Piping Hot Bag of Sh*t that is a diagnosis.
Not long ago I met a mom whose daughter was diagnosed with the same disorder as our daughter. She sent me a lovely note thanking me and I replied with an abbreviated version of what I have written here. My email to her was the inspiration for this post because there are newly diagnosed children each day and families suddenly grappling with what I call the Piping Hot Bag of Sh*t that is a diagnosis.
My husband thought meeting a newly diagnosed family might hurl me into the abyss that was the first months after we received our daughter’s diagnosis. My thinking, was that it would be an opportunity to bring hope, humour, and reality as I am known to do: with honesty, always, but also with the perspective that looking at the world through a lens of possibility brings.
And it was indeed that…in fact, more. Because when we got the diagnosis I felt lost in a tsunami of fear and sorrow. And now, bearing witness to another’s journey having earned my stripes as a mom of a child with extraordinary needs, my soul sparked with joy that little bit more because I am on the other side of it; I am not clinging to what could/should/would have been. I am present. I have said before that getting through it doesn’t mean you’ve mastered it, rather that Mastery means you have gained resiliency. There are moments when I submit to the sadness for a while but that while is now a day, maybe two. And it will be the same for you.
In Game of Thrones, there were two occasions when Tyrion Lannister was on trial and had to fight for his life. As a little person, Dwarf being the vernacular of the series, he needed someone to take his place — be his Champion to even the odds of living. I speak about putting on an inner armor when we go out to fortify myself. And the truth is, I am a Champion as much as I am her mother, her educator. My job is to create a foundation of self-esteem so strong, so impermeable that on it she can grow, learn, discover, and challenge herself just as her neurotypical sisters do.
Who Is Your Child’s Champion?
I am her Champion. You are your child’s. You battle on their behalf — and that doesn’t mean you shield them, it means as it does in Game Of Thrones that you level the odds for living. So how about we spend a bit of time together outlining what that means?
The truth is that your child, like anyone else, will have as full a life as you decide they will have. What does this mean? It means that she can languish in a chair and do little more than watch something on a loop or she can be taught in one or various modalities of communication, have new and different experiences brought to them, and be given the same right to education as everyone. As Champions, our leveling of the field involves finding opportunities for the experience of life and where there seem to be none, do our best to create them. It means slaying our child’s attacker (disorder) and all they bring with them.
It means advocating (mistakenly understood as fighting) for services, equality, funds, and educational and therapeutic support. And one of the very most significant ways that you can be a true Champion for your child is by helping them communicate. I see this as the single biggest way parents or loved ones unknowing create barriers. The challenge here is while we naturally teach our verbal children to speak in whatever language(s) we know, to teach a child who may never be verbal to “speak” requires that we learn a new language ourselves: Augmentative and Assistive Communication.
Yeah, I never said that being a Champion would be easy.
We started with the rudimentary and extremely useful yes/no. For yes, our daughter, Téa, learned to look at us or the object and for no, to look away from us/the object. Then, we moved to PEC (Picture Exchange Communication) to give words (via images) to items. Then and still on-going is the use of an eye gaze communication device called Tobii. I speak of communication first because it is the single most important way to demonstrate to your child that they matter; their voices matter — their ideas, feelings, fears, and wishes have value equal to that of everyone else’s. In an ableist world, where our language is built around the most “able”, it is particularly important to cultivate this. I laugh with our daughter that she can speak more languages than anyone I know: she speaks eyebrow, pec, eye-gaze, vocalizing, English and maybe understands Spanish and French too. My daughter can convey more in a single subtle facial gesture than most can when rambling for minutes on end.
Communication will also allow their world (and yours, frankly) to open up. City programs and non-profits offer recreational and instructional programs. Explore them and discover whether your child is musical and athletic and artistic. Or none of it. Maybe, they are a thinker. An observer who enjoys and gets a rich experience out of observing and taking in the world around them in a variety of settings. The biggest mistake I would caution you against is presuming interest or a lack thereof.
How You Speak Matters
Shape the notion of value and interest with “I wonder” sentences. For instance, “I wonder whether you are enjoying the music as I am.” This kind of dialogue is possible when you remember (or realize) that your child is a child first and the diagnosis or disorder they contend with secondary. How you interact with them about it will shape how they incorporate it into their life and regard themselves.
She is not your Rett Angle (puke) or pRETTy girl. He is not your Downs baby, or any other assignation. She/he/they is Sawyer, or Téa, or Rachel, or Emma, or Aiden, or Taylor, or Alex, or, or, or. Delicious child of yours, full of potential — and whatever that potential is, is as unknown for them as it is for every single human being. So don’t put limits — imaginary or otherwise — as others wrongly do. Simply look for possibilities and a good place to begin to find out about these programs is online and via social media.
On social media, look for groups that are supportive more than sorrowful. Sometimes, shared sorrow is very supportive; it can feel like camaraderie. It lessens our pain because it shows us that we are not the only ones struggling or suffering or raging at the world. But it can be a poison if you sit in it too long.
Two I like a LOT are both on Facebook: PAL (a parent resource group on Facebook that is an excellent and truly supportive and informative experience) and AAC Through Motivate, Model, Move Out Of The Way (a group by Kate Ahern which will elevate your understanding of communication and learning exponentially).
Practically speaking, you will want to connect to whatever organization in your area supports families. Your child’s doctor, nurse practitioner, or specialist should know. If they don’t, ask a social worker. These organizations are in place to support families (to greater and lesser degrees) and help connect them to other resources and funding.
Things to ask about:
- PSW hrs: Personal Support Worker. You may feel you don’t need them now, but get them now anyway because: a) it really does help immensely, b) it takes a while to get the right people in place, c) it is important to set a precedent for need…think of it like a budget — use it or loose it/never get it.
- Respite Funding. Your caseworker will need to apply for this for you. Costs can cover babysitting, activities, camp, recreational programs. It is a sum of funds that you are awarded which you invoice the government for, at least where I live. In your area, it may be different. For instance, if I pay $1200 for camp, I send the paid receipt to the govt and they give me back the $1200 up to whatever total amount you are given.
- Easter Seals Incontinence Grant is money you get up front for buying diapers for children older than 2 yrs. From time to time they will ask for receipts as part of an audit that proves you are indeed buying diapers.
- Government Programs: there are respite and funding programs that different areas have in place. A GOOD social worker will give you all the necessary forms and either fill them in for you or with you. I missed out on a lot of money for services because the forms overwhelmed me. I did not have a GOOD social worker. I do now. Get yours.
How’s that for starters?
If there are things you think would be useful to include or that you want to know about, let me hear from you and we’ll update this primer.
What I hope you take away most of all, cherish close to your heart, is a realization that no one knows what or where limits lie — so don’t stop investing yourself in your child’s self-esteem, sense of self, and experiences to grow.
This is one area in life where the definition of success is in a life not ignored.