Any Special Needs Moms?

I'm a newbie, so forgive me if there is a forum for this and I missed it. Any one going through all this with a special needs child or children?

[DCJenn]

We do have some kiddos here with special needs- physical, hearing, neurological just to name a few.

I spent 20 years working w/ people with intellectual disabilites as well.

Jenn

[kaseymarie]

I don't but my nephew has cerebral palsy and i am a special education teacher.....so it is a very big part of my life.

[PrincessFiona]

What kinds of special needs?

Our oldest may be.... on the Asperger spectrum...though we've chosen not to have a formal diagnosis....and we are dealing with some mild neurological issues with the baby of our bunch.....

I don't really consider any of it special needs..I think all kids are special needs one way or the other

Kris

[Momo]

I think all kids are special needs one way or the other

Yes, all kids have special needs. Some just have special-er needs!

I have almost completed my Masters in Special Education that I started when we knew there were developmental issues with our son. We had an appointment with a wonderful Dr this week, and we are very close to a dx of autism. He also has ADHD, just started Adderall. The girls are speech and language impaired, but hopefully growing out of that.

I would love to chat with some other medical moms about this kind of thing because my DH refuses to network for our children's sake, so I am left to find specialists on my own in a state that is new to me.

[samssugarmomma]

I guess it depends on what you mean by "special needs". In about 9 weeks we're going to have a daughter that might - she has some kidney and potentially lung issues but we don't know the extent of them yet.

My DH is in peds but even if he wasn't he'd do everything he could to network to find out which doctors specialize in what. We're going to have a team of specialists that help with her and he's already talked to a few of the neonatologists that he works with about options and prognosis and whatnot. Perhaps your DH isn't sure where to start?

Have you tried joining online support networks in your area and seeing which docs are popular among them? That's where I would start.

[madeintaiwan]

The MIND Institute at UC Davis is constantly doing research and has some great resources.
http://www.ucdmc.ucdavis.edu/mindinstit ... links.html

Not too long ago they launched the Autism Phenome project.
http://www.ucdmc.ucdavis.edu/mindinstit ... roject.pdf

My cousin has Aspergers and with "work" he continues to show improvement.

I think DH's program head frowns on families. In fact, in DH's interview, he asked him how he was going to handle all this with a family! (Isn't that illegal?) Anyhoo, DH is very hesitant to even talk about us, and I think he is really afraid to mention that our son has developmental issues. This is a huge source of contention between us, probably needless to say.


Thanks for the links! All I have had to go on is website reviews. I would really like the input from other medical families going through this stuff.

[Gwendolyn]

I can only offer commiseration and support. My son is hard of hearing and has a speech delay as a result. DH has been in and out of the picture on this one. I know he doesn’t want to look like his family might trump his work...even when it does...also I think there has been a bias on his part about the therapy areas that are not "hard" medicine. When it comes to the ENT and the like he is all about it, but there have been more than one knock-down drag-outs about speech therapy, audiology, sign language (he still doesn't participate in our weekly sign language sessions). I know that is going to make him sound like an asshat and he has been told. I have just decided to utilize him where he is willing and passive aggressively nag him where he is lacking I have also, like so many things in our life, learned to not defer to him in this situation because he has a medical degree. I have learned to trust that the fact that I am the mom trumps his degree in this situation. I don’t know if this reflects your situation at all, but hang in there. I have found that there are so many situations where I have had to fight for my son that I needed to be the one advocating anyway, regardless of what my husband did.

[peggyfromwastate]

My nephew has autism. My sis has found a lot of neat programs around her area for him. There are lots of special programs out here where I live, too. So, look around your area and hopefully there will be something there?

My DH is an ENT resident (intern) too. I thought it was supposedly a more "family friendly" surgery specialty? Maybe it's just a difficult dept head...

Anyway, best of luck!!!

Peggy, I thought it was supposed to be more family friendly too. Of course, they probably just meant that they were friendly to the patients' families...

[Meenah]

I have learned to trust that the fact that I am the mom trumps his degree in this situation.

Don't ever forget this.

[DCJenn]

Project Mom-

Let me know where you are located and I'll get some resources together for you.

Jenn