Sunday, July 29, 2012

Practicality: Not Becoming an Autism-Only Family

One of the major aspects of parenting a child with an autism spectrum disorder is trying to figure out how NOT to become a one-topic family. It really does not have to be all autism all the time. I make sure to tell parents that if they liked reading non-autism related books before diagnosis, keep reading these novels. If you liked to play golf, shoot hoops, needlepoint or knit then keep doing that. If you liked getting manis and pedis keep doing that. Go out with your spouse and get a cup of coffee together and don't talk about autism. If you volunteered for a charity keep helping out the needy.  Problem is, people tell me is that I can give this advice its just so much harder to put into effect...guess what ...yes it really is...



Now remember I am talking about when your child is first diagnosed, not how an adult should or would handle their own diagnosis. I am told, for many adults the diagnosis comes as a relief and they wholeheartedly embrace their autism. They throw themselves into understanding themselves by understanding everything they can about autism. I am in no way telling these adults what to do, how to feel or how to approach their autism. For them this is a very personal decision and not something anyone else (NT or autistic)  has a right to dictate.

What I am going to discuss here is how you the parent should  act and what you need to do in order for it not to be "all autism all the time." The reality is, that in the very beginning it is all autism all the time. How could it not be? When you finally get that diagnosis for your child, your instinct as the parent is to try to find ways to help your offspring. You need, you want , you are compelled to find out everything you can about autism so that you understand how to help your child. You want to "fix" everything. You want to make everything better and if not better than more manageable, less painful and confusing for your child.

So yes in the very beginning you delve not the world of autism. Your home becomes a sensory friendly environment. Your refrigerator is full of foods and drinks that you are told may be helpful. You make sure that when you go out that there will be a minimal of sensory issues. You look for "autism-friendly" movie theaters, play groups and schools. Good. This is what you are supposed to do.

But......

You also need to remember that not everything in the world is about autism and as I like to say, your child is more than autism. The child who liked to draw before diagnosis is still the child who liked to draw. The child who liked to write stories is still the child who liked to write stories. The child who liked to ride his bike or play on the jungle gym is still the same child. The child who liked to swim before diagnosis is still the same water-fish. Autism didn't give them the ability to do these things, it may make their perspectives or their ability to analyze a project different than say an typical child, but it is not the autism that gives them their talent, their drive or their gifts. Harness these gifts as gifts. Not as an outgrowth of autism.

I used to have a group of friends, all of us have children on the spectrum.  We were at one time our own little support group. Well one of these friends everytime her son did something would say it was because of the autism. When he swam it was because autistic children liked being in the water. When he listened to classical music it was because autistic children are calmed by this type of music. This attitude used to drive a third member of our group to distraction. She would tell me how much she hated that perspective. Everything that our children do is not because of autism, she would say. Honestly I think this difference, among other realities, led to the breakup of our little group. We expected more from our sons, while the autism-encapsulated-mom not only decided everything was due to autism, but autism was also a great excuse for her as well.

While you recognize that your child is still your child after diagnosis you must remember that YOU are still you after diagnosis too. Yes read as much about autism as you possibly can. Make sure you know about the laws and what programs do and do not work for a child on the spectrum. Understand medical advice and the latest technologies to help your child. Delve deeply into this world. You do have to.....but then...

1. Make sure you have a place in your house that belongs to you and you alone.
          When the boys were little and everything about the house was an autism friendly environment, my parents bought me a little black and white television for the kitchen. They told me that I needed to stay connected to the real world. Watch the news they said while I make dinner. It was the best advice. It's why I post information about other topics even on this blog from time to time. You must stay connected to the wider world.
           Have a chair or an area in your bedroom for makeup, and a closet for "nicer" clothes.
           Make sure that you still continue to use face cream and even a little make-up if you want.
           Get your hair cut every few months,  if you can't afford a mani and pedi, then get a manicure at least once a month. Have someone wait on you for a change.Yes the husband can stay with the children for an hour or two while you do this. The hubby will survive and so will the children. Even before we knew that the boys were on the spectrum, I would leave the husband with them for several hours on a weekend day and go do something myself, even if it was only food shopping. They can handle the children and you are allowed some alone time. It's good that they truly learn to understand what your day is really like too. (Listen I understand that not everybody has a partner, but try to find someone to watch the children for a few hours a week if you can or even every other week. Many call it respite, I call it your right to be an adult.)
           Find time to exercise. Even if its no more than going for a walk. Or buy a DVD and have the children do it with you while you are home. Or when they go to school instead of doing the laundry or cleaning the toilets, do some exercise. It's only 30 minutes out of the day.

2. Charity and volunteering
           If you liked to volunteer for your church, synagogue, mosque, or temple before diagnosis still do. If you spent time with the Untied Way or local homeless shelter, still do. I spent time volunteering for a law group that went into schools to teach middle school students about their rights and obligations. I created seminars for my local school about the constitution and coordinated this history with the appropriate school curriculum. I created an ethics seminar for my synagogues education program (the children didn't like the class so it got scrubbed) but heck simply try and teach Sunday school.
           If you wanted to help out with the PTA still do and don't just do it for the special education committee. I purposely did not volunteer for the special education committee while the boys were in school. I helped out as class parent, party coordinator, welcoming committee chair, publishing center support, library aide, and even treasurer of the high school PTA (that one was a hoot since I still can't balance my own checkbook.) People used to ask my why I never participated in the special ed committee and I answered truthfully, that it was important that people see our family as more than an autism family. People needed to see the boys as more than autism or us as more than just a special needs family. Remember society knows that your special needs child takes more money and more effort than a typical school child and it is nice when you can be seen as giving back to the community for something that other people's children can use...seriously a higher percentage of their tax dollars do go to help your child too...
           By the way, this attitude goes for your children in the long run as well. When the boys could join after school clubs I had them join the local volunteer organizations. They helped out by collecting food for the local food bank, collecting childrens books for a local homeless shelter, making posters for  local charity events, raising awareness about the genocide in Darfur, lately they have helped a local horse therapy barn with some construction (they did not see it as an extension of their autism, this project was for Martin Luther King, Jr service day) and this summer they are interning at a local charity doing data entry and what ever else is needed. I had them help out with charity events at our synagogue when they were younger too. If your religious organization has youth groups sign your child up too.
           Now I did and still am a volunteer parent advocate in my town. I am there to help parents of newly diagnosed children and to shepherd them through the education process if they want. But it is done privately with the school district. My name is not on a roster nor is my name part of the CSE committee members. My services are just offered when a parent applies for an evaluation. Listen, I said do other things besides autism or special needs, I didn't say don't help others if you can....

3. Your professional and education life
           I will admit right away that I am one of those very lucky women who could chose to stay home with my children. The hubby earned enough money that we were able to give the boys what they needed. OK, I will also admit it, we have an obscene amount of debt too. But that just goes with the territory of special needs parenting I think. The issue for me was who would do a better job at raising the boys, me or a stranger. Luckily I really didn't have to think  too long about this issue. Hats off to the single-special-needs-parent or any working-parent-couple of special needs children. Coordinating that reality is something I never had to face and I am not certain what I would have done.
            Remember too, if you are one of those parents who goes to work, its OK to like what you do and to be away from home for awhile as well. It's just fine to think about your professional life and to care about your professional future. Don't guilt yourself. I have friends of typical children who love to work because they like having daily grown-up conversations. These people like that they inhabit two worlds and not just one. Being a special needs parents doesn't mean you can't and shouldn't feel the same.
            But for those of us who do stay home, another way to not becoming inundated with autism is to remember that you were trained in a profession and have some skill sets that are very important. After the boys were diagnosed I decided that I needed to continue with my professional life. I actually had never passed the Bar Exam in the state and I decided to try again. I bought an on-line study course and I coordinated my program. I studied between therapy appointments, laundry, cooking, food shopping and mommy-taxi time. I studied with two small children either sitting on my lap or sitting next to me. And yes I passed. It was something I had to do for myself. Have I ever really practiced law? I tried part-time from home, but nope it really didn't work out at all. No, sometimes you really can't have it all.
           Today there is so much on-line education and professional programs that you can continue to learn and practice your skills without actually leaving home. Remember that little corner of a room for your make-up and clothes....add a computer and/or text books. Don't stop learning and don't give up what you have learned.
            Also telecommuting is a major part of business today. Don't just give up everything you have worked for. Talk to your boss, see what you can work out. Or start a business from home. So many moms do it, especially in today's economy. You would not seem like the odd-person out. (I know I talk a good game, but in reality I still haven't figured out a business from home. As I said, I am still trying to figure out what I want to be when I grow up.)


In truth there is alot you can do to not become an autism-only family. But this mainly depends on the time and effort you put into remaining a rounded person. It takes work to accomplish this goal. It will not happen simply because you want it to. In all honesty while your children are little, you will be more of an autism-only family. You are working on understanding and coordinating everything in their lives to set them on the right path. As they grow up and you see what they are also interested in and where their talents lay, you too can loosen the autism-strings and as they fly so can you. When you have more hours during the day to yourself, you will find that you can rediscover yourself as well.

Everything I mentioned in this post is not something I did or accomplished from the get-go. Initially as I wrote, my parents bought me a little television to stay connected to the world. That and studying and passing the bar are the two things that kept me in the wider-world. You need to understand that everything is incremental in this world and that the steps you take do not have to be huge ones either. For example: crossword puzzles. I love puzzles. For years everyday I did the New York Times crossword puzzle. That was my challenge and that was my escape, so to speak. Remember to keep yourself its the little things, not the big things that count.

This is also why I started the blog The Rediscovered Self. As an autism-parent I realized that so many of us forget ourselves and what gives us joy. We spend out lives worried and frightened for our children and what the future may hold for them. But you need to try not to live that way. Plan and coordinate as best you can. Do what you can for your children. But a depressed parent, a parent who forgets their own humanity will not be a help to their children ever.

Related posts: 
From B is for Balance:

Balance. I would have to say that that has probably been one of the hardest aspects of life with special needs children. Oh not that you don't balance their lives. Between therapies, doctors, school, "typical" activities and just plain doing nothing, we all seem to be able to balance our children's lives. What I am concerned about when I speak to many parents of special needs children is the ability of the parent to balance their lives.

Yes, when you have a child your obligation is to make sure that that child has every advantage in the world. Yes, as parent you have the obligation to provide, nurture and support your child as they grow, develop and mature. Yes as a parent you have the obligation to ensure that your children thrive.

The problem that happens though is that we forget that we too are entitled to grow, develop and thrive along with our children. You do not cease to be a person because you are a parent. You do not cease to be a person because you are a parent of a special needs child. You do not cease to have your likes, dislikes, needs and wants as well.

This is when the balancing becomes important. You need to find the time to remember that you too are a person. Now do I speak from experience of being able to balance my life? Absolutely not. I speak from experience of NOT  being able to balance my life. I speak from experience of demoting my own importance. Read this mea culpa to see how sorely lacking I am in this regard.

Listen it is not that you relegate your obligations and the love you have for your child to the back burner when you do something for yourself. It is merely making sure that you remember your own humanity. Now what exactly am I talking about?

What I am talking about is that YOU are allowed to go with a friend to get a cup of coffee without the children just like parents of typical children do. You are allowed to have lunch, go to a movie and even have a date with your spouse. I am talking about reading a newspaper or a book that has nothing to do with autism, but may be part of a hobby that YOU love. I am talking about that it is OK to get a manicure and a haircut. It is OK to buy yourself some makeup if that makes you feel better. It is OK for you to go for walks, exercise and eat food that you enjoy, not just eating the leftovers from your child's meal. It is OK that YOU are not subsumed by your child's special needs. It is OK to still be YOU.

Y is for You

 My Happiness Project

Don't Lose Yourself

Life May Suck, But Your Are Still a Human Being




Until next time,



Elise