As a special needs parent, I often struggle with the difference between adjusting and lowering my expectations.
This is forefront in my mind now that T, a kid with great potential and a prognosis of at-risk FASD, is in Grade 1.
School learning is now more formal and less play based. Expectations have gone up and with it, so have the daily struggles and stress.
Last week, we spoke with his teacher about developing his Individualized Education Plan (IEP) for this school year.
One thing she said struck me immediately: her goal is for T to complete 25% of the Grade 1 curriculum.
I’m an honest and heart-on-my-sleeve person so I immediately voiced my concern and asked if this would mean we start to widen the gaps between T and other kids. How would he ever catch up?
I explained that while the hubby and I recognize T’s prognosis, we hope that disclosing it would not mean teachers use it as a reason to dismiss T’s potential to learn and grow.
His teacher reassured us that she has worked with many children with special needs and explained the purpose of setting IEP goals is to ensure T can feasibly meet these goals and to scaffold his learning.
If T is able to meet these mutually-agreed upon goals, she will continually adjust and increase them throughout the year.
She reassured us that, if anything, she will try even harder with T.
I believed her, as I have a good feeling about his teacher this year.
“I must be taken as I have been made. The success is not mine, the failure is not mine, but the two together make me.”– Charles Dickens, Great Expectations
But I did ruminate about this for a few days after and felt that familiar sense of grief: when the reality of your dreams for your child clashes against the challenging reality.
I’ve written many times that T is a bright, caring, funny, determined and strong-willed child. I still believe in this wholeheartedly.
But I can also see that his academic journey is going to be challenging. There is no doubt the next few years will be very trying.
I have a love-hate relationship with the term “special needs.” I hate the stigma that is attached with this label and find that it can be damaging when it is applied by people who don’t have a full understanding nor are equipped with the tools to support an individual with additional needs.
My biggest worry is that people will limit, dismiss and not try as hard with T, because they will think about why they should even bother or they lose their patience with his exhibited behaviour.
But I also recognize that in order to build empathy and understanding – and to also advocate for and to receive the resource supports for T, we need to engage in open and respectful dialogue about his needs.
“I have been bent and broken, but – I hope – into a better shape.”– Charles Dickens, Great Expectations
We have been very fortunate so far to have met understanding and empathetic professionals in the school and daycare system. We know it won’t always be like this.
For myself, the mental hurdle I always have to leap over is recognizing that adjusting my expectations – such as breaking down T’s learning goals into bite-size feasible pieces in order to build his long-term confidence and success – is not the same as lowering my expectations for him.
If anything, the hubby and I have higher expectations for T, because of the additional effort he requires from us on a daily basis.
I have to remind myself that T is on his own journey and the yardstick we measure him up against is himself and not other kids.
Most days, this is an easy mental model to follow. On some days, especially the frustrating ones, it is tempting to lose sight of the target and to start drawing comparisons with other kids.
It’s a good thing T is an easy kid to love and reminds us through his magical moments of pure endearment to always keep our eyes on the prize.