Most days, being a parent to Ella, is just like being a parent to Audrey or Jakob. Yesterday, I picked Ella up early from school so that we could pick up her brother before heading straight to tutoring. Ella goes to the Centre for Literacy for help with her reading. We really felt that she lost last year due to an unmotivated and unteachable teacher. Her tutor, a spunky, tattoo covered grandma type, has brought her forward in her phonemic awareness exponentially and we are so happy with decision to get this extra help.
I didn’t plan very well however, and on the calendar it also said that she had speech therapy on Monday night. There would be a small window to eat dinner, get her going on speech, send Ben off to rehearsals (yes, not one, but two) and get Jakob off to hockey (thankfully someone else could take him to his late game so I didn’t have to keep the girls up past their bedtime.)
There are few things that cause me more stress than rushing. I hate rushing and I hate being late almost as much as I hate rushing. Too many commitments is just one of the sources of my constant anxiety that I can’t seem to kick these days. But what do we give up? We are caught between the same, and the different. There is a saying in the Down Syndrome community #morethesamethandifferent, which I absolutely believe to be true except when it’s not.
Now, there are some parents who believe that therapy is not the answer and that their child will develop at their own pace, which I also absolutely believe to be true. But the reality is, is that if Jakob was struggling in an area of school and it was affecting his self-esteem, or he himself wanted help, I would get it for him. The difference is, is that Ella struggles in many areas. Speech is of greatest concern to me – call it superficial but society judges books by their covers. Ella already has the flattened bridge, the Epicantha folds and the short stature that give her designer genes away. After looks, generally speaking, individuals judge others on their ability to speak – the clarity, the articulation, the sentence formation. Another mom said to me when Ella was just a baby, “you will never meet someone with Down Syndrome that cannot walk, but you will meet some, who cannot talk.” I want to do everything I can to give Ella the tool of speech. Absolutely. So we value the time that she has with her SLP, just as we value her time with her tutor but we also value the opportunity to participate in “normal” activities with her peers. She LOVES to dance, so she takes ballet. She LOVES to be social, and we value confidence building, so she is in Girl Guides and most recently, she’s been asking, and asking and asking (x10) to take violin, so we have started her in violin lessons. It sounds like a lot doesn’t it. Well it is, but where do we draw the line. If Ella only had violin, ballet and Girl Guides, it might be fine, but add in “the different”, not to mention various extra medical appointments and this momma-chauffeur is beat.
How do you manage the same and the different? I have no answer. Much like many other conundrums in life, I chalk it up to this stage in life. It’s busy. It’s a different kind of busy than having a baby and a toddler, although some times, I feel like that is also I am where I am at – again “the different”. And to be honest, part of me loves it. I love seeing Ella explore the world – she is a fiercely independent and determined little girl. I love watching her confidence grow. I love knowing that one day, not too far from now, she will be more independent. She will be able to read, and take the bus on her own, get a job, live in her own apartment and hang out with her friends…all without me because the truth is, she is more the same the different but instead of B-lining it on the hi-way, she just likes to take the scenic route.
I just posted today about speech and the importance it has in the life of those whose speech is not second nature. I learned some things too late and am trying to correct them now. I applaud you for realizing it now and trying to figure out what to do about it.