So I finally get the letter from the Children's Hospital on Michael's diagnosis and explanation. Like how long ago has it been now? You don't think I may have found out maybe a bit about what we are dealing with? Anyway.... I told this Councilor, after she called me the first time with his diagnosis and kept rattling things off when I was in a state of shock, that maybe it all shouldn't be all doom and gloom. I mean, my child swallowed just fine after those first months of life. He never needed a respirator. I don't think you SHOULD have told me on the phone he was going to have significant cognitive issues and all this other stuff and then asked me if I had any questions before you left on vacation!
Yes, I had a gentle and nice conversation with her when we met again on how I felt about how this all went down. And I do mean I was nice. I wanted her to possibly understand why I felt the way I did and maybe with the next parent she might think the whole Phone thing out and plan for immediate follow-up. You don't set a fire, throw gas on it and then run away.
Well the explanation letter I finally just got wasn't a whole lot better, even though she even mentions the talk....
She likes to stick on this "risk of intellectual disability". OK you kind of blurted that out pretty harshly the first time you talked to me on the phone...
Again later in the letter she states again, " A little over 1/2 of the children with CDM have intellectual disability (an IQ less than 70 in limitations in daily functioning). Later in life.... and on....
The letter then goes on, after saying CDM comes from the mother and other stuff, that they hope the information has been helpful.
The important stuff I found out from the MD foundation and other parents with children with CDM, WAY BEFORE you got around to writing this letter. And let me tell you... They are a lot more positive, helpful and caring.
Now let me share all the pictures of my cognitively disabled grandson playing with his tablet and doing puzzles and finding the apps he wants and knowing just how to manipulate the darn thing at 18 months old. Sure he has some issues with things connecting, but you don't see him figure out things himself. His clapping for himself when he gets them. You don't see this little guy's own determination to solve a problem. Unlike his father, he displays very good frustration tolerance in the process as well, but keeps trying until he gets it.
Michael may not be my Trevor, or Steven and excel in school and critical thinking... but we don't know yet. I am not putting a label on him (yes he does have CDM, that is not the label I mean), or limiting him or ever letting him think he can't accomplish everything his wants. I guess this letter just really pissed me off.. as if you couldn't tell.
Maybe it doesn't help that this is the first genetics councilor that told me before even seeing Michael that he couldn't have CMD or else his mother would have it. Well she had never seen any of us at all, or had we been tested to know so... WTH????
Or maybe I can put a positive light on this letter and believe she wrote it for his chart so that if we need disability or SSI or help due to his different needs... this letter sure will help in that. Maybe there is a reason she wrote this letter the way she did, and it is actually to help Michael. We, as medical professionals, are asked to do it all the time, when the patients we know need services are not getting the help required. Yes, that must be it, because I would hope after our previous conversations, she would not have felt I still needed to read what she had written.
So Thanks for the the letter to add to his chart in case we ever have need.
We are aiming for that 1/2 of the children with CMD that are above 70 IQ and we will keep giving him the opportunity and tools and emotional support to get there. Environment DOES play a role and every parent that is faced with a challenge like this needs to know that. Never give up and don't stop trying. You will never know how much can be accomplished if you don't even try to get there.
Yes, I had a gentle and nice conversation with her when we met again on how I felt about how this all went down. And I do mean I was nice. I wanted her to possibly understand why I felt the way I did and maybe with the next parent she might think the whole Phone thing out and plan for immediate follow-up. You don't set a fire, throw gas on it and then run away.
Well the explanation letter I finally just got wasn't a whole lot better, even though she even mentions the talk....
She likes to stick on this "risk of intellectual disability". OK you kind of blurted that out pretty harshly the first time you talked to me on the phone...
Again later in the letter she states again, " A little over 1/2 of the children with CDM have intellectual disability (an IQ less than 70 in limitations in daily functioning). Later in life.... and on....
The letter then goes on, after saying CDM comes from the mother and other stuff, that they hope the information has been helpful.
The important stuff I found out from the MD foundation and other parents with children with CDM, WAY BEFORE you got around to writing this letter. And let me tell you... They are a lot more positive, helpful and caring.
Now let me share all the pictures of my cognitively disabled grandson playing with his tablet and doing puzzles and finding the apps he wants and knowing just how to manipulate the darn thing at 18 months old. Sure he has some issues with things connecting, but you don't see him figure out things himself. His clapping for himself when he gets them. You don't see this little guy's own determination to solve a problem. Unlike his father, he displays very good frustration tolerance in the process as well, but keeps trying until he gets it.
Michael may not be my Trevor, or Steven and excel in school and critical thinking... but we don't know yet. I am not putting a label on him (yes he does have CDM, that is not the label I mean), or limiting him or ever letting him think he can't accomplish everything his wants. I guess this letter just really pissed me off.. as if you couldn't tell.
Maybe it doesn't help that this is the first genetics councilor that told me before even seeing Michael that he couldn't have CMD or else his mother would have it. Well she had never seen any of us at all, or had we been tested to know so... WTH????
Or maybe I can put a positive light on this letter and believe she wrote it for his chart so that if we need disability or SSI or help due to his different needs... this letter sure will help in that. Maybe there is a reason she wrote this letter the way she did, and it is actually to help Michael. We, as medical professionals, are asked to do it all the time, when the patients we know need services are not getting the help required. Yes, that must be it, because I would hope after our previous conversations, she would not have felt I still needed to read what she had written.
So Thanks for the the letter to add to his chart in case we ever have need.
We are aiming for that 1/2 of the children with CMD that are above 70 IQ and we will keep giving him the opportunity and tools and emotional support to get there. Environment DOES play a role and every parent that is faced with a challenge like this needs to know that. Never give up and don't stop trying. You will never know how much can be accomplished if you don't even try to get there.
I have had to write letters as you describe - explaining to the client why it needs to be said a certain way,, etc. He will be in the upper percentile because of the time and attention and love you and Steve and Stephen shower him with.
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