Special Needs Kid
If you have a child that was just diagnosed with an intellectual disability, I will share with you what I know. My bff Cindy and I decided the top 3 things we think parents with special needs kids should know.
Now we know it can be devastating and incredibly emotional. And there are times you will cry. Go ahead and cry, that's a good release. But know that at times you will need to find a way to turn the emotions off and focus, you have important decisions to make about your child's future and you'll want a clear head.
With that in mind here are the top 3 things we think parents with special needs kids should know.
#1 Take the diagnosis. I know parents who refuse to let a doctor put a diagnosis on paperwork. They argue that the diagnosis is wrong, my child isn't disabled, they're just quirky, and don't want their child to be labeled. I understand that but keep this in mind. Take the diagnosis! You don't know what the future is going to look like for your child. That diagnosis may very well be the golden ticket, the key to unlock programs, money, benefits that can take care of your child for the rest of their life. When my son was 3 his name was put on the HCS interest list. At the time I thought, we make good money and aren't using any of the benefits right now why not take his name off the list and give it to a family who might need it. SO glad we didn't do that. At the time I didn't know much but now that I know more I could slap myself for even thinking of refusing a diagnosis or not keeping my son's name on the HCS list. What was I thinking? My son is now 24 and will someday live in a group home. How do you get into group homes? HCS. How do you become eligible for programs like HCS, you have to have a diagnosis. When your child is diagnosed with a disability prior to the age of 22 they will, at the age of 18 (sometimes younger) qualify for SSI payments. Right now that's $783 a month. Take the diagnosis!
#2 Put your child's name on every list. Right now I know of MDCP, CLASS and HCS. I will share more details later but contact your local mental health agency, google your county health disability services resources, ask Dr office or local school should be able to tell you. "I would like to get my child evaluated for possible intellectual disability." And I need the contact info for the local Medicaid waiver programs for children with disabilities. #2 Put your child's name on every list!
#3 - Make friends. Join support groups, there are plenty of others out there who have kids just like yours. I can't tell you how fortunate I am to have Cindy in my life. She and I both have adult kids same age, same diagnosis, same behaviors, we babysit for each other and help each other so much.
So 1 Take the diagnosis , 2 Put your child's name on every waiting list for waiver programs, and make friends.
I'm going to go ahead and add a bonus note. Be careful. There are companies that prey on parents with special needs kids. Parents will sometimes be willing to pay anything to get help. Some companies are scams or don't deliver exactly what they promise. Some are great companies. They might charge too much but they are still good companies. Our attorney offered to file a guardianship report for us for $100. Being that it was our first one my ex-husband offered to pay her for that. I said, no I think I can do it. I've been doing it every year ever since. It's easy. That doesn't mean our attorney was bad, or trying to scam us, she was just going to charge to have an attorney provide a service so we didn't have to. There are some companies that charge more than I would to do things I know how to do and I guess at first I felt it was a little scammy but if they are providing quality services and doing things correctly then you're just paying a bit more for convenience, so you don't have to. I did have one company was going to charge me 2-300 bucks or something like that to help us apply for SSI. We were thinking of doing it but a rep from lifepath called and said she would help us and so we got help with no charge. Just thought I'd share that.
Since I live in DFW area I'll share resources for that area. The main one I know of is Lifepath https://www.lifepathsystems.org/
We have been working with them since our son was 2, I believe. Very thankful for this wonderful organization.
This is what I have now. I will add more and share more later. If you have any questions feel free to send them to me at winnchimes@yahoo.com and I'll try to answer them.