Perfectly Quirky

Raising a Person with Autism

Month: February, 2013

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.

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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.