(at least) a three day diary
I met an old friend for coffee the other night and we caught each other up on life over the past couple of years. Of course, Hunter came up and the progression of PANDAS and Autism. I always take something away from every conversation, every appointment, every experience. I told her about the ups and downs of this disorder, and how hard it is to go from good to bad, and vice versa.
She said to me, "You know how doctors or therapists ask parents to write out a three day diary? I see progress as a three day diary."
How incredibly true this statement is. Some days are really, REALLY hard...and the next he could be an angel. If you asked me on a specific day how Hunter was doing, my answer could be completely different if you asked me 24 hours later.
I realized that when people ask me how he is doing, or when I ask myself how he is doing, I need to analyze it over three days, not just one.
PANDAS deals with inflammation. Inflammation is not a consistent issue- I know when it rains, Peter's ankle will hurt more. My knees will ache stronger. When Hunter is exposed to certain environmental or viral/bacterial triggers, his little body will ache...and our hearts hurt a little more. However, even just this week, a bad day was followed by a phenomenal day. So we can't look at one day to measure his progress.
December 23rd was the second anniversary of his diagnosis day. Last year, I know I blogged about not being where we wanted to be. Last year I was still researching crazy hours, making appointments with several specialists, and trying to "prove" that this child was not born with Autism.
I think I was trying to prove it for my own well-being as much as for the doctors. I didn't want to be wrong. I didn't want to have missed the signs, or feel like a fool- I mean, I am a therapist! I worked with children on the spectrum! And I couldn't diagnose my own son??
As this second anniversary passed, I realized how far we have all come. Number one, our son is thriving. He may not be the most social kid on the playground, and he still flaps his arms "like a bird," as he says, and he definitely has not escaped the tantrums. But he is playing with toys, having real, true play dates, and he smiles so much more than he did last year.
Paige and Peyton have grown in their love, their understanding, and their patience with their brother. They just "get it" when he gets rewarded or praised for things that they just do on their own. There are definite moments of resentment that we try so hard to avoid, but overall, I can't say how proud I am of these siblings.
Peter and I have focused not only on our parenting, but on our marriage. Having a child with a disability has wreaked havoc on so many relationships...and we are determined to beat the statistics. Every marriage has its ups and downs, but this year we have really made an effort to shut down the computers, live in the moment, and spend some quality time away from the kids.
Personally, I can't say I will ever completely "recover" from dealing with the shift in our family. So many days I feel like I am just not doing enough, mainly because I haven't been able to "fix" him yet. I try my best and make the most of the life we are living...
but some days are just downright hard.
sad.
depressing.
and exhausting.
However, in reviewing the entire year, for the first time, I can say we are on the road to recovery. We were given options in treatment that are still a possibility in this new year. We were given justification and answers by some top professionals. We were surprised by some achievements and milestones, and can celebrate these small victories as stepping stones of recovery.
So from now on, when asked how Hunter is doing, I will try my hardest not to answer in the moment. If you look over a three day period,
or a year for that matter,
we have come pretty darn far.
December 23rd will always be hard b/c it is the day we received news that changed our lives forever. Now, though, each anniversary can be a day when we look back over the year and think, Wow.
Look at our amazing, unique, funny, tender-hearted, compassionate, bright, talented boy. He's only five!
And our recovery journey has really only begun.
She said to me, "You know how doctors or therapists ask parents to write out a three day diary? I see progress as a three day diary."
How incredibly true this statement is. Some days are really, REALLY hard...and the next he could be an angel. If you asked me on a specific day how Hunter was doing, my answer could be completely different if you asked me 24 hours later.
I realized that when people ask me how he is doing, or when I ask myself how he is doing, I need to analyze it over three days, not just one.
PANDAS deals with inflammation. Inflammation is not a consistent issue- I know when it rains, Peter's ankle will hurt more. My knees will ache stronger. When Hunter is exposed to certain environmental or viral/bacterial triggers, his little body will ache...and our hearts hurt a little more. However, even just this week, a bad day was followed by a phenomenal day. So we can't look at one day to measure his progress.
December 23rd was the second anniversary of his diagnosis day. Last year, I know I blogged about not being where we wanted to be. Last year I was still researching crazy hours, making appointments with several specialists, and trying to "prove" that this child was not born with Autism.
I think I was trying to prove it for my own well-being as much as for the doctors. I didn't want to be wrong. I didn't want to have missed the signs, or feel like a fool- I mean, I am a therapist! I worked with children on the spectrum! And I couldn't diagnose my own son??
As this second anniversary passed, I realized how far we have all come. Number one, our son is thriving. He may not be the most social kid on the playground, and he still flaps his arms "like a bird," as he says, and he definitely has not escaped the tantrums. But he is playing with toys, having real, true play dates, and he smiles so much more than he did last year.
Paige and Peyton have grown in their love, their understanding, and their patience with their brother. They just "get it" when he gets rewarded or praised for things that they just do on their own. There are definite moments of resentment that we try so hard to avoid, but overall, I can't say how proud I am of these siblings.
Peter and I have focused not only on our parenting, but on our marriage. Having a child with a disability has wreaked havoc on so many relationships...and we are determined to beat the statistics. Every marriage has its ups and downs, but this year we have really made an effort to shut down the computers, live in the moment, and spend some quality time away from the kids.
Personally, I can't say I will ever completely "recover" from dealing with the shift in our family. So many days I feel like I am just not doing enough, mainly because I haven't been able to "fix" him yet. I try my best and make the most of the life we are living...
but some days are just downright hard.
sad.
depressing.
and exhausting.
However, in reviewing the entire year, for the first time, I can say we are on the road to recovery. We were given options in treatment that are still a possibility in this new year. We were given justification and answers by some top professionals. We were surprised by some achievements and milestones, and can celebrate these small victories as stepping stones of recovery.
So from now on, when asked how Hunter is doing, I will try my hardest not to answer in the moment. If you look over a three day period,
or a year for that matter,
we have come pretty darn far.
December 23rd will always be hard b/c it is the day we received news that changed our lives forever. Now, though, each anniversary can be a day when we look back over the year and think, Wow.
Look at our amazing, unique, funny, tender-hearted, compassionate, bright, talented boy. He's only five!
And our recovery journey has really only begun.
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