Wouldn’t it be wonderful to live in a world in which you didn’t feel pain? Before I had Matt, I would have answered yes.
Matt has an incredibly high tolerance to pain. When he was a beginner walker, he would crash into the wall, get an egg sized bump on his head and never feel the pain. That is when I learned that we all feel pain for a reason: to stop doing harm to ourselves! For example, if it doesn’t hurt when you walk into a wall, you’ll not quickly learn to stop doing it.
Matt did and does feel pain. He certainly squawked from pain when Sally first started working with him. But he was oblivious to things that would stop most of us in our tracks, like walking full speed into a wall.
Although we are not sure why Matt started life with this high pain tolerance, his OT believed he had Sensory Integration Disorder as that would explain that and many of his emerging, worrisome behaviors and reactions to the world.
Having been given yet another piece of the puzzle, I went off to research and learn. In essence, Sensory Integration Disorder (also called Sensory Integration Dysfunction, Dysfunction of Sensory Integration and Sensory Process Disorder) is the neurological inability to integrate properly the seven (yes, there are seven!) senses. These include sight, hearing, taste, smell, touch, proprioception and balance/coordination (vestibular sense).
We all come into the world needing to learn how to integrate the sensory information bombarding us constantly. Unfortunately, it seemed that Matt was not integrating the sensory information as he should. Beyond his high pain tolerance, some of the other behaviors believed to be linked to his sensory integration disorder are his hand flapping, batting at his mouth, need for movement – like spinning, tossing things in the air, and toe walking.
His OT also told us that while all of these behaviors are the behaviors exhibited by some children with autism that Matt does not have autism and to not let anyone try to tell us he has it. All of his other doctors agreed with her assessment regarding autism that although his behavior was autistic-like that he was not autistic.
With lots of therapy and work, some of the behaviors, like toe walking, have disappeared. And yet others remain. When excited, overwhelmed and/or tired, Matt will still bat at his mouth, flap his hand and/or spin (and tune out). Everyday he’ll attempt to find an unobserved bit of floor space, bed or couch in an empty room or somewhere we can’t see him throw a ball or toy in the air repeatedly. He knows if we see him doing this activity, we will make him stop. Hopefully there will come a point at which he no longer craves these movements. Until we reach that time, we’ll continue to redirect him to a more productive sensation seeking solution, like playing catch with us, that keeps him connected to the world while still providing him the stimulation he wants.
Thursday, October 22, 2009
Genetic Testing
The doctors knew that early in my pregnancy, somewhere between the tenth and eighteenth week, something had gone wrong with the development of Matt’s heart. Matt’s pediatrician suggested that we have him see a geneticist to find out if he had an underlying syndrome that would explain what happened to his heart and perhaps give us an idea of what the future held for him.
Off we went to UCLA to have them draw more blood from Matt. Matt ended up being seen by the Chief of Genetics at UCLA. They tested him for a number of different syndromes. All of the tests came back negative. The geneticist told us that it did not mean that Matt did not have some syndrome, but he did not have any of the known syndromes.
The field of genetics is exploding with knowledge and growth so at some point in the future an as-yet-unknown syndrome could be discovered and we might learn that Matt has that yet-to-be-discovered syndrome. Or he could have something that only he has, something unique to him. Or it could have been caused by something else, and he doesn't have any syndrome at all.
We all know that something went wrong. We just don’t know what caused it. We may find out at some point in the future or may never find it out.
For a while the lack of an answer really bothered me. Then I decided that no one knew what Matt’s future would be. Therefore, I would just continue to focus on helping Matt reach the best future he could have. The lack of information changed nothing. I still had my mission in front of me: help Matt reach his potential.
And so our journey continued.
Off we went to UCLA to have them draw more blood from Matt. Matt ended up being seen by the Chief of Genetics at UCLA. They tested him for a number of different syndromes. All of the tests came back negative. The geneticist told us that it did not mean that Matt did not have some syndrome, but he did not have any of the known syndromes.
The field of genetics is exploding with knowledge and growth so at some point in the future an as-yet-unknown syndrome could be discovered and we might learn that Matt has that yet-to-be-discovered syndrome. Or he could have something that only he has, something unique to him. Or it could have been caused by something else, and he doesn't have any syndrome at all.
We all know that something went wrong. We just don’t know what caused it. We may find out at some point in the future or may never find it out.
For a while the lack of an answer really bothered me. Then I decided that no one knew what Matt’s future would be. Therefore, I would just continue to focus on helping Matt reach the best future he could have. The lack of information changed nothing. I still had my mission in front of me: help Matt reach his potential.
And so our journey continued.
Friday, October 9, 2009
Tears of Laughter
In one of my favorite pictures of Matt, he is sitting in the kitchen, obviously in the midst of a belly laugh, with a tear drop glistening on his cheek.
Tears tracking down his cheek was not an unusual sight. I mentioned it to his pediatrician at one of his early appointment. She told me that one of his eye ducts was not open and that we'd watch it. If it was still unopened by his first birthday, she'd have him see an eye doctor. So, after his first birthday, we saw the eye doctor and Matt was subsequently scheduled for a minor eye surgery for when he was eighteen months to open the eye duct.
While obviously not as serious as heart surgery, any time you are put under there is a risk. I gave both the eye doctor and anesthesiologist Matt's medical history. I remember being very calm while I waited for them to finish with Matt.
The eye doctor came into the waiting room with a very stern expression on his face. I had a moment of pure fear while I waited for him to give me obviously terrible news. I remember thinking I had relaxed and let my defenses drop and was going to be punished for that. The doctor sat next to me and told me that the procedure had gone fine but he needed to talk to me.
Did I realize that because Matt had had heart surgery that before Matt had any invasive procedure, including seeing a dentist, that he had to have a prophylactic? I slowly nodded my head. Matt's cardiologist had told me that before he sees a dentist he'll have to take an antibiotic but as he did not have many teeth Matt had yet to see a dentist. The doctor nodded to me and said that it is more than just seeing the dentist, for any invasive procedure, including the procedure that Matt had just undertaken, Matt would need a prophylactic prior to the procedure.
The eye doctor told me that luckily the anesthesiologist has spoken to me directly before the procedure and thus knew that Matt needed a prophylactic and delayed the procedure until after it had been administered. The eye doctor told me that upon hearing Matt's medical history that any doctor or dentist who does work on Matt SHOULD know that they needed to make sure he was so protected before they do anything to him, but that I shouldn't assume they would know. For example, I had told the eye doctor about Matt's heart surgery while giving him Matt's medical history but the eye doctor had not remembered that such a patient needed a prophylactic. That as his mother, I should make sure to directly inform each and everyone of that fact.
The incident shook up both the doctor and me. I also took his advise to heart and have made it my responsibility to inform everyone of his need of a prophylactic before any invasive procedure, like teeth cleaning.
Tears tracking down his cheek was not an unusual sight. I mentioned it to his pediatrician at one of his early appointment. She told me that one of his eye ducts was not open and that we'd watch it. If it was still unopened by his first birthday, she'd have him see an eye doctor. So, after his first birthday, we saw the eye doctor and Matt was subsequently scheduled for a minor eye surgery for when he was eighteen months to open the eye duct.
While obviously not as serious as heart surgery, any time you are put under there is a risk. I gave both the eye doctor and anesthesiologist Matt's medical history. I remember being very calm while I waited for them to finish with Matt.
The eye doctor came into the waiting room with a very stern expression on his face. I had a moment of pure fear while I waited for him to give me obviously terrible news. I remember thinking I had relaxed and let my defenses drop and was going to be punished for that. The doctor sat next to me and told me that the procedure had gone fine but he needed to talk to me.
Did I realize that because Matt had had heart surgery that before Matt had any invasive procedure, including seeing a dentist, that he had to have a prophylactic? I slowly nodded my head. Matt's cardiologist had told me that before he sees a dentist he'll have to take an antibiotic but as he did not have many teeth Matt had yet to see a dentist. The doctor nodded to me and said that it is more than just seeing the dentist, for any invasive procedure, including the procedure that Matt had just undertaken, Matt would need a prophylactic prior to the procedure.
The eye doctor told me that luckily the anesthesiologist has spoken to me directly before the procedure and thus knew that Matt needed a prophylactic and delayed the procedure until after it had been administered. The eye doctor told me that upon hearing Matt's medical history that any doctor or dentist who does work on Matt SHOULD know that they needed to make sure he was so protected before they do anything to him, but that I shouldn't assume they would know. For example, I had told the eye doctor about Matt's heart surgery while giving him Matt's medical history but the eye doctor had not remembered that such a patient needed a prophylactic. That as his mother, I should make sure to directly inform each and everyone of that fact.
The incident shook up both the doctor and me. I also took his advise to heart and have made it my responsibility to inform everyone of his need of a prophylactic before any invasive procedure, like teeth cleaning.
Healthy Enough To Get Sick
For the first fifteen months of Matt's life, he was not allowed to get sick. The reason for this was with his weakened heart, even a cold could kill him. To this day, he is not allowed to get the flu and has received his flu shots since he was a tiny baby. While the flu will always be potentially deadly for him, at birth even the sniffles were.
We adapted our lives to ensure that Matt did not get sick. No one feeling even poorly was allowed to visit. Chris' mother even postpone a planned visit when she woke the day she was to fly and realized that she had a cold. As frustrating as it was for her to delay visiting her grandbaby, she understood that the risk was too high for her to even come into the house.
Instead of the daycare we had planned to enroll Matt in, Chris left his job and become a stay-at-home parent. Daycare was completely out of the question. We had considered hiring a nanny but ultimately decided that having one of us stay with Matt was the best choice.
Chris and Matt did get out of the house. On clear days, Chris would take Matt out in the stroller. As Matt got bigger and was able to hold himself up, Chris would take Matt to the park and push him on the baby swing - one of Matt's favorite activities. Chris did not have Matt interact with the other kids at the park. Just could not risk him getting sick.
A number of our friends have children around Matt's age. While they let us know of the times they were meeting at a local park or having a play date at someone's house, one of the kids or babies always seemed to be sick, so we would not join them. While Chris and I missed seeing our friends and Chris chaffed a bit in his new life of almost isolation, Matt, not knowing another life, enjoyed his days with Chris and evenings and weekends with me.
One of the few places Chris and Matt would visit regularly where Chris could have a bit of adult interaction was a local cafe. The wait staff knew Matt's situation, so they'd make sure that he and Chris were not seated near anyone. To this day, it is one of their favorite places to dine and they are treated almost like family by the whole staff.
At Matt's fifteen month check up with his cardiologist, she was happy to report that he was healthy enough and strong enough to be able to survive getting a cold. In fact, since he was a bit delayed in building his immune system since we have kept him from any disease that she would be okay with him getting a cold every month - which is exactly what he did for the next few years!!
We had been given a get out of jail free card. Matt was able to go to birthday parties, visit friends, go to the park and play with other kids and get sick. Who would have thought that the news that he could get sick would have been so wonderful.
The news also meant that he would be able to attend an early childhood development center - which is what he did at eighteen months old - starting at two days a week and building up to five days a week. He did miss days because he was sick - he sure seemed determined to follow doctor's order by getting a cold at least once every month - but he was well often enough to start to learn exciting new things, like sign language, the routine of a classroom, and the joys of classmates.
Mind you, I was also equally excited when years later, he had his first month without a cold!! And now his immune system is strong enough that he goes months between colds. It has been a long and interesting journey to reach this point of health!
We adapted our lives to ensure that Matt did not get sick. No one feeling even poorly was allowed to visit. Chris' mother even postpone a planned visit when she woke the day she was to fly and realized that she had a cold. As frustrating as it was for her to delay visiting her grandbaby, she understood that the risk was too high for her to even come into the house.
Instead of the daycare we had planned to enroll Matt in, Chris left his job and become a stay-at-home parent. Daycare was completely out of the question. We had considered hiring a nanny but ultimately decided that having one of us stay with Matt was the best choice.
Chris and Matt did get out of the house. On clear days, Chris would take Matt out in the stroller. As Matt got bigger and was able to hold himself up, Chris would take Matt to the park and push him on the baby swing - one of Matt's favorite activities. Chris did not have Matt interact with the other kids at the park. Just could not risk him getting sick.
A number of our friends have children around Matt's age. While they let us know of the times they were meeting at a local park or having a play date at someone's house, one of the kids or babies always seemed to be sick, so we would not join them. While Chris and I missed seeing our friends and Chris chaffed a bit in his new life of almost isolation, Matt, not knowing another life, enjoyed his days with Chris and evenings and weekends with me.
One of the few places Chris and Matt would visit regularly where Chris could have a bit of adult interaction was a local cafe. The wait staff knew Matt's situation, so they'd make sure that he and Chris were not seated near anyone. To this day, it is one of their favorite places to dine and they are treated almost like family by the whole staff.
At Matt's fifteen month check up with his cardiologist, she was happy to report that he was healthy enough and strong enough to be able to survive getting a cold. In fact, since he was a bit delayed in building his immune system since we have kept him from any disease that she would be okay with him getting a cold every month - which is exactly what he did for the next few years!!
We had been given a get out of jail free card. Matt was able to go to birthday parties, visit friends, go to the park and play with other kids and get sick. Who would have thought that the news that he could get sick would have been so wonderful.
The news also meant that he would be able to attend an early childhood development center - which is what he did at eighteen months old - starting at two days a week and building up to five days a week. He did miss days because he was sick - he sure seemed determined to follow doctor's order by getting a cold at least once every month - but he was well often enough to start to learn exciting new things, like sign language, the routine of a classroom, and the joys of classmates.
Mind you, I was also equally excited when years later, he had his first month without a cold!! And now his immune system is strong enough that he goes months between colds. It has been a long and interesting journey to reach this point of health!
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