8 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.

8 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 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.

  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.

  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?

  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 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.

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Comments

  • miriamgwynne

    February 22, 2017 at 9:02 pm
    Reply

    Fantastic post!! Thank you ❤️

  • mewhoami

    February 22, 2017 at 9:05 pm
    Reply

    Your title got my attention because my autistic son is only 4 months away from turning 18. I've recently learned a lot more about his […] Read MoreYour title got my attention because my autistic son is only 4 months away from turning 18. I've recently learned a lot more about his future dealings, including finances and government/state funded support. It may be a good thing that your son was denied life insurance. In our state of Colorado, a person with a disability can only have $2000 worth of assets in order to qualify for SSI, which they need in order to fund their future needs - food, clothing, housing, therapy, etc. These assets can include life insurance (both his own and being a beneficiary on yours), savings accounts, monetary gifts from family members - essentially any type of fund that exceeds $2000. The only way to go around this and to save for your child, without it being counted as an asset, is to open a Special Needs Trust. Unused monthly SSI funds, monetary gifts, funds provided by you, etc can all be put into the trust and taken out as needed, without effecting the disability assistance your child gets. Your state may be different, but seeing as how it is government funded, it is likely the same or similar. You may have already known all of this, but I found it very eye-opening and thought I'd share just in case. Read Less

  • findingcoopersvoice
    to mewhoami

    February 22, 2017 at 9:08 pm
    Reply

    Oh my gosh so interesting. Thank you for sharing that! And good luck to you!

  • mewhoami
    to findingcoopersvoice

    February 22, 2017 at 9:49 pm
    Reply

    You're welcome. Wouldn't want someone else surprised by that, like I was. Thank you!

  • Natali

    February 23, 2017 at 3:07 am
    Reply

    Very well presented, Kate. We also have a special needs trust set up for Jess. It's important to let friends & family know that if […] Read MoreVery well presented, Kate. We also have a special needs trust set up for Jess. It's important to let friends & family know that if they ever plan to donte a significant monetary gift, like in a will, it needs to go to the trust rather than to the individual. The reason is the same as mewhoami mentioned - qualifying for SSI, etc. Read Less

  • Jen

    July 20, 2017 at 10:22 am
    Reply

    Such an important post! My little guy is "only 4" and I had sinking feeling too that the severe, non-verbal nature of his autism […] Read MoreSuch an important post! My little guy is "only 4" and I had sinking feeling too that the severe, non-verbal nature of his autism isn't going to change but it wasn't until the social worker from his ABA program sat me down and started talking about these questions that it fully sunk in! Read Less

  • elisa brelsford

    July 20, 2017 at 3:04 pm
    Reply

    my sister and only sibling, although not autistic, was disabled(?) from birth. caring for a special needs person takes a toll on the family as […] Read Moremy sister and only sibling, although not autistic, was disabled(?) from birth. caring for a special needs person takes a toll on the family as a whole... she is 13 yrs younger....our mom has dementia.... i became my sisters voice....naming someone to care for a special needs person is very difficult.... you must also take age into consideration. if you as parents are no longer around and you name a caregiver in your age group chances are that cooper will also outlive them. if you start a group home, other parents/caregivers may have the same concerns you have about being taken advantage of. everything is not always black and white. there are soooo many shades of gray! being prepared for the unpreparable and constantly questioning is the best advice anyone can give...ask , ask, ask, ..refuse no...question again and again. sorry if this is disjointed..i typed the thoughts as they came..much love and keep on.... Read Less

  • Vanessa

    July 20, 2017 at 8:17 pm
    Reply

    This is one of the biggest stressors that plagues me. I had my youngest son-who's on the mid to low functioning end, when I was […] Read MoreThis is one of the biggest stressors that plagues me. I had my youngest son-who's on the mid to low functioning end, when I was 41. So if I live to be in my 80s, he'll just be entering his 40s. I can't bear to think of him vulnerable in the world, and even though I know his brothers will help look out for him, it breaks my heart to think one of these days I will die and he may not understand why I left him. 😭The good news is after I am vested at my job I can split/leave my retirement for him, although it won't be very much. The bad news is I'm going to probably have to work until I die or am no longer able. Of course borrowing trouble when every day feels like dodging land mines is hardly good either! You're not alone, and our community is only growing. 🙏❤️ The one thing I know above all else is that my son needs me to make it work for him, and of all things that's what I need to accomplish. I know it's a hard, hard, road, but thinking ahead is critical- thank you for sharing! Read Less

  • Care4Cads

    June 6, 2018 at 4:47 am
    Reply

    It is really great info! Appreciate that you share this information :)

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