School days

Meghann and bus driver

The alarm sounded at 5:30  a.m. I quickly reached over and hit the snooze on the alarm without thinking. I lay in bed mentally preparing myself for the day. Meghann was diagnosed with cerebral palsy at 11 months old. For three years I helped her with diapering, changing clothes, putting on AFO’s ( ankle foot orthotic brace), getting into her wheelchair, combing her hair, brushing her teeth, eating, charging her augmentative device, administering medicine, and so on. Today’s routine was different. It was Meghann’s first day of preschool. She had spent everyday since she was born with me. I was blessed to be able to work out of my home and care for her. I knew this would be a difficult day for both of us.

Meghann participated in an early intervention 0-3 program for developmentally challenged children and a home based program. She received physical, occupational and speech therapy every week from Easter Seals. I wanted  Meghann to have every opportunity possible to succeed, and school was the next step. I thought about the countless trips to Peoria for services that Meghann had received up until she began school.

Prior to beginning Meghann's school years

Much of the beginning of Meghann’s life was spent driving an hour to Peoria for neurological appointments, cerebral palsy clinic, MRI appointments, speech, occupational, physical therapy, equipment repairs, AFO ( ankle foot othosis or braces) fittings and more. Many of these services would be eliminated and continued in school. I was thrilled that Meghann would receive services throughout her school days. I still had mixed emotions and concerns about her traveling 100 miles a day to school. It would be a long day for a three year old with special needs-especially when winter would begin. It was not an easy decision to send Meghann to school in Peoria. I had to weigh all of the options carefully. For example our school district was not equipped to provide the amount of services Meghann needed. Peoria district would provide as much therapy and learning assistance she needed in school. I was disappointed there was not a program available in our district. Another concern I had about Meghann traveling to school was socially. The long days would make it impossible for her to have a circle of friends in our community. However in school she would be exposed to children with all different abilities. I also had to trust our home district to hire a bus driver who was capable, experienced, and comfortable with special needs children. It was not my dream to trust a bus driver I hardly knew to deliver my three year old to school and home safely every day. It didn’t help when each morning I put Meghann on the bus she would cry. I felt horrible, and my guilty mom meter went through the roof. I wanted to keep my little girl in a protective bubble away from everyone.

Meghann and great-grandma

I was jealous of other moms. While I was planning to send my three year old to school 50 miles away they were having play dates, going to  parks, and enjoying the developmental milestones together. I wished that I didn’t have to send Meghann so far away to school. Was I wrong to be jealous?

I ached for the simple decisions of parks, playdates, and running after a toddler. These simple activities would never happen for Meghann. Meghann would never walk, have playdates or run away from me. Would I be a bad mother to keep my little girl at home in a bubble and not send her to preschool?   Would it be wrong not to allow Meghann to experience all that school had to offer in Peoria? I knew in my heart what the answer was to these questions.  I must pop the protective bubble and do what was in Meghann’s best interest. I wouldn’t be fair to keep Meghann at home. She deserved an education and an opportunity to experience everything life had to offer.

Meghann deserved an education and an opportunity to experience everything life had to offer.

Meghann on school trip

She would receive all the therapy that she needed in school and be in a classroom with other children who had similar abilities. My head told me it was reasonable, but my heart broke for the things at home she would miss. I also realized that even if she was home with me she would never be a part of my friends lives like I  wanted. Meghann’s  developmental delays would always leave her behind, and I needed to get used to that fact. Sometimes instead of giving up on our dreams we have to rewrite them and that’s okay.

 For the next 20 years Meghann and I got up at 5:30 a.m. Sometimes, I had a more difficult time rolling out of bed than Meghann. I am not ashamed to admit that working without Meghann at home motivated me to jump out of bed in the dark early mornings. I am sure most people can relate to me. I have seen pictures on social media of parents celebrating the first day of school while their children scowl at them. Meghann was never one of those scowling kids. She loved school. She couldn’t wait to get up in the morning, and get on the bus. There were days Meghann would cry because I told her she couldn’t go to school when she was sick or it was snowing. I knew I was fortunate that Meghann loved school, her teachers, therapists and classmates.  I also realize that I made the right decision to bus her 100 miles a day to school. If it wasn’t for the fantastic therapists, teachers and assistants Meghann would not be where she is today. It is evident when I look at Meghann the decision to send her to preschool, grade school and high school in Peoria was the correct one.

Meghann in stander at school

Do you have a story, memory or picture about your child’s school days?

Join the online support group on September 5th.

Meghann on school trip

What:  Online support group for parents/caregivers of special needs children and adults.

When: September 5, 2017 at 7 p.m. Tuesday

Where: zoom.us ID number: 859-589-845

or phone number: 646-558-8656

Topic: Open discussion

For further information email me

jillianm1963@hotmail.com

The guilt meter retires

Meghann and Abby

Meghann with therapist

One morning Meghann’s bus driver had an idea.  He told me to step away from the car window after I put Meghann into her car seat. He asked me to look at Meghann after a minute. Confused I did what he asked. I strapped Meghann in her car seat.  Her lip pouted out, and the tears  welled up in her eyes. As my shoulders slumped, I stepped away from the station wagon window. I waited a minute while the car idlied.  I leaned over, and I peeked back in the window at Meghann.  I was shocked!  You guessed it ! She had stopped crying. I couldn’t believe it. For the past several weeks I thought Meghann was crying all the way to school.  I could hardly keep my mind on my work.  I was annoyed and relieved at the same time.  I tend to believe this was Meghann’s way of telling me that she missed me but not enough to stay home from school.

Meghann and classmates

Meghann in school

Please share information about the online support group with other parents/caregivers of special needs children and adults. Or pass my email to them. jillianm1963@hotmail.com

Thank you!