In So Many Words

As I reflect on the first half of the summer, I am overwhelmed (in a good way!) with how free from worry it has been so far. In the past, I have often dreaded the arrival of summer, with its lack of structure and my anxiety about the next school year. I am so thankful for a number of factors that have brought much more peace to this summer than to previous ones:

1. How well Michael has responded to the medication we started this spring. Notwithstanding a handful of difficult instances, he has been tremendously flexible and emotionally regulated.
2. Having the same babysitter and summer program (and even van driver) as last year.
3. Being able to attend therapy sessions on a more flexible schedule so Michael isn’t overloaded but doesn’t lose ground.
4. Being able to bring out the summer packet without Michael falling apart and completely refusing to do it.
5. Making fun trips to Hersheypark and Michael being tall enough to ride any roller coaster or ride he wants to.
6. The fact that we have a solid IEP with a good behavior plan in place, as well as a gifted evaluation scheduled for the fall.

I am also greatly excited about the opportunity to attend the National Autism Conference the first week of August. Between the fee for PA families being just $25 for the entire four days, my brother-in-law’s family allowing me to stay with them in State College, my boss allowing me to take the week off and Michael getting into the Children’s Institute taking place at the conference site, it has all worked out incredibly well.

There are a lot of great speakers coming, and I am especially looking forward to the seminars on motor planning and on adapted physical education, both topics with which I am not as familiar. For anyone who is interested, both handouts and video of some sessions will be available within the next few weeks.

Of course, there are always things I can find to worry about, but I am choosing to focus on how many wonderful things have been happening for our family.

What are you thankful for today?

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

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.

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….

This week I have been incredibly grateful for acts of kindness that have been done for me. Even a simple gesture of understanding can be so powerful.

For instance, I got a call Tuesday morning that my son’s TSS was sick and wouldn’t be at school that day. I brought Michael to school prepared to walk him up to the classroom to help him get settled and hopefully avoid any meltdowns that might occur during the transition to the school day.

When we arrived at school, I was surprised to find his case manager waiting at the door for him to do that very thing! It was such a thoughtful gesture and really started my day off on a good note.

Later that same day, I went to the periodontist for a surgical procedure. Upon arriving, I was greeted at the desk by the nurse, who took me back to the room immediately and started out by letting me know that they already had my prescriptions written out and that they were all for liquid medicines.

Again, this is such a small detail, but it made me feel so cared for not to have to make the request, explain why it is needed and then remind them again later to make sure they were done correctly. It was nice to have one less thing to worry about!

So, if you are ever wondering whether that small gesture of kindness would really matter, be assured that you never know the impact it will have on someone. As a friend of mine likes to quote from Plato, “Be kind, for everyone you meet is fighting a hard battle.”

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

This is the first time I have participated in the Thankful Thursday meme. I tend to spend a lot of time worrying about what is going wrong or could go wrong and focus too much on everything I need to do to keep all the plates spinning, and I want to balance it out with thoughts of what I am thankful for in my life.

So, here goes….

I am thankful that my son, at age seven and getting ready for first grade, is enjoying the Preschool VBS at our church. He wasn’t able to go when he was in preschool and was overwhelmed by the elementary VBS earlier this summer, so it is a real blessing to see him enjoying himself and being successful at this one!

I am also extremely thankful for the wonderful, godly mama who is watching my son this summer while I am at work. It brings tears to my eyes to think of how much she has blessed both me and Michael through her willingness to love him and accept him as he is.

I am thankful for a boss who is flexible and understanding of the situations that arise when parenting a child with special needs, including but not limited to taking time off for IEP meetings and doctor’s appointments and rearranging my schedule when his placement changes or when transportation doesn’t show up at the right time or place, etc.

I am thankful for friends who are willing to listen to all my tales of woe, and who are just as willing to go watch a movie or sit and laugh together when that’s what we need.

What are you thankful for today?