Life with Coco and Gigi... and Jack-Jack too!

Life as a Mom, A Homesteader, A Blogger and A Wife.

Fighting to help her

I mentioned in a previous post about Abby's PT sort of checking out on us and I thought I might elaborate. One of the major problems with having a rare diagnosis is no one knows what to expect. Will things get better? Might they deteriorate over time? What new problems and issues will arise over time? What are we possibly missing? You really have no idea. Like us, as parents, sometimes our doctors and therapists feel the same way. Our old PT ran out of ideas for Abby. She was great but didn't know where to go and that is when we decided to switch.

We are finding a similar situation with our new PT. Don't get me wrong, she is awesome. She managed to pinpoint problems Abby had that NO ONE else had been able to do. In many respects she sent us down the path to working on some issues that would have been to late to address in less than a year. She is really a terrific PT. BUT, we have hit a point that she doesn't think all of the efforts to work on balance and coordination are going anywhere. Kind of like, if her balance will never improve then why work on it. To me that sounds like giving up and I don't believe in giving up.

I have a little bit of a reputation with our service coordinator as having unrealistic expectations. She has never said it but reading between the lines is easy. She feels that Abby has likely come as far as she can. I whole-heartedly disagree. When they told us she wouldn't walk or talk we didn't buy it, thank God. What if we had? What if we hadn't pushed for the walker during that window of learning and she never learned the skill? What if now is the same thing? I know I can only push so hard and ask for so much but I don't think I am asking for anything unreasonable. I just want her doctors, her therapists, her teachers, etc. to be behind her and what she is capable. I know I will probably spend the rest of her childhood trying to educate her educators on her diagnosis but I hate the thought of having to sit and advocate all of her strengths. Shouldn't they stand for themselves?

6 comments:

ferfischer 4:35 AM  

You know, I agree with you - it is our job to expect our kids to run marathons, because if we don't who will? And if your therapists can't see the worth and potential in her, then time for new ones, like yesterday! Hugs!

Journey Through Toddlerhood 9:41 AM  

So sorry that you guys are going through this (again!). I had a brainstorm the other day about Miss Abby the other day when I was at work at the gym actually. I will shoot you off an email later today about it :o)

Anonymous 4:36 PM  

As parents, we make many of our judgments based on a little bit of experience and knowledge but alot of hope and emotion. Teachers, PTs, doctors, etc., work the opposite. They have to look at their vast experience and known statistics and go with those. You have your one wonderful Abby that you see potential in each day, they have dozens and hundreds of "Abbys" that they are trying to help. To become overly emotionally invested in each one or mired in hope against all basic medical and scientific statistics would put their work at a stand still. Imagine if you had to feel as passionate and hopeful as you do about Abby but for 200 kids each year. You would melt. Sadly, many wonderful therapists and teachers do, and they leave their jobs because of it.

They cannot be her advocate--it isn't their job. Their job is to work within their medical, scientific, and professional knowledge.

Obviously, you will never stop, and you shouldn't. Your job is to be persistent and fight for your daughter's future.

Just another perspective from someone who's fought this fight with a child they love. At some point, you have to start approaching interactions with these people as business deals--just get the most profit out of the deal that you can and move on to the next one.

Meghan 7:42 PM  

@Annonymous - I have to respectfully disagree with you about the hope and emotion elements as far as teachers and PTs are concerned. As a preschool teacher,special education teacher, and adapted gymnastics teacher hope, emotion, faith in my students, and believing in them when other couldn't/wouldn't is what makes me damn good teacher that I am. Hope and emotion are what make early childhood educators and those that work with young children amazing people. A lot of educators and professionals (OTs & PTs) don't leave the field b/c they are getting attached or too emotional, most leave the field when those things are no longer happening for them. It is when they no longer feel the emotion that they feel the need to move on.

There are teachers, PTs, OTs, and doctors out there that have the knowledge, experience, AND the hope and emotion, unfortunately you just sometimes have to work with a few until you find the best one out there for you and your child. But to treat it like a business deal? I strongly disagree. This is a child, a child with potential, a child with a sense of humor, a bright child, a child with a strong-will and determination, not a car that you trying to purchase. This a child's future NOT a "business deal."

Yes, Kris needs to be an advocate for her children, just like all parents do, but to say that educators and therapists are not advocates for them is way off (in my opinion). Find an amazing teacher or therapist and you will find that child's #1 advocate right in line in back of her amazing parents.

Anonymous 10:33 PM  

Meghan--you are clearly great at your job. In my experience, you are the exception to the rule. Much like Kristin, we were told many times that my nephew's progress had stalled and to "work on other things" rather than walking, talking, etc. Some of these therapists were incredibly talented at their work, but emotionally unavailable to be the searing advocate that you are, even for a kid as special as my nephew.

To me, they became and are resources to be procured and used for the betterment of my nephew. I squeeze as much juice from those lemons as possible and when it turns to a stone, I move on. That is how we got him walking, talking, running, and at grade level. I could have spent his entire childhood lamenting their bleak image for my nephew's future and getting angry at their lack of vision and hope. But as a caregiver to a disabled child, you too have to survive. Sure, you can hit the jackpot and find THAT ONE SPECIAL person who views your kids as just that special too. And then they lose their job, or your insurance stops covering them, or they switch schools. You cannot pin the future success of your child on finding that one special person who will take it to the mattresses with you. It's unrealistic and rife with disappointment.

You are one in a million. Good on ya.

Kristen 1:38 PM  

Thanks Anon and Meg for your thoughts. While I agree with anon about this fact with doctors and even some therapists I do agree. They can't completely invest in every child. BUT people like the therapists who are in our home, in the EI system (that is based off of advocacy) and our service coordinator (again, EI) that IS their job. They pride themselves on advocacy and seeing the potential in every child. When they aren't even meeting their own mission statement I have a problem.

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Over 8 years we have struggled through 3 IUI's, 6 rounds of IVF, several RE's, hundreds of appointments and the loss of three little angels. Now we find ourselves the proud parents of two perfect little girls and a wonderful little boy!!

Both of our girls struggle with some disabilities but that won't keep us down. Each day has it's own brand of insanity but we love it. Most days I am more monkey wrangler than mother but I do the best I can. Todays goal - getting to tomorrow.

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