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Planning for Their Future, Not Just Hoping

Almost daily I speak to a parent about their child’s future. Like any parent, they want to know that their child will be taken care of and happy. Every child with autism is unique and so are their needs now and in the future. I wish I had the answers, but I have to ask myself this same question about my own son’s future. Even now that my son is an adult, there are still things I need to plan. But there was a starting point.

When he was born, I dreamed of his future and what it might be like, and I still do. The dream is simply different. Now I think about how long will he be able to live with us? What kind of living situation would suit him best and make him happy? Will he be able to live on his own? What kind of supports will he need?

I’m not writing this to discourage you, but to encourage you to start planning now. When my child was diagnosed at 5, I knew it was time to teach him as much as I could. I continue to teach him the skills he needs to be as independent as possible. This is something you can do daily. Those daily living skills will be needed no matter what living situation they are in as an adult.

Hoping for your child’s future is good, and planning is even better. I know that once my husband and I put some things in place for our son’s future, we started to feel less anxious about what the future held for him.

Here are a few tips to start planning.

 

Start the conversation

My mother would tell me, “He is going to be fine, give him time.” She may be right, but I would rather know that plans are in place even if he won’t need to use some of those plans. I would love to see my son live on his own like any adult, but the reality may be that he needs to be in a group home or another supported residential placement. Make sure to have open conversations with your spouse and family.

 

Research services and supports

I can tell you from experience that things constantly change with funding, special needs programs, disability waivers, Social Security, savings plans, laws, and support groups. There is so much more available now than there was when my son was diagnosed over 20 years ago. Again, everyone has a different situation and different needs, so start looking into it now.

We are here to help you start to search. We know that it can feel overwhelming when trying to find out what your child needs. Our website is a good place to start learning about services; we have a webpage on accessing services, and also a toolkit.

 

Explore residential options and prepare now

Living independently, living with family, group home living – there are many options. Discuss each one, and talk about your level of need and what it will entail. What will you need to do for your choice to be the best choice for your family? For example, if you decide that your child will live with family, decide what that will look like. Do they need a separate living space? Do they need safety measures put in place?

If you are looking at a group home setting, you need to do your homework. It is a lot to think about. There are several different types of group homes depending on what your child’s needs are. We offer a helpful Residential Options Toolkit to help you understand the differences and how to access them. ASNC’s website also has a webinar about residential options.

It is important to never stop teaching your child what they will need to be as independent as possible. On page 6 of the Residential Options Toolkit, we have a very specific list of independent living and advocacy skills you can work on with your child. Remember the best time to start is right now.

 

Consider guardianship

The final thought is a painful one, but a necessary one. We have to picture our child’s future without us. I know this sounds horrifying. But it is a reality. I have guardianship for my son, which may not be necessary for your child when they become an adult, but if it is, you may want to start thinking about another person who would be willing to take on this responsibility for your child when you no longer can. To understand more, watch our guardianship webinar.

Even if you do not have legal guardianship for your child, you may want to talk to friends and family about who would care for your child. There is so much to discuss, and I know it can be overwhelming. As a parent of a child with autism, I know how you’re feeling, and we are here to help you start the conversation.

Judy Clute, an ASNC Autism Resource Specialist in Raleigh and mom to a son with autism, can be reached at jclute@autismsociety-nc.org.

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