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| Smooches |
I often have big mouth.
I have lots of opinions and frequently feel free to share that with others. When I’m passionate about something, I speak the
truth. When I see injustice or am
frustrated by others, I speak up.
I’ve realized in the last few years that perhaps this core
piece of my being was created in me so that one day when a therapist looks at
me and speaks words that I hear to mean she has lost hope in our little boy, I
have it in me to fight for him and demand that others do the same.
As you may have guessed, we had a fairly rough IEP meeting
not too long ago. Connor has been in his
new classroom since mid-February and it was time to gather the teacher, aide,
therapists, social worker and principal for a conversation. These meetings consist of a lot of people
with a lot of opinions around the table and often it feels like there isn’t
enough space or time for all the words flying out of people’s mouths. This time felt especially that way.
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| Figuring out how to walk in a gait trainer |
Connor’s physical therapist, who truly adores Connor and
recognizes how smart and great he is, told us we really need to get him a power
wheelchair because walking with a walker or gait trainer is hard for him, makes
him tired and he doesn’t like. She also
said that she thinks he may be made fun of by the other preschoolers because he’s
pushed in a wheelchair like a baby instead of being independently mobile.
My heart sank and fury started to build in
me. I did manage to control myself
enough not to swear or scream at her, but rather calmly told her that we haven’t
given up hope that Connor will walk (even if it is with assistance) and that we
believe in him. I told her I don’t care
if he enjoys using the gait trainer – that’s not the point right now. And perhaps if they have him practice every
day like we told them to do when he
started in January, his tolerance
and strength will build and it won’t be so hard or tiring for him. But well played, therapist lady, with “the
other kids will make fun of him” line.
This mama’s heart isn’t that squishy. I came to terms a long time ago that someday,
maybe even today, my child would be teased for his disabilities. I know he’ll be judged by others because of
what he seemingly can’t do. I just didn’t
think it would be by his own therapists.
So I declined her recommendation of the power wheelchair (three times in
the one conversation) and asked her to continue working with standing and with the
gait trainer.
Then a seemingly clueless Occupational Therapist tried to
share, but really that just felt like Brent and I telling her what we do at
home and in our private therapy to help with fine motor. Sigh. I
get that funding is being cut and everyone has a full case load, but when you’re
supposed to be the expert I expect you to be one. Sometimes I wonder if I expect
too much from people.
Connor’s vision therapist gets him, believes in him and
challenges him. Thank heaven for small
miracles.
And then the speech therapist started. This was the first time we had met her. Connor has 45 minutes of Speech Therapy each
week, at least half of which is in a group session. So this woman after five weeks of seeing
Connor, mostly with other children who are verbal, had the nerve to say not
once but several times that she doesn’t think Connor will ever speak and
basically we should focus all our attention on finding the right augmentative
communication device for him to use. I
wanted to cry and scream – HE’S FOUR YEAR OLD!
DON’T GIVE UP ON HIM! Instead I
held it together and after thanking her for finding the current communication
device he’s using, firmly told her we were not giving up on Connor and that we’d
like her to keep working on verbal language skills with him. She seemed baffled and a little pissed. Later, when she was going over his new speech
goals, I insisted that she keep a verbal language goal in there. She said “You really want to keep one in
there? I don’t think this is possible
for him.” I looked right at her and
said, “Keep it in. I know that if it’s
not in there, you won’t work on it.” It’s
the only way I can hold her even remotely accountable for doing what’s best for
my son.
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| SUPER excited about his new shoes |
So needless to say, I am looking into private physical and
speech therapy now. Connor’s at a
critical age and we need people on our team who believe in him and push him to
be all that he can be. I’m not confident
he will get that at school, so we’ll pay someone to do it.
There was a time in my motherhood journey when I thought my mama
bear mode would be needed when I had to confront the neighbor kid for hitting my
kid or demanding the principal take action against a bully. I didn’t think I would have to do it when he
was only four years old. I didn’t think
it would hurt my heart as much as it does.
I didn’t think it would be with people who are supposed to have his best
interest in mind.
That’s a really long way of saying we are pushing
through. And that I’m thankful for my
big mouth and the gumption to speak up when need be. I’m also quite aware that all of this pushing
might be more for me than it is for him and I pray every day it’s not. It’s a chance I have to take.
