Tuesday, March 27, 2012

More Inspiration??? I've Got You Covered!! This One Is About Speech!

Have you ever wanted something so bad that it almost consumed you??? Have you ever prayed, wished, asked, searched, longed for something so hard that you didn't...you couldn't...imagine that it would not happen. Well...that was what Sam's speech, his ability to communicate was like for me.

Sam's diagnosis of Down syndrome was one of the most difficult points in my life. To this day I can feel the depth of emotion I felt when the doctor softly closed the door and said, "Jeff and Sue, I need to tell you that I am almost 100% sure that Sam has Down syndrome...". Our pediatrician was compassionate and caring and he gave us this news in the most gentle way possible and yet the emotion of that day is still with me 11 years later.

A month later I was told in the ICU that my son had a brain injury. After that point I learned Sam had dysphagia and respiratory/immune system issues. Each of these diagnosis hurt just as much but I began to hope that they offered me some information or helped me figure out the difficult puzzle that is my son. I needed to learn how to help Sam eat and drink safely. I had to understand the defects in his respiratory system and how his diagnosis of dysphagia and a comprised immune system made this even more complicated.

In between all this craziness...I needed to love my son, I needed to enjoy my child. It was only by the grace of God that I managed to do that. All of us have probably experienced what it is like to try to figure out what is wrong with a screaming infant. During that experience you are panicked, you feel that you lack any control, you are frustrated, maybe even angry that you can't figure it out, you desperately wish that child could just tell you what is wrong. Now imagine that infant having special needs or special medical considerations...turning blue, stopping breathing and you have to be able to relay everything to the doctor, quiet your panic, focus on the now and help problem solve along with the medical staff. Now imagine that the child's inability to communicate
continues for years upon years. As a parent of a child with special needs and medical issues I have had to become an expert on Sam. I have had to find and work with a pediatrician that is also an expert on Sam. This pediatrician and I have to put together the very intricate pieces of this amazing puzzle that I know and love as Sam. We have a team of experts that are knowledgeable in their particular areas but it is up to us to connect the dots, consider the options and make the difficult decisions.

When I began this journey with Sam...my real fear...the thing that kept me awake at night was the cognitive challenges that Sam was going to face. I was very naive early on, I didn't know or
understand much about Down syndrome but I was soon to find out that Sam had a lot to teach me. After Sam's brain injury I was told about the added challenges that would affect his chance of walking and talking. We worked hard to get Sam first army crawling, then 4 point crawling and finally walking. At the age of 3 1/2 years old Sam was walking and I assumed now that we had finished that physical goal his speech was soon to follow. Therapists had told me that often times when a child is making physical gains their speech and fine motor skills may drop off.

Sam had sounds...grunts, groans and some animal sounding utterances. And then we heard Da Da and figured we were on our way. But speech eluded Sam. He had sounds and as we worked
on the letters of the alphabet I noticed that if he watched my mouth closely he could make approximate sounds...but there were no words.

Each year my mom and dad would pray that a Christmas miracle would happen and Sam would begin speaking and each New Year would come and go with no speech. I was the receptionist for our NACD chapter and I watched children with Down syndrome come in that were so much younger than Sam but were already speaking words, phrases and even sentences. When we took Sam to a new speech pathologist at the age of 4 his report showed him to be apraxic and non-verbal although he had been in speech therapy since he was 6 weeks old. I loved and valued each
of our speech therapists over these last 11 years. Each of them has helped me understand and has brainstormed with me ideas regarding Sam's speech, feeding and language challenges. But I learned long ago that therapy appointments alone were not going to make the change I desired for Sam. He was going to require daily work and encouragement. I felt a combination of therapy and our home program was our best bet to get Sam talking. I began to study up on everything NACD had available on speech production. The process of producing speech and understanding language affects so many different areas, so many things have to be working properly and when I looked at and thought about Sam I knew so many areas were broken or needed work. To learn more about speech and language in children with Down syndrome please reference this article.

To this day I continue to believe that if your child with Down syndrome begins to follow a natural speech production curve and even if it is at a slower pace you have won the lottery. Sam's communication challenges far exceeded his cognitive challenges but it was so difficult to get people to understand that Sam was smart because he couldn't speak. I myself had doubts at times on how to figure out what Sam knew and understood without the benefit of speech or communication. But I became an expert in reading Sam, his actions, his body language, his non-verbal and verbal utterances. I had to become an expert in order to know when Sam was sick, getting sick, hurting or what his needs and wants were.
My biggest teaching challenges had to do with figuring out how to engage Sam, then how to work with Sam and finally how do I figure out if Sam truly understands something or not without testing him. My ability to observe was heightened, my listening strengthened and I learned how to be fun and both visually and auditorally stimulating. Now if Sam could really sit down and talk with you I'm sure he would tell you I still have a long way to go.

I try to figure out what works for Sam, what he reacts to, what he engages in and then I try to expand it. I have learned that short spans with a lot of breaks works for Sam. In the early days if I was not going to be fun...Sam was not going to engage. If the task became a chore, Sam bailed.
If I talked more than I demonstrated he just tuned me out.

And yet...I dreamed...I dreamed of being able to sit and talk with Sam. I wanted to communicate with Sam more than anything else. How was I going to teach a child that couldn't communicate, how was I going to know what he was thinking or feeling? I wanted to hear his voice. I wanted to have a conversation with my son. My gut told me that something was wrong with Sam's hearing, Bob and Ellen Doman from NACD confirmed these fears. To understand our journey to allow Sam to hear please click on this article.

Our many feeding issues told me that Sam's oral motor area was broken and that we needed to focus on strengthening his jaw and work on his oral issues and sensitivities. Sam's respiratory issues affected his breathing and breathing is a part of speech. We continue to work on increasing Sam's breath capacity. After living through quite a few swallow studies and having visited the option of facial distraction surgery we were relieved to find out that Sam could indeed put his large tongue in his small mouth, close his mouth and continue to have an airway. But that large tongue was even more of a hindrance in producing good speech.

But I wouldn't give up...I couldn't give up on Sam. I looked into sign language and quickly figured out that Sam was a master at signs. But there was something else I noticed. The more I used sign, the less sounds Sam made.

Another area in Sam's journey to speak was sight word reading. I jumped into teaching Sam sight word reading at the age of 2 and I'm glad I did. When Sam began to speak his reading accelerated the number of words he attempted to say. His reading also helped with his articulation. He did not pronounce the last sounds in a word until he began reading words. To learn more about how Sam learned to read click on the subject reading on the right hand side of
the blog and you will find a number of posts showing how we started Sam reading, video's of Sam reading and how we work on his comprehension.

In my research I came across the book Communicating Partners and Dr. James MacDonald. I realized that his ideas were often incorporated into my NACD program but he went more in depth on areas that made sense to me regarding Sam's speech production. All of the physical stuff was a part of Sam's delay but Sam also needed to understand the power of communication and I needed to understand how to connect with Sam. I needed to enter and participate in Sam's world in a way he could relate to. I needed to speak to him at his level and add on so that he knew I understood and wanted to communicate. When I spoke to Sam above his level I would often equate that to the old Charlie Brown specials when the teacher would talk and all we would
here is "Wa wa wa wa wa". That is probably what I sounded like to Sam. To get Sam really talking I had to stop asking questions and participate at his level talking about things instead of testing him. I had to be interesting, fun and childlike. When I work on academics with Sam I always make sure to use both verbal and visual communication. Questions and answers are written out so he can both hear and see them.

We are always told to read to our children...Sam was the most uninterested child I ever came across. But think about it, he couldn't hear well, he struggled with language and all that experience really had going for it was a potential for good visuals and possibly some quality time with mom although her lips kept moving and nothing made sense. At the age of 11 with his hearing aid Sam is finally getting the concept of books and that there is more than just pictures,
the words are telling a story. Some stories are now worth the effort of hearing and processing and some are not. We are now working with the program Raz Kids which has animated leveled books that can be read to the child and the child can record themselves reading the book. Each book also has a comprehension quiz. It takes Sam a couple of times to hear the book and then read it himself in order to achieve a good level of comprehension.

Each of these steps was needed to get Sam talking. The process of getting Sam talking was slow and tedious and we still have a lot of work to do but Sam is speaking. The early years of wondering if my child will ever speak is now a distant memory. Our attention is now spent on articulation, turn taking, listening and responding (conversing). He likes to talk at you and because both hearing and speech production is work for Sam he will only talk for short periods of
time. But having gone through this process I have become a better listener and I have a learned patience and ability to withstand hearing the word "Mom" a million times a day. I cherish it...I cherish the fact that Sam's "I ah oo" has slowly become "I love you". I cherish each and every interaction I have with Sam and although I have had moments of wishing for peace, just a little bit of peace, I am thrilled that we have come as far as we have and I look forward to what the future holds.

I was reluctant to put Sam in a school setting because his speech was so far behind. It wasn't just the thought of him not being able to tell me what happened in school although that also scared me a great deal. I also wondered how he would be able to communicate with his class mates because Sam requires you to be patient and it is work to talk with him. How many kids want to put in that time and effort? I knew he needed to attempt sounds and speech often and with someone who could join in with him at his level and assist him. He needed to practice and he needed to practice a lot. Sam's speech was just beginning and first developing after the age of 5 and he needed to practice his sounds, words and communication similar to that of a toddler. I would never tell a toddler who is first experimenting with language to be quiet and I didn't want anyone telling Sam that either. I didn't want Sam to sit quietly in a classroom, I wanted him to express himself whenever and however he could and when we had mastered those interactions I knew we could then work on understanding how and when to be quiet. We are not to that point yet. Sam is still working on figuring out how to express himself, how to listen and how to communicate. And yet when Sam attends church he is quiet except for the occasional "Mom go home, pastor all done". His experience in church assures me that his understanding of when to
be quiet is something he will be able to do.

But right now I want him talking and I want him talking a lot. He has so much to figure out about this communication thing. I remember when Ben was younger and I often received a call or email from the teacher regarding Ben's disturbances in class. Ben was often caught thinking out loud. But that thinking out loud is what helped to give me a brief picture of what actually happens in the mind of my child and one of my greatest desires is to spend a half hour in Sam's brain, hearing how he hears, processing how he processes, speaking how he speaks. That half hour would teach me volumes on how to talk with Sam, how to work with Sam and how to understand Sam. So when Sam thinks out loud, it might be confusing or irritating to other people but it gives me that snapshot, that little piece of information that helps me understand Sam.

Sooo...I encourage Sam to talk and talk often. To the average bystander Sam would seem loud, somewhat rude because he interrupts all the time and he is a very poor listener. But that is because they are looking at Sam as an 11 year old. I know the path we have been on, I understand the challenges Sam is trying to overcome with his hearing and speech issues. I acknowledge where Sam is at with his speech and language development. The only way Sam is going to become a talker, a communicator is to practice that skill. Can Sam's constant need to express himself be challenging? Can Sam's interruptions be difficult? Can Sam's lack of active listening drive you crazy? Can Sam's impulsiveness be demanding? Yes, Yes, Yes and oh Yes...but then I remember a little boy that didn't speak and I remember my desperate plea and dream to converse with Sam and I grab a whole new bucket of patience and work through it. We still have a long way to go but we are moving forward.

What helped me help Sam to speak was to first understand how we produce speech and have any concerns with Sam addressed. I had to encourage Sam's sound production by repeating his sounds and helping him turn them into language. By repeating Sam's sounds or utterances I was in fact validating his need to speak and communicate. I was showing him he was interesting and I wanted to understand what he was trying to say. Through play we turned noises into sounds and then into words. When I asked Sam questions he shut down. When I talked in long sentences he shut down. When I tried to monopolize the interaction he shut down. I labeled things for Sam but
didn't require him to verbalize, he could show me he understood by pointing to it. If he attempted to verbalize, I repeated what he said and then said the word correctly.

The process to get Sam speaking has been a long one but well worth the effort. Just recently Sam overcame another one of my fears. When you begin to wonder if your child will speak simple things like using the phone become yet another concern or hurdle. Sam had multiple issues with the telephone. His hearing issue made listening on the phone difficult. His fine motor issues and low auditory processing made dialing a phone difficult. But devices like the telephone and skype are wonderful ways to help a child work on their speech and language. So I did some research (it's what I do) and came across a phone that seemed to be made just for Sam.
Notice the large numbers for easy dialing but the really cool feature is the picture dialing. You can program 4 numbers into the 4 picture buttons. This phone also comes with a boost button to help Sam hear the conversation better. Sam was excited to try it out and I hope to show how his conversations will expand. As you can tell from these videos he is a man of few words.

First a call to Daddy!

Then a quick call to Ben!

And finally checking in with Danielle!

Now for your viewing enjoyment here is my no longer non-verbal son watching "The Pacifier" movie with me.

Watch it a few times and each time you will pick up more and more words (well, you will if you know the movie well). Even when I watched it I couldn't believe how many words I missed. Makes you want to watch it just so you can see all the things Sam is reacting to, huh???

What I love about this video is how much of Sam's personality shines through. He wants to communicate, he wants to interact...putting all the pieces together to form good speech is and continues to be a challenge but we have come such a very long way!! Good Night Everyone!

1 comment:

  1. Quality of Life... that is an idea that haunts my family. I know Sam has that quality from all you share. You do reach out more powerfully than you know with this blog. May I share my Kreativ Blogger with you? http://rileyssmile.com/kreativ-blogger/