In So Many Words

Yes, this week I am thankful for a little yellow wristband that we got at Hersheypark.

Although we have been to the amusement park many times and even had season passes a few years, we had never taken advantage of the disability guest pass—until this Tuesday, that is.

When you request a pass, you get two things: a yellow Tyvek wristband worn by the disabled person and a small card used to obtain boarding times for the more popular rides. For those rides, the person manning the entrance to the line will write down a time on your card, and you can come back anytime after that to get on right away. For all other rides, you go directly to the exit and show them the wristband to gain admittance to the ride.

I had been hesitant about using this service, partly because I was worried about what people would think of us and partly because I didn’t want to teach Michael that he should expect preferential treatment because he has autism. Now that he is older and taller, however, he is primarily interested in rides that have much longer waiting times than he can tolerate.

We had a psychiatric appointment on Tuesday before heading over to the park, and the nurse practitioner encouraged me to go ahead and get the pass. He has plenty of opportunities to learn to wait, she told me, plus he really shouldn’t be standing around in the heat and humidity with the medication he is on.

And so we did.

The staff at the park couldn’t have been nicer to us. At one point, we went back for a second ride on one of the roller coasters. I let Michael ride by himself because I was too hot and didn’t feel like riding it again. They not only helped make sure his belt was tight enough, but one of the young men even offered me a cup of cold water while I waited. So thoughtful!

I didn’t notice if any of the other guests were upset by us being let onto rides without waiting in the regular lines. I only heard one person ask about it, and the staff person just said it was because he had a wristband. I did have one man ask me if there was a fast pass option he had missed, but he seemed understanding when I explained about the disability pass.

Although I realize not everyone would agree with my decision to use the pass or think it is fair to others, I do plan to continue getting the wristband for Michael when we take him to the park. I have never had a more enjoyable time with him—we walked around and went on rides for over four hours without a single complaint or outburst, which has to be a record for him!

In a world where “special needs” usually means behavior plans and IEP goals and lots of therapy appointments, I am grateful for a place where it simply means Michael gets to feel like he is special.

This month, Thankful Thursday is being hosted by Spiritually Unequal Marriage.

I really missed doing this last week when things got so hectic around here and wanted to make sure I joined in this time, despite the recurrence of strep throat that has hit me this week. So, here are my Friday’s Fave Five :

1. Best of the Best, Edition 7: Media and Kids with Special Needs

This monthly collection of posts features a variety of viewpoints on a topic, and this month’s topic is media. With 26 bloggers weighing in with their thoughts, there is something for everyone in this edition.

If I can be so bold as to promote my own post, I contributed with Harnessing the Power of Electronic Media for a Child with Autism.

2. Obsession by Melissa at Someday, When I’m Famous

This post actually goes along quite well with my first favorite, as it shows how Melissa is helping her son turn his love of spending time on the computer into a participatory activity by making his own stop-motion videos. You can also hear about it in Jake’s own words at his blog, Awesome Things I Like.

3. Surviving on Fizzy Pop by Fi at Wonderfully Wired

A brilliant illustration of the difference between “coping” and “surviving” and the aftermath of each, and why you don’t want to shake up that bottle of soda before you open it!

4. This week, I am continuing to love decluttering. We are now less one old computer, computer desk and toy bin unit, and are soon to be minus an extra sideboard.

5. My favorite thing by far, however, is making friends over Angry Birds in the waiting room at the OT’s office. This one isn’t about me, though, it is about Michael and his new pal CJ. They had a playdate at our house this week and had a great time with only a couple of minor misunderstandings on either side. The high point for me was when CJ asked to be player one on the Wii and, after thinking about it for a couple of minutes, Michael handed him the first remote. Ahh, the joys of Aspie friendship!

What were your favorite things this week?

Why is it I can only seem to focus on one area of my life at a time? I’m not complaining, just noticing this to be true.

I have been on a decluttering kick the last couple of weeks and have made some great progress on a couple of areas (not that you can tell from a quick peek inside my home, but I know it’s happening under the surface).

My son and I have actually been through every single thing in his room and he has given up a ton of stuff that he no longer uses or plays with. The gentleman that picked up his old toy organizer and small trampoline today actually has a three year old son who was born three and a half months early and has a trach, along with some other medical issues. It’s great to know that someone else will be getting a lot of use out of them!

Anyway, I got Michael a new cube organizer shelf with some colorful fabric drawers and helped him display some of the items that are more collections than toys, and he loves it! I love walking in his room and feeling the space. Sorry for the lack of photos – my hubby is really the photographer in the family.

Because of all this time spent on organization, I haven’t been on the computer much the last few days and was greeted with almost 200 blog posts in my Google Reader when I checked in this afternoon! Although there are many I would love to visit and comment on, I’m not sure whether I will make it through them all. I’m hoping to have a bit of time tomorrow to catch up on my blogging, but we’ll see how it goes, I guess.

Michael is loving being back at the same babysitter he had last summer and is continuing to show so much flexibility and organization of thought that Bob & I are blown away almost daily by the things he is coming up with. It is such a wonderful thing, and I am determined to enjoy it as long as it lasts (hopefully forever!)

As the school year draws to a close, I have been reflecting on how incredibly thankful I am for the amazing team of professionals that has been supporting Michael (& me!) throughout second grade.

When Michael’s TSS Becky left the job to attend nursing school in October, we were so fortunate to have Annika start working with him. Her patience, persistence and creativity have been a great blessing to us, and she has worked incredibly hard to adapt her natural style to best suit Michael’s needs.

Michael’s BSC (who supervises the TSS) has been working with Michael since he was three years old and has been a constant support and advocate for him.

The school team includes a host of characters: the special ed supervisor, the principal, the classroom teacher, the SLP, the OT and the autism consultant. That doesn’t even include people such as the specials teachers, the guidance counselor and all of the other school staff who interact with Michael.

And, of course, there’s the learning support teacher, who is Michael’s case manager and does an incredible amount of work keeping everything going as smoothly as possible.

Outside of school, we have a fantastic private OT, a dedicated psychologist and a wonderful psychiatric nurse practitioner. I can’t tell you how much their insights have helped me over the past year.

I know this litany of names doesn’t mean much to you, and I feel sort of like the lady on Romper Room at the end of the show ~ I see Diane and Emily and Jackie and Paulina and Mandy. I see Robert and Darren and Christina and Melinda and Jeanne ~ anyway, thank you for indulging my personal reflection today.

For those of you who have no idea what Romper Room was (or probably even more for those of you who do), here’s a clip of the goodbye scene with the Magic Mirror. I remember waiting eagerly to see if my name would be mentioned, although I don’t recall that I ever heard it.

This month, Thankful Thursday is being hosted by Grace Alone….

I’m not actually going to write anything about school; I’m just really excited that the year is almost over.

I did declutter another drawer today, however; I was actually surprised by how little I had left to put in it when I was done. My husband also agreed to get rid of two box fans that have been with us for many, many years and were basically just collecting dust. Baby steps, but feels pretty good!

Michael & I went to see Kung Fu Panda 2 tonight and both loved it. Bob wasn’t feeling too great, so he took a nap and rested a bit while we went over to the theater. We got to see a Cars 2 preview as well, which was pretty neat.

I don’t go to a lot of movies, but I noticed something that seemed odd to me – the screen that came up before each preview said it had been approved for “appropriate audiences.” Didn’t it used to say “all audiences”? Does that mean they can get away with more stuff in the previews now if the film being showed has a higher rating? (Or lower rating, depending on your perspective of the rating system, I guess.)

It feels sort of weird still to have things going so smoothly with Michael. I had two friends call today who are experiencing some difficult situations with their children, and it felt a bit surreal not to be the one who was stressed out and overwhelmed by things. I actually felt sort of guilty that we are doing so well.

I suppose I should feel thankful that things are stable enough here that I am able to offer a listening ear and whatever support I can to others. They have certainly listened to enough of my troubles over the years, for which I am truly grateful.

What a weekend! Did you ever notice that doing something different on Friday night makes the weekend seem longer?

We had a special service at church on Friday night to hear from our pastor’s son, who has just finished his first year at the American Film Institute in Hollywood. He shared some wonderful stories and a great message, but the best part of all was that Michael sat through an entire church service for the first time in his life!

Now, granted, this was with the help of the itouch (at zero volume) and a pen and paper to draw on, but it was an absolutely surreal experience for both me & Bob.

On Saturday, I went into work to do the reports that I usually do on Monday morning, since my boss will be at a funeral and asked if I could do them over the weekend. Bob took Michael to an outreach ministry event, another first, which went very well.

Later on, they went to Hersheypark for a few hours. Michael is now tall enough to ride all the coasters, so he went on the Great Bear for the first time (lots of firsts this weekend!). He called me right afterwards and said it was terrifying but he loved it! They ended up not riding any other coasters because it started raining, but they did get a couple of other rides in before they had to leave.

I got on a bit of a organizing and decluttering kick today and straightened up my bedroom closet. I also brought up the Christmas wrapping paper that had ended up in the basement last year and put it in the closet with the rest of the gift wrapping supplies. I also cleaned out one small drawer and got the big bag of Campbell’s labels prepped to send in – and good thing since the bonus offer ends June 15th!

What did you do this weekend?

If you saw my post a couple of weeks ago about how difficult this spring has been, you’ll know that we had been considering a medication trial for my son, who is nine years old.

I have always been quite wary of psychiatric medications, especially for children, because I know first-hand that they do not magically solve all of your problems and there are always potential risks and side effects.

Seeing Michael go from feeling relatively in control of his behavior to regularly exhibiting behaviors such as swearing and threatening people, throwing things such as shoes and chairs at others, and hitting, kicking and attempting to bite people had brought us to the place where we needed to give it a try and see what happened.

One especially alarming incident to me was when he hit two classmates while he was angry simply because they were closest to him. In the past, aggression always had a reason that was related to the target, even if the reason was simply perceived by him and not accurate in reality.

I have been getting a lot of mixed responses from people I have talked to about our dilemma, as you might imagine.

Knowing I was still quite nervous about the whole idea, the psychiatrist (she’s actually a CRNP) recommended a book to me, Straight Talk about Psychiatric Medications for Kids by Dr. Timothy E. Wilens, so I got that and read the relevant sections. I also talked some more with his psychologist and his private OT, and took a good look at the data from the new behavior plan we had implemented at school.

After all of this, I agreed to start him on a low dose of Risperdal and then consult back about how things were going. It was recommended that we only tell the school nurse and not inform the rest of the team, so that we could get some objective feedback on how he was doing.

After two weeks, we have not seen any negative reaction to the meds, and we have seen some positive things that cause us to be cautiously optimistic about it. He has been more communicative with us, sharing stories about what happened in school and expressing concern for his dad’s feelings. He also came up with a plan to do chores to earn money for a video game that he wants!

At school, Michael has had a significant reduction in timeouts, most noticeably when returning to school after the weekend. On the first three Mondays in May, he had 2-3 timeouts (these are for verbal or physical aggression only) plus additional breaks when he was being disruptive or escalating towards a meltdown. The last two weeks, he has had only 1 timeout with fewer breaks needed as well, and today his TSS reported him being happy all day.

We haven’t had a report like that in quite a while, so I am taking it as a good sign!

Yes, I realize that I haven’t written about our lives much lately, except for telling you about all the wonderful books I’ve been reading! I will try to do better, but you may have to nudge me if I wait too long again.

I will say that April is a horrible month filled with mood swings and temper tantrums and IEP meetings. And contrary to what you might be thinking after reading that sentence, not all of the mood swings and temper tantrums are mine!!

At this point, we have had many conversations about how everyone is responsible for their own behavior no matter how they feel or what other people do or say to them (how dare the teacher read a sentence ending with an exclamation point without using the proper amount of emphasis!), and that there is no excuse for hitting, kicking or throwing anything (pencils, shoes, chairs, etc) at another person.

We have also started a new behavior plan at school, with more tangible rewards that can be earned within a day or less and a stronger visual component to show how he is doing. It is likely that we will be starting a medication trial soon, although I want to give the behavior plan time to be solidly in place first and I would like to get objective feedback from school without them knowing exactly when we start the meds.

Considering medication is a big step for me. It is scary to consider possible side effects, both short term and longer term that may yet be unkown, plus I keep wondering if there’s something else we could do that would help. I have even considered moving him to a more restrictive environment at school for part of the day. Although that may be helpful or necessary at some point, we do see the mood swings no matter what environment he is in, even when he is completely in control of what he is doing.

I’m not trying to defend my decision, simply sharing some of the thought processes that have gone into it. Right now we are looking at a two-week trial to be followed up by a discussion with the psychiatric NP to decide where to go from there.

With only five more weeks of school, I am starting to really look forward to summer. Michael will be going to the same babysitter he had last year for several weeks, who is a wonderful woman who also teaches high school life skills during the school year. He will also go to a Summer Therapeutic Activities Program (STAP) for five weeks, the same one he has attended for the last few years.

I am going to try yet again to get him into the Children’s Institute at the National Autism Conference in State College. They generally give preference to children who have not been there before, but since it has been five years since he went, I am hoping he might get in. I asked about it last year when I was there, and they encouraged me to apply again this year. Unfortunately, the registration info isn’t up yet, although the save the date flyer said April 30th.

Michael also really wants to get Hersheypark passes this summer. We didn’t get them last year, but he has grown enough to be a Twizzler, which means he can ride all 11 of the roller coasters now. (I will only get on 7 of them, but that’s beside the point!) We are trying to decide whether to get three passes so the whole family can go or just get two and take turns accompanying him to the park.

Hmm, I just had a thought – maybe I’ll get two for now and add the third later if we decide we need it. (See, that’s another reason I should blog more often, it helps me think through stuff and come up with great ideas!)

Well, enough rambling for now. How about you, are you looking forward to summer or dreading it?

The prompt for this edition of Blog Gems is creativity. All you have to do is link up your post and then read and comment on the two posts listed before yours (at least!). Visit Blog Gems – Air Your Archives #11 to link up your post or read some other entries.

Since my son’s ninth birthday was on Thursday, this topic immediately made me think of the scrapbook I made for him (with immeasurable assistance from my incredibly creative friend L.) for his seventh birthday. It is an alphabet book celebrating all of the things that make him so special and wonderful, and everything in it is still true today.

I hope you will take a moment to visit the post and enjoy My Birthday Star!.

On a related note, this year we had his first real “friend” party – at Chuck E. Cheese of course! – and he had a blast! Here’s a picture of Michael with Chuck E. in his birthday crown:

Birthday Boy

*Okay, I know I’m just a tiny bit biased and maybe out of touch with reality a tad, but I am so thrilled that I really can’t contain it over this one.

The Background
Last Thursday evening, Michael was in his school’s talent show. He had wanted to enter last year but couldn’t think of anything to do for the show, and I wasn’t sure we were going to come up with anything this year either.

But then one day he came out of the school all excited because they had started learning Dance Dance Revolution in gym class, and he had done extremely well at it. He and his partner were the only team to get two stars both times during the class.

So he decided that was his talent and that he wanted to demonstrate the DDR moves he had learned for the show. He auditioned for his teacher and was sent on to a second audition for the principal and music teacher. They suggested that he should do it to music, which was another hurdle since he had a very specific rhythm in mind and it was virtually impossible to find a song that fit.

I did some research on DDR songs and finally found something that he recognized and liked (I’m actually not sure if it’s used in DDR but since it was the night before the second round of auditions, I was just so relieved to find something he would use).

By the next afternoon, he had secured his spot in the talent show. Over the next week, I tried to get him to practice, and he refused except for one time just so we could figure out exactly where he wanted the music to stop so he wouldn’t run out of energy. He just kept insisting that he knew what he was going to do and didn’t need to practice.

I was so nervous that night as to whether anything would go wrong, as you can imagine, but it went so well and I was so proud of him! Halfway through his routine, the audience started clapping along and he totally lit up at that and tried to clap along with them. When I told him later that he didn’t have to clap, he said that he just wanted to join in with them because they were having fun. I told him they were clapping because they wanted to be a part of what he was doing!

He also did the spin he wanted exactly on the right note without a cue from his TSS. Evidently he figured out what point in the song was 5 seconds before the spin and counted down from there. Pretty ingenious, I think, probably because I am so clueless when it comes to musical stuff.

The Video
Okay, so now that I’ve gone on and on and bored you with way too many details about the event, here is the video so you can see it for yourself. It is just over a minute and a half, and I’ve put the link below the embedded video for anyone who can’t play it from wherever you happen to be reading this post.

Link to Michael’s Talent Show Performance on YouTube

I’d love to hear what you think (as long as it’s suitably complimentary and full of adoration, of course!!).