Sensory Progress | A Whole New World of Fun!

Nothing Without Preparation: Autism and Spontaneity Do Not Mix

It sure has been a while since I have written… I’ve put on a ridiculous amount of weight over the last six months, and I’ve been spending my mornings furiously trying to work it off (9 lbs down!!). So, I haven’t had much time to write. However, lots of big things are coming up within the next few weeks and months, and so I am taking this rest day to get caught up.

Just to give you an idea on what we are up against, within the next few months we will:

1. Move
2. Go on vacation to the Ocean
3. Determine S’s eligibility for an IEP
4. Start two sport activities with other children
5. Have two new children start in his current class
6. Celebrate S’s 3rd birthday
7. Possibly switch all school and therapy programs or lose all services all together
8. Possibly place S, alone, on a school bus to go to school.

That is quite the list for any family with typical children; for children who need a great deal of preparation just to walk in someone’s home, this is a massive list. This list sends my heart beating out of control. This list has sent me to the liquor store more than once. We are in a major prepping mode. We are preparing for battle.

I’ve started easy… preparing for our trip to the ocean. Heck, at least this change is fun and is something that I am looking forward to, sort of. For most families, prepping for this might involve telling your child that you plan to take a trip to the ocean, maybe reading a story about going to the beach and then simply packing your shit and heading out for a great time.

Well, it ain’t that kind of party at our house. I’ve been prepping for weeks.

I learned our lesson the last two years… S and the beach- namely sand- are NOT a good combo. The ocean is such a huge sensory experience- for anyone really. I think that is why so many people are drawn to the ocean. However, for kids on the spectrum, especially those with sensory issues, it can be a sensory nightmare.

So, I started with a mini sandbox in the back yard. It took over two hours, across two separate attempts, to get S to put his feet in the sand. This was a MAJOR breakthrough for someone with sensory issues with his feet. Had I just taken him to the beach, with its seemingly endless land of sand, there is NO way he would’ve adjusted. That’s what happened the last two years. He just shut down and then melted down. By taking it slow in our yard, with a small amount, on his time, we were able to get him comfortable with sand. (In fairness, I even prepped him for the sandbox- watching videos, talking about it and buying him special  ‘sand shoes’ (water shoes) before going to get our sandbox).

Yes folks, I had to prepare him to start preparing him. 

We then moved him to a big sandbox at the park. We went with a typical friend, so he could see how much fun it is with someone he knows and trusts. I had then planned to take him on a mini trip to one of the smaller beaches in the area, but they don’t open for another two weeks. So now, we are watching videos on YouTube. (I LOVE YouTube- its like moving social stories for everything in life.) We were able to find one of the beach we will be visiting- so he can see the actual boardwalk, ocean, landscape, etc. I even purchased, and set up, a beach tent in our living room so he could pretend being at the beach and be able to recognize something familiar when we finally get there.

He seems excited… so I hope he enjoys it… we spent WAY too much time in our room last year because it was just too much for him. With all of this preparation, I certainly hope for a few hours by the waves.

I have been preparing for this trip for a few weeks now (we don’t go until the end of the month) and I started preparing him for soccer this week as well (he starts that next month). And, with our great big list above, I have so many other things to prepare him for… much bigger things. Most kids just start soccer, or go on vacation… but not ASD kids. They need to know exactly what they are walking into at all times… and there is still no guarantee of success. Its overwhelming really, and something I hope he grows out of in time. But for now, we will watch videos of people we don’t know playing by the ocean.

And hopefully, if all of this hard work pays off, we will be able to make our own beach videos soon.

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.

Another Birthday Party Post? Yes, Yes It Is…

And Mommy needs a drink.

I had planned to post this week about our recent troubles involving hygiene, but amazingly, the fact that our child is snubbing all things hygiene related is not the most distressing thing in our lives. Stay tuned next week for fun with  stinky.

Yesterday, we attended someone’s 2nd birthday party… in their home. (I’m still twitching.)

While one would think that taking your two and a half year old to someone’s birthday party sounds like a lot of fun, I couldn’t help but think back to the last time we went to someone’s home for a party. You might remember those fun times from this post.

We had never been to this particular friend’s house before, so I felt it extra prudent to prepare S as much as possible before we went. I looked up social stories, about going to a birthday party, online. (I found, and used, some great ones here.) We talked about how we would go to someone’s house and that there would be lots of people there. I showed him the pictures of kids and we sang happy birthday and talked about how the birthday boy would blow out his candles. I knew the mom was making cupcakes, so I told S how he could eat a cupcake just like The Very Hungry Caterpillar. He seemed excited and eager to go.

Then, I drew pictures. Yes, *I* drew pictures. (I will try to post it later for your entertainment.) S knew exactly what they were. I drew a house and inside the house were a bunch of people. Then, I drew Mommy and S going into the house with a bunch of people. I drew snacks, toys and a cupcake with candles. He seemed stoked.

Before we left, I took him out to play so that he could run off some steam and get in some jumps. Once we arrived at the party, I took out my drawing again and we went over about the house, the people, the kids, the toys, the snacks. He was pumped. He was ready to go. He wanted his “pack pack” (back pack), no need for his skateboard… he was going to a party. He was excited. I thought, “I did it! He is going to have fun. This is going to be great”.

Then, we entered the house. Well, not entirely.

We quite literally had not gotten completely in the door… like, the door was still being held open for us to finish entering, when all hell broke loose. Kicking, screaming, screeching. The person who answered the door was finally able to get it closed before S could start scratching and banging on it screaming “Go back outside!!!!!!”.

I knew ONE person at this party. ONE. I had no time to introduce myself before I had to ask for a quiet place to retreat and we were shown the steps to the basement family room. Apparently, no amount of preparation was sufficient to take S to a kid’s birthday party. None. I knew that he is capable of having fun though, so I wanted to give him the chance. I knew that if we could just get past this initial outburst, he could have a good time.

We spent about 30 mins on the basement stairwell… with him screaming.  When I finally got him to calm down, we spent another 15 mins with me singing songs on the steps. He was having a seemingly fine time, cowered in the corner, pressed against the door, listening to the party on the other side, while having mommy sing him songs. I even had to sing “Happy Birthday” to the birthday boy. Yes folks, we sat on steps, behind a closed door, and sang “Happy Birthday”. Every time I would try to coax him out, he would insist “Stay back here”.

After about 45 mins of sitting in this stairwell, I managed to open the door. He ran immediately out and across the hall to the bathroom, and held up in there screaming for a few minutes.

Finally, roughly an hour after our arrival, I admit defeat. I pack up my screaming child, said goodbye to the people we had yet to meet, thanked our hostess for the invite, apologized for the outburst, and left.

No sooner did the door close behind us did S demand “GO BACK INSIDE PARTY!!!!!!!”.

Not fucking kidding.

And so, back inside we went. We stayed, and he played, for two hours. And then when we left, he cried because he didn’t want to go. I have no idea what to make of this.

I know this though… It was everything in me to not bust into tears the entire time we were there. My eyes stung for hours. This wasn’t like the bouncy house, where S was having a great time, just in his own little way. This was roughly an hour of a panicked meltdown that my child had to go through in order to have fun at a birthday party. Why should my kid have to go through this? What can I do to make this easier for him? And, why don’t they serve hard drinks at kid’s birthday parties?

I sat and watched all of the other children play and have a great time- they were mostly all much younger than S and the difference in social development was striking. Why does my child have to struggle? It was just so heartbreaking.

It’s not fair. I just wanted to take my ball and go home.

Then, we got home. S went on and on about how much fun he had at the birthday party. He recounted all of the fun things he did and seemed oblivious to the hour long stand-off on the stairwell. I’m so glad that he only seems to remember the fun he had; I just wish that the fun was the only part of the story. When it was time for bed, we went through the bath time refusal and I put my stinky, sweaty, haven’t-washed-his-hair-since-September, kid to bed. And, as I held him down so that he could stop flopping around like a fish out of water, he rambled about the party, and the people, and the cupcakes and then calmed while I cried and he drifted off to sleep.

We have two more birthday parties coming up in the next few weeks. I plan to take him, since after all, he has a blast once he warms up. It’s just getting him warm that worries me. What can I do? Why does it have to be this hard? Why can’t my little boy just eat cupcakes and play games and have fun? Why does he have to go through this and why can’t he tell me what would help him?

I usually try to tie up these posts with what I have learned, or my positive spin on the situation. But honestly, I’m at a loss. My heart breaks for my little man. I know he needs help and I have no idea what to do to help him. So, if anyone else has any positive spins, suggestions or a great lesson that I can take away from this… lay it on me. Because right now, I feel like holding up in a stairwell and crying for an hour; and quite frankly, there has to be a better solution.

Autistic Ramblings: Could it be a Possible Stim?

S was just 7 months when I first seriously considered that he might have autism. I remember the day exactly… the exact moment that it hit me. It was two years today.

Over the past two years, S has had a series of ups and downs… progressions and regressions. The progressions are always celebrated to the max, and the regressions always strike a fear in me that I cannot describe. Overall though, he has made outstanding progress and I often just marvel at how resilient and amazing our little man can be.

Lately though, S has started having some odd verbal behaviors. A speech and language pathologist came and observed him and has decided to add speech consult to his IFSP once a month. I told her about some of his random ‘statements’ he will make. For instance, one day we were on the elevator and a woman (stranger) complemented S on his hat… “I like your hat”. His response? “Need to reboot the apple TV”. WTF? The SLP didn’t seem to concerned about these types of ill placed statements, and simply said that he could be at a loss for an appropriate response, or, he might want to watch TV. Either way, she didn’t seem concerned. (as an aside, he now makes this statement every time we enter this particular elevator- no other elevators, just the one)

However, now these statements have turned to ramblings. It started at night. It used to be that while trying to fall asleep, S would flop and kick and flail and thrash for an hour or two until he fell out. Now, now he rambles.

Then, today, he started rambling during the day and I’m worried he is beginning to regress again. It really ramped up after a 25 minute meltdown he had today. Even my husband was concerned when he saw him. S had a glazed look in his eyes and a far off stare. And, he would just ramble… “kitty cat doesn’t have no tv… doggie goes arp arp… S snuggles blanken goes arp arp”. He also ‘meows’ frequently throughout the day… From the time he wakes up until the time he goes to bed. I would say that he meows for several minutes during each hour, if not more. Sometimes he will not answer questions, like what he wants for breakfast or what he wants to drink, because he is meowing. The meowing has been going on for a few weeks now, but the rambling is new. I’m not sure if this is a form of stimming or not.

I’m not sure what to make of it. It is in this light voice, that is almost a whisper. He sounds dazed, looks distant and makes absolutely no sense. I also noticed that he was using double negatives… which we do not ever use in the house… “kitty  doesn’t have no water”… definitely a speech pattern I have not heard him use before.

Then, as I was changing him for bed, I connected some of the ramblings. We frequently read “The Giving Tree” by Shel Silverstein. Tonight he was rambling “Sorry S, I don’t have any apples… I don’t have leaves… Sorry S, I don’t have a boat”. These are parts of the book, though, we have never interjected our son’s name into the story line… but he apparently has. I’m not sure if I should worry about this or not, but it is hard not to. It seems like just as I begin to feel comfortable with S’s autism, I begin to let my gard down a bit and start to feel our family is somewhat normal, something always pops up to remind me that there is nothing normal about autism.

So, I guess I will bring this up to S’s new SLP this week, and she what she has to say. He starts his weekly OT this week and that could not come at a better time. All of the sudden, he is snubbing baths, teeth brushing and hair combing. My kid is starting to get a little crusty.

In the meantime though, I will just hug him and love him and snuggle him as much as he will let me. Hopefully if I hold on tight enough, he won’t slip away.

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.

 

Stimming: A Puppet Show for One?

When I was a kid, my mom was friends with a woman whose son has autism. Until recently, this child was my only real life example of what autism “looks like”. Looking back, and knowing what I know now, chances are that this child had some additional challenges that extended outside of autism. However, we knew he had autism, and it was obvious… to everyone that encountered him.

Why was it so obvious?.. because out of all of his autistic behaviors, the one that was the most pronounced, the one that made him stand out in every crowd, was the fact that he was almost always flapping his hands in front of his face. It was as if he had two hand-puppets on and he was putting on a puppet show… for himself. Everyone was invited to the viewing, but only he knew the story line. At the time, I just knew that this never-ending puppet show was how he was, pretty much all of the time, and I knew he did it because he was autistic. I now know that this is a self coping mechanism and it is called stimming.

To me, stimming was what autism “looked like”.

When concerns first started to arise that S may have autism, stimming was one of my worst fears. I feared that S would become like the kid I grew up with and that he would be lost in his own world with just his hand puppets flapping in front of him. I worried that a behavior like this would cause my son to stand out and be made fun of and I worried that it would push him deeper into his own world. So, it was much to my relief when S seemed to not develop this behavior.

Until now.

Last week, S started flapping his hands when he is angry or upset. It seems that he no longer takes off his shoes for that sensory release and he has now moved on to hand flapping. Over the past few days, it has progressed and he now also flaps when he is excited. His teacher noticed it yesterday and confirmed that that is what I am seeing. So, now the fear is back. I guess this is just one more uncertainty that we will have to work through. One more thing about autism that I need to accept and hope that I am able to help my son deal with appropriately. And quite frankly, it is one more thing that I will worry about.

Will this behavior progress further?  Will this cause him to stand out and, in turn, be singled out and made fun of? And will that, in turn, cause him to further retreat into himself?

Will he become the ‘puppet show kid’?

It Has Been a Good Week: Sensory Issues Taking a Vacation?

It seems as if some magic autism fairy came last Thursday night and took the bulk of S’s autistic symptoms on a mini-vacation with her. This has proven to be a mini-vacation for us, and I am certainly hoping for an extended stay.

As you may remember, I had recently reported about S’s compulsion with shoes and his constant need for them on, but taking them off in stressful situations. He was also having issues with needing his hands cleaned several times throughout a meal and seemed to have developed an issue with things that dangled… shoe laces, price tags on clothing, stroller straps, etc. Magically, over the last week, these issues seem to be going away or, at the very least, minimized to a manageable level.

You see, last Friday, S woke up and did not demand shoes or even ask for them… for a full 3 hours.

Now, when he requests shoes, it is not a frantic plea as if his world will end without them. It is just a normal request for shoes.

I don’t know what happened, last Thursday night in his sleep, but I know I like it! In the past week, shoes have only come off a handful of times. S is no longer the frantic child removing his shoes and then demanding them right back on before he can finish taking them off. And, in turn, I am no longer the crazy lady frantically adhering to his demands. We have been to the pool… barefoot. Around the house… barefoot. Even in the car… barefoot. My little man has been able to enjoy so many things this week, since his world was not focused on his shoes! I even feel that I have gotten to know him better, now that our focus is more on each other.

At the advice of S’s teacher, when he does take off his shoes, they then have to stay off for an appropriate amount of time. This seems to have an effect! Once, when S began to take his shoes off, I got down on his level and calmly told him that if he took them off, they were going to stay off until we got home (we were at the store) and I asked if he would like to leave them on or take them off. He said “on” and there they stayed until we got home.

He has also ignored his dangling stroller straps, only asks once or twice per meal to have his hands cleaned and is, overall, seeming to have an easier time adjusting to stress. A consultation with an Occupational Therapist is still being scheduled for next week. Sadly, we both feel that these issues may come back (especially since we are selling our house and will be moving in a few months). The OT plans to give me some tips on how to handle this these issues as they arise, so that I am no longer the crazy lady at the store replacing shoes every 5 minutes.

These sensory issues may return, but I do NOT want that cycle to return. I really hope that I can respond more appropriately in the future as to not allow these issues to cycle out of control again. In the meantime, S and I will hopefully continue to enjoy our days without the stress of shoes. Who needs vacation when you can just run barefoot in the house?

Shoes! Shoes! Shoes!: Is this an Autistic Sensory Issue?

“Shoes! Shoes! Shoes!” If I hear this exclamation one more time I *may* crawl out of my skin. For as long as my son has been wearing shoes, he has had quite the affection for them. I think I really first noticed something with shoes around a year of age. Well, I guess that is when the majority of his quirks started to come a bit more in focus. He LOVES wearing shoes. He also loves taking them off and then demanding that they be put right back on. At first, he just wanted them on… ALL. OF. THE. TIME. Bedtime, nap time, dinner time, snuggle time, bath time.

Yes folks, bath time.

Now, I could allow the sleeping in shoes and the snuggling in shoes… but bathing? No, no, you simply cannot wear your shoes in the bath tub. Oh the tantrums we have had over no shoes in the bath tub.

Eventually, the shoe issue moved from wanting them on all of the time, to wanting them on, but taking them off when he is stressed, bored or otherwise unhappy. Have we spent too much time in the car? Shoes must come off! Too long at the grocery store? Goodbye shoes! Did his favorite show just end? Well, better take those shoes off! And so the battle begins. This week, I made the error of purchasing S shoes that have laces. Based on his frantic reaction of absolute panic, you would have thought the laces were going to eat time alive. Lessoned learned.

Here is an average day involving shoes:

S wakes up, happy and babbling. I go into his room to find a happy, smiling boy, arms reached and asking for a hug. We snuggle for maybe a minute or two and then it starts… “shoes! shoes!” as he points in the direction of his shoes. So, we get out of bed and I start to change his diaper. The exclamations get louder and more frantic. He does not want to wait until a diaper change is over, he wants shoes on and he wants them on NOW. Obviously diapers, pants and socks all need to go on before shoes and, as the dressing process progresses, the cries for shoes get more frantic and more desperate. Eventually, we get to shoes and genuine joy and relief washes over both of us. We can now move on with our day.

Only, it doesn’t end there. Not ten minutes later are we sitting to eat breakfast when round two of “shoes! shoes!” begins. You see, if he is stressed during breakfast (maybe it took too long, maybe it’s not what he wanted to eat- you get the picture) he kicks off his shoes. However, since he always wants to have his shoes on, he then immediately cries in a panic (sometimes before he is even finished taking them off) for me to put them back on. It is relentless and exhausting. Refusing to put them on simply sends him into a frantic tantrum and further into the ‘autistic abyss’ and I’m not a fan of watching my child disappear before my eyes. So, I put them on. Only, anywhere from a few hours to as little as a minute later- the shoes are off again and the demands to put them back on have returned. Rinse and repeat about a million times throughout the day.

There have been a few times where I have managed to get him to watch tv, on the couch, sans shoes. All will seem well in the world until he stands. Here, he will immediately drop to the floor, grab his foot while screaming “foot! shoes! foot!” and banging his foot on the floor. He is frantic and sounds panicked- like he is on a sinking ship and the application of shoes is the only thing that will save him and his family from dying a painful death. It is heartbreaking. It is frustrating. It is something I have no idea how to handle.

Early in S’s weekly therapy sessions, I discussed these concerns with his teachers. We have tried slippers, sandals, footy pajamas (this was a freaking disaster) and all sorts of things to get his focus away from shoes. The slippers and the sandals worked for a while, but in the end, it always came back to shoes. At this point, S’s service coordinator has suggested scheduling a consultation with an occupational therapist, in hopes that they can give us a better perspective on how to handle the shoe issue, as well as a few other possible sensory issues that S may have… Long pants? Not gonna happen. Dirty hands? Better have a clean rag handy! Blanket? For snuggles only- don’t bother putting it on. And clothes? Well, just this past week have we gotten him to keep his clothes on all day and night. It’s nice to go to the grocery store without your child screaming “off! off!” while tugging on his pants and shirt.

I guess this is just one of the many added joys of raising a child with autism. The hard part, is figuring out what is just normal toddler behavior and what is the autism. I mean, if not wanting to wear clothes is just a part of S’s normal toddler development, than I have no problem putting my foot down and saying ‘no, you must wear clothes in the living room’. I will deal with the inevitable tantrum to follow. However, if there is some sort of autistic sensory issue that makes wearing clothes incredibly uncomfortable for my child, then no, no, he does not have to wear them while chilling on the couch with his family. So, how do I know which one it is? Where is my magic ball that tells me what my child needs? Or really, why can’t my child tell me what he needs?  Because really, at two years of age, my child should be able to communicate to us more than repeating a word twice in a demanding tone.

Being a parent is hard enough when you are just dealing with the everyday challenges of raising a child. When you toss in autism it becomes that much harder. S is much less verbal than other children his age (though, much more verbal than many autistic children his age- for that I am very thankful). However, because of this, I am less confident in my decisions with what I allow and don’t allow S to do or have. If I knew that a behavior was or was not related to autism, I think I could determine the best reaction and stick to it… but I don’t know.  Communication with S is pretty limited and, as a result, I am always second guessing myself. This makes it harder to be consistent and guess what? Autistic children thrive with consistency. How is that for a double load mommy guilt? Autism really knows how to play its cards.