A Different Person

Having a child with a disability is different from what I expected.  During the diagnosis process, there was much said about what Our Kiddo’s language delay could be from.  There were power struggles.  There were accusations.  I always felt once we had a name for his problems, our families would run to help or give the outward appearance of support, or at least respect.  What I didn’t expect was what we got.  I became a very different person.

True autism, not the autistic-like behaviors which occur with real neglect, cannot be caused.  Talking too much or too little to a child will not cause autism.  We did not know then, as most young parents do not know, nothing we were doing was causing Our Kiddo’s language delay.  We were very unsure of our own parenting skills–perhaps some of what was being suggested could help Kiddo.  We tried to implement some of these “suggestions”, such as not giving him anything until he asked.  It did not work and frustrated both Kiddo and us as well.  Nothing a normal, concerned parent can do will cause autism–you cannot set out to create a child with autism.  Cold, unfeeling, frigid mothers do not cause autism.  We know many things do not cause autism.  We just do not really know what DOES.

The person I was before Our Kiddo and before my marriage doesn’t exist.  I like to think I am a better person but some days, I am not so sure.  I was quiet and shy and liked to assess a situation before opening my mouth.  Despite the fact I have been a performer for almost all my life, my everyday behavior was not flamboyant and at times, mousey.  I was a “Pollyanna” and always tried to see the good in a situation and the good in a person before passing judgment.  I took folks at face value and didn’t spend my time worrying about what they were doing when I wasn’t around.  I always assumed people thought the best of me because I was a good person, honest, helpful, intelligent and loving.

The knowledge someone could think I was a terrible mother has never left me.  I know I am a good mother but being told over and over something I did caused my son’s problems left me always questioning myself.  I have worked to build my self-esteem but sometimes, I lapse and worry I am not doing enough or not doing the right things.

I didn’t expect to justify every choice.  Or to be expected to tolerate people calling each other “retards” in my home, in front of me, in front of Kiddo.  It amazed me when a fringe relative called us “cursed” one Christmas, being told ‘cursed” is not what they meant by their mother-in-law and, in addition, I was imagining their forcefulness.  It is as if having a child with a disability automatically cancels your subscription to polite society and folks think they can say whatever comes to their minds.  I’ve had relatives ask things like–does he have a lower hairline because he’s “retarded” (my side) to asking if we have had his hearing tested (Hubby’s side).

I am a different person.  I can only put up with so much nonsense and then I blow, sometimes quicker than I should.  I am not shy when it comes to Kiddo’s rights, especially at family events.  I use my performer’s voice, posture and flamboyance to explain autism–and my son–to the world.  As far as being “Pollyanna”, I take joy in the small achievements Kiddo makes every day but I am realistic.  I take strangers at face value but never family–I have learned the hard way, through 30 plus years–it is those relatives who don’t seem interested who can throw me for a loop with their ignorant comments.  It is mind blowing being called a terrible mother–or other crass comments– still be married to Hubby and handle the challenges of living with a child with autism. Sometimes, I don’t know how I do it.

It is so important to support parents of young children–in a positive way–when autism or any disability is suspected.  Young parents are unsure enough without having everything about their parenting and character called in to question.  Grandparents and other extended family members must try to step back and assume the young parents are doing everything right, until proven wrong.  The residuals of doubt and hurt in a parent will linger long after the “all is forgiven” is spoken aloud.

We have to live with autism. I was told at various times in Our Kiddo’s life, we would have to live with our choices for him. Some meant it as a reassurance and some meant it as a criticism of what we did and did not do for him as far as treatments and therapies were concerned. Many in our families made it so much harder–harder than it needed to be–living with Kiddo’s autism. But  I am living with it….living with autism….and my darling son….and learning and embracing it and making it my own. But I am living with it…on a daily, weekly, monthly and yearly basis…it is terrifying…but there is nothing else to do…what choice do I have?

Every month is Autism Awareness Month at our house!

The Right to Raise Autism Awareness and Acceptance

I would like to share an experience I had and tell you why I think it happened.

April is National Autism Awareness Month so I was wearing an autism awareness bracelet.  As I was waiting in line to check out at my local craft store, the person behind me noticed the bracelet and asked if I had a child with autism.  I laughed and said my “child” is 36 but still has autism.  She started to YELL at me because *my* generation didn’t do enough to “cure” autism and how dare I wear that bracelet because I didn’t do “diddly”–she just wouldn’t stop.  I actually started to cry.  I have been going to this store for over 20 years, including those years I served as a local chapter president of the Autism Society of America, purchasing yards and yards of puzzle ribbon to use for Autism Awareness ribbons.  This was the first time I have been accosted for trying to create awareness for autism and told I had no right to do so, and I was shocked.  The young woman left in a huff, left her items and accused me of not caring enough about my own child to “cure” him.

I had never met or seen this young woman before our encounter.  If she had known me, she would have known my husband writes much about autism for his profession, I have been active in the autism community both as an ASA local chapter president and an advocate and our family does what it can to promote awareness and acceptance.  We have a pretty good life, in spite of having a child with autism.  And yes, my son is not cured.

I would pose this question to you–what happens when you do everything you can–fight, try new “treatments”–and your child is still not cured?  And if your child is not cured, are you supposed to write your kid off, resign from parenthood as a “failure”, and slink away into the sunset?  This is the impression being given to many young parents of children with autism; if they fight the medical establishment, try untested “theories” and are as angry as possible, their child will be “cured”.  If you don’t fight hard enough, your child won’t be cured and it is your fault.  It is almost as bad as the theory of the “refrigerator mother” touted by the late (and wrong) Bruno Bettleheim.   And autism celebrities seem to be telling us bucking the system gives you an “advantage” in finding a “cure” and certainly gives you the panache the media likes to highlight, but what happens when that doesn’t work?

We tried diets, vitamins, drugs, behavior therapies and many other things.  Our son began an early intervention program at 27 months, very early for the 1980s.  Some things helped, such as a form of ABA (applied behavior analysis), sensory integration therapy and intensive speech and language therapy, and some things did not, such as vitamins and diets.  Our Kiddo is better in many ways than we thought he would be, is nonverbal, uses American Sign Language and tests in the mentally challenged range, eventho we know he is much smarter.  He is certainly not “cured” in a real sense, but is able to function in many situations; however, he will never be able to live independently. At 36, he still is learning something new every day and is proud of himself when he does.  I suppose, since I accept my son for who he is and what he needs right now, my views are different from those with younger children.  This doesn’t mean I have given up or I am happy I have a child with a disability.

We fought, as many did in our generation, to get services in the public schools and in 1991, autism was officially “allowed” as a disability to be put on IEPs (individual educational program) to qualify for those services.  We are still fighting in our state to get quality services for adults with disabilities.

The young woman I encountered was not the first person to deride me for not “curing” my son.  As a local ASA chapter president, I did not bring my son to chapter meetings, simply because I wanted to focus on the meeting and not on him.  On one occasion, I had to bring him early to set up before our meeting because my other sons had events at their high school and my husband was seeing patients (he’s a physician in private practice)later than usual.  He would be able to swing by to pick him up before my meeting started.  Our Kiddo helped me set up the meeting room by arranging the table, bringing the chairs, and setting out the snacks.  He wore his lately acquired letter jacket and was very proud of it–what better place for him to try out the social skills we worked so hard on, right?  Wrong, apparently.  A young couple who were attending our chapter meeting for the second time were offended I brought a MONSTER–my son–as he was not cured and told me so, in front of my son and other chapter leaders.  The young couple told me I had no right to be president since I was a “failure” and by bringing him, I was not encouraging them or giving them “hope.”  They wanted me to lock him up and not bring him out in public.  When my husband came to pick up Kiddo, I was shaking–and my friends were horrified.  I soon resigned, after my commitments to chair a fund raiser, simply because I didn’t feel I should be berated by parents who have not walked a mile in my shoes with no concept of what was to come and no desire to.

How about another view of autism?  After doing everything you can, you have to accept whatever happens at the end.  It may not be a complete cure and you have to come to grips with that.  With 20/20 hindsight, it is easy to tell young parents to try everything but keep in the back of your mind, it may not work–and you have to be okay with that.  It is not so bad, but it is different.  We bring Our Kiddo out in the community as much as possible since he is not a “failure” as those young parents felt him to be, but a “success” of the spirit–his and ours.  We are proud of the things he CAN do and focus on those things, rather than what he CANNOT do.  My husband and I feel we have a good life, an intact marriage, three great sons and are happy, for the most part.  Our two other sons are wonderful, bright, talented young men and love their brother but it is tough.  We wish Our Kiddo did not have autism, but he does.  This is NOT the life we signed up for when we decided to have children, but it is the life we have.  Our family’s mantra is “when God gives you lemons, make lemonade–or an Old Fashioned”.  It takes time to get to that place, and no one expects parents with newly diagnosed children to come to this quickly, but it is a healthy option.  I believe it was Abraham Lincoln who said, “People are just as happy as they make up their minds to be”.  We have made up our minds to be happy and Our Kiddo takes the lead as the happiest.

Every month is Autism Awareness Month at our house!

World Autism Awareness Day: An Ordinary Life

If movies and television are to be believed, it would appear most of us who have children with challenges spend their days trying to find a cure, putting that cure—whatever it is—into practice and generally being unselfish and saint-like. Interviews of Celebrity Moms from The View to Ellen prove those truths. In the media, Celebrity Moms leave no stone unturned looking for a cure or an answer, look great, write books about said cure and have their nannies to help them—doesn’t everyone?  It’s an unrealistic view and it doesn’t help anyone in the real world. And in that real world—the world in which you and I live —no one could spend that much time doing what is purported they do without having scads of help.

When Our Kiddo was a young child, most of my days were taken up with ordinary things—islands of busyness with his autism of course—but those day-to-day things which make a life.  When The Middle Boy and The Youngest arrived, I had more of them. While taking him to physicians, I still had diapers to change, laundry to do and bills to pay.  When he was in pre-school, I did my grocery shopping or wrote my Christmas cards and then picked him up. I did research about childhood development while he took afternoon naps or cooked something for dinner, depending of course, if I had had time to go to the library in those days before the internet. I read in bed or when the kids were playing in the park.  I took recycling to the recycling place when I took Kiddo to swimming class. Like moms everywhere, I was a champion multi-task-er.

We can all bustle about but the truth is we are probably not as obsessed as you would think because we can’t be.  It takes energy to raise a child with autism as it does any child and we have to pace ourselves.  Many young parents of kids with autism feel guilty because they are not able to put in the time they think they should. There is a panicky feeling when you can’t seem to do everything you think you should be doing and I certainly understand. We are only human, after all, and only someone with superhuman stamina can live up to the expectations others have about what we should be doing. We can grouse about having to do laundry or any of the sundry tasks life makes you do when you have children—disabled or not–and a home and a family.  I certainly remember being unhappy having to do chores when I could be doing something to help Our Kiddo….but, someone has to do towels.

There is a mood now of how serious autism is.  We must be serious and single minded and self-sacrificing or must not understand the gravity of it. How can you get your oil changed or go to the dentist…your child has autism!  Autism is “trendy” now and I have come upon many young parents resentful of me, of our family, of our choices because they don’t think we did enough.  By that I mean, they think things should be easier for them now because we paved the way.  Our Kiddo should have been cured and research should have been in place so their child didn’t ever have to have autism. We did pave the way, things are better and autism is more in the news by what we did, but it doesn’t seem to be enough.  They wanted us to do more. What they fail to realize is they are in the same place we were 30 or so years ago, having to advocate for our child as well as raise him!

Our Kiddo isn’t cured but we have a good life—an ordinary life–in spite of his autism. What more do people want?

Autism awareness month is every month at our house!

Down the Autism-Brick Road

I have been in the Autism-Biz for about 30 years.  I don’t count the time before we realized anything was wrong because that was Happy-Land and Baby-Land and Everything-Is-Great-Land.  I remember, vaguely, how it felt to have a perfectly formed little boy whom everyone thought was adorable. Those are misty memories and that young mother I was,  was a wimp.

After our diagnosis, then what? You must think back in the days before autism was trendy (yep, being flip but just follow along here)there were no therapies and certainly no therapies such as we have today.  You would be wrong. Many of therapies in use now (they usually have different names) were in use back then. And we must have tried them all!

There were plenty of treatments to sort through and Hubby and I came up with a system how to decide what try.  He is a scientist and I am a teacher so we divided the therapies–anything medical or diet related, he would research and anything educational or speech related, I would.  However, if one of us came across something promising in the other’s category, we would ask them to research it. We had a *smell test*…if it didn’t smell right to us, we wouldn’t try it.

Since hubby was in grad school and we lived in a university town, there were many wonderful programs Son One was eligible for.  Early intervention and multiple times a week speech therapy (his former speech therapist developed her autism protocol using her work with our Kid), Early Childhood Education were all the basics we had in place.  We tried Son-Rise therapy–which meant we spent hours in a dark bathroom.  We tried  sensory integration therapy and music therapy and play therapy and social stories, all of which helped a bit.  What really worked for us is now called ABA.

Vitamin therapy was a disaster for a lot of reasons. He ended up in the hospital with one…..that story will be a future blog post. He refused to take another, very expensive vitamin powdered version we decided to buy instead of the huge tablets, no matter we sprinkled it on his favorite chocolate pudding or apple sauce or orange juice…what a mess!

We must have tried five different diets.  The elimination diet was six of the longest weeks of my life because with three kids, the younger two being gifted and questioning, we had to put ALL of them on the diet.  And the now common GFCF diet, which is now pretty standard to use for kids with autism, was miserable. Whatever we tried, diet-wise, didn’t work. But try it yourself, it might work for you.

Believe it or not, when the Kiddo was in his late 20s, we decided some of his acting out behaviors seemed to be pain related and tried an anti-migraine diet and…ta-da….he is 95% better than he has ever been!  Being tenacious has paid off, big time, with the diet issues. We didn’t give up, so you shouldn’t either!