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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

Parenting Special Needs Children

A mom or a mule?

Today we will begin a new chapter with Matthew. In another epic battle with the bureaucracy that is our healthcare insurance system Theresa was able to hear those comforting words: “You have been approved.” Matthew has been granted a new communication device. One that we have field tested for a month or so and Matthew did really well with. Using the device along with sign language, we had a great time “listening” to him as he explored the pre-installed items and breezing through the familiar pictures and items we were able to input. After nearly a year of red tape it came to a last ditched letter and conversation with an actual person. After hearing the words of approval the insurance representative commented to Theresa in an off-the-record fashion than she admired the way Theresa was advocating for her child. That phone conversation earlier in the week was followed by two more from company representatives that make the device wondering what she did and what she said to go from a “no” for nearly a year to a “yes” and shipped in just a few days. I can assure you that the following quote best describes a lot of parents who have been entrusted with a special needs child: “From where I sit, you’re way ahead of the pack. You’ve developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule…. you are the…
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"He shoots, he scores…."

While doing some casual reading this week I came across an article talking about the upcoming hockey season. I know it is a little early to be talking hockey with baseball season still in full swing and football right around the corner. I couldn’t help but relate to the following quote I found later from columnist Doug Larson: Ice hockey is a form of disorderly conduct in which the score is kept. That about sums up the life of a parent of a special needs child. Special needs or not we all have been mortified with the unexpected behaviors of our children when out in public. When you put a magnifying glass on the situation when your child has special needs the feelings can be bigger…Here an example of being under a huge magnifying glass. A few words from Hockey Hall of Fame goaltender Jacques Plante: How would you like a job where, every time you make a mistake, a big red light goes on and 18,000 people boo? We have been there…maybe not as many people, but the feeling has been the same. I am sure many of you can recall “an episode” from your own lives. I can remember several and I am sure if I asked Matthew’s siblings they could recall their own moments. The time Matthew threw his DVD player in the pool at a hotel. People looked at us horrified, wondering what the reaction from us would be. The time Matthew was inconsolable in a restaurant…
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Over the Fence

I never cease to be amazed at how such small things can excite and keep Matthew entertained. Picture a fence, or railing or any other type of barrier that is intended to separate people or animals from things or vice versa. For whatever reason, Matthew finds these barriers a personal challenge in his life, something to conquer and defeat.  How Matthew views “walls” in his life has made me reflect this past week about the walls in my own life. How do I view them? Do I stall and take the advice from the world around me and look for the easy way around? Or, better yet, do I look to find someone else to scale the wall for me. As I was reflecting this week a few quotes guided me along:  “Success is going from failure to failure without losing enthusiasm” Winston Churchill  occasionally Theresa and I are complemented on how we are dealing with Matthew and our three other children as if we have this child rearing thing figured out. I can assure you that we are not perfect and have many failures to show for it. What I can say is that we strive to not lose the enthusiasm. The only way we do that is to lean on our Heavenly Father for strength. We know that He will supply us with what we need to make it through. I have to admit that the following words made me smile a little…knowing that even though this woman served the…
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Out of Juice

I will occasionally use this blog to share some of the behaviors that we CHARGE parents face on a day-to-day basis with our kids. Some of the other readers of this blog who deal with other syndromes and disorders will concur that the obsessive compulsive behaviors can be the most challenging. Like many situations, they are challenging and frustrating first, then we are able to find humor in them later. If we didn’t somehow find the humor, it would drive us all to the edge of sanity! One of the many alterations we have made in our home to stay one step ahead of the little genius figuring out various locks and means to keep him out of areas that are a danger to him, we have had to screw every last register vent and return air grill with numerous screws to keep puzzle pieces and any thing that will fit out. Also added to the backs of all vents is 1/4″ hardware cloth, this added after he found out that many things could still fit through the slats. Matthew’s obsessiveness with stashing keeps him ever looking for new places to stash things. He seems to keep his prospective cache’s to those that provide a small slat of slot he can slip something in to. Items pulled from register vents in our home: puzzle pieces pieces of puzzle pieces diapers photos books keys bra socks sweat pants silverware mouse pad More recent stashing places; the piano, our oven, behind the fridge and the small…
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What do you see?

Now to him who is able to do immeasurably more than all we ask for or imagine, according to his power that is at work within us, to him be the glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen. Ephesians 3:20-21 Paul, in a prayer for the Ephesians sums up the prayer with words about not limiting what God can do and that His work continues until the very end. When you look at the picture on the left what do you see? A bunch of scribbles and lines? At first glance I thought the same thing. What I see now after knowing “the rest of the story” is countless hours of work and determination to express oneself. I see, with the help of the right people put in place, I see expectations blown away, more accomplished than what could ever be hoped for. Look closely again…What do you see? I will give you a hint…look for the faint formations of letters. Can you see them now? M-A-T-T-H-E-W We were blessed this week with Matthew taking a piece of chalk, and with a little prodding and help from Tracey, one of the right people in Matthew’s life, began writing words on his chalk board. This is just another example of not placing someone in the proverbial “box” and just accepting the prognosis of what the “normal” expectations of people “just like him” will amount to and be able to do. I know there are many more examples out there…
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It's in the Details

As this week ends our family is winding down the activities of our involvement with one of our county’s community Fairs. It is great to see the 4H kids in the show rings showing their animals, but it was the flurry of activity that I observed in and around the barns that left an image in my mind. The many bales of hay, water buckets, washing and scrubbing of animals, scooping poop and the endless highway of wheelbarrows exchanging one cargo (poop) with another cargo (bedding). The Fair for many of these kids is a chance to show their animals and have a little bit of competition with their friends. It is also a chance for family and friends to see them compete in the show ring. It made me think of the milestones that have been reached with Matthew…crawling, walking, communication with sign, reading, spelling, etc. We can now look at these as accomplishments, but they are not the end. If we limit what the possibilities can be, we stop living. A great quote I read and I am reminded of often is from author and Newsweek columnist Anna Quindlen (A Short Guide to a Happy Life); “Life is made up of moments, small pieces of glittering mica in a long stretch of gray cement. It would be wonderful if they came to us unsummoned, but particularly in lives as busy as the ones most of us lead now, that won’t happen. We have to teach ourselves how to make room for them, to love…
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Can You Lie Down?

He maketh me lie down in green pastures… Psalm 23:2a Most of us throughout our lifetime have heard this memorable psalm. There has been much written about this epic psalm but the best commentary, or explanation of it that I have read is by author Phillip Keller who has a unique perspective of actually attending to and shepherding his own flock of sheep. Mr. Keller has taken the 23rd Psalm line by line, each line making up a chapter of the book entitled A Shepherd Looks at Psalm 23 (Zondervan). He writes in chapter 3: The strange thing about sheep is that because of their very make-up it is almost impossible for them to be made to lie down unless four requirments are met. Owing to their timidity they refuse to lie down unless they are free from all fear. Because of their social behavior within a flock of sheep will not lie down unless they are free from friction with the others if their kind. If tormented by flies or parasites, sheep will not lie down. Only when free of these pests can they relax. Lastly, sheep will not lie down as long as they feel in need of finding food. They must be free from hunger. Later in the same chapter he talks about the role of the shepherd: The unique aspect of this picture is that it is only the sheepman himslelf who can provide release from these anxieties… …It is acutally he who makes it possible for them to…
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What’s in a Kiss?

We will celebrate with Matthew on Monday (June 28) his 9 year birthday. We can truly say that we have been blessed beyond words with all of the things we have learned, both good and bad with having someone like Matthew in our family. He has given us very unique chances to feel the fingertips of God in many ways. A few days after this event we will celebrate the July 4th holiday. For the past 9 years this holiday has brought a totally different emotion for Theresa and I. Matthew was placed in the NeoNatal intensive Care Unit and Theresa was trying to maintain her bedside vigil and recover from an emergency C-section. We agreed to have her spend one night at home. We will always remember the morning of July 4, 2001 when we received the phone call that informed us that our little bundle of joy was hooked up to a ventilator, life support, during the night. Our hearts sank and our spirits were crushed as we were informed that Matthew was beginning to give up his fight to breath and process oxygen effectively. We were told that the ventilator would provide him relief. We visited and hung out with him most of the day. We wanted to provide some “normal time” to Hannah and Megan, and decided to take them to our small town fireworks. As our girls frolicked in the grass with sparklers, Theresa and I sat in the car, crying and praying for our little boy. Praying that the…
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A Healthy Deposit

You may have noticed that I have skipped a few postings. The weeks leading up to a week vacation can get so filled with last-minute things and lists that need to be done. I gave myself the permission to take a break from writing as well to be able to reflect and focus on where this blog and book are going and what direction to take to get there. Thanks to all of you who have submitted feedback. I hope to include the ideas in upcoming entries. Check out the prayer list in the tag lines under the picture of Matthew in the car. If you have a comment please feel free to speak up. While returning from a week of fishing I had the opportunity to drive through my old neighborhood. It is amazing how a flood of memories can come rushing through your head just looking at the familiar surroundings. Everything seems so much smaller, the yards, the houses, the sand lot where we played baseball, the hill we use to slide on, the skating rink, the walk to school. The only things bigger where the trees I used to climb as a kid. I sat there for a few moments recalling the time my bare foot got caught in the spokes of my brothers bicycle while I rode double on the handle bars. The times my brother would use me as a crash test dummy with a new design for a go-cart. The time I was Evel Knievel and tried…
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