Parents of special needs kids - how are you handling/did you handle child care?

cantdrv55 · 02-24-2010, 08:22 PM

My wife is probably heading back to work soon because my son with Down Syndrome is finally able to consume all his calories orally. It's been a long two-and-a-half years of tube feedings but we are starting to see the light at the end of the tunnel as far as feeding therapy is concerned. He has graduated from soy milk through a G-tube to smooth purees by spoon. Our hope is that he learn to chew in a few months so that he can finally go to day care. Finding a day care facility that's willing to spoon feed a three year old has been impossible.

Anyway, if your special needs kid eats like a typical child, what type of child care did you use - large facility, nanny, au pair or family day care? Or have you or your spouse decided not to go back to work?

Cdnone1 · 02-24-2010, 08:34 PM

cantdrv55
I have a special needs child. My son has CP, is quadriplegic and non verbal.
He is seventeen now and still has to be spoon fed.
My advise to you is figure out what type of child care you would like for you and your child and make that work for you. There are a lot of options available but it is going to take , like most things,and a substantial amount of work to get everything in place.
If you are interested I would be happy to talk to you as a Father that has gone through this for 17 years.
Steve

cantdrv55 · 02-24-2010, 08:43 PM

Thank you, Steve. I might take you up on the offer to talk. To me, having a special needs child means I'll never feel irrelevant.

Cdnone1 · 02-24-2010, 09:10 PM

But you will feel exhausted!
Steve

cantdrv55 · 02-24-2010, 09:24 PM

So true.

Paco Anton · Paco Anton's Garage

My 3 year old son does not speak (yet). At first we thought he might be autistic, but fortunately he interacts with other people. Now he is beginning to say a few words and comunicate using gestures.

He eats well, but we have a problem trying to educate him on how to properly do things like using forks and spoons instead of his hands. Now we are tring to teach him to pee. No luck on either yet . Also he is very stubborn, partly I'm sure due to the frustration of not being able to communicate.

He has been going to day care since he was 5 months old and her mother has kept working. First we took him to a private daycare with all the bells and whistles, includng a swimming pool. Now he is in a public daycare center. In both places the teachers/educators have been extremely helpful and have treated him "specially".

We also hace live-in help but the strain on her mother has been very high. Now we are seeing the light at the end of the tunnel (or is it a train coming this way?)

Next year he goes to school and will have support in language and education. Our city has a program where one school worker is on call to change diapers to 3 year olds, so we are also lucky.

cantdrv55 · 02-25-2010, 08:54 AM

A live-in is probably the set up that will work for us but au pairs are very expensive but I guess they should be. If my parents were just 10 years younger.

Cdnone1 · 02-25-2010, 10:17 AM

Where do you live?
Some states provide excellent programs for getting you some of the help you will need. They just wont offer it, you have to go out and find out thru other parents and support groups what is available.
Your going to go thru years of fighting the system , but, if you can start to develop relationships with other parents who have a child older than your they can help guide you along the way.
Arm yourself with as much knowledge or your and your child's rights and be prepared to fight for them. The first couple of battles will be hard but once you are in the system and they start to realize you know that you will fight them and not roll over and say OK things will get easier.
It seems our government will piss money down ever rat hole/ pork project they can find but will try and balance the national budget by denying services to your kid (rant off)
There are lots of fabulous, loving people out there willing and wanting to help you and your family, it will take some doing but you will find them.
Steve

peppy · 02-26-2010, 07:45 AM

cantdrv55, my wife and I have a 17YO that comes to our home. She was looking for part time work while she decides about her future and it is a fit for us.

She does very well with our hearing impaired son, and tolerates my wife and I being a bit crazy with the loss of his twin.

I know that there is a difference in the care that these children need, but we are still talking about children that can't communicate any of their needs and need someone that is attentive to them.