Happy Rare Disease Day! And happy Henry’s IEP meeting day 🙂

Rare disease day is a day to honor and celebrate individuals living with rare diseases and to raise awareness about different rare diseases and syndromes. I totally forgot to prepare for it this year! In years past, I have made kind of a big deal about it. Last year I even got my principal to let the staff at my school wear “jeans for rare genes” (based on the campaign from Globalgenes.org) to raise awareness for Henry’s rare syndrome, dup15q, and Calvin’s not so rare syndrome of 22q.

This year I pretty much dropped the ball! But I did spend this morning of Rare Disease Day advocating for my rare Super Duper along with James at Henry’s IEP annual review meeting.

I know that IEP meetings can be very stressful for parents. For me personally, that has not been my experience so far. I have to say, although the meeting was very long (2 hours!), I really enjoyed hearing Henry’s teacher and therapists talk about all the progress he has made and all the goals that they believe he will be able to achieve in the next year.

We had his classroom teacher, his physical therapist, his occupational therapist, and his speech language pathologist plus of course the director of the school and James and me. The teacher and therapists had lots of wonderful things to say and answered all of our questions thoroughly. I will spare you the two hour version of the IEP minutes, LOL, but here are a few highlights.

Speech:

Henry has been vocalizing more and saying a few words. He says hey or hi, he approximates bye, he says beep, and… wait for it… He is even saying mama! I’ve been trying to get that kid to say mama his ENTIRE LIFE. And he has gone in and out of phases of saying or approximating it, but he is in a phase of saying mama right now and I could not be happier about it!

Not only is he vocalizing more, but he is engaging in vocal back and forth “conversations” with adults and peers and even on a toy phone, LOL. So cute! But not only is it cute, it means that he is starting to understand the back-and-forth exchange of conversation and communication.

He is working on using a voice output device to choose between two items. The device has two buttons and each button has a picture on it. For example one picture button might have crackers and the other might have a picture of his water cup. When he pushes the button for the thing he wants, the device will say the word, which the teacher has pre-recorded, and then he can have the item that he chose. He is still at the stage of learning how to use the device. Eventually he can learn to use a device with more than two choices. The communication device is in addition to encouraging his verbal speech and a few signs. We are sort of going through all avenues to try to give him ways to communicate.

Physical Therapy:

Henry has been working really hard this year on going up and down stairs and he has made a lot of progress! He can now hold the hand of an adult and walk up stairs. His therapist said that the other day he walked up two flights of stairs in the school! Walking down is harder, but he is beginning to be able to do that with assistance as well. It wasn’t that long ago that he was too terrified to step off the top step.

In general, he is working a lot on coordination and balance. His therapist even has him work on walking on a balance beam!

At home, we have just got on Henry a new kind of bike. It’s a balance bike with training wheels added on, which I know seems weird, but our thinking was that since he could not yet use pedals, he could propel himself with his feet on a balance bike… but a balance bike on its own was too wobbly for his level of strength and stability. So we had the training wheels added on which makes it sort of a bigger version of those little four wheeled scoot-along cars for babies. He can sit on it and use his feet on the ground to push himself along. It’s working pretty well. But his physical therapist actually has him working on using pedals on a tricycle that has foot plates with straps where his feet can be strapped in! I’m excited that he is working on different ways to use a riding toy.

Occupational Therapy:

Henry has been doing really well with putting items into containers. In his classroom his teacher and therapist use shape sorters where he has to fit different types of shapes into the right holes. And he’s doing pretty well with most of them! There’s one with buttons where he has to get the button aligned with the slot just right, and he can do that one with help but often gets frustrated and throws the buttons instead… Putting items into a container is an important skill because it translates to the self-care skill of being able to clean up and put things away! The only problem is Henry sometimes likes to put things into containers a little too much… He has been known to put things in the garbage can that are definitely not supposed to be there! This happens both at home and at school!

Apparently he is not a fan of drawing and crafts. Right now he will sit and do a craft activity or a pre writing activity for something like 30 seconds to 1 minute and his goal is to increase that stamina to 2 to 3 minutes. So… baby steps!

His sensory input needs are one of the main barriers that make it difficult for him to work on a skill or attend to a task. All of his therapists and teachers use vibrating toys to give him that sensory input so that he can concentrate on whatever he is working on. We are looking into getting him some of the same vibrating toys to use at home.

Classroom:

Henry is in a self-contained special ed classroom. In his class he has made progress with being able to sit on the rug for circle time and focus on classroom tasks, although he regressed a lot after the winter break and still has not quite regained the level he was at before the break. Because of that regression we are hoping that he will qualify for extended school year which means that he would get some classroom time during the summer to keep him from losing his classroom skills before the next school year starts.

Since he’s technically a rising kindergartener (pardon me while I go cry about the fact that my youngest baby is a rising kindergartner!), he now has a math goal and a reading goal in his IEP. His math goal is to develop one-to-one correspondence up to 5 and to sort 10 objects into groups by attribute (like, put all the red ones in one cup and all the blue ones in another cup). That one-to-one correspondence goal feels really lofty to me, but his teacher explained that this goal can be met with assistive technology like a voice output device where he is placing objects on the numbers 1 to 5 and the device is saying the numbers one to five. His reading goals are to recognize his own name and recognize the letters in his name. Again, these will be modified for his communication needs. He may be able to identify the letters by pointing even if he can’t say them.

His teacher and his therapists all seem to genuinely care for him and enjoy him. That means a lot to me. And I hope that we are this lucky with his team next year. I wish so much that he could stay in his current placement for another year!

In April we will have another meeting called a transition meeting where we will make a decision about his kindergarten class placement and find out whether he qualifies for extended school year services. In the meantime, he will be observed not only by his own teacher but by other people in the EC (exceptional children) department who will work together to compile information to help us decide which class placement will be best for him. There are three different types of classes which are options for him. I’m a little nervous about this process, but I just keep reminding myself that Henry is an amazing and resilient kid and he will be an amazing and resilient kid no matter what type of class he is in. I also keep reminding myself that the EC department did a wonderful job with his placement this year so I am hopeful that they will make a thoughtful recommendation for his placement for next year. And of course his dad and I get to have some say in the decision.

I’m proud of all the progress he has made and I am optimistic about his new IEP goals. I’m also really grateful to his team of teachers and therapists this year! I hope we are so lucky next year, and I know he has a few more months with them before it’s time to make any transition.

Thanks for reading – or even skimming! I know this was a long one! It means a lot to me that there are people in our life who care enough to check in about Henry’s progress. Thank you for caring about someone rare! Happy Rare Disease Day.

For more about rare disease day, check out these links:

RDD 2016: Get to Know 22q and Dup15q

rarediseaseday.org