Perfectly Quirky

Raising a Person with Autism

Month: March, 2013

Holidays, Family Gatherings and Autism

Ah, Easter is coming! Easter is easily one of my favorite holidays. I come from a large Italian family and every year, we all get together at my aunt’s house to celebrate and spend some time with each other. The weather is usually beginning to break and it is just a nice time all around.

This is S’s 3rd Easter.

After this past Christmas, my expectations for this holiday are more realistic. I do not expect S to be excited for his Easter basket. I do not expect him to be excited to hunt for eggs (though, I will still give him the chance) and I do not expect him to be excited to go and do all of the typical Easter fare that most kids look forward to. There certainly will be no church.

And this year, I have some anxiety about visiting family. For starters, only two people in the family know of S’s diagnosis. And, while a few months ago, we decided to no longer keep S’s autism private, since then, we have only told one cousin. He asked.

As S gets older, his autism is a bit more obvious, and his ability to transition is getting more difficult. You may remember my previous post about visiting friends and family during a party; it was a rough start to say the least.

And so, Easter is tomorrow and S will have to walk into a house full of people… a house he has not been to since last Easter. No doubt this may likely be a repeat of the last time.  And if S does have the inevitable meltdown, there will be no more blaming it on a skipped nap or a long car ride. I’m not sure how it will be received. I expect a good bit of denial. A good bit of hearing how ‘normal he looks’ or how we need to get another opinion. Who knows, maybe they will surprise me and just ask a few questions and move about with the day. If I’m lucky, maybe said cousin already prepped the gang. Maybe I should’ve.

So folks, I shall take a deep breath and lift a large glass this year. Wish us luck! I will be sure to report back!


What a Difference a Day Can Make

Just yesterday, I blogged about S and his ‘off day’ the day prior. Every transition was difficult and his mood was sour. Then, yesterday, it was like a switch had been flicked and a happy, easy going boy rose from his bed.

Breakfast was easy. Getting dressed was stress free. We painted easter eggs. We read stories. We went for a walk. We saw birds in a bush and talked about them. We had a peaceful lunch, in a restaurant, with a friend… for an hour. We made dinner. We went for an evening stroll to the peeeepound. And, finally, we had a somewhat stress-free bedtime.

Yesterday was one of those days that was how I always pictured parenting a two year old would be. Fun with art. Fun with walks. Relating to each other throughout the day. Our little genius even told us that “P is for pour. K is for quack. S is for sailboat. K is for kite, and crock pot and crocks.” (Seriously, I have never connected these sounds for him before. These were not scripted statements… that makes him a genius, right?)

Either way, it is interesting what a difference a day can make. Most days are not as difficult as the day before, and very few are as sweet as yesterday. It sure is nice to have those good days though; and I know one thing, I will never take one for granted.

Full Moon and Autism: Is There a Connection?

Now, I don’t want to sound a little crazy, but I am really starting to wonder if the moon cycle plays a role in my son’s all around behavior and ability to function at his best. Sometime last summer, when S’s new teacher started, I remember complaining about S having a rough few days. Her reply? “Well, it is a full moon.” I sort of laughed, as I thought she was joking. She wasn’t laughing though, and she told me that in her many years as a teacher, she has become convinced that the moon’s cycle has a strong effect on children with ASD and those with ADHD.

And so, as months would go by, I would notice that on days where S really seemed to be having a bad day, there would be a big white ball in the sky. He tends to have a harder time transitioning, a more difficult time following directions, a shorter attention span, difficulty finishing tasks and more erratic sleep patterns.

Apparently, unbenounced to me, yesterday was a full moon. The fun started first thing in the morning. There was whining, crying, refusing to eat. Then, he cried at putting on his coat. He had a hard time transitioning from the house to the car, from the car to school, and from the school building into his classroom. By the time we hit the classroom door, he was done. He had been awake for about 2 hours and he was DONE. Luckily, with some help from his teachers, he did make it into class- though, he didn’t do much participating. He did not sit for story time, or for his favorite- art. He threw a few tantrums in the 90 mins we were there.

But the kicker?.. S wasn’t the only one with an off day.

Only ten minutes we got settled, another little girl came in- she had so much trouble transitioning, that she had to be restrained, by a teacher, for her safety (In a deep hug sort of way- she was flailing her body about).

Once things settled, I jokingly asked “is it a full moon?” to which the entire room replied “yes” in the most exasperated voice. It seems everyone else had put this connection together long ago. And sure enough, I checked the moon cycle, and here we are… a full moon.

There is also one little boy in the class who I have NEVER heard speak. We have been in class with him since October and I have never heard him utter a word. He is also so anxious, that he appears to be velcroed to his mother. Yesterday, he was off and about, playing with the other kids and chatting about his activities. I was floored.

And I can’t help but wonder if there is a connection. Can the moon really have an affect on our children with ASD? I mean, it does control the tides and a woman’s monthly cycle. It really isn’t that far fetched.

After we left school, we went through a series of additional tricky transitions that left me exhausted and had S in a foul mood. At this point, I updated my Facebook status to “Apparently, there is a full moon. Shocking”. And you know what? The people who “liked” this status?… Parents of special needs kids.

So, I decided to do some googling when we got settled at home, and I found that I am far from the only one who suspects a connection. And, while there is no evidence to support this theory, there are certainly a lot of families around the world that see a connection. I know I will certainly be paying close attention. One thing is for sure, I know that the moon cycle will have an affect on my supply of wine.

Autism and Hygiene: Fun Times with Stinky

This was a post that I had intended to write about a month ago. I am pleased to say that our struggles with S’s hygiene have, for the most part, gone away. I still feel that it is an important topic to discuss though, as many of S’s friends on the spectrum have similar issues.

S has always loved the tub, but sometime last fall he began to become very stressed at hair washing. I mean, he usually cried a bit at the hair washing/rinsing portion of bath time, but nothing alarming. You know, your typical toddler ‘I don’t want water poured on my head’ kind of deal. No biggie. We just washed it. But then, then it turned into panic. He began to develop such a great anxiety around hair washing, they he became scared of the tub, and soon- the entire bathroom.  So, sometime in last September, we stopped washing his hair.

Now, before you get all grossed out and call CPS on our family, allow me to explain. We were able to compromise by taking a soapy wash cloth and wiping his head, and then a clean wash cloth and wiping away the soap. We didn’t do this every bath- but once or twice a week. Was it a good scalp scrubbing? No. Did his hair feel clean and smell nice? Yes.  And while we were not thrilled with this method, it got the job done and we decided to pick our battles.

Enter February. For some unknown reason, S developed a fear regarding the bath. We don’t know why, but all of the sudden he was terrified of the tub. I’m not talking about just crying he didn’t want a bath- I’m talking about shaking when walking past the bathroom because he was so scared. It was so bad, he didn’t want me to shower or bathe the dog. Other hygiene issues followed- teeth brushing, hair combing, finger nail clipping, etc.

We consulted OT, and she suspected it was possibly sensory related and were given all sorts of things to try. We spent the better part of two weeks trying to get S comfy again with the tub. We washed dolls (he protested this) , played with water while in our clothes on the outside of the tub- etc. And while it was progress getting him into the bathroom, we could not get him into the tub.

Then, S got really, really sick. It was so sad. He was vomiting for 4 straight days and did not eat for a full 5. (the resulting issues with food will be another post.) Anyway, over the course of this time, S had not bathed in two weeks, and had now spent a week puking on himself and in his hair. We had no choice. We HAD to bathe him. OT suggested that this might be a quick ‘reset’ to the bathing issues. That since he was so sick, and so weak, that he might not have the energy to fight the bath.

So, in the bath he went. It was awful. He screamed, and cried and shook. He clung to me for what felt like forever when I finally removed him from the tub. He was so clean though and for the first time since September of last year, his hair had been washed.

It did NOT reset. He still hated the bath.

Finally, about a week later I found bath bubbles with a popular Disney theme on it that he loves. Turns out, some $4.99 bubbles were just what he needed to get over the hump. He took about another week of slowing introducing the bath again. But, he really wanted those bubbles. He now had something to work towards. It took a while, but he finally got up the nerve to get back in the tub. And with the return of baths, returned teeth brushing and nail clipping. We are still working on hair combing and *sigh* his hair has not been washed since February.  We still are not able to wash him with a wash cloth, but, my boy is clean (ish) and happy in the tub. And you know what?, I’ll take what I can get.


Typical Tantrums vs. Autism Meltdowns: Why They are NOT the Same

There has been a bit of a break since the last time I blogged. I had lots of things that I wanted to share… about S and hygiene, our sleeping woes, our successful trip to a birthday party, etc. But, S got very, very sick with a stomach flu a few weeks ago and it all fell to into the background.

What is currently in the forefront of my mind is our adventures in signing S up for gymnastics.

S is a sensory seeking child. He bounces. He jumps. He hops. He crashes into things and people. ALL. THE. TIME. He doesn’t stop moving from the time he wakes until about an hour or two after I put him to bed. Yes, you read that correctly- even in bed, he is jumping and thrashing and flailing around like a fish out of water. It is exhausting.

So, signing him up for gymnastics seemed like a logical thing to do. I was excited to see that the only class we were able to attend was in the evening and I hoped that for at least that one night a week, S would receive enough sensory input to help him fall asleep faster. Open enrollment for gymnastics was only held on one morning and unfortunately, I did not have a sitter, so S had to come with me. I already had anxiety about having S enter a building with people and then having to wait in line for a few minutes to sign up. Little did I know…

When we arrived 5 mins after enrollment opened, the line was already about a quarter of a mile long. No, I am NOT exaggerating. It was insane. It wrapped around the gymnastics room and two indoor soccer fields. As an added sensory bonus, there were TWO soccer games currently in play. Balls were hitting the barrier next to where we stood and S simply could not handle the entire situation. He was like a pinball in a pinball machine. Bouncing off the walls (literally), flailing on the floor, crying, thrashing, running away, pulling my hair, screaming, jumping, knocking into people. The list goes on. Luckily, we were in line behind another mother whose 6 year old daughter was on the spectrum, and another lady who was a special educator. They totally ‘got it’ and there was no judgement on my parenting skills from those folks.

You see, all too often, when I share S’s struggles with his autism, and my struggles in dealing with them, well meaning friends and family say “that would be hard for any child” or “all children do that”. If I were to report back this incident to other parents of typical children, our struggles would no doubt be discounted because one time their kid threw a tantrum at the mall when they had to wait in a line at checkout. But you know what? Out of what was easily over 70 children in this long line, my child was the ONLY one bouncing off the walls and out of control. Sure, other kids were whining, and fidgety. Some fussed and I heard a few “can we go now?’s” in the whiniest voice possible. Out of all of those kids, mine was the only one who lost control, and he lost it within the first 3 minutes inside the building. We had not even gotten to our place in line before the meltdown began. The mom in front of me told me it was the same way for her when her daughter was my son’s age. She said that now, her daughter just ‘shuts down’ in these situations. I looked at the little girl, and she just faced the wall and seemed to avoid all of the other people.

Let me tell you something, a typical tantrum and an autism meltdown are NOT the same. Until you have experienced both, you have no idea. I think that in most cases, a typical tantrum is when a child is upset because something did not go their way, or they are over-tired, or they are just ‘done’. They are too young to know how to process their feelings or verbalize their frustration- so they tantrum. S has these from time to time- like when I took away his lollipop, or when he wants to go to the playground at 6 am and I say no.  An autism melt down happens because these children simply can’t handle everyday, routine tasks- especially if those tasks fall outside of their normal routine. They become unreachable… it seems, they even have trouble reaching themselves. It is sad to watch your child disappear into themselves and lose control of their actions. And it is infuriating when you get those looks from other parents who think you’ve simply lost control of your spoiled child.

This was not a case of my child being bored while waiting in line, and wanting to go do something more fun. This was a situation where my son simply did not possess the ability to handle the social and sensory situation involved in signing up for gymnastics. This happens at birthday parties, visiting friends’ houses, play dates and the like. It is just too much for him.

It took two days for us to recover from the 30 minute wait. Does it take your typical kid two full days to recover from waiting in line for 30 mins? No? I didn’t think so. And you know what?.. we didn’t even get into the class. It was full by the time we got to the front of the line. I thought the mom in front of me was going to start crying for me. She knew. She got it 1000x over. I didn’t even make it to the car before I broke down in the deepest sob I have had since S’s diagnosis.

So the next time your mommy friend with autism is overwhelmed by an autism meltdown, don’t say that you understand, because your typical kids ‘does that too’ or try to reassure her that it is normal, because “all children do that”; because quite frankly, that’s just not true . In fact, here is a list of 50 things you should never say to an autism parent. Numbers 5, 12, 22 and 30 are my personal favorites. I would also like to add “you are too rigid with his nap and schedule”. Yes, yes I am; and for a damn good reason.