Friday, February 28, 2014

Finally getting some zzzz's....

Many children with autism have sleep issues. This is not headline news. Some have trouble getting to sleep, others staying asleep, and some who are just up all night! Both big and little pants have had difficulty with sleep. I liken it to having a newborn baby for 10 years since we were getting up every 2-3 hours between the two of them before we found something that worked! It has only been in the last year that I finally think we have a handle on things. Now what I consider successful is vastly different from what I would expect from a child without autism, but hey I will take what I can get. Just this morning, little pants woke up wanting me to do a 100 piece puzzle with her at 4 am. When I heard her yelling, I looked at the clock and thought, "sweet, she slept all night again." 4 am a positive thing- really! I must be crazy right? Digging a little deeper though, this is a huge success. She used to wake up anywhere from 3-5 times per night and sometimes never even go back to sleep. This would happen at least 4-5 times a week. She wasn't always happy either, which then leads to her yelling and howling that is just loud enough to wake up every other person in our house. We tried different medications and she had harsh side effects. We tried melatonin, which would work for a while, but it was as though she built some kind of odd immunity to it and then it wouldn't work anymore. We also tried to just wear her out every day.  None of these things worked. We saw a few doctors and although they had good suggestions, we couldn't crack the code. We finally got a referral to a pediatric sleep specialist and he had me keep a sleep journal, which I had done before. I am a journaling master. With a non verbal child you become a keen observer of everything from food to poop to behaviors since this is the only way you can really get where they are at and what patterns develop. We kept this journal for 6 weeks and then returned for another visit. His advice at this point is almost hard to admit. He suggested we just keep her up as late as possible and try to consolidate her sleep. Some kids with autism just don't need to sleep as much and little pants seems to fit that bill. Sheesh- why didn't I think of that! I wrote my masters paper on sleep disorders in children with autism. In fact, I got much of my writing done while I was up all night entertaining my own autism angels. Oh boy! My mom brain just could not wrap my mind around allowing a 7 year old to stay up until 10 or 11 pm, especially when she would be tired around 8 pm. That would make me a bad mom right? In almost every one of the books published on how to raise children, they all say getting enough sleep and having a consistent bedtime is a benchmark for success. A 7 year old child certainly shouldn't be up that late, right? Silly me- what the hell am I doing trying to apply these guidelines to my children who have never followed any kind of typical path. Trying to put a square peg into a round hole never works. It was kind of an "a-ha/duh moment" at the same time. With that being said, we went through a few weeks of hell trying to get her to make it 'til 10 or 11 pm. and continued with our sleep journal and by golly she started having some consistent sleep patterns of about 6 hours of sleep per night. I guess if this is all she needs, who am I to argue? She is happier (frankly we all are) and this is our routine. She sleeps well most of the time although she is a consistently early riser. About one time a week she has a rough night, but since we are a little more well rested it is easier to manage. This process took us years to figure out and it has been working for about 8 months. As for big pants, well he didn't sleep well either. Now he takes 1 mg of guanfacine at night and sleeps like an angel, unless of course it a night of little pants howling. That makes us all on edge. We tried melatonin with him too, then guanfacine when he was 7 and it was horrible for him. We tried again a few years later and BINGO! I suspect we may have some trouble as he enters puberty, but since I am finally getting some zzzz's I think I can handle it. Cheers!

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