I think I have mentioned school attendance before but if not, I will now. For the last five years getting my daughter to school is a struggle almost every day. I’m not sure the exact number of days in a school year – let me estimate 160 – (10 mos. x 20 days – 40 for holidays and pa days). I have been getting up at 6:30 a.m. for 800 days and trying to convince, cajole, bribe, be loving, be stern, everything in an effort to get my daughter up and ready for school.
Many parents I’m sure go through phases – but mine is a five year ordeal. By the time children get to senior public they should be able to get up on their own. My parents divorced when I was 8 and my brother 9. My mom started work at 7:30 a.m. And for the first few years had to take the bus at 6:30 a.m. We got up and got dressed, ate and left. It is just what we had to do.
I can’t expect my daughter to do this. I’ve tried to sit back and let her … But she just does not have the executive functioning skills to manage. So I still have to get up to get her up. And supervise her routine. Remind her of what to do. To take her pills, to eat, to wash her face, brush her teeth, get dressed, flush the toilet, make sure her outfit is appropriate, get her lunch and backpack and get out the door for the bus. Every morning for 800 mornings. Except for mornings like yesterday.
At least once a week she refuses to get up and go to school. Over this last month it has been more like two days a week. She says she likes school. She likes her morning teacher – he is funny she says. She has the same teacher for two periods – it is a specially developed class – small and mostly boys. The two girls in the class used to bully her in grade 6 & 7 (she was taught at home for half of 7 and skipped 8 because of bullying) so overall the class isn’t the best. However teachers make such a difference. She likes this one.
Lunch is difficult for her. She has a couple of people she hangs out with occasionally, but three days a week she can go into the resource room, or she helps in the cafeteria ( which could have been an ongoing thing but she isn’t responsible enough to go every day even though she is paid in food!) . Third period is a spare. And fourth is with a special class again but she loves the teacher who is young and very nice. But my daughter gets upset because the boys in the class are rude to the teacher. Bless her.
School isn’t welcoming for her. Most kids want to be at school because they love to learn and are good at it, are involved in teams or see their friends. Her challenges prevent any of this social or academic desire. I have asked if there is someone they could pair her up with to hang out – I’d pay – but there isn’t. Small school, not a lot of choice I guess.
The result – many days she just cannot face going. I gave up last year forcing her out of bed to go. I was tired of starting my day in a bad mood. She will never have a job like typical adults. She will need a very understanding boss and workplace, and someone to support her. She needs reminders, redirecting and support to stay on task. I want her to finish school. She has been moved towards obtaining a certificate however from a diploma because she just doesn’t need the diploma. If she is interested in something she will dive right in and stay focused. But just as fast she can change interests. Ask her about dogs, Pokemon and the Twilight series and she will fascinate and bore you with details. She can learn but only if it interests her. Right now she wants to be a history or English teacher, vet tech, fashion designer, social worker or work in a store.
So, I have learned to just be mindful of her moods and respectful of her challenges and struggles. I have learned to be mindful of myself. If she feels she just cannot manage one day, I am not going to second guess her. I will never know how much effort it takes her to just be at school. I can imagine a tremendous amount – but I will never know.
The world needs to accommodate her – yet every day she is asked to accommodate the world. To live up to its expectations. But what about the world coming down to her level. She didn’t ask to be born with brain damage. She is trying her best to fit in a world that isn’t always very accepting of those who are different. She has a lot she can offer this world – and with the support and understanding of everyone who touches her world she will be able to give her gifts to the world.
But if she wants a day in bed or at home then I will give it to her. And no one can tell me she doesn’t deserve it. I recently joined a Facebook group of parents and caregivers of teens and adults who have FASD – I have found a place to support and encourage me in those days like yesterday when I feel I can’t go on – I find comfort knowing that my daughter is like so many teens and adults – she is typical in and untypical group.
One day I hope she can find a group that welcomes her, supports her and let’s her be just who she is meant to be. Until then she has me.