I have something to say

Several weeks ago as we were leaving Grandma & Granddad's house Granddad gave Brett a kiss on the forehead and said "I love you, buddy."

And Brett responded "I love you too." 

I was holding him and almost dropped him. Tears sprang to my eyes and I looked at Granddad – he had heard it too! A miracle moment.

Part of Brett's Cerebral Palsy diagnosis is that he is "non-verbal." Mostly he lacks the trunk strength and coordination to do a lot of the breathing involved with talking. Lately he is making a lot of sounds. Trying to communicate with his words, but we often can't understand him.

He has some words he uses regularly. He will answer "ya" responding to some questions. He can say "Momma" and "Daddy" – and I assure you there are few sweeter sounds. He often calls "out" or "all done" from his bed in the morning (sometimes around 4 or 5 a.m.) and he often says "I like it" with varying degrees of clarity. Sometimes we will hear a word or phrase, like "I love you too" as clear as day and then not hear it again for months or ever.

Brett can't use his voice to tell you he's hungry and when he's crying he isn't able to use his voice to tell us things like "my tummy hurts" or "my leg braces are bothering me" or "this shirt is scratchy." There are times when he desperately wants me to know something and I can't figure it out and he is frustrated to tears and I've been in tears while my heart aches to know what he wants to tell me and the world.

So we aren't ok with Brett not having a voice.

I often tell people "just because he can't speak does not mean he doesn't have anything to say." Unfortunately, people correlate his lack of language for a lack of intelligence. In Brett's case he completely comprehends what you say and what's going on around him. He knows his numbers and letters, letter sounds and sight words just like other kindergarten students. But communicating all of that is a challenge – for Brett and for those he wants to communicate with.

Since Brett was little we have introduced a variety of methods for Brett to "speak" or participate in conversation. I am grateful for my friend Jana whose background as a speech pathologist opened my eyes early to the options and assured me he wasn't too young to give them a try.

Brett has a Big Mac switch and some smaller block switches. They are essentially buttons you can use to record single messages and he can activate the switch to speak. He has used them to tell people happy birthday, say trick or treat on Halloween, to bring home messages about what he did at school and to help read a line from a book. He has a switch that allows up to three messages and is most often used for him to participate in our bedtime routine to say Amen after a prayer and then goodnight to his brothers. He uses some basic body language to communicate. A thumbs up for yes and arms/hands crossed for no.

Since Brett was three he has been working with several AAC devices. He uses a PODD book, which uses a series of Boardmaker pictures to give him choices of things to say. He also uses a communication device - a computer that allows him choices of things to say. 

Progress is slow. 

Because of his physical issues Brett doesn't yet have the accuracy to quickly touch a screen to say what he wants. So he has two switches or buttons. One at his elbow and one by his hand. He uses his elbow and a little speaker by his head to listen to the choices of what he wants to say and when he gets to the right one he presses another switch with his hand to make the device say it. Sometimes, especially when he is excited, his body gets away from him and his elbow will hit the switch going right past what he wanted to say. It can sometimes take up to five minutes for him to communicate a single thought. It can be both mentally and physically exhausting for him and a test of patience for the person he is communicating with. But he has made a lot of progress and does a great job with it when he is motivated to say something. We are waiting to hear whether insurance will approve a new more dynamic device for him to use as his old one is outdated and doesn't offer enough options for him.

Brett had another breakthrough a few weeks ago at assistive tech therapy when he used his device and a PODD to ask a question about something that was going on in the hallway. It was the first time he initiated a question and we were so excited!

I tell you all of this for several reasons: 1. To offer a better glimpse into Brett and how he communicates. 2. To encourage others to investigate the many communication options. 

May is Better Speech & Hearing month. If you know someone with a young child who is concerned about their speech or hearing please encourage them to visit identifythesigns.org – there is so much today that is treatable and so many solutions available.

It also doesn't have to be a child. These communication options can be used at any age and are being used by adults with ALS, dementia and a variety of diagnosis. 

My career is in communications and I can't imagine not having the opportunity to say what is on your mind. I look forward to the day when Brett's abilities and the technology come together to the point where he can say anything he wants to anyone who will listen.

Until then we will celebrate all the special moments. I asked each of the boys to record a Mother's Day message to Grammy who lives out of state. On Brett's turn I set him on the couch and told him when I started the video he needed to say "Happy Mother's Day" to Grammy. I was expecting him to use his Big Mack switch. Listen closely to the beginning of the video - amazing!

Casting, braces and Botox

Brett has the cutest feet. 

I am not a foot person. When I have had the opportunity to get a pedicure I’ve always whispered a prayer of thanks that they are willing to do that job. I’m cringing thinking about it as I write.

In several respects Brett would make many dancers jealous. His toes are perpetually pointed with a beautiful arch. My dancer days are a distant memory, but we did exercises and all manner of hard work to get what he has. He also has scissoring legs. Not great for every day use, but if you lift him off his feet when he is excited he rivals every ballet dancer I’ve ever seen doing an entrechat where the legs criss cross rapidly in the air.

But, alas, he is not trying out for Swan Lake at the moment so the toe pointing and leg scissoring are a challenge. Most of it comes from the high tone in his legs.

So, shortly after the start of school Brett underwent serial casting. The idea was that he would be casted in a foot flexed position. Every two weeks new casts would be done and the flexion would increase. I waited until summer was over and he was in the swing of things at school. But just as he got his casts on we had a heat wave of 100+ temps. I’m sure he was sweating in them, but he fussed the first day/night a bit and then never again complained. 

To our surprise he was only casted once. The orthopedist said in the one casting he had gained as much flexion as we could expect. I could tell the difference immediately. This has helped with his walking and leg positioning. It also helped him with his new AFO (ankle, foot orthotics) or leg braces that he wears daily. He had trouble with his last pair because his strong arch was pulling his foot out of them and making them uncomfortable for him to wear. He cannot work on walking flat footed without the braces. So after he came out of the casts he was able to get new braces as well.

Shortly after that he was on to the next thing – Botox injections. I know! I remember hearing about it from another parent when Brett was small and being somewhat horrified. But I asked around and did research and after quite a bit of hesitation on my part decided he should give it a try. They gave him two ultrasound guided injections in the abductor muscles in both legs. The idea is to loosen up the muscles so he isn’t too tight. Part of Brett’s spastic quad CP means that his muscles are as tight as drums. Medications help some, but as he grows the spasticity becomes more intense. To offer some examples sometimes he is so tight when he is on his back on the floor I can’t bend his knee or hip flexor to bring his leg toward his chest or do bicycle motions. Some days I cannot get him to bend at the waist to seat him in his wheelchair or his car seat. He is like an unbendable plank. He has always had this issue, but when he was tiny it was easier to maneuver him into the positions. Now that he is almost 4 feet tall and strong as an ox it is very challenging and sometimes dangerous to hold and position him at the same time.

I was really skeptical. But it worked. 

He was able to relax enough to be able to do things he never could before. At Halloween he sat on a stair unaided and showed off his pumpkin. Besides being adorable he was able to sit unaided because his body was relaxed. You might also notice his bare feet are flat on the floor!

He has always been able to sit criss cross apple sauce on the floor for seconds at a time. After the Botox I positioned him in criss cross during Sunday school and there he sat for almost 15 minutes. Righting his body when needing to and only tipping over when he lost his balance. He was better able to pull his legs forward in assisted walking. A bonus was that he was using his hands so much better. Because he wasn’t working so hard on his legs he could focus on other areas. He was holding his spoon, opening drawers and really perfected isolating his pointer finger for use on the iPad. His thumbs up indicating “yes” became more pronounced. He was able to work on a new sign for “no” crossing his hands.

And then it was gone. I could tell you to the day when it had fully worn off just before Christmas. I was fighting his body to get him in his car seat and was thinking – why is this so hard? And then I realized.

He is able to tell me that his muscles hurt more now that the Botox has worn off. It’s like in the cartoons when someone is granted a wish or turned into something, but then the magic wears off and they are back to themselves. The magic has worn off.

But the good news outweighs the bad news. 

The good news is that he has retained some of the skills – the thumbs up and pointer finger are so good and I assure you the “no” is here to stay. Though he can’t maintain it as long, his independent sitting in criss cross applesauce is better.

Though he can get the injections every three months the only doctor I trust to do it is on medical leave so it will be awhile before he gets it again.

The bad news is that eventually it will stop working. For most, as if there is an immunity built up, he will someday no longer respond to the treatment. I don’t know when that will be so for now we are hanging on to the good stuff.

For those of you who don’t have children with physical disabilities I know this all seems strange. Sometimes having a child with special needs can make me feel like we are living part of our lives in an alternate universe and – in a way – we are. Casting and Botox on a five year old would have seemed strange and admittedly may have seemed  a little bit like torture if I didn’t live in this world.

But from where we live I am adding both serial casting and Botox to my list of Bizarre Things I am Thankful For.