I haven’t blogged in a while, life just took over and my desire to ‘share’ went for a while. I have to admit I missed it.
I believe blogging or at least writing things down is good for me, so here I am back at it.
Today I am just going to write about what happened this morning, which kind of follows on from my last blog post all the way back in August.
My 11 year old daughter Lilly was ‘helping’ me get Owen into his Snappi chair ready for his school bus. Helping being holding onto his straps as I lift him in so he don’t sit on them (Owen likes to push out, arch his back to be a little naughty when getting in his chair so losing the straps can mean lifting him in and out again to re position him) She likes to do this, I don’t ask her she just comes over and helps if Owen is being particularly ‘cheeky’ that morning.
Seriously can not wait for the hoists to be fitted (building work currently in progress) this struggle is real.
After Owen was in his chair Lilly turned to me and said “When is Owen getting his proper Wheelchair?” “Soon” I said, explaining we were just awaiting an appointment to be sent through after our referral. “Why?” I asked. She replied “Just because when Owen is in his proper Wheelchair, people will understand he is Disabled and they will be kinder to us”
We currently have a Snappi special needs buggy and despite it being classed as a wheelchair it often gets mistaken for a standard buggy, this can cause lots of ‘miscommunication’ let’s say.
“At least we will be able to get on a bus easier” Lilly added. Their has been many times when we couldn’t get on a bus as baby prams were in the wheelchair spot, or times another wheelchair user was ahead of us in the bus que (which there is nothing you can do about that) other times we were ahead of another wheelchair in the que – this caused a bit of a stir as the wheelchair user insisted I should fold down my buggy so she could get on (I obviously can’t) I politely asked the bus driver if we could simply both get on as there was plenty of room on this particular bus, luckily he agreed and the other wheelchair user was ok with this. Another time we were already on the bus and another wheelchair user wanted to board but the bus driver wouldn’t let them on despite me again asking. Which lots of harsh whispers tones from behind me from the other passengers I explained to the other wheelchair user and the bus driver my son had Cerebral Palsy and was not in a regular pushchair, we couldn’t get off as we would be stranded. I then turned and explained to a bus load of people. Humiliating and uncomfortable. All this witnessed by Lilly.
We had a similar chat, when she got upset when parents in a waiting area at one of our clubs were in her words “Rude to us”… “They never give us room and then they just stare at us when Owen gets upset or makes a noise” I asked her how this made her feel ” She said “annoyed” and “Sorry for Owen to be treated this way”.
I asked Lilly do you feel embarrassed when I turn warrior mum and have to get cross at times or sometimes simply have to explain.
No I get cross too!!!! Then I feel upset for Owen. I wish everyone would just see him as Owen. He is disabled and he can not help this. I wish everyone would just see him as a cheeky little boy who just is in a wheelchair.
Trouble is Lilly truly believes that when Owen is in his ‘proper’ wheelchair, people will understand, the awkwardness will end, the stares will stop and everyone will just be kind to us. Unfortunately I am not sure this will happen. How do I explain this to my kind, empathic, quirky, overly chatty 11 year old? I wish their were more Lilly’s in the world.