Tag: Putting autism in perspective

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Does your child know that he/she has autism? How and when do you tell him/her that he/she has autism?

A few weeks ago I met a lady and I shared that my son has autism, she got all excited (as we special needs parents often do).  It’s kind of like finding another member of the club.  Anyway, she was telling me that her young son was recently diagnosed.  She was so happy that she finally found the answer to why her child was “different”.   She said that his IQ is at genius level, and that he was talking in full sentences and using “big” words as a toddler.  I feel sure that this child can already see how he surpasses other children his age.

I was visiting with a friend the other day and she was sharing with me that a member of her family has a young son with autism and the parents are at odds with whether or not to tell the him.  He is at the age where he is becoming aware of the children around him.

My son is 26 and non-verbal.  His last IEP evaluated him at the level of a 6 month to 3 year old.  Have I told him that he has autism?  No, I have not sat him down and said “Son, there is a physical reason that you are different from your peers.”  But we have used the words around him.  We have always discussed his autism in his presence, talking about it as if it’s no big deal.  Because, we feel that for him and us, it really isn’t. (We have been dealing with this for 1/2 my life…there’s nothing new here)

Now if he was higher functioning, and unaware of his diagnosis, I would have told him that he has autism as soon as possible.  I think it would be unfair NOT to tell him.  There must be enough questions in his head adding to his frustration and anxiety. And one simple word could ease his pain and confusion.   It’s my job to protect him, and keeping him bubble wrapped would only help me, not him.

What do YOU think?  Have you told your child? And if not, why haven’t you?

~ASM

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Playing with Autism

My 25 yr old son,  still likes toys and movies that are age appropriate for a toddler or small child.  I say that, as it is not appropriate for a 25 yr old man to play with cars and airplanes, or to watch Disney movies.

Watching Buddy play with all of his favorite toys, I always thought of him as being “childlike”.  But while sharing one of my many “Buddy Stories” with a co worker this week, my perspective changed.

If you set a  neurotypical 25 yr old  man alone in a room with Hot Wheels, how long would it take for him to start playing? 30 minutes…15….5??

How many grown women get excited when their little niece asks them to play Barbies?  <raises hand>

Buddy will play with his Hot Wheels, and the retired Marine next door, just bought a ’67 Corvette…is that not a toy??

The only difference is that my neighbor  can

1. afford and drive a Corvette and

2. he WILL play with Hot Wheels cars, if he thinks that no one is looking.

I think about all the dad’s with little boys,  and how they always buy them the cool toys cars…how often do you think that the dad is secretly looking forward to playing with them…well, with their son AND the cars.

I flashback to a Christmas many years ago,  my brother D.  who was about 10, had gotten a Figure 8 Race Track.  We played with that thing for hours upon hours during our childhood (he probably still has it).  But we didn’t play with it on Christmas.   On Christmas we sat on my bed and played with his new tape recorder (see, I told you it was a long time ago!) And the first recordings that we made, included the background yelling and cheering of our older brother R (he was about 20) and my father, as THEY played with D’s Figure  8 Race Track for HOURS upon hours.

So this all broadened my perspective,  I have been enlightened, my son DOES play with age appropriate toys. And that tickles me!

~ASM

 

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Where do we go from here?

You just got the official diagnosis…PDD NOS.  What next?

You begin to process the emotions as you look up letters that meant nothing to you a few days ago.   Pervasive Developmental Disorder-Not Otherwise Specified…what the hell does that mean…today…tomorrow and beyond?

Today, it means your heart is broken. That little child that has won your heart and soul, is suddenly disabled. You start looking up everything about autism trying to find a slight glimmer of hope that with medication, education and prayer, he will suddenly wake up one day (soon) and be perfectly normal and everything will be hunky dory.

The more you read, the more depressed you get. You go through a mourning that you never imagined.

The doctors flip flop between experts on autism, and the run of the mill doctors that say things like “I will need to call his psychologist, to see if he is breathing through his mouth because of the autism.” and “You know more about autism, than I do.” When you don’t need to be an autism parent, to figure out that your child is breathing through his mouth because he has a stuffy nose…DUH!

As the years go by,  you come to terms with the beast called autism. You have all of the therapists, IEP meetings and doctor’s appointments on the calendar. You have it all under control, or so you thought.  Then you see other children his age, doing age appropriate things…sports, bikes, making the principal’s list, dating, driving preparing for college.  All of these milestones of your child’s peers  become nails through your heart.   At first, these days come rapidly.  But as the years accumulate, the days come less often, and you may even realize that you haven’t crashed into a pile of pillows in months or even years.

Then once your child becomes an adult, you have a whole new set of concerns…what now?  He’s out of school, he is unable to work, he cannot be left unattended, he may even be incontinent.   Do you keep him home with you?  Do you try to find him a nice, safe, group home?  Is he happy?  Does he feel loved?

Even though our journeys are parallel,  they are not the same.  No one can walk your mile in your shoes. But we can hold hands, and offer shoulders to those walking beside us.

I would like to offer these words,  don’t measure your child by anyone else.  Don’t ever let your child know that you are disappointed.  Always encourage your child to do his very best and you are proud of his accomplishments, even if he is 17 and just mastered making his bed (incidentally, this task is usually not mastered by the typical 17 year old)

Always, tell him that he is loved, assure him that you know he understands, and he is trying.  And above all, make sure that he knows that you are his biggest advocate and fan.

Eventually, you will be okay.  And when you are not okay, reach out to someone else on the path and let them know.  You are not alone, just look around, and you will see others reaching out to you too.

~ASM