Enough of the Sleepless Nights, Already

C sitting on the couch after another restless night

Autism, Apnea, or Meds... Oh my

C had a doctor's appointment Friday. He has never slept well. We spend our nights waking in the middle of the night, questioning whether we should try to coerce him back to sleep, or let him figure it out on his own. Then we spend the rest of the night angry at ourselves for the decision we made.
Engaging C, in the middle of the night makes him think that it is indeed morning time. Time to gather his "friends" head downstairs, watch a cartoon, and eat breakfast. Going back to bed is simply not an option.
To leave him alone, means spending the evening with one eye open, one ear diligently waiting for his voice to come barreling down the stairs, or worse even, the dreaded silence.

I know that many children with Autism have difficulty differentiating between night and day. I have heard stories of children waking up in the middle of the night, just like C, and feel as though because they are awake, it must mean the start to a new day. I have heard that sometimes seizure activity can cause sleeplessness, sleep apnea could be another cause, lower melatonin levels... There are an abundance of reasons, but what do you do when your child doesn't have the means to explain to you why they are so restless?

So we are on the hunt for a full night's sleep. A was not a good sleeper, and had terrible asthma. We spent his first 4 years of life waking in the middle of the night to administer albuterol  treatments. Then we had O, who didn't sleep through the night until he was three, but in the meantime, we had C when O turned 2... leaving us sleepless for the last 11 years. We are exhausted, we survive on caffeine, and we are ready to turn this corner in our life.

When you have a child with special needs, it seems as though your days become consumed with research, hypotheses, and in turn, the commitment to prove the theory. In our case, the theory becomes harder to prove, as we are searching through an abundance of information, seemingly because everyone is looking for answers to the rise in Autism, leaving many contradicting research options, and we have a child who has words, but rarely gives us insight into his sweet little brain. We have to rely on our past theory failures to guide us toward our new theories.

When we first received the diagnosis, it seemed that every day we had an appointment with this specialist or that. We learned a lot about Autism in general, but had very few immediate and insightful findings specific to C. Our greatest accomplishment in all of the pricks, prods, and heartbreaking exams, assessments and tests, was finding that C has a wheat and egg intolerance. We, in a way, lost hope in finding answers and decided to focus on bettering C's life, short and long term.

Now we need answers. We are revisiting all of the specialists, re-administering many of the tests, and praying that rather than getting the generic and not useful answer of "it is because of his Autism..." we receive, here is the problem, and here is a potential solution.

We have felt that medication, unless C is unable to function without it, and unless we have exhausted all other options, is not something we want to pursue. Even though it has been 2 1/2 years since the diagnosis, we feel we are still new to... well everything. C is making incredible progress. He has made friends in school, has gone from one word demands, to 2 and 3 sentence phrases, that are relevant to what is going on around him. He is academically on par with his peers (though his fine and gross motor skills are still about a year behind), and he is happy. Medication, right now, seems to be something we should continue to push to the side... BUT, then there is the matter of sleepless nights, leading us to restless days, and then a greater potential for meltdowns, obstinate behavior, and further difficulty leading him back on track.

SO... back to the doctor's we go, starting with another visit to the ENT. We are going to check his adenoids to ensure that they are not enlarged, leading to sleep apnea. We are going to have his hearing checked again (purely out of my curiosity... We had it tested before, but because he was non-verbal it was rather difficult to get an accurate reading), we are going to research his lack of smell (the child has never indicated a foul or good scent, weird right?), and we are going to see if his sinuses are enlarged.

If we have no answers that make sense for his restless nights from the ENT, then we will move on to a Behavioral Pediatrician. This is where we may receive the "it is because of his Autism" answer. The pediatrician alluded to his slew of vocabulary, relevant or irrelevant, and his need to vocalize it. If he is unable to stop his brain from telling his voice to speak during the day, perhaps his brain is in overdrive at night as well. Perhaps he needs a means to help his brain settle so that he can rest peacefully at night.

We are hoping for answers from the ENT. For once, we would like a cut and dry answer and "fix". In the meantime, if you happen to be up between 2 and 3am, think of us, as we are up as well.