It would be very easy for me to focus on all the daily hurdles that exist in my world of parenting a boy with exceptionalities. There are so many triggering events every single day that send negative thoughts rolling through my conscious mind, and I have to ask … why him?

  • When William is hungry he visibly shows his hunger the same way any other child shows hunger, but the way we have to feed him doesn’t allow him to taste any of it, except when he throws it up or has reflux … why him?
  • When he needs to go to the bathroom, his body somehow works against him … why him?
  • When he’s happy or excited he gets so tonal that he can’t enjoy the moment he’s excited about … why him?
  • When he clearly wants to tell us something and can’t … why him?
  • When he needs something and we have to guess … why him?
  • When his medications aren’t working anymore because he’s growing … why him?
  • When he’s such a social guy who loves to be with our family and we can’t take him with us to do fun things because his vehicle and public areas don’t accommodate him … why him?

There are so many moments that leave me wondering … why him?

William is 10 years old and there isn’t a day that has gone by where I haven’t had to manage my emotions when it comes to trying to provide the best possible life with as much accessibility as I possibly can for him. I must actively prepare for the hurdles, anticipate and prevent crises and avoid the vortex of feelings that could have me paralyzed and unable to function as his advocate and mom.

Advocating for a special needs child is endless. It exists for every part of his life – school, medical care, accessibility equipment, communication devices and even in daily life at home when decisions need to be made on how to help him manage.    

Every day I’m following up on something – emails, phone calls, questions, discussion, applications, medical specialist referrals, equipment, supplies, medication updates etc. I’m always chasing something to have his needs met.

About three years ago we started researching vehicles for William and about a year ago we placed the order for a van. Two years may seem like a lot of time to research a vehicle but the reality is that we don’t have the capacity to change vehicles frequently when needs change – the market for wheelchair accessible vehicles is a very small market and everyone has different needs. Forecasting William’s future needs takes time and so much consideration. Here in Canada we have limited options for companies who can convert a van to accommodate a child with special needs and any vehicle for him needs to have a lot of accommodations. We went down many rabbit holes trying to find what we needed for him and ran into many dead ends which made the process lengthy. After several failed attempts at finding what we really needed, we settled on the next best option that we could actually order. We paid a deposit and the waiting began.

We have now waited over a year for the wheelchair accessible van we ordered and the factory hasn’t even started building it.

Some may wonder why we don’t just convert a mini van. Well, we absolutely could, however; mini vans have less power and once converted there is more weight to carry and they don’t handle it well. Not to mention, mini vans have less head room and space in general and once converted have fewer seats for additional family members. We specifically want a Ram Promaster because it is lower to the ground, has a truck chassis to bare the weight of the conversion equipment and William’s heavy power wheelchair and will also fit in our garage so that William can be loaded in without having to go outside in inclement weather. Another huge issue we face when taking William anywhere is a place to change him so we need a vehicle that can be that safe and private place for him with seats that convert to a bed. Over time we can add transition equipment to help lift William out of his chair if necessary. These vans also provide a very open interior so that caregivers can easily manage William, they can stand up inside the van and can walk from the driver seat straight through to the back without having to exit the van. There are far more options for conversions to accommodate specific needs in terms of where you access your lift or ramp (side or back) and where you put the wheelchair once loaded (William doesn’t have to ride way in the back, his wheelchair can be secured anywhere and this is handy when we have several passengers).

My patience is definitely running out as I see more and more Amazon vans rolling through every community. They have the Mercedes sprinter vans, Ford cargo vans and the Ram ProMaster vans. I have a hard time swiping through the emotions that come along with my son having to wait for ONE van when Amazon is clearly having no problem getting their vans in hoards. A van for William has now reached more of a crisis state. We only take him out when absolutely necessary which is really only for medical appointments.

I can’t help but feel like this is unfair … why him? Why isn’t a human being’s accessibility and ability to leave their home more of a priority and safety consideration?

~ Keely

Keely is an author and advocate for children living with disabilities. She lives on Vancouver Island in beautiful British Columbia, with her husband, her son William who has cerebral palsy, her two daughters and several four-legged friends.