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I am a full time working mom of a 13 year old boy with special needs, specifically Autism. I also have 2 other boys under 5(not special needs). He is considered mod/severe, Diaper dependent, non verbal(only has a handful of words), but he sure knows what he wants and can tell or show you. With that being said, I am wanting to find out what is the biggest struggle you find having a child with special needs? is it respite/finding someone you can trust to care for him/her when you have an appointment or just need some time to yourself, the days/hours a day program is available? what the program provides?
I personally have found the most difficult is support. Even just wanting to go to the gym for an hour, I have no support with my special needs son. We are allotted 25hrs a month for respite but I have to use that every morning to help me with his morning routine so I can get my toddlers ready and get to work myself. The before and after school programs are very basic and I would really like an aid or caregiver to provide more interaction with my son, more activities that will assist him in being healthy, yet having fun at the same time.
Where do my other Mamas/Dads stand? Do you find a lack of support as well? weekends are especially hard. My son attends a program outside of school in mission valley that is outside his normal school days (school holidays etc.), like today is veteran's is a school holiday and the program is closed as well, and I had no place for my son. I am wanting to start my own Special needs program that is everything I've wanted for my son, eliminate all the fears and troubles we as parents have when leaving our children(young or old) in someone else's care and what I've needed myself as a mom for support when I have no other options, because I know the struggle as a mom and our kiddos Deserve the best. Would love any feedback.
As the mother of a 35 year old son with Down syndrome, the most difficult issue is dealing with the people you have to deal with because you are the parent of a child with a disability. Money is tight in most states with LONG waiting lists for services. In TX and NM, the waiting list for adult services is more than 10 years long, with Florida, the last time I checked, being even longer. We had a terrible time finding daycare when our son was young as by the time he was two years old, children not toilet trained were blocked from most day care centers, and some were just too leery of someone with a disability to consider him.
At the present moment, our son has moved to residential, but the closest opening was more than a 3 hours trip away. Now there are serious problems, and we are looking at what we can do, and knowing how limited our choices are.
Complain to anyone that will listen. Find a parent group, try to find a good one which is another challenge.
Parenting our son was the easy part, and dealing with the "professionals" and other providers has been just the worst.
Plenty of money for programs for illegal aliens and refugees, but not much for our citizens with disabilities.
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