04 February 2011

Moment of Un-Silence

Wow, it has been quite some time since I have blogged. I have sent things into my micro-blog from my phone – but have been so busy with appointments. I am going to try and do better. It seems our appointment load is lightening up and I will have a little more time. Today I want to share something that happened yesterday during my son’s aural rehabilitation therapy. It was a defining moment for me, as a father realizing what this journey is all about.

Yesterday we had our weekly Aural Rehab Therapy. There has been some excellent progress made, especially noticeable since the settings were altered – something we had questioned for awhile. The therapist had my son sitting in a high chair and playing with various kids musical instruments. My son  was very engaging and interactive – especiallyMusical Instruments beating on a drum! As my son  plays the therapist would make various sounds - The Ling 6 sounds in addition to what I call a throat trill – a high pitched rolling sound. The Ling 6 sounds are particular sounds that occur at particular speech frequencies or pitches. She would make them randomly looking for auditory response. Over the past 8 months there have been lots of, “was that a response?” Never that definitive ah-ha moment that everyone we have spoken to over the past several years has mentioned.

19 January 2011

Walking Backwards

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My son learned to walk backwards tonight. God help us now Ha-Ha-Ha!!!!
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16 January 2011

Being a Strong Advocate: A Success Story

Over the past 2 1/2 years my wife and I have had to wage many battles in the name of advocacy for our son. None of those have been more important or as frustrating than the advocacy surrounding his hearing. It's been amazing how much resistance and how many roadblocks we've encountered on a matter that has been deemed so important to the success of the child's development. Despite these hurdles we have continued to diligently advocate and actually achieve a few small victories. While we are far from winning this particular battle, we feel for the first time we are on the correct path toward success. This segment of his hearing battle started a year ago. Due to the complexities of his airway ENT was able to validate his hearing as a secondary priority. They truly had a valid point that we accepted and understood but we refused to concede. The focus was the first principle of medical priorities known as the ABC's of medicine. These are airway, breathing, & cardiac. I remember the pivotal discussion that would become our first small victory. We explained how we understood and respected their logic based on the ABC s but added that our son too needed the ability to learn his ABC s. We raise the notion of adding a second ENT that would focus solely on hearing and the idea was received well, put into effect and ultimately worked out and my son's favor. Our initial ENT specialize in airway and the addition of a second EMT provided us with someone who specialized in the ears and hearing. So far it is worked out wonderfully, but had we not continued to advocate & provide a strong case our son would not be in this scenario today.

12 January 2011

Creativity – We need more of it!

Creativity is everywhere – we need more of it. Sir Ken Robinson, a noted British educational critic,  Gillian Lynnethinks that as a society, we waste creativity systematically. His belief is that we boil the creativity out of people as children. In school. We literally punish them for straying outside the lines, when outside the lines is the very place where creativity lives. Creativity helps develop skills that allow us to problem solve and think critically. Without imagination – which is the process that gives creativity life – how many problems would remain unresolved? There is even a cliché about coming up with creative solutions.  Labels are also a system that is stifling creativity. Let me share this story by Sir Robinson as told by Dr. Larry Johnson during a 2007 speech entitled “Why Creativity Matters.” 

10 January 2011

Meaningful Time with my Son Through Creativity

Almost a week has past since my last posting. This is not exactly the fresh start I had envisioned. I do  not think I could have ever anticipated the intensity this new year would bring, just a mere nine days in. At least I can proudly say that the past few days have been quite the opposite of the first four. My son has really been feeling well and very active. It has been such anCreative_Crayons amazing opportunity to engage with him. He has been playful and loving, full of laughs and smiles. While it made it difficult to stay focused on my commitment to myself to be more creative this year it was certainly a worthy reason. In reflecting on this though, in a sense though I was still being creative. I was creating a more cohesive, loving and intense bond with my son. We created new ways to play and communicate. We recognized and developed new skills while strengthening old ones.  I followed him around the house – over and over – as he is still mastering the art of walking. I was able to look at things from his eyes, his discoveries he made. It was incredible and it opened my eyes.

04 January 2011

2011: I Call A Do-Over

Wall Calendar 2011 (best of...) | Falinaptár 2...              
My absence yesterday and today have been related to issues with my son. He has stopped breathing 10 times in the past 32 hours. This is an unexplainable and recurring phenomenon. It wipes him out after the episodes and quite honestly, while I am calm and collected during the episodes - the aftermath is not. It is an adrenalin rush I could go without. The doctors call it apnea, I call it hell! 2011 is really off to a horrible start. Despite all my efforts to channel the negativity away it has seem to found a path to me. I refuse to let this drag me down this early in the year.

02 January 2011

Helping Their Future Flourish

"Your future doesn't lie ahead of you, waiting to happen. It lies deep inside of you, waiting to be discovered."

                                                                     - Anonymous

I stumbled across this quote on Twitter by @mylivingpower last night. Two thoughts immediately  raced through my mind. First, was my son and what the future holds for him. Secondly, was how very The Road Aheaddifferent my life is than I ever imagined. That is not a negative mind you, just how many people do you know plan to have a child with complex medical needs that statistically you are going to outlive? While life is not easy, by any stretch of the imagination, it is very much enriched by the people we have encountered because of our path and also by my son. He has a patient strong fighting spirit about him.