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Blank stares. Concentrated smiles. Forced high pitched enthusiasm.
That’s what we get when we excitedly talk to other parents, of traditional kids, about how happy we are that Alex has won the right to ride on a regular school bus. Now, it’s not anyone’s fault that they don’t get why this is so important, but at least they have an understanding that we see how important it is.
It all began when we received a phone call from Alex’s new SSN teacher, in his new school, which we had not yet been impressed by (but that’s another rant). In that conversation, we said something along the lines of, “…when Alex starts riding the school bus…”. What we got in response from Alice (SSN teacher) was an adamant NO…she did not believe, “in (her) professional opinion” (which was all about 4 years long and she’s only known our son for 1 week) that Alex should ride the bus at all, unless it was the ‘little bus’.
Now, this came as a shock to us. I haven’t written much about Alex as of yet, but he has moderate Cerebral Palsy. Most of the affects are global: developmental, speech and cognitive delays, sensory integration dysfunction, possibly ADHD, epilepsy, and mild to moderate physical impairments of spasticity of his muscles on his right side (arm and leg). He has a full AFO on his right leg and a shorter ankle brace (or schmo) on his left. He can walk and run, slowly climb some things, certainly walk up steps of the bus and sit in a seat….so, needless to say, we were shocked that she would say no, and that she would be so adamant about it. Especially, she said, because of his epilepsy and what if something happened on the bus….
Okay. We thought she had a good point, however, we are his parents and we feel comfortable with him riding a regular school bus with regular kids (and any others that have special needs that may eventually win their right to ride the regular bus); he has a ton of “friends” (neighbors) in our cul-de-sac who ride the bus and were wondering why he wasn’t, as was he. His epilepsy is treated and occurs at night or in his sleep. And, we thought, what would happen if anything happened to any child on the school bus! The driver would pull over, call the school, call emergency help if need be, anything. We’re certain other children that have epileptic seizures ride the bus, so why should Alex be separated just because he has a label! We decided it wasn’t her decision.
In my astonished-in-her-audacity-state, I spoke to a neighbor who is an advocate for those who have or have survived brain tumors and knowledgeable about epilepsy, etc. She, being one of the few that are closer to understanding our plight due to her own experiences, was just as angered as we were to hear this. She firmly suggested (okay, she straight out told me to) that I contact Alex’s neurologist and have him write a letter indicating that Alex’s seizures are treated and that there was no reason why he couldn’t ride the bus. I did.
Over the next month or more, we had to have discussions with her, the assistant principal, the principal and transportation, not to mention other parents in our neighborhood and other parents in Alex’s class. Again, the wide eyes, trying to understand the big deal (both for us and for the school)…but at least they listened. Mounds (apparently) of paperwork had to be completed. There was talk about the liability, blah, blah, blah.
Then Tuesday, a month after this began, we received a phone call that Alex could ride the bus! He could ride the regular school bus, with his friends, not separated, with no reservations. They would have a staff member on the bus to assist him with anything he needed and to ensure that he was safe on the bus (liability) and transferred to his school Para who would walk him to his class line. I was so excited; I thought I was going to bust. I called everyone I could think of, including thanking my neighbor, to tell them the excited news.
I called the people who understand, people who get why it’s so important not to highlight Alex’s differences to an unnecessary
