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I Am a SNACCER: Special Needs Adult Child Caregiver

By Valerie Herskowitz, MA CCC-SLP

 

As the autism epidemic climbs to an all-time high of one out of every 88 individuals, a new breed of parent will emerge as the years fly by. The next decade will become known as the age of the parent caregiver. Presently, we are just on the tip of the iceberg. Those of us whose children were born towards the beginning of the epidemic, in the late 80s early 90s, are already there. Over the last several years, the promise of new intervention strategies, both therapeutic and biomedical, held the hope that many children would conquer this previously thought lifelong condition. And thankfully, many children did benefit from these strategies. However, there is a big difference between improvement and cure. And the result is that most children with autism will need some sort of support system their entire lives. Some will need a great deal—possibly 24-hour supervision, while others may need just some assistance with the dynamics of living independently. Being that autism is a spectrum disorder, the great majority will require something that lies somewhere on that continuum between total support and minimal help.
 
So what does this mean? Well, the obvious is that, as a parent, we will be involved in some form of caregiving our entire life. And also evident, but harder to accept, our child will need help in the years beyond our lifespan. These are separate but related issues. As a SNACCER and as a person who is professionally involved with other SNACCERS, I would like to offer some suggestions for coping with the stresses that both of these situations bring.
 
So let’s begin with issue one: Caregiving for an adult with autism or other special need. Having been a speech pathologist and owner of a therapy center for individuals with all types of conditions for over thirty years, I have been part of the process that trains and teaches children to communicate and take care of their own needs. I have had the pleasure of working not only with the children, but their families. I suppose that the implication of bringing your child to a therapy center two to three days a week for a long period of time is that eventually this person will learn what they need to know to become a fully independent adult. Unfortunately, that is often not the case. More frequently, the situation is that we can teach the individual to communicate in some fashion or form, but communication is not necessarily synonymous with conversational language. Again, some will acquire that ability, but many will not. They may learn to say or communicate what they want or need in a rudimentary way, but not be able to speak in long sentence-style language.
 
In terms of life skills, it’s similar. We often can train the children to learn certain skills such as brushing their teeth, dressing, showering, and even some basic housekeeping tasks. Others will exceed this expectation in leaps and bounds. We do have a small percentage of individuals that will learn to read and write to the point of being able to go on to job training after high school; some even attend college. But often, even with the most abled, social skill problems stand in their way of really being able to acquire and maintain a position in the real world.
 
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.
 
And lastly, document everything you can about your child’s life. I have created some templates called LifeCare Book. These templates, once filled out, will explain everything you need to know about managing your child’s life. I send these out to anyone who asks me for them free of charge. Just leave your email address on my blog listed below. In addition, I recommend that you write a narrative all about your child. It should be a story starting with what time he or she wakes up and exactly what happens after that. Blow-by-blow, all the way until they fall asleep. You should pretend that you are explaining to someone what your child does every single day. In the story, you will want to include all the special things that you do for your child, all their reactions, every quirk or response to stimuli that you can think of. You can even include photos.
 
Start talking to your fellow parents of special needs children; or if you are a SNACCER, to other SNACCERS. There is comfort in knowing there are others in your position. Seek out listservs and blogs that discuss these issues. I guarantee that once you accept the situation and start preparing for the future, you will gain a better sense of control. And that feels good.
 
 
Valerie Herskowitz, MA CCC-SLP was the recipient of the Stevie Lifetime Achievement Award for her work with autistic and special needs children. She is also the mother of Blake, a 21-year-old man with autism. She is the author of two books dealing with autism.Contact information:  snaccers.blogspot.com

 

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