Category: Autism Mom

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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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I Cried Today.

Buddy loves his music.  He has a DVD player and TV in his room, and he plays DVDs and CDs,  from the time he wakes up, until bedtime.

He can find the song he wants, and will play it all day.   He knows, what CD/DVD has the song he is looking for, and how many times he has to push the buttons to get to it.

This morning I was getting ready to pay bills, and Buddy comes out of his room and grabs my arm.   He pulls me back to his room as fast as he can, and I think the usual…he pushed the wrong button and turned the TV off.  And he is asking me to fix it for him.

We get to his room and he pushes some buttons…Tanya Tucker starts singing about a road map of Texas.

I start making jokes, and asking for kisses.  Then I asked for a hug. and he leans over and pushes a few more buttons…he stops and Ms Tucker starts introducing a song.    As she does, Buddy grabs my hands and pulls me to him.

He wraps my arms around him and pulls me into a bear hug, so I start to slow dance with him  as the music begins.

Buddy, understands everything,  so I can only believe that he was trying to tell me something in a way that only a non-verbal person can.

As he held me tight, with his head on my shoulder and mine on his… Tanya Tucker sang “You Are So Beautiful To Me”.

When I looked up and said “Is that what you want to tell me?”  He smiled the biggest smile, and I cried.

I can’t tell you how awesome it is to FEEL loved, when you can’t hear it!

~ASM