Yeah, there is an elephant in the room. But not in the traditional sense. I actually see the elephant, acknowledge the elephant, and he was firmly sitting on my chest! The day before 4th of July, I ventured up to Denver with Peter (and Jack in tow) to have an assessment done at the hospital. Note to self: never, ever, ever venture the trip up on the day before a holiday weekend…never, ever, ever, ever again! The appointment included OT, Speech and medical. I admit I was all over the spectrum from completely stressed to beyond excited, and everything in between.
When I had a similar assessment done last year, I had mixed feelings coming out of it. Some sessions far more valuable than others. So there was that nervous anticipation and desperate hope for some really good information. Occupational Therapy came first – very positive feedback on Peter, and good information/suggestions on handling handwriting since that is his challenge right now – plus he appears to be ambidextrous, which adds to the challenge when he changes his mind on what hand to try writing with. He knows how he is supposed to write the letters – but his hand flies all over the place if you don’t do hand-over-hand support. Speech Therapy came second – and that would be when the elephant pounced on my chest. This has always been a concern area for me because Peter has always progressed so slowly. I remind myself that he started on the way negative end of the spectrum – not tolerating anything in his mouth, unable to feed and definitely making no sound. While his vocabulary has grown significantly over the last year, he is still pretty much a one word guy, and unless you know him well you would not know what the words mean. Many sound the same, and others are clearly said wrong (“nana” = baby in his world even though he can make the “b” sound).
Last year I had suggested he might have apraxia given what I had heard from other families with the challenge. I felt somewhat blown off, and told to keep doing what we were doing, and teach those interacting with him what his sounds meant. Really? At some level I understand why, but am I supposed to teach everyone that interacts with him what his sounds mean? It didn’t feel very long term, but I held on to the hope that speech would “click” if we just kept working with him – and seriously, he has people talking to him all day long, so not a lack of exposure to language! This time a new SLP came in. I knew I would like her when she walked in with notes and a list of question….I so appreciate organized and prepared! I gave her my view on Peter, and then she asked me some questions. She played with Peter for a while. Then turned to me and said “Have you ever heard of speech apraxia?” I honestly turned stone cold and started to feel numb.
Childhood apraxia of speech (CAS) is a motor speech disorder. There is something in the child’s brain that is not allowing messages to get to the mouth muscles to produce speech correctly. In most cases, the cause is unknown…..there is no cure, but with appropriate, intensive intervention, progress can be made.
The rest of the appointment – speech, followed by medical – was hard as I felt the air being pushed out of my lungs and my chest hurt beyond belief. The conversation included “brain disorder”, “unknown if he can make progress”, “window for speech is closing” and more. I needed some hope so when I asked if we started right away, what would Peter sound like in 10 years. I knew that was not reasonable, but I needed a glimmer of hope. The response was that without a magical glass ball, there was no way to tell if Peter would sound the same or different in 10 years – but that we needed to try before the window of opportunity was lost. The first step is getting an actual assessment done to determine which (one or more) speech disorders he has that are impacting him.
At that moment Peter was very hyped up! After two hours plus in the car, surviving on an IKEA hot dog and ice cream, and being kept in a small space played into his antics! He figured out how to push furniture around so he could climb onto the exam table, call out “mama” and lunge with that pure faith that I will always be there to catch him. Such faith! It was then followed by taking all the rubber animals he was playing with during speech, and pitching them across the room – prepping to be a baseball pitcher? He was happy. He was having fun. And my heart was shattering into a million pieces.
What would happen to the sparkle in his eye and the big smile on his face, when he got older and realized he could not share his thoughts? When he understood that when people don’t understand him it is really because of his sounds and not because the recipient was just not capable? When he has his first crush and will not have words to express his feeling? And then my biggest fear – unable to communicate if he is being hurt. Peter is so loving, and so trusting that he doesn’t conceptualize that any injustices are being done against him….and even if he gets upset, he forgives and forgets in seconds. He can’t tell me what happens in the class, on the playground or on the bus. What happens if he is being disrespected? Picked on by peers? Bullied? If he can’t even answer my questions – he could be being abused – and I would not know. I think at that point the elephant was joined by his peers as they all sat on my chest. I could hear doors slamming closed in his future – the basis of relationships and society is communication. How does someone, who is already cognitively challenged, survive when his brain will not allow him to string sounds together to make words, or words to make sentences? He is unable to even string two signs together – so can’t put two words together in American Sign Language without some major prompting.
I will admit that while I sat in that room, trying desperately to hold on to all the progress Peter has made, it seemed so irrelevant when I looked into the future. At that moment in time I so desperately needed someone to tell me to just hold on because there was a light at the end of the tunnel – not a train wreck. Peter has gone through so much in his short 7 years – but most of what we have dealt with had the opportunity of being overcome, risky, but always a light at the end of the tunnel that we aimed for with hope.
As I talked to the doctor, I finally told him I just needed someone to tell me what I needed to work on in priority. Everyone we meet with gives us a long list of things we could or should be doing. We have more assessments in the works, in areas we know we have challenges in. “I am one mother, with one Peter…..with many specialists and too many lists of things to do. I can’t do it all, and he can’t tolerate it all. Please tell me what to work on first!” As I begged for some direction, all I could think of was all we have going on – a genetic disorder, a brain disorder, sensory processing disorder, partial hearing loss in one ear, poor vision with an eye that will need surgery, feeding challenges, one or more paralyzed vocal cords, undefined number of structural issues in the throat that may or may not be repaired, a repaired heart with a tiny hole still in it, lungs that are damaged, pulmonary hypertension that at any point could stop responding to oxygen and cause him to find it harder and harder to breath until he no longer can – he is already dependent on night time oxygen, sleep apnea where he just stops breathing, lack of hand/motor coordination, a stagger that would imply he is intoxicated most of the time, poor ankle strength and feet are becoming distorted as a result. And let us not forget leukemia – in remission, but always lurking. I knew the list went on, and did not yet include all the other “priorities” we have been given on things Peter should be achieving. Can someone just celebrate with me that he is alive, when by reasonable medical standards, it is nothing short of a miracle? Not even I could really focus on that at this point.
The doctor looked at me kindly, and it was like he could read my mind. He said –“ Let us never forget that Peter is a miracle, a true miracle. Let us not forget all he is doing, that most kids who have gone through what he has, would be unable to achieve. But if nothing else – we have two things to focus on. First – determine the list of issues in his ears, nose, throat and lungs, and come up with a plan of attack to address what can and determine how to handle what can’t be fixed. Second – full assessment of speech, and get moving on that fast”. Then he crossed to room to catch my crazy bear who was anti-feng-shui-ing the exam room. It was clear that at that moment in time he was oblivious to the chaos Peter had brought to the space, and he looked at him in a way that oozed pride. As he smiled he said “Look how much fun he is having…..look how much he loves his brother. Peter is special”. Yep, queue up some watery eyes and an extreme effort to try keeping it together.
Then we loaded up in the car, and started the long trek back to Colorado Springs…..yes, on the afternoon before 4th of July – never, ever, ever again! I really wished at that moment in time the world would stop turning so I could just digest all my thoughts and feelings in an organized and cohesive way. Now, sitting still on I-25 is like the world stopped turning, but for the two kids in the back of the car that really didn’t want to be trapped. They settled down for the long ride home when Jack got his Wendy’s meal, and Peter a pack of fries and a Starbucks. Yes, my happy juice is his happy juice, and he deserves it!
This last weekend I left all the Krause kiddies with John, and headed to Indianapolis. It was the annual Down syndrome conference for families. Experts from around the country come together. Thousands come from around the US and the world to attend the conference and learn, share, learn, and share. I had pre-selected the sessions I was going to attend – how to help Peter write, read and do math. I was so ready to be focused just on his academic progress. I wanted to still only have to focus on academics. I switched a few things around and attended a session on speech disorders. Darn – everything felt so raw! I looked at the other families sitting in the room – I was not alone, but there were so few compared to the volume of families there. I saw the relief on some parents faces as the information was shared, and they now believed their child didn’t have a clear disorder they had to deal with. At the end of the session I stood in line to talk to the SLP leading the session. By the time I got to her, my brain was mush, and I could barely articulate what I wanted to. I saw the expression change on her face as I described Peter, and she tilted her head to the side, and said it would appear that Peter has apraxia and to definitely get the evaluation done soon. I walked down the hall, to the exhibit, and bought the one book on apraxia on the publishers table.
That night I went to the large kick-off sessions that welcomed everyone to Indianapolis. Leaders and self-advocates (adults with Down syndrome) each took turns. One young man got up. Handsome with dark hair, and an adult version of Peter’s stocky build. When he spoke he tried so hard to get his words out. I saw how his face scrunched up, almost painfully, as he worked to get his sounds in order to welcome us there. He persisted – and it was beautiful! The smile on his face seemed to not only welcome us, but also pat himself of the back for a job well done. I think I clapped the hardest and loudest in this huge ball room. If this young man can get there – why can’t Peter? Why can’t Peter, one day, be up on a stage welcoming families with young children to the conference? It won’t be easy, but doesn’t mean it can’t be achieved. My eyes welled up. I thought of Peter flying off the exam table with that complete faith that I will catch him. As hard at this journey is sometimes, I have to remember that no matter how I am feeling, I better always be ready to catch Peter. He has not lost is faith in himself, in me, in those around him – and he will expect us to always be there, ready to catch him, as he lunges eagerly forward in life.
Some of the elephants are off my chest now…..but it still hurts…..in the quiet darkness of the middle of the night I still think “Why Peter? Really!! Why did Peter have to get all of this?” and I try to find comfort in knowing that Peter has super-human resilience and persistence, and that he will continue to march forward as long as he knows we believe he can – but it is hard. One of the speakers at the conference shared some words from his football coach who said “We should take what God has given us and make the most of it, because the only disability in life is a bad attitude”.
ps: One more shameless plug – Team Peter Bear is participating in the Colorado Springs Down Syndrome Association’s 2014 Buddy Walk. We invite you to join us as a walker, virtual walker, and/or donor. Here is the link to our team page – you may need to copy and paste this into our web browser if the link doesn’t work for you. Thank you!