Friday, November 02, 2012

Special Needs Spotlight: Jameson

 
    

My name is Kevin Timpe. My wife, Allison, and I live in Idaho where I teach philosophy at a university. We have two children—Jameson (4) and Emmaline (2)—and a third on the way (currently nicknamed Scout until we find out if it’s another boy or girl when she/he is born).  When Jameson was born, he had a few physical ‘quirks’ that we learned were often correlated with genetic abnormalities. We talked his doctors into doing a genetic screening and we found that he has a translocation on chromosomes 5 and 6—basically, parts of those chromosomes played “Red Rover” and switched locations. When they were doing a more fine-grained test to make sure the translocation was balanced (that is, no material was duplicated or left out) rather than unbalanced, they also discovered a deletion on one copy of chromosome two.  Supposedly, these two genetic abnormalities are unrelated.  Unfortunately, there’s been no previously diagnosed case of his deletion, so while we have a diagnosis, we have no prognosis. Jameson has fine and gross motor delays, low muscle tone, low registration, and a pretty significant speech delay. He’s been getting OT, PT, developmental, and speech therapies for most of his life, and his courage and resolve make me proud.

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Miggy:  Kevin!  This is so exciting; you're the very first dad I've ever interviewed on the spotlight.  So welcome.  Now, can you take me back to the day you knew Jameson would have special needs?  Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now?

Kevin:  There wasn’t actually a first moment.  He was already receiving physical therapy for wry neck when we got the diagnosis about his translocation.  I remember getting that phone call; I didn’t know how to process it and kind of shut down. So this was probably denial.  The diagnosis of the deletion was even harder, because then we knew he’d have special needs, but just didn’t know what they’d be.  I was heartbroken and angry.  I’ve come to deal with those emotions better now, especially the latter. But it’s still hard for me when I see other kids his age doing things that I don’t know if he’ll ever be able to do.



Miggy:  Explain how your Jameson's special need affects your day-to-day life?

Kevin:  This is hard to answer—it’s a question we’ve been asked quite a few times in meetings with therapists—because Jameson is our oldest and there’s not really any aspect of life that it doesn’t impact. When he was one year old, we moved from San Diego to Idaho so that we could afford to live on one salary and devote more time to his care.  He’s in group therapy four mornings a week about 20 miles away and attends a developmental preschool those same afternoons.  We can do most things in life, but it takes more time, more energy, and more patience—the latter, I’m sad to say, doesn’t come naturally to me.  Even tonight, going Trick or Treating with our friends, we had to go much slower than the rest because of how hard it is for him to walk.  I know it’s a small thing, and I certainly understand that the others don’t need to walk slow with us but it’s hard for me to see him miss out on even some of these details of life.  (And major props to Stephen and Micah for taking the slow march with us! It meant a lot to me.)  Most people don’t understand the emotional toll that the daily impact takes on us.  I remember once talking with some friends about how, despite being 4 years old, Jameson had never been able to say he loves us.  Our friends said “Of course he loves you,” not knowing how much we needed to hear it despite knowing it.  When we finally heard those words from him a few months ago, it was an amazingly precious thing.  But not knowing what his favorite thing he did at school was or what he wants for dinner or what he dreams about at night is difficult for me.  We can tell there’s so much going on in his head that we just want to be able to see in there and experience it with him!


Miggy:  What are the biggest worries you face for Jameson?

Kevin:  For a long time it was if he would ever be able to talk, to communicate his needs and thoughts to us.  But he’s made great strides in the past year or so talking.  As I mentioned before, he’s finally able to tell Allison and I that he loves us, and lately he’s been asking for “rasp’erry milkshakes” a lot.  It melts our hearts, so of course we give in.  Now our biggest worry is his long term care.  Will he ever be able to live on his own?  Who will take care of him if we can’t in the future?  I know that all parents worry about some of these things, but it’s different for those of us with special needs children in a way that I don’t know that others who aren’t in a similar boat can fully understand.





Miggy:  Tell us something special about Jameson.  A special story, a personality trait or just something others might not know.

Kevin:  Despite his disabilities, Jameson’s a pretty easy going kid, willing to try just about anything. We’ve been fortunate to be able to travel a fair bit with him.  He’s been with us to Mexico and Canada. We even lived in England for 10 months and traveled to about 13 countries in Europe two years ago. Granted, breaking into the NHS to get him therapy was not the easiest chore in the world.  But whether it was taking a 12 hour flight, walking around an Italian piazza, or riding the Tube in London, he’s up for any adventure.  Plus, he’s got an amazing ability to attract some wonderful and caring people into our lives.

Miggy:  Now for a lighter question, have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Kevin:  Because he has low sensory registration, he doesn’t always feel when he’s hurt himself. There have been numerous times when we’ve been out in public and he’s fallen and bloodied his lip or forehead.  As the blood streams down his face, people will ask “Is he ok?” and look at us strange when we say “Yes, he can’t feel it.” Of course, this also means that if does cry from getting hurt, we know it’s serious.



Miggy:  How can people best approach or respond to your child? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Kevin:  Since Jameson’s disabilities aren’t visible to most people (especially if he’s not walking), many people don’t know that he has a hard time talking.  And so we get lots of inquisitive looks when people ask him things and he doesn’t respond.  I know different people have different feelings about this, but I don’t like when we’re out in public and people that don’t know us come up and ask “what’s wrong with your son?”  Sometimes when people ask in public, it seems like it's more to satisfy their curiosity than out of real concern for Jameson.  I want people to approach him as a person, not a curiosity.


Miggy:  What is the biggest lesson you’ve learned since becoming Jameson's dad?

Kevin:  Most days, I don’t feel worthy to be Jameson’s father.  He’s so very loving and sweet.  And he’s been so very patient with his problems.  The etymology of ‘patience’ (sorry, I’m a bit of a nerd) is the same root as ‘passion’—to be patient means to suffer well.  I’ve had to learn to be patient, to figure out how to love him (and his sister and my wife) as they need to be loved and cared for, not how I want to show them my love and affection.  When thinking about Jameson, I’m often reminded of my favorite Bruce Cockburn song, Lovers in a Dangerous Time, which has the following absolutely phenomenal lyric: “Nothing worth having comes without some kind of fight/Got to kick at the darkness ‘til it bleeds daylight.” That’s a lesson I have to remind myself of most days—I have to keep on kicking at the darkness, for him.

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Kevin, thank you so much for sharing your adorable family, especially Jameson, with us.  I appreciate your honest perspective--yes sometimes it is hard seeing your kid next to typical kids knowing there are things they will never be able to do.  And I love what you said about patience... I think we forget that sometimes life requires a little (or a lot) of suffering, often through no fault of our own.  Thanks again Kevin...it was great to hear a dad's voice in this journey.  I hope this inspired other dads to share their perspective as well.  

As always, if you or anyone you know would like to participate in the special needs spotlight please email me at thislittlemiggy at gmail dot com.  And if you have emailed but haven't heard back, please be patient!  

Have a great weekend!

8 comments:

  1. As always, Miggy, another fabulous spotlight. Jameson is a darling little guy. Thanks for introducing him to us...and I really did appreciate a "Dad's" perspective.

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  2. beautiful! I really love these spotlights.

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  3. I think Kevin's line, "I want people to approach him as a person, not a curiosity." is one of the best statements I've ever read/heard. There are SO many people in the world that need to internalize his words! Thanks so much for sharing!

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    1. Adrie--I agree!
      Well, well said.

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  4. Anonymous2:21 AM

    Jameson is truly blessed by God's hand to be placed in the care of you, Kevin and Allison. It is obvious that you, his parents, were carefully chosen to show him love and support his needs here on earth. You are so worthy to be his caretakers, his helpers, cheerleaders, supporters, prayer warriors, nurturers, providers and coaches in this earthly life. These roles you fulfill in his life shine through your excitement for his "raspberry milkshake" milestones. It takes a strong heart and mind to be able to open up and tell the emotions and experiences you have journeyed through. Your dedication to Jameson's well being is intensely inspiring. All 5 of you are children of the King!

    2 Cor. 12:9,10 – “(God) has said to me, ‘My grace is sufficient for you, for power is perfected in weakness.’ Most gladly, therefore, I will rather boast about my weaknesses, that the power of Christ may dwell in me. Therefore I am well content with weaknesses, with insults, with distresses, with persecutions, with difficulties, for Christ's sake; for when I am weak, then I am strong.”

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    1. The perfect scripture. People don't often quote scripture on here, but I wish more did....thank you.

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  5. Thanks everyone, for the kind comments. And thanks Miggy for running such a great blog!

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    1. Thank YOU Kevin.
      Hugs to you and yours!

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