Be Proactive in Planning the Future of Your Child with Special Needs

Be Proactive in Planning the Future of Your Child with Special Needs - - -
2 min read

A few years ago, I met a woman with a son with Autism. She shared that her son was 26 years old and he was not involved in any kind of program and he did not received services. He was home during the day and she and her husband alternated his care. Both parents could only work when one of them was caring for their son. As we continued the conversation, she expressed her desire to have him in a program for adults with special needs.

After a little research, I referred her to a few places for funding, also programs her son could attend. I’m not sure if the woman ever received the help that she needed, as we lost contact.

I think of that woman a lot.  Our brief conversations grieved me as I heard her  regret of not doing more for her child. She didn’t like that he was home with no educational activities that interested him. She wished that she had done more.

Listening to her regrets, affected me.  I didn’t want to have that same experience with Nate not having anywhere to go and having to stay home.  Talking to her made me more diligent, in my son’s transition planning. So, I researched both day and residential programs.  I contacted those programs and set up appointments to visit.  In addition, I looked into supports for Nate to stay home, if possible. I inquired into the financial cost of quitting my job and staying home with Nate. (I wanted to write full-time.) Yet, most importantly, I prayed.

I understand that everyone’s life, road, and path is different. Of course children with special needs, come in all different abilities and complexities, so there is not a one-size fit all plan.  However, we must do what is needed and be proactive in planning our child’s future, so that they can live their life to the fullest. - -

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  1. 1

    Back in the 1980s when I was searching for a Group Home for Stephen it was quite an adventure applying for government assistance and navigating the system but I kept at it. I had the support of my then Pastor Rev. A.R. Bernard and plus I was a little bull dog in dealing with bureaucrats.
    Stephen was placed in his Group Home in 1989.

    Though I missed having Stephen at home with all of us it was the best decision I made because little did I know our parents were getting sicker and before the 1990s ended both had passed away. You do not want your children to be at the mercy of family members, relatives or your state government if something should happen to you and your child/sibling has no where to live.

    We must be practical and realistic. None of us are going to live forever nor do we have the physical capacity or energy to care for an adult child siblings with developmental disabilities. I’m glad because I’m dealing with my own health issues and at least Stephen will be taken care of in case something happens to me. As much as I Love my brother I do not have the time, energy or resources to care for him 24/7/365 nor do I have the option of quitting my job. I need that Retirement Pension and Benefits.

    Having Stephen in a Group Home was also the best choice because between the Group Home and his Day Treatment Center he received Daily Life Skills and work training. Stephen has been doing custodial and other types of work for several years. Albeit they transport him to and from the work sites plus giving him instruction on his tasks but it gives Stephen a sense of purpose.

    I can remember one time when I was visiting his group home the residents had just finished dinner and Stephen cleared the table and swept the floor. He was so proud of himself he motioned for me to come over and he was beaming with pride, joy and a sense of accomplishment. I was happy and he was happy. Everyone wants to feel useful.

    • 2

      I read your comment and I really feel as if we have the same feelings about our loved ones. Having Nate in the residential facilities is such a help for me. I wish that I could care for him, but I realized that I am getting older and so is his father. Family support is not there as it was when he was younger. I have to think of the future and just as you did, making sure that he is in a place that can care for him is what is best for him. I am happy Nate is able to go to his workshop, and I am able to see him whenever I want. Also that he can come home on the weekend.

      Thank God we have planned for their future in case something happens to us.

  2. 3

    One more thing that we might find sad or depressing but is necessary years ago our Dad took out life insurance on Stephen. So if God should call him home the funeral expenses will be paid for. Our Dad was a practical man. Hopefully both Stephen and I will live a healthy long life.

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