In all honesty this is one of the most difficult posts to get my butt to the computer to compose. Most of the blog posts erupting from “Life in the Special Lane” had definite purpose, a story to tell, a win for Hannah to brag about, or difficulties to share. As the administrator of this blog I have access to the stats. It’s fun to see on publish day the amount of readers and where in the world they are all from (literally). My wounded pride gets the better of me when I see a blog stat that does not get high numbers and I have realized after this many years that people like ‘feel good’ stories. The blog posts where Hannah has been included, or when she bought a bag of chips or when she graduated all received really high stats and quite honestly that feels great as a writer to see.
But that’s not life. For every high there are many, many lows or sometimes worse – mundane-ness in our life. So the blog posts where I speak of the difficulties and some of the deeper thoughts of autism life do not always get high stats.
I was wondering about ending the blog because I feel the years of seeing many new wins are complete and we are maybe in the years of simply coasting rather than soaring. However I had a couple of wise friends remind me that it is not about the numbers however maybe it is about the ‘right’ person who is reading. Maybe it is a frustrated or scared new autism mom, or a friend of a family supporting an autism child/adult or somebody wanting to work in the field. Heaven knows I have had much feedback from people I have never met. We are all connected when we decide on honesty and transparency. So pride aside – I write on.
Me and my A- personality like to have goals. Definite reasons and plans for life and for the day and hours. When Hannah was young and was in the ABA program that fit well with my personality. Goals, data, science, clinics, papers and the beloved organized binder (with tabs!!) were part of our day and it felt – no we knew that we were making gains. Now that ABA is a thing of the past (sniff sniff) it is sometimes difficult to find my purpose with this here autism life.
And I have been mulling over this for awhile. What’s my purpose? Besides my few casual jobs that I do that I work around Hannah’s schedule, is this all I am good for? Dressing, toileting, assisting in self care, feeding, entertaining, planning, teaching and everything else that one needs in a day – this is reality. While we have others that assist in her life she needs a constant. A rock. Me. Sometimes I don’t want the job. I’ve given up that she will turn the shower on by herself, that she will put her shirt on by herself, that she will fix a meal (even a simple one) by herself, that she will anticipate the weather and dress accordingly, that she will text or communicate on her own, that she will ask about my day, … oh I could go on an on. When we had hope I had drive. The hope for many of this is gone and I am in acceptance mode. (It was a long ugly road).
So how do I accept this? How do I find joy in our day to day life when it’s pretty silent?
I am obsessed with the man and the workings of Jean Vanier – a theologian, humanitarian and philosopher that founded the L’Arche communities – communities where those with developmental disabilities live in community with those typically abled. To hear him speak sends chills and tears throughout me. The kindness, gentleness and love just ooze from his being. He speaks of his interactions of those with disabilities and I cling to his words. Partially because he’s that good and partially because there are not a whole lot of role models out there for me to obsess over in this field. He speaks of what we can learn from living with those ‘less than’ as we would say saying that everyone wants to know that “they are here” and that “they are loved”.
Clinging to his words sets a new goal for me. Rather than ‘saving Hannah from the throes of autism’ or rather having her meet her own true potential my goal can be to let Hannah know that ‘she is here’ and that ‘she is loved’. That every act I do is showing God’s love. Every sock I pull out of the drawer for her, every piece of toilet paper that I use, every granola bar that I purchase so she can have her favourite snack (oops I forgot she can prepare ONE meal for herself! She can open a granola bar!), every text I send to plan some love and fun in her life, every paper we fill out for her future, and every time I wipe her face to keep her clean, etc. I am the hands of God. Showing love showing compassion and showing humility. (After all I could be doing things waaaaay more important – is where I tend to go).
Now some moms/parents just naturally do this. They don’t need to think about a life of servant-hood to their children. It must be nice to have that quality. I do not bestow this – hence the work-shopping of this all.
So if this ideology was plain ol’ cake, then I was given a wonderful serving of icing this past week in form of a song. “Kindness” written by Brian McLaren and performed by one of my favourite singer/songwriters Steve Bell.
Living a life supporting those with special needs has zero glamour to it. It can be tough, scary, boring, exhausting and lonely. It also is lovely, beautiful, deep and opens doors that one didn’t even know existing. Windows to see beauty that not everyone gets access to. We are thankful to God for all God’s provisions. And there are a lot.
“KINDNESS” – written by Bran McLaren and performed by Steve Bell
Christ has no body here but ours
No hands no feet here on earth but ours
Ours are the eyes through which he looks
On this world with kindness.
Ours are the hands through which he works.
Ours are the feet through which he moves.
Our are the voices through which he speaks
To this world with kindness.
Through our touch, our smile, our listening ear
Embodies in us. Jesus is living here.
Let us go now, inspirited. Into this world with kindness.