Cerebral Palsy, Notable Links, Our Son, Parenthood

Communication Station

Sebastian Rocks

We were told from the time Sebastian was about two weeks old that he would likely have cerebral palsy due to his traumatic birth. We were told that his arms would posture, meaning that they would extend down, straightened and possibly in, with his hands fisted. That there would be medicine he could take when he got older that would help this. We were told that there was no way to know whether he would walk. Maybe he would. Maybe he wouldn’t. We would have to wait and see. We weren’t told much else. Other than to get a second MRI once he was closer to 6 months old and to see a specialist to go over both MRI’s with us. The specialist (pediatric neurologist) diagnosed him with moderate cerebral palsy at age 3 months. At age 5 months, he was diagnosed with dystonic cerebral palsy affecting all limbs and trunk. This doctor was happy to see his progress in social interaction and some rolling. Neither doctor told us that our son may not talk, or that if he did his speech would be impaired.

Just as I felt I was finally understanding and accepting our son’s physical disability, I realised that I may never hear him say Mama. Or I love you. At least in a way that was the tiny voice I had imagined my little boy having. This was more heartbreaking to me than not knowing whether he would walk or not.  Doesn’t every parent want to hear those words?

Right now I’m reading Schuyler’s Monster, which has me really thinking a lot about communication.

So far we’ve done a lot of work with therapy for gross motor skills and some fine motor skills. One area lacking for therapy in Egypt was Speech and Language. We had some ortho-motor therapy to help Sebastian learn how to chew and work on eating properly. And we also had some exercises for this from our OT with Early On to do before each meal.

We were given some picture cards from Board Maker last summer to work on choices with Sebastian. They were pictures of his favorite songs and activities. The idea was that Sebastian would choose between two by pointing to it with his hand. We did this at home, almost daily with the cards, but also with toys and other objects. Sometimes Sebastian would choose by looking, although I always encouraged him to use his hands because I wanted him to use his hands with motivation. I was grateful for a set of these picture cards from a friend in Australia, whose son had outgrown them. We’ve used them for activities and I’ve tried to get him familiar with them, but I don’t think he’s really sure what to do with them yet. Although we only used the cards which were for familiar activities we need to introduce two at a time with the actual item pictured to help him make that initial connection, and then introduce the choice.

This summer, we’ve been given something new to trial from Early On. It’s a GoTalk. There are 9 squares to push, a picture for each one with a recorded voice below. To start off simple we’ve done two choices: Music Mama and Book Please. We recorded Ali’s voice before he left so Sebastian could hear it on request. We’ve also added a couple bonus spaces with Ali’s picture on each, one is a beatbox/rap and the other one is  Papa-Daddy loves you. Before we had the bonus Daddy Tracks, Sebastian would choose the book more often than the music. Immediately we start reading a book or playing sing-a-long music, whichever he chooses. Now that the Daddy Tracks exist, he pretty much only chooses those and gets a big smile on his face each time. He is reaching with his hand and touching the space and I help him push it down. He sure loves his daddy. And time misses him too.

Throughout my research on equipment and therapies for Sebastian, I have looked at Alternative and Augmentative Communication devices that others have discussed on blogs or discussion groups. I haven’t researched many specific devices yet, but I have an idea about the companies out there and the costs involved in some of these more high tech devices (starting at $2000 going to $15,000plus). I’ve also mentioned the iPad a couple times on the Seb Can Do Facebook Group as there are a couple applications that could help Sebastian to communicate when he is ready for them, and this is a much more affordable option.

When Sebastian was much younger I read an article about a doctor researching the effectiveness of using Alternative and Augmentative Communication devices in children from a very young age, starting at6 months old. This makes sense to me considering I had always planned to teach Sebastian baby signing. And I did try at first until it became clear that he would not be able to control his hands to repeat the signs to me to ask for something. From a young age children have something to communicate, so we need to give them that opportunity if they aren’t sure how.

Sebastian does make some sounds, and he does so back and forth with me. He tries to move his mouth and he attempts to mimic tongue and lip actions. But sometimes his mouth opens to an O when he tries to make a sound or mimic, and it kind of gets stuck. Sometimes people think that he is yawning, when really he’s trying to communicate something, but his CP gets in the way. Like how his body tenses up when he tries to reach for something or take a step.

Sebastian may not have found his voice or the words to say it, but every day, several times a day he says, ‘Mama, I love you’. It’s in his smile. It’s in his eyes. It’s in his tight embrace. And someday it may be in a computerised voice or even verbally in a way that only I can understand. And for all of this, I am blessed. Because Sebastian ROCKS.

For photos and updates regarding some equipment we are trialing for Sebastian with the help of Early On, head over to Seb Can Do.

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5 thoughts on “Communication Station”

  1. Kara, what a beautifully written post. It is amazing how life develops and the communication aspect far outweighs mobility as such. When Cooper was born I never even thought about his speech, I always worried about walking/moving. Now we all know that speech is a huge issue with Athetoid/dystonic CP but lucky we are living in the techno age and it will only get better! I think Cooper was about 3 by the time he really started talking ( very different as you have seen) as such and now he does not stop! lol Bron xo

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  2. Hi Kara,
    What a lovely photo. Seb gets cuter every day. And I am right there with you on this one! I just posted my review of our iPad and p2go. I agree with Bron that we’re lucky to live in this exciting techo age!! Our kids should have all the opportunities of good communication which is not only exciting, but a great relief. I was quite shocked to discover that S’s speech would be quite affected by his CP. For me, it was a bigger blow than knowing his physical movement would be affected. He was probably the same age as Cooper when he really started ‘talking’ too and also doesn’t stop now. Some days when I am close to asking him to please be quiet I have to remind myself how much I hoped and begged that he would be able to communicate at all ;-). We must reconnect with your new contact details so I can send you that paperwork AND the sandals.
    XO
    Di

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  3. I don’t know whether to love you for the absolute dedication you have for our son, or the beauty and honesty with which you describe it. Or for some completely separate reason, like the many I retain from our early years. Whichever way I choose, the result is the same.

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  4. First off, can’t remember if I’ve commented here before but you have a BEAUTIFUL son.

    Second, I understand the feelings you have regarding your sons communication. It is a way that we connect deeper with each other and hear one anothers thoughts so naturally we want our kiddos to ‘speak’. Like you said, coming to terms with the lack of language is much harder than not ever knowing the physical limits of your child.

    I look forward to pokin’ in on you guys from time to time…thanks for sharing your story.

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  5. Hi Kara! Reading what you wrote has reminded me of my voluntary work in the UK. I used to helped the school speech therapist develop AAC program and creat boardmaker cards. To facilitate communication, you can also create a personal passport for Seb to help others understand him better. If you would like to know about the school where I worked becore in England, let me know. The school provides conductive education as well as national curriculum.

    Hugs, Alison

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