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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

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The Journey

As I send this out this evening I am sitting in a hotel room in New York City on the eve of leaving for a long, 21 day journey. The last few days have been full of last minute details and packing. The though occurred to me over the last few days about the stark difference the packing list is between whether or not you are taking children with you. On Tuesday I leave with a friend to travel to the Holy Land on a tour of Greece, Israel and Petra. I am sad that I will be leaving my family at home but am encouraged by all of our friends who have offered to help out if Theresa needs it. It is truly a miracle in how this trip came about…through the generosity of the friend I am traveling with, his wife and the answer to prayer that they both received and felt that I was supposed to accompany him as a travel companion on this trip in her absence. I am excited about the trip. I really do not know what to expect but those who have gone have told me that I will never be the same and it is an incredible growing experience. Back to the packing topic…I recall several years ago when we made a trip to California to attend a CHARGE Conference and spend a little time sight seeing…we nearly loaded down the plane. Just the things for Matthew was almost enough to fill our van. Feeding supplies, diapers, clothes, extra stomach buttons,…
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A Player or a Fan?

As a young boy growing up in a small college town I was like most other boys in that I participated in t-ball, then minor league, then little league until I was old enough for pony league baseball. I was never very good at it, but I did enjoy being part of a team who did well once in a while. I even pitched an inning in an All Star game and did surprising well. Well in that I didn’t hit anyone and struck a few people out. This next week we will enter into the 107th post season of what we know as Major League Baseball. If you are a baseball fan, or even a fan of any sports, nothing is more engaging than the World Series. Over the years we have seen hallmark stadium names being replaced with corporate names, there have been drug and gambling scandals that have scared the game, even for a brief time ladies played the game while the boys were off to war…but the game itself has not changed. Even though it has been a while since I have actually played the game there is nothing like the feel of a brand new baseball and smell of the leather cover. The feel of a perfectly broken in glove or the solid feel of a bat when a baseball hits it in the sweet spot and the ball launches into the outfield between two fielders. Watching my own kids play the game brings back a flood of memories of…
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Willing or Unwilling?

I think I am safe to assume that most of us would not rank a visit to the dentist as one of our favorite things to do. The annual or semi-annual ritual of having ones teeth cleaned can put even the most detailed person on edge. Afterall, the visit really is a report card of the progress of our daily regime of brushing, flossing and laying off the sweets…or lack of. Personally, I have experienced the good and the bad of an office visit to the dentist. The bad included the final demise of a tooth that had a root canal many years ago, cracking in half years after that and finally progressing to the point that it had to be pulled. Many of you may be squirming in your chair at this point…I have to admit, it makes me uncomfortable even thinking about it. Why would I talk about such an uncomfortable subject? Well, this week included and annual visit for Matthew to University of Michigan Dental Clinic to get his teeth cleaned. There is no way to prep Matthew for this visit. He simply does not understand that it is for his own good…Yeah, we have all heard that before…”it is for your own good” or “this will hurt me more than it will you”. A trip for Matthew to the dentist either includes sedation, which is not always a good thing for him, or the dreaded Papoose Board. A device that wraps the body to a board so arms and legs…
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“Just Don’t Do It” – a new slogan

Just before writing for this blog for the week we witnessed yet another time a behavior that Matthew has been developing over the past year…doing something he knows is wrong and then punishing himself for doing it. It started with his way of getting our attention, his way of letting us know: “I know you don’t like this…but I get a reaction when I do it”. He began pinching us to get our attention and progressed to pinching when he was mad or upset. We started to correct him and discipline in the form of telling him “nice hands” and having him fold his hands nicely as a form of time out. Now he pinches and self-disciplines by folding his hands and flashes his trademark smile. His newest thing is to push his baby sister Sarah down and then run to his bedroom to take the mandatory time out by setting the timer and taking a seat in the appointed chair. I have the same response you may be having…telling myself that he knows what he is doing but decides to do it anyway. He knows that there is consequences but doesn’t care if he hurts someone or something. He has figured out that there are consequences but hasn’t figured out that the things he is doing are serious grievances. He hasn’t come to the point that by doing the things he does hurts other people…not only physically but emotionally. As I was reflecting on what I was going to…
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Where are your flies?

Our church congregation began a new sermon series this week and have embarked on a look at the Gospel of John. The series has been titled “A Beautiful Life”. I can imaging from a non-believers perspective the title may sound cliché and maybe even a little naive. But, coming from a family who are experiencing the heartaches and joys of raising a special needs child, being able to say that we have “A Beautiful Life” does not just happen. It is the total sum of all of our experiences, including pain, rejection, worry, mis-understanding and joy, miracles and being able to see the very fingerprints of God in situations and events. I am convinced that the more we experience  trials the more we can clearly see the joys and are able to be blessed as a family and individually. This is the very thing that our pastor spoke about in the area of faith. Faith in the form of a verb, or action and not as a noun, or thing. It is no secret that I enjoy the outdoors and especially fishing…so it should be no surprise that I am going to share a quote from a book about fishing and faith. One reason Paul caught more fish than anyone else was that he had his flies in the water more than anyone else. “Brother,” he would say, “there are no flying fish in Montana. Out here, you can’t catch fish with your flies in the air.” Norman Maclean, A River Runs Through It I…
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Learn or Live?

I stepped outside this morning into the crisp cool air that smelled of wet grass and leaves. You know, that fall smell when you can make out the faint smell of apples and a hint of snow. We have been hit with a taste of Fall on this, the last summer holiday weekend in Michigan. A stark contrast to the 90 degree weather we had the last weekend. With the Fall comes the fresh new start to a school year. This past week several area schools started, if not actual classes, at least the football season. We have been busy at home gearing up for our school year by setting goals and schedules which will begin this next week. With all of the “school” buzz in the air I thought it would be appropriate to take a moment to thank those around us who work with our kids…the teachers and youth leaders who give of their time and open their hearts to encourage, lead and help shape them. I especially want to thank those who work with our special needs kids. They hold a special place in our eyes with their willingness to do what they do even though at times they may get pinched, bitten, scratched, yelled at, spit on or just plain ignored. I sometimes am in awe because they do this because they want to. Teachers must have a different gene in them to do what they do…a gift that allows them to stoke the curiosity and make…
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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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