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.


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!