Monday, February 14, 2011

Exhaustion: my unproven theory.

For me there are many different kinds of exhaustion. There's the exhaustion that comes from a full day of doing physical work like moving, spring cleaning, being up with the baby all night or attempting to throw a garage sale (something I will never again attempt in my life). There's the kind of exhaustion that comes with using your brain too much, cramming for a final, doing mental gymnastics at work trying to solve a seemingly unsolvable problem or reading a particularly scientific text and trying to remember the wisdom found within. There's emotional exhaustion, the kind you feel when someone close to you is not close to you any more, what you feel when you are watching on a one-way mirror when your child is being tested for delays, what you feel after a good, long, hard cry. And finally, my unproven and untested theory The Exhaustion of Autism which is a strange combination of the above exhaustions with a lengthy time line attached.  I'll explain. Even if you don't have an ASD kiddo, I think you'll still be able to understand this theory since it is based in babyhood.

This is something I came up with talking to my psychologist. Occasionally I do come up with something enlightening and she is so very helpful in pointing out any enlightenment I find during my long ramblings in her office. This is greatly appreciated. On this particular day I was talking about how exhausted I was, just bone deep, fall on my face, shut my brain off, talking in babbles, can't even lift my arms exhausted and yet, I was sitting, talking and somehow made it all the way to her office awake. What I was talking about on that day was back when Cameron was 3 and had zero communicative speech and very little alternative communication. What I realized when I took a brain trip back 6 years is that the tricks and tools I used then, I used when he was a baby and I still use now.

I'd like to add an aside here just in case I have some non-ASD mom readers. Different types of speech are considered when assessing a child who might have possible delays. Receptive speech is what the child hears and understands. Expressive speech is what they can relay to a listener. Rarely is expressive and receptive speech at the same level and for ASD kids the difference could be staggering. Cameron's receptive language was much much higher than his expressive language when he was diagnosed and even now there is a marked difference. Adam was the exact opposite, his communicative speech was far superior to his receptive speech. Alternative communication is things like sign langage, PECS (picture exchange), typing, using voice output devices, etc. 

When you bring home a newborn home from the hospital you are immediately entrusted to care for the tiniest human imaginable, you have to assess his needs, wants, desires and distress pretty quickly or you are going to find yourself walking the halls at 3am wondering who's baby this is and why they gave him to you? Moms kick in pretty fast and within a few days we've got the hungry cry, separated from the poopy cry, differentiated from the 'I'm soooo bored' cry. It's sink or swim here, if he's bored you can let him cry long enough to finish brushing and flossing, if he's hungry you can probably skip the floss and just hit the brush, if there's poop involved you might just have to deal with stinky breath for a little while longer. BUT loe and behold! Your child grows, they raise their arms and say 'UP!', they point to the cookies, they walk right into the bedroom, grab a diaper and throw it at your head. And all that extrapolating of cries and reading of the baby mind takes a back seat more and more every single day.

But not when your child has Autism. At three, Cameron could not talk, could not point, didn't get the signs and got too frustrated to use PECS. He did a lot of grunting, screaming, and crying. As his mom, I kept the infant connection. I could look at his face and see what he needed, I could hear in his cry his distress and his desires. I could talk to him, he would understand and his cry would change and we would hold a conversation of one side crying and one side talking and in the end of a 15 minute session you feel like you've just taken a 3 hour college calculus final. Six years later we have expressive speech, we have receptive speech the need for alternative speech is greatly reduced and yet I have to hold that connection strong because when anxiety hits, when frustration hits, when misunderstanding hits, communication massively FAILS. Immediately I am right back in front of the pantry door with my 3 year old saying, "what do you want?" and he is screaming in my face in pure and helpless frustration only now he is nine and I can't just lift him up into the pantry and let him grab whatever it is he wants. Now his wants transcend the pantry and he wants the bell not to ring until exactly 3:10 and he wants his teacher and not a substitute, he wants the red shirt that was torn and thrown away 2 years ago and his brain will not let him let it go. 

So here is the basis of my theory, the connection that you form with your infant in the first few days of life is an exhausting and emotionally draining. Yet it is ultimately one that lessens over time unless you have a special needs child specifically a child with a communication delay. In this instance you are forced to remain the tool to which he uses to communicate with the outside world. To read his mind is emotionally exhausting, to be his ears and voice is mentally exhausting and to keep him safe when the anxiety and frustration hits and he lashes out blindly is physically exhausting. To do them all at once, in public, in the span of less than 3 minutes is Autism Exhausting! 

This may sound negative but I have to tell you, being able to connect with my boys this strongly and this long has allowed me to make their life easier. Some days I truly feel like I can feel what they are feeling and I can put myself in their positions to understand why they are so frustrated and I can do it quickly and easily. Let me see if I can give you a few examples:
  • Neither of my boys wanted to go to speech during the school day. It was a fight for the speech teacher to get them out of the class room. When I checked their class schedules, speech wasn't written down because not all the kids went to speech. Write it on the class schedule, no more problems with the boys going to speech. (This seemed really DUH! to me and I couldn't believe they didn't catch on to that sooner)
  • Cameron kept twisting in his chair and the teacher couldn't get him to sit straight. She would reward him for sitting straight for 5 minutes at a time but he never got the reward because he twisted in the seat every single time before the 5 minutes were up. The clock was BEHIND him in the classroom and he was twisting to see if the 5 minutes had passed yet. Put a clock in front of the room too, he never twisted again because the reason he was twisting in the first place was that he was looking forward to the timed events on the schedule.
  • Cameron would get completely overwhelmed in class, would need to pace and disrupt the teacher constantly. Because of his program he could do a student request to go to the support room for a break OR if he got too agitated he would then be sent to the support room for a forced break. Of course the student request is preferred to the forced send but Cameron never did the student request. When Cameron gets anxious or frustrated the first thing that goes is his expressive speech, followed closely by his receptive speech so by the time he hit frustration he couldn't do the request, ended up being sent to the support room and it took him at least twice as long to calm. I gave him a laminated bookmark that said, "I need a break!" and told him all he had to do was to give it to a teacher or assistant at any time he needed a break. He took at least one student request every day for at least 2 weeks and in that time was never sent to support once. He couldn't talk so we took talking out of the equation completely.
Okay, thats all the examples that this exhausted brain can come up with right now and the purpose of them is this; these are excellent teachers, well trained and familiar with Autism (we really have wonderful teachers this year) and they couldn't see these needs because they couldn't connect with the boys', see what they see, feel what they feel. It is for that reason I try so very hard to maintain that connection and live in fear of the day that I may not be able to help them in this manner.  All the Autism moms out there know of this bone deep but keep moving exhaustion because I'm sure they've felt it at least once today. All the moms of typical kids out there also know this exhaustion because they felt it for at least the first year or two of their babies lives. We all have the connection in common, even if we don't have the same end date. 


  1. Maggie you are such an advocate!!!!!!!

  2. This almost made me cry Maggie. Thank you friend. Keep writing (I selfishly request!)

  3. Beautifully written. Even with my constant question asking for the past 9 years, that added on to your frustration I'm sure, I'm learning more and more with each blog. Wonderful and simple explanations. I have no doubt you're helping many Moms with new ASD diagnosis. I love you very much.