A few months ago my autistic, but otherwise extremely healthy child was denied life insurance. In preparation for college, J and I started plans for the boys that could be converted into dollars for college tuition. Recently, we were notified that Cooper was denied coverage. I was irate. Autism is not a death sentence. My son is healthy. He has no medical conditions.
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 6 long years for that to sink in and reach my brain AND my heart.
And, even though he is autistic his future is still very unclear. There is no crystal ball that tells us what the future will hold for my little fighter.
I still pray daily that my son will ‘snap out of it.’ I pray that he starts talking. I pray that he improves socially, cognitively, behaviorally and emotionally. I pray that he grows up and attends dances, birthday parties and makes friends. I pray that he graduates and attends college. I pray that he gets a job and gets married and gives me a dozen beautiful grand babies.
This is not reality though. That is the land of hope and wishful thinking. It is time for our family 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. Rarely are both parents to a 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 him. 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 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.
Here are the 8 tips I can offer you to prepare for your autistic child’s future:
Initiate the Tough Conversation
You cannot do this alone. Talk to your spouse. Ask the icky questions. Talk about the future. Talk about how raising an adult 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.
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.
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.
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.
Keep your Child Safe
Look into getting a tracking device for your child like Angel Sense. 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.
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.
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.
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.