9 Ways to Prepare Now for Your Autistic Child’s Future

A few months ago my autistic, but otherwise extremely healthy child was denied life insurance. I was shocked and confused. When Cooper was born, in preparation for college, Jamie and I started a savings plan for the him that could be converted into dollars for college tuition. Smart right?! Recently, I received a letter in the mail that notified us that Cooper was denied coverage. I was irate. Autism is not a death sentence. My son is healthy. He has no medical conditions.

An At-Risk Life

After following up I was informed that Autism is considered a vulnerable and at-risk life. He is more susceptible than most to dangers.

Well, I couldn’t deny that. I even had the anxiety to prove it.

I was crushed though. I felt like my baby had been given a death sentence. Never in all my Autism processing did I ever picture my son not living a long, healthy life. This was the prompt that forced Cooper’s dad and I to talk about the future.

Our son was autistic and would be for the rest of his life. It took six long years for that to sink in and reach my brain AND my heart.

And, at the same time we admitted his future was still very unclear. There is no crystal ball that tells us what the future will hold for my little fighter. Will he live with us? Will he want to live in a group home with peers? Will he work?

Every single day I do every single thing possible to help Cooper to improve. That’s my job. But I also realize it’s time to start planning. Yes, I pray that he starts talking.  Yes, I pray that he improves socially, cognitively, behaviorally and emotionally. Yes, I pray that he grows up and attends dances, birthday parties and makes friends. Yes, I pray that he graduates and attends college. Yes, I pray that he gets a job and gets married and gives me a dozen beautiful grand babies.

This is most likely not reality though. And saying that out loud doesn’t make me a negative person. It makes me a realist. It’s time to take a good long look at the future and what may happen. And start planning.

Time To Plan For Our Son’s Future

The reality of the situation is that Cooper will live with us for the rest of his life.

I avoided these conversations for years because I felt that if we talked about long-term care then we were giving up.

And whenever I did bring it up someone would always say….’don’t give up hope‘. ‘You don’t know what the future holds.’ And then I’d feel guilty. I’d feel like a bad mom. But here is the deal. I know my son. I love him more than I can put into words. But it’s time. It’s time to talk about caring for this little boy for the rest of my life.

It’s time our family switched from ‘hoping for the future’ mode to ‘planning for the future’ mode.

The start of these conversations were brutal. It appeared that like many other special needs families, Cooper’s dad and I weren’t always on the same rate of acceptance. From what I’ve learned so far rarely are both parents to a disabled child on the same page when it comes to a disability. It takes time. We all adjust at our own pace. But I felt like I was carrying the weight of his future on my shoulders. It was crushing me.

After the life insurance debacle I broke through to son’s dad. Our son had a life long disability. To us he is Super Cooper. A cute, funny, silly, train loving little boy. We try not to think of him as being any different than his brother. But that is not the reality.

It took us longer as a family to accept that our son might live with us forever or go into a residential facility than to actually plan for it.

I personally feel the key is to start talking. Just start the conversation. Look at your spouse and say…’are we prepared for our daughter/son to live with us for the rest of their life.’ It’s a conversation starter my friends. It may end in tears or a fight. Keep bringing it up.

9 Tips To Prepare for your Autistic Child’s Future:

1. Initiate the Tough Conversation

   You cannot do this alone. Talk to your spouse. Ask the icky questions. Talk about the future. Talk about how caring for an adult disabled child factors into retirement. Where you are going to live? Finances. Remember though to go easy on your spouse. We all accept at our own pace. If you don’t have a spouse, think about other family members. Close friends. Someone.

2. Start Talking

   Start talking about Autism. Talk to your neighbors about you child. Tell them your child is vulnerable and to take action immediately if they see them alone. Invite your local police officers over to meet your child. Talk about erratic behavior and how they handle it.  Have conversations with your family, friends and their kids. Talk to them about autism. Just do it. Talk about the future and what that looks like. They will be more supportive if they know.

3. Start Researching

   No matter your child’s age raising a disabled little person is expensive. Start searching for information (state and county specific) around Disability Waivers and CADI Waivers, Consumer Support Grants, Medical Assistance and Medical Assistance-TEFRA, and social security. I encourage you to get a social worker. Social workers can really help ease the transition from High School to adulthood. Look into savings plans. Your child will hopefully outlive you and will not be able to work. None of us know what the future holds in government but I can tell you that most likely your child will need extra funds to live on.

4. Take Safety Precautions at Home

   Look into getting door alarms, fences, overhead lighting, etc. Make your home a safe space for your child. It will put your mind at ease. Be honest, do you think your child will live with you forever? Will the house you live in now work for your child in the future? For us this means having a basement with a separate entrance and a kitchen. Will PCA’s be coming in and out of your home? Do you want them in your living room? Consider installing cameras in your home as well. It will put your mind at ease.

5. Keep your Child Safe

   Look into getting a tracking device for your child like Angel Sense or VITALS. Get a medical ID bracelet. Also, if you have an older child who may be left home alone think about getting a bracelet for yourself. It can say something like, ‘vulnerable child at home.’ If you are in an accident people need to look for your child. Look into ‘nonverbal/autism/disabled’ signs for your car, car seat or even your home. Autistic people can act erratically in crisis situations. This will notify law enforcement of their disability.

6. Talk about a Living-At-Home Situation

   Our child is most likely going to live with us for the rest of his life. This is not negative. This is reality. Talk to your spouse about that. It can make some people very uncomfortable. And that’s OK. We all feel and accept differently. One option is to have a house with a complete living space in the basement or a separate part of the house. Your child can have their own space and live ‘independently’. Think about having a PCA in your home.

7. Talk About Group Home Settings

   The thought of this makes me completely melt down. I can’t think about it. Cooper is so vulnerable and susceptible to abuse and exploitation. So, if Cooper shows ANY desire to move out and live in an adult, semi-independent setting we will start a small care facility and use the home I currently own. We’ve already started researching this.

8. Think about Long-Term Planning
   

   You may have subconsciously avoided the topic of long-term planning for a long time. This is not unusual. You may suddenly feel that you are back to the beginning stages of accepting the diagnosis. However, it may help to remind yourself that with planning, you may find some peace of mind. There are changes when a person with autism reaches the age of majority, which is 18 years old in most states. Parents no longer have the legal rights that they were entitled to throughout their child’s youth. This can include accessing confidential health and school records. Look into guardianship. Guardianship is a court-ordered arrangement in which one person is given the legal authority to make decisions on behalf of another person whom a court has deemed to be “incapacitated.” The guardian’s decision-making authority extends to all areas specified by the court. This will be very emotional. Start thinking about it though.

9. Think About a Future Without You

   Finding a guardian for a special needs kid is different than carrying for a typical one. It can be for life. Think about who you would ask to care for your child or adult child if something were to happen to you.

This is the icky side friends and I talk about it often. I talk about it because if I don’t it paralyzes me.  I am scared of carrying for a disabled adult. And that’s OK. I’m going to figure it out…but I can’t do it alone. As I look to the future I need my son’s village more than I ever thought possible.

I want you to know that you can do this. You are so much stronger than you ever thought possible. And you are not alone.

Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.