Caveat: I am writing today on about three to four hours of sleep. This post may not be eloquent but it will be honest. I pray it won't get me into too much trouble.
I do believe my boy is fundamentally opposed to sleep. The difficult thing is that I'm not.
Isaac has struggled with sleep issues since he was a baby. I remember being in my third trimester with Isaac's younger sister, cradling Isaac around my protruding stomach and praying he would sleep so I could. He would move his arms. I would reposition him. He would kick his legs. I would reposition him. I thought he was quiet and he began to fidget with his toes. It became apparent that there are some things that a parent cannot make a child do. Let me assure you: You cannot make a child sleep.
Those early days were easy though. Later on, we would wake in the night/early morning/who knows anymore to the blaring of "I Can Be Your Friend" (a Veggie Tale song that is usually sweet and welcoming but whose warm notes are not particularly edifying before four o clock a.m.) and Isaac jumping up and down in front of the television. We got up and put him back to bed. Ten minutes later and the television was blaring again. And on and on and on.
Autism is a neurological disorder. Isaac's brain is inherently different in ways that modern science does not understand. I am completely convinced that he does need as much sleep as a typical person. The difficulty is that...Sam and I do need a little sleep from time to time.
Having children is stressful. Having a child with special needs is exceptionally stressful. You have to be prepared for one of fifty scenarios with twelve solutions and three back up plans in two seconds flat. You must reasonably deal with your child with special needs, your typical child, your spouse, your coworkers and any of a plethora of medical, educational or bureaucratic representatives as they present their issues. You must be an expert on medication, behavior, therapeutic intervention, educational policy and law and the state hierarchy of services on two to three hours sleep. You must always present as a professional or you will be brushed away as an idiot and your child will not get the attention or service that he requires. This is a minimal standard.
Do you remember dragging yourself through those first few months of infant waking? Do you remember you dependence on coffee and the bags under your eyes? Do you remember waking from your first full night sleep that your baby allowed you? Remember that and multiply it by fifteen years. That's what we are dealing with.
I'm not writing this to complain. Everybody has something and I understand that. I'm writing to educate....to let you know what its like. I'm writing to give you a feel for the level of exhaustion so that when you see a parent of a child with special needs you will better understand and will give us grace if we ask you to repeat something, if we trail off mid sentence, if we lose focus, if our eyes or our tone of voice reflect our frustration, if we shed tired and frustrated tears, if we look like we have been up all night. Give us the gift of grace. Dear ones, you cannot imagine what it is to be awake for three nights straight as your ceiling shakes under a teenager jumping all hours in excitement of an upcoming holiday. It is unnerving to wake to Isaac at two o clock in the morning standing over you centimeters from your face greeting you in a loud but low voice, "Good morning."
The sleep deprivation thing is not fun. It is one of the most difficult things about having a child with special needs. It makes daily life difficult. Don't some use sleep deprivation as a method of torture? It makes travel almost impossible. We have to block all exits with a suitcase which he will hopefully trip over so that we may wake up and prevent him from leaving the hotel room. We have been know to sleep in shifts which only half works. The trek home takes Olympian effort. Imagine staying up all night for days on end and then having to drive back home. Coffee is indeed a great friend.
Thank you for reading...for taking a moment to see...for extending grace....for loving us....
Excuse me friends while I go try for a nap...
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