17 GMT -5 Glitter Tits said:

I can't imagine having 4 boys! How did you handle having a 5 yr old when your twin boys were born? The only logical answer is alcohol.

That's probably how she wound up here!

So far neither of my kids do, but I struggled with a learning disability growing up.

[marissa]

I am a SAHM but was a special education teacher and got a degree in reading a few years ago as well. I tutor special needs kids in reading and math just to get out of the house. I also volunteer as a book review writer for a magazine. I am co-president of our Special Needs PTO for our school district, am co-founder of a special needs support group in our area, and am on the board of directors for NJ Parent Advocates.

Honestly, my support system lately has been my co-president and co-founder of our PTO and advocacy group. She also has 4 kids including a set of twins. I started as her daughter's tutor and now tutor her and am starting to help attend meetings for her daughter. My parents live 5 hours away and don't see my kids enough to understand what is going on. My husband's parents give us a break every once in a while but my MIL has been rather nasty to me about things so I tend to stay away from her.

My 4 year old had aquatherapy until our insurance cut us off. He was the 1st to be diagnosed. One of our twins was diagnosed this past summer and my other guy was diagnosed last week.

[Llama in Mules]

Have you heard of The Friendship Circle? It has been really great for my friend's son. (we are in NJ too)

[marissa]

May 17, 2012 19:35:17 GMT -5 Glitter Tits said:

I can't imagine having 4 boys! How did you handle having a 5 yr old when your twin boys were born? The only logical answer is alcohol.

My oldest was a month shy of 8 when the twins were born. He was easy. The hard part was having my three younger ones. The twins were 4 days shy of their 2nd birthday when the baby was born. Right now I need to own stock in Pepsi. I do like me some cheep wine though.

[marissa]

May 17, 2012 19:54:58 GMT -5 Llama in Mules said:

Have you heard of The Friendship Circle? It has been really great for my friend's son. (we are in NJ too)

I've never heard of it. I'm involved with our local ARC as well.

[EloiseWeenie]

Thanks for sharing. I'm sorry your family isn't more helpful and understanding. That's great that you are so involved and are getting support from friends. One of my college girlfriends has a son with TS (tuberous sclerosis) and I know that she can never have too much help.

[Glitter Tits]

May 17, 2012 19:55:17 GMT -5 marissa said:

May 17, 2012 19:35:17 GMT -5 Glitter Tits said:

I can't imagine having 4 boys! How did you handle having a 5 yr old when your twin boys were born? The only logical answer is alcohol.

My oldest was a month shy of 8 when the twins were born. He was easy. The hard part was having my three younger ones. The twins were 4 days shy of their 2nd birthday when the baby was born. Right now I need to own stock in Pepsi. I do like me some cheep wine though.

Well, that was an embarrassing math fail.

[marissa]

May 17, 2012 20:06:29 GMT -5 Glitter Tits said:

May 17, 2012 19:55:17 GMT -5 marissa said:

My oldest was a month shy of 8 when the twins were born. He was easy. The hard part was having my three younger ones. The twins were 4 days shy of their 2nd birthday when the baby was born. Right now I need to own stock in Pepsi. I do like me some cheep wine though.

Well, that was an embarrassing math fail.

He's a shit now. He's 14 and a real pain sometimes. He is all about "It was only me for 8 years and I miss my privacy"

[Deleted]

My 4 year old has autism (with some other fun stuff thrown in, anxiety, etc). DS2 is 22 months and seems fairly ok so far. DH wants a 3rd kid but looking forward to a drink each night is non-negotiable at the moment.

[marissa]

Vanessa, I saw you on the nest. I've been on the SN board for around 3 years.

[statlerwaldorf]

DD has mild hearing loss. She is also on a wait list to see a specialist for a language delay.

[Deleted]

My son was born with a cleft lip and palate and because of that has hearing issues. We meet with a speech pathologist in 6 months. He had tubes put in on April 26th when his palate was repaired and I can already tell a slight difference but we will see.

[fluff]

My 8 year old DS has ADHD. I'm not sure if that counts as a special need, but it is definitely a challenge.

[cantalopes]

My daughter is FTT and we are seeing a geneticist but we don't have a diagnosis yet. They are doing blood work to look at chromosomal defects.

[marissa]

We've seen a geneticist for 2 years. Once we learned about my son's 16p diagnosis we went to the head of genetics from the college of medicine and dentistry in NJ. When we saw him, he knew how genetics work but now how the 16p affects my son. We drove to Boston to the Children's Hospital and for his care since they had a team that knew what the 16p syndrome is and what it means for Chris.

We are now in a study for him but it will end this September around his 5th birthday for Chris. We learned the head of the study is from Columbia Medical Center so that's where we are going now. It was easier to make a 45 minute drive than a 6 hour drive.

She thinks that Matthew and Jonathan both have the same genetic change but the FISH and micro array aren't picking it up. The micro array looks at each chromosome to see if there are changes and the FISH looks at a specific chromosome to see if there are changes. It is used more if you know what you are looking for. The technology is still new and it is not very reliable.

[invinoveritas]

I have a 16 m-old with cp, his twin is nt (as far as we know, he had a grade 3 IVH at birth, 27 weekers)