Dear New Person working with my son

Dear New Person working with my son,

I just thought I would share a few things with you as you begin working with my child.

I hope you are a kind, loving and firm person.  I hope that you are creative and imaginative. I hope that you see outside of the box, but also see inside of the box that my son is in.

I hope that you have some kind of background and knowledge about autism, but not enough to make you an “expert”.  I don’t care that you have 3 degrees in “Autism Spectrum Disorders” and that your parents had a special needs daycare for 15 years (but you never worked with an autistic child).

That doesn’t mean that you know what is best for MY CHILD. My son, is not a case in a book that you studied, he is not the kid that your parents babysat.  My son is an individual, one of a kind, no one like him kinda guy. (as are all autistic people)

Most of all, I hope that you have what it takes to be such a huge part of my son’s daily life.  You see, I am and always will be his #1.  But you will need to be able to fill in as the runner up.  He needs to like you, TRUST you, rely on you, respect you and bond with you.

So here is what you need to know,  my son is a very happy young man, he loves his music, watches, planes, trains, Clifford the Big Red Dog, Scooby Doo and pictures of his favorite DVD’s.  Do not take these away from him…use them as tools.

He loves food, but if he has a day were he doesn’t eat for you, that’s okay…he will make up for it at home.  Because of his love of food, he needs to be kept active.  He can’t be allowed to sit and do nothing all day.

He understands 99% of what you say, and if you allow him to, he will manipulate you with affection or aggression.  This is where you need to be firm and gently push through any of his attempts to distract you.  He is a sweetheart and a flirt, and he knows how to use this to “sweet talk” you into letting him off easy.

He is smarter than we give him credit for…he can figure out how to make things work, either by pushing buttons, or by kissing your cheek until you melt from the sweetness and give in.

Although he doesn’t speak, if you pay close attention, you can figure out what he is trying to say., he can be very cleaver when trying to communicate with you.

With that all said, I hope that you and Buddy connect and that you can help him to make some strides in his skills and cut away, some of the autism box that surrounds him.

But keep in mind that,  that non-verbal, 6ft, young man that you are working with, is my baby…my life.  If you hurt him in any way, you won’t have to worry about the Wrath of God…but you WILL have to worry about the Wrath of Mom!

Welcome to the team!


The Luxury of Sleep

I have a few favorite autism parent bloggers.   And sometimes I laugh with them and other times I cry with them. But I always feel better knowing that I am not in this boat alone.

So I thought I would share some of those blogs with you and share how they relate to the Autism Super Mom family.

Bacon and Juice Boxes: Our Life With Autism, wrote a great blog on sleep or the lack thereof. (click here to read “Sleep (a little bit of fiction about a struggling dad“)

In the more than 25 years that I have been an autism mom, I have spent many a night either sleeping so lightly that I can hear the slightest noise coming from Buddy’s room or being woke up several times by a random toy, or the giggles of an overtired boy fighting to stay awake, to stare into the eyes of his favorite stuffed animal.

If I had to guess, I’d say my average night’s sleep is between 4 and 5 hours.   I have had some nights that I managed to get 7 blissful hours of sleep, and more than I can begin to count, that I was lucky if I could get 3.

The neurotypical  parent would say…”Can’t you give him something to sleep?”  To which I would say, sure…but he fights through it until about 3am, and then crashes, and I have to wake him up for school, which means he will be sleepy when he needs to be awake.   “Can’t you just let him stay awake until he passes out from exhaustion?”   Sure, I can do that too…Buddy has stayed awake for days, literally. (I think his record was 4 days straight).  And if he’s awake, so am I…and I have a full time job, so then my work suffers.

“Well, what do the doctors say?”  First off, there are very few doctors that have more than textbook knowledge of autism.

Buddy’s pediatrician suggested a teaspoon of Benadryl  every night for his first 5 years.    As a teen they suggested Melatonin.  This worked fine for about a month, then he adjusted to it.

Now that Buddy is an adult, I have a system.   When Buddy starts on a sleepless bender, I  never let it get past 48 hours, before I  give him a piece of cheese laced with an adult OTC sleep aid.  Once he gets that first good night of sleep, he will get back into sleeping through the night…6 hours or so.    But we are only blessed with a “normal” sleep pattern for about 3 weeks and then it starts again.

So when I read Mr. Bacon’s blog, I laughed and cried.   I understand that every little click, light, and buzz is keeping Buddy awake on those bad nights, and I do feel guilty after I storm into his room at 3am screaming at the top of my lungs “GIVE ME THE TOYS AND GO TO SLEEP!!!!”  But I have to admit that sometimes I get a tiny bit of satisfaction seeing him jump when the “mom voice” comes out.


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.