Adoption and Family,  Back To School,  FASD,  special needs

Bittersweet August Algebra #specialneeds

special_needs_parenting_and_schools
August is the strangest month if you parent a child with special needs. Why is that? Patience and I will tell you. August is day camps, if you are lucky, and if you have found a camp that can accommodate a child with whatever needs your child might have. It is cottage and beach and sand and water and full on sensory experiences pretty much everywhere. Swimming, I am told, by a very clever friend of mine is akin to the body receiving a full head to toe hug. The ultimate sensory immersion experience. 
My girl has some special needs, not the least of which is the sensory processing disorder, along with the  FASD (fetal alcohol spectrum disorder). She responds to swimming and sand and beach and running and sun with something that resembles peacefulness. So we tumble through our summer days mostly happily. I schedule her days filled with diving lessons, martial arts camps, swimming and more trips to the beach. July passes beautifully for the most part and then slides full on into August, the month marking half way through the summer time. Dread begins to uncurl, tiny wisps intruding at the end of the day growing stronger as the weeks pass.
My girl has had a lot of special needs success this July and August and I am so incredibly proud and relieved. She discovered a very inclusive camp. Yet here we are meeting September head on again. A Mom asked me today: Are you ready for school again? I answered honestly: Not really. Why is that? So many reasons. Grade 1 and Grade 2 and a few parts of Grade 3. Phone calls to school board officials and trustees and my head hurts ticking off days – 30th, 31st. Meetings, forms, IEPs, misunderstandings, phone calls. Oversights. Under-sights. I went to the NACAC (North American Council for Adoptable Children) conference for just one day this summer and I attended some workshops on disabilities and FASD and parenting adopted children. In one workshop called Changing the Lens on Disability, a couple of educators with children who have special needs, talked of nurturing success at every level for every disability. Their consulting business struck me as clever and filling a necessary niche left wide open by lack of services at public school level.  
But what struck me more was the straight talk from one of the moms, an adoptive parent and a teacher herself. “August is the month I dread most,” she said. “Because at home I can meet my daughter’s needs and I know what she is like. Much of August is spent preparing the school, and worrying about them not getting it.”
That was my light bulb moment during the conference. It’s 100 % true. For special needs parents, August is the shortest month. It’s thinking about all the hours you will spend teaching the school how to do this right. It’s stressing about the hours spent advocating, the afternoons in meetings, the endless Google searches to educate yourself more every day, because you are the expert on your child. It’s wondering how or when will they call you at work. It’s strategizing which parents will be allies and which ones will place obstacles in your path. It’s preparing and reading and a whole lot of hoping. 
It’s drawing lines in the sand for the school year. Call it August Algebra. It’s carving up the months in a pie chart of sorts. It’s building a special needs parenting computer code. If this happens, then we will get through December. If all things are equal then the sum of the equation will balance out and my child will be happy. But if X happens, then I will call the principal, then the school board and then the trustee. If they lose my child this year, or if she wanders then X will occur. And if Y happens this year that will be the last Y ever for my child at this school. It’s being cautiously optimistic and stacking the deck in your child’s favour while at the same time quietly dusting off the phone number for a lawyer, a child advocate, and your MPP.  
Are you ready for back to school?

Mom of two beautiful active girls, traveller, fitness junkie, social media consultant, and keeper of the sanity.

2 Comments

  • Cyn

    I’m so sorry that you have to spend August in such thoughts. We need to fix the education system so that you can look forward to a new school year as something that will be wonderful and exciting for both you and your daughter. Hugs.

    • Paula Schuck

      Thanks Cyn! So far so good. But I still hate this system for numerous reasons: not the least of which is the allocation of EAs. They are not there to help kids learn just for safety or toilet transfer duty. Ridiculous really.