Thursday, August 16, 2012

Some Days Just Make Me Smile!!

I know I am long overdue to finish blogging about our trip to California.  I also have some questions to answer from readers and I need to finish a post on NACD...but every once in a while something happens that just makes me smile and I have to share.

I guess I have to start by explaining the nature of Sam.  Sam was considered non-verbal until about the age of 6-7 years old.  He had sounds, he could say "NO" and he had a few words but he was not using speech to communicate his wants or needs or what he was thinking about.  Over time and a lot of repetition Sam developed memorized chunks of speech like "I want (fill in with whatever he wanted to eat or drink at that time)...which allowed him to make us aware of his wants and needs.  He did not answer questions appropriately and would basically shut down if someone tried to get him to talk by asking questions.  Sam's hearing issue didn't help the matter either, due to his conductive hearing loss he didn't really make much of an attempt to understand what people were saying to him.  It was a lot of work and he relied on his visual interpretation to get him through his day.  Sam was a man of few words and unfortunately when a child doesn't speak or when a child doesn't hear well and therefore does not answer appropriately people generally make an assumption about their ability to think, process, understand and function.  Sam is usually considered to be profoundly affected.  It doesn't seem to be one diagnosis or the other that brings people to that assumption but instead the sum of all his diagnosis or challenges. He's dealing with a lot. Now I'm not in denial that Sam has a cognitive impairment but I do struggle with the level of cognitive impairment he would be diagnosed with or people would assume he has.  Sam has Down syndrome, a brain injury, conductive hearing loss, apraxia, probably a form of aphasia and who knows what else...and all of these make speech and communication difficult.  Since receiving his hearing aid Sam has a huge vocabulary (words he knows and can attempt to say) but it is his ability to pull out those words when he needs them that he struggles with.  Sam likes to talk at you but not necessarily with you.  He wants to tell you what he is thinking about or seeing but he doesn't really thrive on the back and forth exchange which makes up typical communication.  Sam would fail miserably at IQ testing and for that matter any testing.  He is not a command performance kind of guy.  To really understand what Sam understands you have to really get to know him, spend time with him, observe and communicate with him.

When I talk with Sam I work with him to communicate in a way that he is able.  It's not a typical conversation like I would have with Ben and Danielle, it is different, not wrong...just different.  I have always wanted to spend just a 1/2 hour in Sam's brain, hearing how he hears, processing how he processes, speaking how he speaks...that would tell me volumes.  But I can't do that so I instead imagine what it must be like and I use Sam's reactions to help guide me.  Here's how that imagining goes:  I think Sam likes to talk at you because it is a ton of work for him to put what he sees or thinks into words.  Sam struggles with oral motor issues, articulation and also keep in mind that he does not hear his own speech clearly. So Sam sees a police car, he knows what it is and now he has to pull that word out of a brain that struggles to find the right words, now get his low tone oral motor muscles to function correctly so his tongue and lips help form the word, control his breath and vocal cords and then hope his utterance is understandable. It's a ton of work just to get all those steps Mom says something.  Argh...Sam's brain is still trying to put the thoughts and motor muscles together and now she wants me to stop that process, listen and try to interpret a sound that is missing certain tones and then put those tones together into words and because I'm a visual kind of guy I'm going to try to give that word a picture to help me process what she is saying correctly.  Okay that was one word but I know she said more, hmmmm...what were they??? And now she has that look like she is expecting me to say something...okay...I heard light and I know police cars have lights and sirens but my brain instead pulls out the word loud. I say it and now Mom looks confused and it looks like she is going to shake her head.  But then because Mom is thinking like I think she says, "Police cars have lights and a siren that is really loud"  And I smile and say as loud as I can "YES". This is why I talk to Mom because she gets me.  This is a typical conversation on a typical day with Sam.

So how many people are going to come to that same conclusion or are they instead going to say or think...I just don't understand him and I don't think he understands me?  Which in turn causes people to talk or attempt to talk to Sam less and less.  I often feel I am having a very one sided conversation when I am explaining chores or activities to Sam.  I at times wonder if I am really getting through and then we have a day like the one I am writing about.

Sam goes to the YMCA for aqua therapy.  I have gone over giving them his card and getting a key and I have explained the process of getting ready for the pool.  I was thrilled when Sam began to get his card out of the bag, say "Hello" to the person at the counter and hand them his card with two words "key please".  Of course the check in staff had to get used to Sam's need to tap the card on the counter a few times depending on the day and if that OCD function was needed to proceed to getting the key.

Due to Sam's physical issues with Perthes we have gone through different phases of his ability to get ready for the pool.  Sam comes into the YMCA in his wheelchair and his ability to stand or walk is still very limited but he will be starting with a new respite provider and I would like him to independently get ready for the pool and to get changed to come back home.  I have verbally gone over the steps and I have had to assist Sam as he rehabed  from surgery but I felt it was time to raise the expectation level.  Keep in mind...I could ask Sam if he knew what to do and he would answer inappropriately.  I could ask him questions about the steps he would have to perform and he would again possibly answer sometimes you just have to jump in.

A person in a wheelchair usually requires a bench seat in order to transfer and have a stable surface to dress or undress.  On this day the handicap access room was available and I was feeling empowered.  So I wheeled Sam in and I said "It's time to get ready for the pool...put your swimsuit on...get out your towels and goggles...put your clothes back in the bag...tell me when you are ready."  I walked into the hall and closed the door.  I knew I had given a whole lot of instructions to a child that struggles with hearing and auditory processing and I walked out with him sitting in his wheelchair and his bag on the back...but I did it anyway.  As I stood outside the door I said a little prayer and I tried to listen.

I could hear him moving around and beginning to talk to himself.  I couldn't make out what he was saying but he wasn't yelling so I took that as a good sign.  Sometimes it was so quiet and I so wanted to peak in but I knew I wasn't giving him enough of a chance.  So I waited and I thought about all the possible outcomes in this situation...but I know that this 11 year old little man that struggles with speech, that struggles with hearing, that struggles with physical limitations....understands and can do so much more than anyone would give him credit for.

As I was lost in my thoughts...I suddenly came back to reality when I hear Sam yell "Ready Mom".

I opened the door and Sam was sitting in his wheelchair with his swimsuit on (the right way), his towels and goggles in his lap and all of his clothes tucked away and zippered into his bag.  His smile was from ear to ear, I choked back the lump in my throat...I smiled back and said "You did awesome...are you ready to go swimming?"  Sam looked at me and said the words I have come to know whenever a new major milestone is reached "We did it".  I replied "We did Sam, we did it".

Sam repeated this feat when we left the pool and I'm not afraid to point out that a wet swimsuit is a lot harder to get off and yet even that did not deter him from his goal. When he had originally gotten into the pool I looked into the swim bag and noticed that he had pulled his socks off and they were now inside out tucked in his shoes, his shirt, shorts and underwear were also inside out in the bag. I had left them that way and was even more surprised to see that everything had been turned the correct way before he put them back on.  All he needed help with was tying his shoes.

We went to the counter, Sam tapped the key...handed it to the young man and said "Thank you" and he attempted to say "Have a nice day" but it got jumbled in the attempt so I repeated it for him.  The young man smiled, wished Sam the same and gave him his card.  Sam told me "Put in bag" "Zipper Mom" and I quickly realized that Sam's accomplishment was also my accomplishment.  I had successfully raised my expectations, I had taken a chance and I had believed in a little man that so many would have told me to doubt.  As we walked outside our smiles were in sync and our pride in each other was shown in our actions instead of our words!

Henry David Thoreau 
If one advances confidently in the direction of one's dreams, and endeavors to live the life which one has imagined, one will meet with a success unexpected in common hours.


  1. Hi Sue! I just had to comment and let you know how wonderful you truly are. I have one little girl on the spectrum and I can tell you without a shadow of a doubt that it was not until I halted my own mind processes so that I could understand those of my daughters, did I truly begin to "get her" in ways that I could finally assist her...all the time up to that point I was doing nothing but moving in circles. We are truly blessed to have such a full life of genuine drive and compassion for our children. Every day I think about how shallow and empty my life would have been had I not been given such a strong sense of meaning and purpose to slowly fill my little girl with, day by day. Thanks again for such an encouraging post!

    1. Maranda, I know and feel exactly what you are saying. I have always said that Sam has taught me more than I will ever teach him and my life would be so empty without him. Keep enjoying your journey with your daughter and thanks for reading the blog!

  2. Loved the way you explained something so few have the chance to think about or directly experience.

    I think it would do us all some good to be more mindful that there are different ways of functioning in this world with others--like you said "not wrong, just different."

    But that would require patience and I'm afraid we're losing that thanks to how fast we're now able to access so many things.

    Hugs for you and Sam--he reminds me of my nephew.

    1. In this crazy world...we all need to slow down, listen more and take the time to get to know each other!!

  3. Just wanted to say..thanks. You always are able to write explanations of how Sam works so perfectly and understandably to others.

    Patrick is sick at the moment. I wish I could go into his brain also and know exactly how he thinks and perceives things. Wish I could have him tell me what he is feeling and thinking; instead of my observing all the time.

    Thanks for sharing Sam's world with us.Keep blogging.