Posts Tagged ‘WTF moments’


It has always been a weird situation when folks try to make out you’re some kind of super hero or special person for being a parent of an exceptional child. Really? I think all parents that engage with their kids to support them in becoming who they are meant to be are quite amazing regardless of the labels society places on the child. See, the only real trash parent I see are the ones that decide a coping or discipline method is to beat a child or spouse or sexually, emotionally and mentally abuse them (which is why I cheer the Canadian Government’s $7.5 million investment in kid’s help phone during this time of social distancing, perhaps silence will break and we can rescue more from the darkness, but I digress).

I’m a parent of a 14 year old and a 12 year old. Any labels through medical or societal are not their to define my children, rather they are their for communities and society to know what my child needs to thrive, discover, belong and be the most awesome them, they can be. Full stop. Being a parent is hard. Each of us has our own strengths, areas of growth, challenges, and then we are given mini-mes that become a ramped up mirror of our best and worst traits (hey, I knew I was a sarcastic so-so, but trust me when my kids riff on me its really obvious lol). So why do we need to sub-divide?

Within the exceptional child community, why do we sub-divide further? With comments such as, you can’t possibly know because your child can do x-y-z-… we are conditioned to constantly be in apology mode for a spasm, a sound, a spasticity, a stem or a tick…yet…

The world around us, can be as assertively a-holey (to borrow on of my daughter’s favourites of skirting swearing) it wants towards us. Religious can say we did something so our child is being punished for sin, that they need prayer for healing. In religious settings many have heard of our family’s journeys where the elders, long timers, and money givers feel it is their right to make an issue of the “different”, not understanding truly what an imageo dei is an how a diverse mosaic our Holy truly is in human form… yet it is left to us to take the slings and arrows, and to make apologies, up to us to mea culpa, and share the medical history to “educate”. Yet at no point does someone hold the bullier accountable, and threaten to cast them out, instead the surface issues are touched upon, and one does not want to deep dive to the “isms” below the surface. Truly live healing and reconciliation at a community level as the gospel teaches, so instead we leave. Before the social distancing began I was sharing ideas with some non-profits to offer up this spiritual space for families seeking it an not yet ready to traverse the choppy waters. Also knowing that the last 2 places my family has been and is, are safe zones, some may say courageously, but rather I would use the term they came to meet my son with Jesus’ heart.

But I digress. For the fight before these moments was cemented in something deeper. As alluded to. You fight against the passive systematic eugenics for your child to be allowed life. Then you battle the assertive systematic eugenics for them to keep their life. You lift the life up to the Holy Mystery thankful for the love and blessing of parenthood for however long they will be with you, knowing that it truly is a blessing.

Yet as noted, different groups you try to be apart of use “tradition” or “money” as reasons they cannot alter physical spaces for accessibility (making a physical space able to be used by all). Never mind if they are willing to even extend the interpersonal space to allow the different to exist (noting any similarities with any other marginalized group). To the challenge of belonging- this is being known by many, missed when not their, supported in finding and fulfilling purpose– it challenges the concept of the abled, the idea that disability is catching, or that the wrong thing may be said, or what do you do when the child dies? So many things race through minds to create barriers, instead of simply meeting the person before you as… a person.

The other challenge is fighting with other systems that tell you, like the CBE, that you chose to have it, and should be happy with the scraps thrown your way. Our current education minister that believes scrapping aides is a cost saver for the rest of the school year that will be done by home, not understanding the roles fulfilled. The governmental policy not seeing the child as a full person, just as a nuisance that can be spun as the rationale for why other students can’t have things (and yes has been done many times). When tragedy strikes, knowing your child will not receive the same level of support as other children would, because it is too costly to figure out how to aid them in grieving.

To a disability community fractured because everyone chases the funding needed for our children to excel, so instead of exceptional kids and adults, we hear about specific disabilities, and others are left outside. Sadly, as I noted earlier, some families’ take this approach in trying to support one another in the idea of-well your child can– so you don’t get it (or in the struggles to keep plastic straws). A selfish inability to see beyond our own situation, and to understand that we can advocate for something beneficial to other families’ even if it is not directly beneficial to our child because it’s the right thing to do.

The system, politics,Ā  communities, religion, try to beat down upon you that your child or loved one is not a full person. That you should mourn because they may never (fill in the `traditional’ coming of age mile stone) and as such you are missing out.

And ya know what my pastoral response is to it all?

BULLOCKS!!!

Being a parent, uncle, aunt, grandparent, god parent, is a pretty awesome thing. The child before you, that is now in your life regardless of diagnosis or labels is– a friggin’ blessing folks and is looking to us to love them, mentor them, and support them into becoming the most awesome them they can be.

What does that mean? It means celebrating when things happen that are awesome, crying when things change or loss happens, chatting and sharing with the child like you would any child. Doing life together as a family, and standing your ground as a strong advocate when something is unjust, or educate when necessary, but also, regardless of time affiliated with a group, person or family member, when they don’t get it and it becomes detrimental to your mental health or that of your child- END IT!

See my son is 14 years old. 14 amazing years of having a son. Some say how did you raise a son with___. Honestly, I raised a son, this is my son, and truly the only one I know how to raise.Ā  We have had many laughs, tickles, wrestles, experiments, times in hospital, tears when little buddies and grandparents went to the tea party in heaven, his heart convinced me a non-dog person to get a dog…and we cried when our mumma house hippo joined the Jesus Tea Party. Waiting for the next blessing. He has ministered with me, cheered in hockey games, been out in multiple parades collecting donations to help other kids, the first to hug a new friend that he just met, and deeply feel rejection from those that should know better. He chose to be baptized in pre-school, we celebrated his elementary school graduation, and are looking forward to high school. Do we know what the future holds?

No.

But he’s a kid. Kids discover, learn, and define who they are in life. Parents help them cultivate that so that they can become the who they are meant to be.

That is what we are doing. We live each day with gratitude, even those days he’s a weiner because he’s a 14 year old boy and does what 14 year old boys do, and those days when he shows wisdom and compassion through the simplest actions beyond his years.

Society tells you to grieve. I thought it was important to share, that grieving is about making society feel better for their innate fear and hatred of that which does not conform to their “ideals”. The labels and diagnosis are there not to define your child’s boundaries of life, but rather to state what the world needs to do to ensure they belong, grow and thrive into the citizen they are becoming.

Rather live in celebration, push the envelope, learn, discover, laugh, cry, and be the parent you were meant to be with the kids you have.

Shift from grieving to gratitude.

Practice each day, writing out 3 things you are grateful for. Plan your own family milestone celebrations that fit the family you are and are becoming due to who your child is.

Be in the moment. Let hope grow, and love abound.