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I Am a SNACCER: Special Needs Adult Child Caregiver

You may then be asking, “What is the point of all this therapy and training?” Well, here is the point: the more skills a person acquires, the less support they will need as adults. The operative word here is less.  Less support, not no support. And in this situation, less is better.

So as parents, we must keep our focus on that premise. We should not tackle our child’s problems with the expectation that we can fix it or even improve it to the point that one day, this child will grow up, move out of the house just like our other children, go to college, get married and have kids. I feel that at a very early age, we need to be realistic and plan for the future. We need to accept that there is a good chance we will be in the position, as a middle-aged person, where we will still be taking care of our child in some way. I think that the more we prepare for this emotionally, financially, and physically, the better off we will be.  

I can’t tell you how many families that I work with who are absolutely blindsided by this realization when their child turns 18 or 21. It does happen more frequently with parents who have a higher functioning child. Usually, those of us with more involved children reach the point of acceptance a little earlier down the line.

The second issue is harder. Our children’s life after we are gone. In conversations with parents who are quite intelligent, I hear the most irrational comments: “I’m never going to die.” Or “I’m putting it in God’s hands.” And the best one of all: “The government will provide.” Please, please, please, don’t put your child’s future in the hope that you will never die, miracles, or the government. Surely, if you are a person of faith, you believe that God helps those that help themselves. Several years ago, I joined up with another father and tried to organize families to work towards the creation of a residential community for our children. Unfortunately, my timing was too early. Now, I have rekindled that passion. I think with so many kids on the autism spectrum growing up, there needs to be an international movement. Yes, I said international movement for families who have children on the spectrum, to unite and start discussing the future. Let’s please get a buzz going. A big buzz. I understand it’s difficult to discuss a topic where there are no answers. But let’s start creating them. Wouldn’t it be wonderful if you knew that your child would be safe and secure no matter what happened to you?

I know these are two difficult subjects to discuss. But the answer is to be realistic and to start preparing early. Start with small steps. Acquire life insurance. Establish a special needs trust so that if something happens to you, the life insurance would go into the trust.

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