Perfectly Quirky

Raising a Person with Autism

“It Only Takes One Time for Something to Become a Pattern”

“It Only Takes One Time for Something to Become a Pattern”. This was recently told to me by S’s OT, in response to some recent feeding issues we have been having.

I will back track a bit, so that you can get a better idea of S’s eating habits. From birth, S always ate great. At six months, S started solids and he was a champion eater. We did a modified version of baby led weaning and he took to most new foods, new textures and new flavors favorably. The only ‘baby food’ we ever really served him were those pureed veggie pouches- mainly because they were organic and convenient for travel and keeping in the diaper bag. He not only ate all sorts of things, but he had a taste for health food and would often snub ‘treats’- opting for watermelon over cupcakes, etc. Then, like most kids, he became a toddler and the usual toddler pickiness entered the scene. No biggie. Our pediatrician warned us about this and assured me that he would eat when he was hungry and that as long as he continued to grow, he was fine.

However, a few months ago, I began to notice a pattern. S was slowing dropping past favorites (pizza, spaghetti, grilled cheese, etc) and was seeming to prefer either foods that were dry and crunchy (dry cereal, crackers, pretzels, nuts, etc) or purees (smoothies, those veggie baby food pouches, yoghurt etc). In fact, the only thing he would really eat in between those textures, was a peanut butter and jelly sandwich. It hit me- my child is 2.5 and still eating like a baby- dry cheerios and baby food pouches. I brought this up to his teacher and she confirmed that S’s eating habits were likely regressing and he seemed to be developing a texture preference.

So, for this and a few other sensory reasons, S started occupational therapy to help introduce him to a wider variety of foods. I wasn’t too worried though- while his menu was limited in texture and variety, it was rich in nutrients. Its not like he was living off of chicken nuggets and soda. He ate low sugar, organic cereals and home-made veggie and fruit smoothies. He drank organic soy milk and overall, preferred healthy foods.

Then, S got sick. So sick that he vomited for 4 straight days, while sleeping on the couch, only waking to puke. He did not eat for 5 straight days. When his appetite finally returned, it was just for crackers and pretzels. And I was fine with that- the kid just puked for 4 days- he needed time for his tummy to settle.

But, it was too late. It only took the one sickness, a few days of eating crackers, for a pattern to develop. Now, now he only wants PB&J and cashews. He is snubbing his cereals, his smoothies, his soy milk. His OT has been working with him for several weeks now, and we are making progress. S will now tolerate non-preferred foods on his plate and will even touch them to get him to put them in his ‘all done bowl’. It is so interesting how quickly something can change and become a new pattern. It happened with bath time, with hair washing, with shoes, and now with eating and food preferences.

For now, S is starting to tolerate some of his old foods again- but still snubbing most. Hopefully soon he will regain his pattern of healthy eating, and in the meantime, we will still work with OT to reintroduce his old foods and slip in a few new ones.

And I guess that is one of the crazy things about autism. Kids on the spectrum are very routine oriented. Like most kids, they thrive on consistency and predictability. However, kids on the spectrum tend to become more rigid with the need for these routines. So, it really does only take one time for something to become a pattern, and you never really know what the next thing is going to be. That’s autism for you- every day is a new normal.

Advertisements

What a Difference a Year Can Make: One Year From Autism Diagnosis

I meant to write this post last week, since as of March 29th it has been one year since S received his autism diagnosis. If you like, you can read this post about S’s journey to diagnosis. And while we may not have known that S received his autism diagnosis until May- we knew in our hearts during that meeting in March. (can you say “new car” and “retail therapy” in the same sentence?)

This time last year, I was so struck with grief, anger and hopelessness, that it is painful to think back to that time. What breaks my heart, is knowing that right now, there are new sets of parents going through the process of accepting diagnosis and a new set of sweet little souls having to deal with this disorder.

So, for all of you new parents out there, who are trying to grasp the concept of living with autism and what that means for you child, know this: While autism has given my son many struggles, it has also given him so many great and endearing quirks that make him the awesome little dude he is. Autism has proven to not be as horrible as I first thought it to be- S has made leaps and bounds this past year and there are lots of things to celebrate.

And so, where are we now? What has this first year brought us?

Well, as a parent, I have good days and bad days. Not surprisingly, those are directly related to our son’s good days and bad days. I am, however, full of hope. Over this past year, S has closed so many gaps…

He has become verbal

He has some shared expression

He has learned his ABC’s

He no longer has frantic bouts with shoes or sleeves

He says “Mommy” and “Daddy”

We have even recently heard “I love you”

He has a friend

He can make eye contact

He is learning some social cues (thank you, excuse me, bless you)

He is starting to show empathy (kissing other’s boo boo’s)

And the list goes on.  This past year has brought S so much progress. And while there are still many struggles, it is easier to focus on the good- which is a great place to be. I will tell you one thing, you will never take any victory for granted. Each milestone is celebrated- no matter how small it may seem to others. Every step forward your child makes is a gift that you will cherish. As a parent, I feel that S’s autism has made me live in the now more- taking in every moment and enjoying my son to the fullest. That is a pretty awesome thing.

So, what will the next year bring?

Starting this month, we will begin to tour schools, as S is going to age out of his early intervention program. He will go to a 5 day a week class and have an IEP. He will take a bus and he will be away from me for 4 hours a day. Our little man is growing up and I know a new set of challenges lie ahead. I have become very comfortable with his early intervention team, and I am not looking forward to the change. But, I know that we must keep going forward… we have no choice, really.

While this past year was full of struggles it was also rich in victories. So, I can honestly say that I look forward to the coming year and what it will bring for S and our family. Here’s to a new year…

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.

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.

Birthday Parties: Not Child’s Play for Children with Autism

This weekend, S was invited to a birthday party, for one of his classmates, at a local bounce and play type center. Based on previous experience, I had a feeling that S wasn’t going to be into the bouncing so much. Don’t get me wrong, if he had the opportunity to visit the place when no one was there, and spend 45 minutes warming up while watching me bounce, he would love it! He loves to jump and bounce and go crazy. However, no such opportunity existed, and as expected, he did not enter even one bouncy house. Much to my surprise though, he did enter the party room for about 15 minutes and rode one of those little flinstone-style cars that you push with your feet. Of course, just as he was getting comfortable, they turned down the lights and up the music. That was it!.. He abandoned the car and headed for the door.

We spent the remaining hour and fifteen minutes in the lobby… jumping. Go figure! Who goes to a bouncy house and then jumps in the lobby?.. my son. And well, the other 2 kids at the party who are S’s classmates with autism.

You know what though?, S had an absolute blast. When the party was over, he didn’t want to leave… he had so much fun, just jumping off of a bench for an hour and then eating some pretzels and a cupcake. And you know what else is awesome? I enjoyed it too! For the first time at an event like this, I was able to let go of what I thought S *should* be doing to have fun, and was able to appreciate that all that really mattered was that S was having fun in his own little way. I think that finally having decided to be open about S’s autism has made it easier for me to meet S where he is. And what is funny, is I didn’t even tell anyone at the party. Just knowing in my head that it didn’t matter if people knew or not, made all of the difference in the world. Before, I would’ve been worried that people were staring or wondering why S didn’t want to play in the bouncy house. I would’ve felt self conscious that he would be singled out and I would’ve been disappointed that he wasn’t enjoying the party the way it was intended. But not this time. This time I let go of all of my preconceived visions of how a child should play at a birthday party and I just enjoyed watching my little boy jump off a bench for an hour.

It certainly helped that as the evening progressed, his other classmates with autism wandered into the lobby. Though, they had both initially bounced for a bit, they too seemed overwhelmed with the whole event and took refuge in the quiet lobby with friends. It was nice being around people who understood and that I knew were not judging. It really made me realize that expanding my network of families with children on the spectrum is very important; this is something I need to make a priority.

I know another thing for sure; I need to start planning S’s birthday party now… 6 months in advance. It seems silly, as I’ve shot weddings that were planned in less time. But, the bottom line is that I need to find a place to host his party where he will be 100% comfortable and familiar. I’m going to start visiting places now, to see what he likes and then continue to go there with him over the next few months. I know my son is capable of having fun at his birthday party, but I know that won’t happen by booking a place 3 weeks in advance and having him enter a room with 10 kids in it… you know, how most children’s birthday parties are planned.

No, this one is going to take some time and be well thought out. That’s autism for ya… take something as simple as planning a birthday party for a 3 year old and it feels like planning a major event. I do want him to have a party though. We skipped one last year and just did cake and ice cream with grandparents. I knew that S wouldn’t have enjoyed any sort of party last year… regardless of the amount of care and planning that went into it. But, I know that if done correctly, it is possible for this year… I know he can have fun… even if it is out in the lobby.