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Parents of Special Needs kids

I was just curious how you plan for your child's future. Do you have a plan for if something happens to you when your child is grown? Is your child ever going to be able to live on their own. Now obviously I am not talking about all special needs children. But some people are just never able to live on their own. I was just curious as to how you cope and plan. Also if you have a special needs child does one parent stay home with that child? How hard is it to find daycare solutions? babysitters? Is it harder to trust someone with your special needs child?

Again...I am just curious. I don't have a special needs child but I do have friends that have them. Most of them have a parent who stays home. One couple I know has a boy who is 10 and Autistic. They have not been out on a date alone since he was diagnosed.

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Shaken1976

Asked by Shaken1976 at 10:40 AM on Jun. 15, 2011 in General Parenting

Level 20 (9,288 Credits)
Answers (8)
  • I have a child with PDD-NOS..his initial diagnosis at age 3.5 was grim..special schools and probably a residential program later in life. He is now 10 and is on the cusp of being considered Recovered. I will tell you what we planned.

    1. Changed our wills to reflect the plans we were making.
    2. Set up a revocable trust for his adult care..we started with a small amount of money and some bonds. We have added money, stocks and bonds to it a little at a time.

    I sold a successful business in order to stay home with him. He was getting OT & Speech T 3x week for an hour each. I gave him 1/2 hour of OT each day with an additional hour 2 x week.

    Daycare can be tricky. A lot of it depends on the child. There was a special needs provider in town..it was $20 hr with a 2 hr minimum. I never used her. We were fortunate because he didn't require a lot of additional care. cont.
    yourspecialkid

    Answer by yourspecialkid at 10:51 AM on Jun. 15, 2011

  • My son is considered special needs but  is not as affected as other special needs children. He is 6 and I tried to workbut after getting kicked out of daycare after daycare, because people don't understand his uniqueness", I have just about given up. I did finally find a job that allows me to work around my son's school schedule and let's me go to his school when needed, but I make very little. Honestly, it's a catch 22. If I work, then I could afford to pay for some of his therapy and for tutoring. But since I have a hard time finding a decent paying job that would allow me to take him to this appointments or to work around his schedule, we can't afford it. Our old insurance did cover these things, but my husband's company changed insurance providers and the new providers are refusing to cover these services. He was making great progress and now I feel like we are back were we started.

    Anonymous

    Answer by Anonymous at 10:52 AM on Jun. 15, 2011

  • i have a young child (almost four) with autism
    daycare- lol, they want me to hire an aide to be with her and pay for daycare
    so i am at home with her
    babysitter? no high school kid would be able to handle autism meltdowns, so no sitter with night out
    and her father and i split last fall, he is not in picture but for every other month for a couple of hours, does not pay a cent, has had lawyer post pone court date for support
    i live off with my mother - free rent (thanks mom!)
    night out-LOL, only time i get to myself is a quick run to library to exchange books, movies, zero dating- who would want to date with situation anyway
    as for her adult care..she is not severe autism, so hoping that future is bright for her, but still too early to know
    too difficult at this time to think that far in advance

    wow, what i wrote is pretty depressing -lol, might need to read and answer some Just for Fun questions now
    :)
    fiatpax

    Answer by fiatpax at 10:54 AM on Jun. 15, 2011

  • cont.

    He needed to be supervised closely or put in the "safe" room. We turned our guest room into a child safe playroom...kind of a giant play yard/pen. I could put him in there while showering/cooking meals and such.

    My husband and I rarely went out. Honestly, we don't go out much now either! Our kids and our home are our life..we enjoy being with the kids more than we enjoy a "date." That is just us though! When we did have a need to go out I had some good friends in my military spouses group that I could turn to or a couple of ladies from our church.

    I hope this answers some of the questions!
    yourspecialkid

    Answer by yourspecialkid at 10:56 AM on Jun. 15, 2011

  • I have a 13 yo with autism. I have always taken him everywhere, and it was HARD when he was younger (I can't tell you the number of times I took him out of somewhere kicking and screaming - yes it's embarrassing) but it has definitely paid off. He knows how to act in a mall, a restaurant, a library, etc.
    I stay home with him - afterschool care is hard to find, but I was a single mom from when he was 7-10 and it is tricky but possible.
    He won't ever be able to live on his own. We are currently looking into group homes where he will have some level of independence, but it needs to be close to home so we can keep an eye on things! I am hoping he can have a part time job somewhere, in a repetitive consistent expectation, but he can't earn too much to affect his disability payments.
    We have a special needs trust set up for him to cover extra expenses, instead of a college education like his siblings.
    missanc

    Answer by missanc at 11:50 AM on Jun. 15, 2011

  • My son is 4-1/2 and is autistic. I am hoping that he is high functioning enough to live on his own when he gets older. He had made HUGE strides in the last year. I try and be open to the possibility that he might need to go to a group home, but I'll cross that bridge when he's older.
    Telephus44

    Answer by Telephus44 at 12:43 PM on Jun. 15, 2011

  • Thanks for all the open and honest feedback. I thank God everyday that my dd was born healthy with no long lasting problems. It just makes me wonder how families with special needs kids deal. I forgot about another question... If you are out in public and someone asks you a question about your child does it offend you? or do you look at is as an oppurtunity to educate?
    Shaken1976

    Comment by Shaken1976 (original poster) at 2:04 PM on Jun. 15, 2011

  • Educate educate educate. people are dumb to the fact that not everyone in this world is perfect, but every child is perfect in God's eyes. we were all made in His image
    Wanabmommy

    Answer by Wanabmommy at 12:33 PM on Jun. 20, 2011

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