Perfectly Quirky

Raising a Person with Autism

Month: January, 2013

Sleep and Autism: Can These Words be Used Together… ever?

Well, it is 5:11 am. I’ve been up since 4 am. Why? Oh, well that’s because I go to sleep with my son at 9 pm. ugh.

With the exception of a 7 month period, S has never been a great sleeper. In his infancy he just had to be ON me in order to fall asleep… and stay asleep. I spent pretty much 7 straight weeks with him in my arms. No complaints though…  I loved every second of those newborn snuggles, and I wouldn’t trade them for the world. Around 3 months old, S started sleeping in a crib, but waking 2 or 3 times a night to nurse. He was easy to put back down, just rock and nurse and he would sleep a few more hours. Somewhere around 9 months, he started night nursing more, so we began co-sleeping. This lasted until around 22 months.

Somewhere around 22 months, S magically started allowing me to just lay him down for bed. It was great. We did bath, brushing his teeth, jammies, prayers, lights out and I would tuck him in and wouldn’t see him until morning. We could hear him on the monitor, babbling and we could see him playing with his nightlight, but he was still going to sleep on his own… even if it took 45 mins to 2 hours to fall asleep. Same thing for nap time. It was great… he laid down without a fuss and slept beautifully for about 7 months. Oh what a great 7 months those where! For the first time in 5 solid years… I was getting 8 restful hours of sleep a night AND an hour to myself before bed.

Pure. Fucking. Bliss.

Then, the devil known as ‘winter break’ arrived this year and the lapse in school sent S on a fantastically fun backslide. The biggest slide? Sleeping.

I now have to lay down with him to get him to sleep. And, if that wasn’t enough, it can sometimes take him up to two hours to fall asleep. We have tried adjusting his nap time and bed time, but to no avail. I finally contacted his early intervention team, and they sent out an OT for a follow up consult for this, along with many of his sensory issues.

The OT thinks that part of S’s sleep issues might be sensory. For instance, we have to be in a tight embrace for him to fall asleep. For his sleep issues, and other sensory issues, his team has now added a weekly OT to his service plan.

Now, our bedtime routine involves sensory brushes, jumping and joint compressions. I have to give him vigorous rubs with a towel after his bath and rub his skin while getting him dressed.

It still takes him at least 45 mins to fall asleep, and still sometimes up to 2 hours. And honestly, this is taking a VERY big toll on me.

I used to live for nap time and bed time. After all, I’m with S all day and quite frankly, mommy needs some down time. Not to mention, I am trying to run a business… I need those times for editing, blogging and client emails. I won’t even get started on the fact that for the last 5 years, I survived on 2-4 hours a sleep a night while I built my business… its my turn now… mommy needs me time.

Now, when I lay down with S at his early bedtime, *I* end up falling asleep with him… often before he falls asleep… and then I wake up usually around 3 or 4 and am unable to fall back asleep. So then, by the time bed time rolls around again the next night, I’m exhausted, and I fall asleep again… a viscously repeating cycle.

I’m tired. I’m cranky. I’m gaining weight. I’m exhausted. Did I mention that I’m cranky? And what’s worse? I’m becoming bitter. Bitter at S for taking away my down time and my long awaited good night’s sleep. And bitter at my husband for having homework to do and not being able to put S down himself.  How ridiculous is that? How can you be bitter at a sweet two year old and a husband that would walk to the end of the earth for you?

I’m trying to enjoy these late night snuggles… because, well, I know these sweet years are fleeting. Soon, S will no longer need his mommy like he does now and I know I will look back on these days and wish for one more snuggle.  But, this doesn’t change the fact that I am human… and humans require proper sleep and at least one opportunity a day to pee alone.

S’s OT has suggested melatonin. Now, I know that this is a naturally occurring substance in the brain and that giving this would just be a supplement. But, I am a pretty ‘natural’ person and I’m not big on pills and the like. I won’t lie though, this sounds rather tempting. But, for whatever reason, I feel like ‘medicating’ my child will make me a failure of a mother… even though I know that doesn’t make any sense.

I guess I might be more on board if S’s sleep issues seemed to be affecting him. But they don’t seem to be. He wakes up rested and happy from both nap and night time sleep. But it is affecting me. Deeply.

Either way, we can’t go on like this. I’m getting too old to run on coffee alone. So, now I have one more thing to research and worry about and I’m too exhausted to even think about it.




When did my life become a list of acronyms? ugh.

Public Autism Meltdowns: When People Just Don’t “Get It”

As I mentioned in previous posts, we have not mentioned to many people that our son has autism. While we are no longer keeping this information so close to the vest, before we had decided to ‘go public’ only a handful of close family and friends were aware of S’s diagnosis. One of those friends is a good friend of mine who has two small children, about 18 months younger than our son. While she was aware of S’s autism, and would often listen to me vent about our struggles, I could tell that she never really ‘got it’. Most of the time that we hung out, it was in a private setting and S was usually fairly comfortable around her. Being that her children are much younger, S’s delays didn’t seem as apparent to her as they were to me. She would often say things like “don’t most kids do that?” and “all kids do those things”. She was always super supportive, but I could tell that she never really ‘got it’ .

A few weeks ago, her children celebrated their first birthday, and we were invited to the party at their house. Daddy J was a bit under the weather, so S and I decided to attend by ourselves. S has been to my friend’s house many times; however, this time it was FULL of people he didn’t know. We had not been in the door for 5 seconds before the high-pitched shrieking and screaming started. Then, the hitting and kicking and throwing of objects. Within less than 5 minutes of our arrival, we were in a full-blown autism meltdown. It was simply too much for him to handle. We had not yet disclosed S’s autism and so no one else at the house knew about S’s diagnosis. People were trying not to stare, but it was hard to not look as our son ran through the house screaming. I tried pulling S into one of the empty rooms to calm him down, but to no avail.

At this point, I had broken out in a complete sweat, had a headache and had no idea what to do. Our friend, the gracious hostess that she is, led us upstairs to her children’s room to give us some space and privacy. It took about 20 mins to a half an hour for S to regain composure. Had we not driven close to an hour to get there, I would’ve just turned back and taken S home, but I knew now was not the time to strap him in a car seat for another hour.

Eventually, we were able to join the rest of the guests downstairs. However, while the other children S’s age played blocks and with the other toys, S was obsessed with the door handle. He kept jumping on one stair for so long that people stopped trying to use it. In the end, S ended up having a pretty nice time, and actually didn’t want to leave when it was time to go.

The next night, my friend texted me to say what a great mom she thinks I am; which was certainly nice to hear after the episode at her house. After-all, I felt like ‘that mom’ with the out of control kid.

What is for sure, is my friend finally ‘got it’.

Coming Out: Speaking Openly About Autism Diagnosis

As you may remember, a few months back I wrote this blog post about our family’s choices in keeping our son’s autism diagnosis close to the vest. Over the last month or so, my husband had been doing some reading and we had been discussing the possibility of  becoming more open about S’s diagnosis. He seemed more on board than me, as I was still worried about how people would perceive S and if he would be treated differently. As usual, life got busy and the subject was dropped for a while.

Then, last week, I accidentally outed my son’s autism on Facebook.

I am a member of a few private Facebook groups for families with autistic children; and, looking to broaden my network, I joined another group, that was apparently, very public. And so, my posting was blasted into everyone’s newsfeed without my knowledge. Joy.

A family friend saw the posting (which had included a little bit about how we had not yet told any family) and she decided to call me right away to let me know what I was posting was public. She handled it so nicely and assured me hat she wouldn’t say anything to anyone; that our secret was safe with her.

After hanging up with her, something just didn’t sit right about the conversation. I felt just awful. Not so much that I had outed my son on a very public forum, but that our family friend had used the word ‘secret’ in reference to my son. Don’t get me wrong, our family friend handled things just wonderfully and was very respectful of our family’s wishes. It was just that the word “secret”, to me, conotes shame and something that needs to be hidden or kept away. That is certainly not how I feel about S.

And so, Daddy J and I re-opened the conversation about S’s autism and whether or not this information should be kept so close. In the end, we decided that since S is just perfect the way he is… and his autism is a pretty big part of him… and that is nothing to be ashamed of, that there was no reason to keep this information from becoming public. Daddy J and I felt that keeping his autism hidden from family and friends might later make S feel that it is something to be ashamed of, and we would never want him to feel that way. And perhaps, if more people were aware of autism, it would be more openly accepted. After-all, people generally only fear the unknown.

Making the decision to no longer keep autism as our ‘family secret’ has been so liberating. We decided to not make a big public announcement or anything, because really, it just isn’t that big of a deal. In fact, since deciding to become open, I have only told one person… S’s hairdresser. After-all, autism is just a part of who S is. He has blonde hair, blue eyes, autism and an infectious smile.

It’s funny, really, how far we have come in our autism journey.  This time one year ago, I was hoping and praying that our son would not be diagnosed with autism. And, when he was, it was like our world came to a crashing halt. I would’ve done practically anything to remove autism from our lives. Autism seemed like the most repulsive thing in the world and I did not want my son to have it. And now, I can honestly say I don’t know if I would give autism back if I could. Sure, we have our fair share of struggles, and will have many more. But, our son is a really awesome little dude, and I wouldn’t want to change anything about him… not his blue eyes, his blonde hair or his autism.

He is perfect, just the way he is… and there is no reason to keep that a secret.

New Year, New Resolutions

Well, a new year is upon us! 2012 brought about many changes for our family… Our son, S, was diagnosed with autism before the age of two; I left one of my two full-time jobs to be better able to address his needs; my sister, and best friend, moved to the USVIs, and my husband and I decided to walk away from our home. To say that 2012 was a big year, with many changes and adjustments, is an understatement.

But, I look forward to 2013!

I look forward to being more comfortable and confident with S’s diagnosis. I look forward to starting our life in our new home, I look forward to more wonderful days spent with our son, and with any luck, I look forward to visiting my sister in paradise!

With each new year, new resolutions are made, yet few are often kept. This year; however, I plan to follow through as my only resolutions are to enjoy my son, right where he is… period; and to get more involved in our local autism community.

Bring it on 2013!!