A Father's Point of View

Moment of Un-Silence

noreply@blogger.com (FatherPOV) — Fri, 04 Feb 2011 15:49:00 +0000

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 – especially 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.

Walking Backwards

noreply@blogger.com (FatherPOV) — Thu, 20 Jan 2011 03:30:00 +0000

Download now or watch on posterous

walking backwards.3GP (1861 KB)

My son learned to walk backwards tonight. God help us now Ha-Ha-Ha!!!!
Sent via BlackBerry

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Being a Strong Advocate: A Success Story

noreply@blogger.com (FatherPOV) — Sun, 16 Jan 2011 18:14:00 +0000

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.

Creativity – We need more of it!

noreply@blogger.com (FatherPOV) — Wed, 12 Jan 2011 20:39:00 +0000

Creativity is everywhere – we need more of it. Sir Ken Robinson, a noted British educational critic, thinks 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.”

Meaningful Time with my Son Through Creativity

noreply@blogger.com (FatherPOV) — Mon, 10 Jan 2011 15:51:00 +0000

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 an 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.

2011: I Call A Do-Over

noreply@blogger.com (FatherPOV) — Wed, 05 Jan 2011 05:18:00 +0000

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.

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Helping Their Future Flourish

noreply@blogger.com (FatherPOV) — Sun, 02 Jan 2011 21:28:00 +0000

"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 different 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.

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FatherPOV 2.0 - Beta Release

noreply@blogger.com (FatherPOV) — Sat, 01 Jan 2011 22:46:00 +0000

Happy New Year!

Happy New Year everyone! I am not one to make New Years resolutions. I have never known anyone that has actually full-filled a resolution or even made it past the end of January. With that thought in mind it is a little ironic that I begin my "point of view" blog again. Many of you read my WordPress hosted blog of the same name. Well think of this as version 2.0! When I originally set out with the old version I had a vision of grandeur towrite meaningful articles that would impact my readers. Maybe it would calm the fears of a new parent facing the newly confronted diagnosis of a complex medical child.