Mama Bear Reporting In

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. 

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.

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.