Category: Autism Awareness

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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.

~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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Please and Thank You, Really Are the Magic Words!

Communication, what does that mean to you?  Talking, well of course.  But how many of us talk about nothing?  Is that wasted communication?

I remember when Buddy first got diagnosed.  All of the professionals, told us “Don’t waste words… please, thank you, excuse me…these are all wasted words”.   I was instructed to speak to Buddy in short, direct sentences.  “Use your fork.”  “Give me the crayon.”  According to those that went to school to be autism experts, this was the only way to communicate with my non-verbal son.

But the mother in me never listened to this suggestion.  My son, not only hears these words, but I know that he understands them.

How do I know?  When Buddy wants something (very badly) he will kiss my cheek.  If we are visiting somewhere and he is ready to go home, he will hand me my purse and kiss my cheek.  If he wants his TV turned on, he will hand me his remote (or every remote in the house, if I ignore his initial request) and kiss my cheek.  This is his way of saying “Please, Mom”   We both understand the importance of that “wasted” word.

So how does my non-verbal son communicate?  I am sure you have seen the picture cards…they look like stick figure art…(think road signs, or restroom signs), or actual photos of objects, well, Buddy doesn’t use them with me.   Sign language?…Buddy can sign “More”  but that’s about all he picked up.

So, okay, how do we communicate with each other?

Ha, ha…very well.   Buddy understands most of what I say. Even if he pretends that he doesn’t.

For example, when we leave the house in the mornings, I give him instructions.  It’s usually something like “We need to turn off the lights, and then I need, Mommy’s purse, Mommy’s keys, Mommy’s lunch and Mommy’s bag.”  As he completes one of the instructions, I repeat the request, without the part that he fulfilled.  Very rarely, do I need to point to any of these.

Okay, so HE understands ME, but how does HE communicate his wants/needs TO ME?

He is very creative and smart.  As I said, if he wants to leave, he hands me my purse.

If he wants his TV on, he hands me his remote.

If he hands me the “cookie dipping cup”, I know he wants milk to dip his cookies.

If he hands me the nail clippers, and sticks his finger in my face, I know he has a torn nail.

If he removes his shirt (immediately after I put it on him) and tosses it in the coat closet and slams the door…I know he doesn’t want to wear that shirt…and may never wear it again.

If he pulls me to the sink and turns on the water, he wants me to help him wash his hands.

If he hands me a cereal bowl, box of cereal and milk…yup, he wants cereal.

If he hands me a bowl, caramel syrup, and directs me to the freezer…Bud E. Boy, gets a bowl of ice cream with caramel topping.

If we are in the car and he pushes my shoulder, he wants the song/station changed. BUT if he gently taps that same shoulder…he wants the volume turned up.  (how cleaver is that?!)

If he hands me a ripped CD/DVD picture and the tape…yup, you guessed it…he wants me to tape it back together.

Now, keep in mind, it has taken several years for us to learn this.  But it’s quite ingenious of Buddy, to figure out his side of the conversation.

Many times, he has tried to get me to understand, only for me to say “Buddy, I’m sorry, I don’t understand, you have to show me.”  And generally, that results in him getting a little frustrated, but then he discovers another way to get me to comprehend his thoughts.

I remember several years ago, I had a horrible case of laryngitis.  I spent 3 days writing everything down.  It was very frustrating to not be able to speak, and if I didn’t write things down, oftentimes, the other person, had no clue what I was trying to get across to them.

So I think it’s utterly amazing, that Buddy has figured out how to communicate with me.

Oh, I forgot one, my all time favorite…when Buddy pulls me to him,  guides my arms around his back, and hugs me tight (not letting me go)…it means “I love you Mom, you’re my favorite!”   Most parents hear “I love you”…but I FEEL it!

There are NO wasted words!

~ASM