The children’s centre that Mr. N went to for many of his needs (speech therapy, dietitian, specialist pediatrician for ADOS testing, and ABA Therapy) and Mr. C is on the wait-list for ABA Therapy at was recently looking for parents to join their newly formed Family Advisory Council. I submitted an application and received an email a few days ago saying that due to the overwhelming response they received that there would be meet and greet appointments to determine who were the best fits for the council.
I attended the meet and greet, and loved hearing about the goals they had for the FAC; they want to truly be “family-centred” in their care, and they want to do so by getting the whole family involved, not just in the care plans that are created for the child that uses Grandview’s services, but by offering fun events for the whole family, by offering a place where parents can connect with each other for support, for ideas, for the unique friendships that develop between parents of special needs kids. I am quite thrilled with their plans and ideas, and I truly hope that they were even half as impressed with me as I was with their visions for Grandview.
I won’t know until the 24th or 25th of March if I was selected to be a part of the council, but even if I’m not I know that the 3 women running it will choose those they truly feel will help to enrich Grandview for everyone and that makes me excited to see the great things Grandview’s FAC will be creating in the near future!
I finally told Mr. N about his cousin Joy on Friday afternoon. I hadn’t told him sooner because I just didn’t know how to tell him. But when he asked me who the flower in the kitchen was for I couldn’t put it off any longer. I stumbled and swallowed and began. I told him the flower he saw was for him. It was his good-bye flower from Joy. He wanted to know where she was and why she was saying good-bye. A dear friend had told me what she had said to her daughter and I went with that. I told him that Joy was in the sky now, and that she couldn’t stay any longer with his Auntie and Uncle. He told me he was sad, and that he’d miss her. I cried then, I tried not to, but I couldn’t stop the tears from falling as I looked at my youngest boy so serious and sad as he said “But I can’t see her there” I told him I understood how sad it was to not be able to see her again, but that she’d always be watching over him and she’d always love him and that he could talk to her and she’d hear him just as she always heard his heart.
I know he understood because later on as day turned to night he became quite upset and when I asked him what was wrong he told me “It’s dark outside, it’s dark in the sky, Joy’s afraid of the dark” I promised him that where Joy was it wasn’t ever dark, it’s always bright and filled with love and light. He looked dubious, but nodded and walked away to play with his cars. He comes up to me at various times and says things like “I miss her” “I want to see her” “Why can’t her stay with Auntie and Uncle anymore?” I try my best to answer his questions, and offer him comfort, but I’m struggling to understand the answers myself. So mostly I just tell him it’s okay to be sad and I hug him.
Mr. C has known since the day she passed away that she’s no longer on this plane with us. He’s built a dozen or more snowmen in the backyard, and destroyed each one when the anger overwhelms him at losing her. He told me he does it because I say he’s not allowed to hit other people, and he doesn’t know how else to get the pain and anger out. He’s so much more somber, his quick smile is missing from his beautiful face, a shadow haunts his eyes at all times. He’s withdrawn into himself more, his natural exuberance just isn’t there. I can’t remember the last time I had to remind him to be more quiet.
For the last week my husband has been my rock, he holds me every time I break down, and lets me cry as long as I need, he never rushes me to feel better. He cooks and remembers to do the things my mind can’t seem to hold onto right now. He promises me that it’ll get easier, and that the wounds her passing have left will lessen, they will eventually become easier to deal with. But in just a couple of hours he has to go back to school. Reading week is officially over and I’ll have to do all the mom things I haven’t been really doing since we lost Joy. The idea of this makes me worried. I don’t know how to cope right now other than to push it all down as far as I can, but to truly block it out I have to block out all emotions. Because really, the only reason there’s so much pain is because there is so much love for her. To not feel the pain, I’d have to stop feeling the love, for her, and for everyone including my own children. But that’s not fair to them. So I’ll have to stumble through the pain and the love, and the moments of each day, cause one day it’s gotta get better if I just keep going through the motions long enough.
I feel as if I’ve lost my voice, lost my words, lost myself. I’m struggling to just breathe, and even then there are moments when that hurts so much I can barely do it. I keep myself together by pushing it all down as far into my stomach as I can when I am around others. I do the best I can to pretend that I am strong for all those that are grieving the loss of such a precious child. But I’m not always successful, I try to hide in bathrooms and bedrooms so others don’t see my pain, because it’s not about me right now, it’s about them. They are grieving the loss of a little soul so perfect, so bright with pure light that our world truly is far darker without her here with us. I feel broken, shattered, and torn apart. I know that no matter what I will never be the same again. And when I feel like I can’t even breathe through the pain of losing my niece, I think of her parents and how I know without a shadow of a doubt that it is a million times worse for them. I want to fix it for them, I want to ease their pain, but I know there’s nothing I can do. I can’t bring their Joy back. I can’t mend their shattered hearts. I try to stay busy, I try to do things or cuddle with my own wee ones, but nothing eases the pain at losing her. There is no comfort for me or for her parents or for so many others that are also struggling to just breathe through this tragedy.
I love you Jo-Jo, and I’m sorry, I miss you so much princess, more than words can ever say.
Peggy O’Mara said “The way we talk to our children becomes their inner voice” She was right, on so many levels she was right. The way we talk to them directly effects how they will think of themselves as they grow up, and once they are grown. IF they are always told things that break down their self-esteem and make them feel bad about themselves they will eventually grow into adults that believe they are not worthwhile. There are many times in each persons life where circumstances or events feel unfair or cruel or outright horrendous. We as parents do not need to make those situations worse by instilling a lack of self-worth in them, when that is exactly what they need to help them get through those times. The world isn’t fair, and life can be intensely cruel, I want, no I need to know that my children’s inner voice will tell them a few specific things when those times happen to them:
1) You are an amazing being worthy of respect.
2) You are loved exactly as you are, and you are worthy of love exactly as you are.
3) There is always a solution, it might not be easy but it’s possible to make anything better than it is.
4) You are capable of creating that solution and following through with it.
It is because I know that my words will become their inner voice that I try to choose very carefully what I say to them, especially when I am upset or disappointed with their actions. They will make mistakes and bad choices at times as all human beings do! But how I speak to them, and what I say will effect them deeply, so I am mindful of what I say because I want their inner voice to be a positive one.
On the second day of our birthday adventure we went to the Butterfly Conservatory in Niagara Falls.
I loved all the butterflies fluttering around and giggled while Miss. G was getting excited watching them fly. Miss D was enthralled as well and I felt like I was in a fairy tale setting between the tropical plants and the beautiful butterflies flying all about. My personal favorite was one that was native to Australia with the most stunning green wings I have ever seen. While my husband adored the Blue Morphos and thought it was fantastic that they kept coming to see him because of his iridescent blue sunglasses perched atop his head.
After grabbing our lunches out of the van, Miss B says “Daddy, the front tire is hissing” We both look, and sure enough the front and back passenger side tires are flat!
We decided to continue with our adventure for a bit more as we figured out what we were going to do so that the kids were warm and having fun while we worked out a plan. After seeing the most amazing exhibit of butterflies and being thoroughly enchanted with the place I asked the manager John if he knew of a Canadian Tire nearby that we could get a tin of tire sealant to hopefully get the tires to last until we could get home and buy a new set. Instead of just giving us directions (which he did) he then went even further…
He talked with Cedric the maintenance guy and then directed my husband to the service door where Cedric was waiting with an air compressor. Cedric then filled all 4 of our tires, and Mr. C called him the magic van fixer (I concurred completely) and we were able to get to the Canadian Tire to buy the sealant. If it hadn’t of been for these 2 gentleman’s wonderful kindness we wouldn’t have made it out of the parking lot! (Our front tire takes a total of 44PSI and Cedric had to add 42PSI’s)
They didn’t have to help to such a degree, we could have been forced to call a tow truck for the van plus figure out bus schedules to help get most of us home as no tow truck has enough space for 7 passengers! But they both went above and beyond their jobs to help out a family far from home. Their kindness truly touched my husband and I.
It started as an innocent story told by a nice young man, and I was quietly smiling at the pleasant moment between him and my husband…and then there it was, one of the very few words I do NOT allow to be said in my house or near my kids “retarded”. He was speaking about how he felt someone was looking at him at that point in the story. I’m sure he didn’t actually mean that he believed they thought he was mentally challenged. He meant that they looked at him strangely, as if he was silly, unrefined, uncouth, or even loutish. I then heard a little voice say “what retarded?” Mr. N had heard him.
I called him away to talk to him, I knew he had not thought of what he was saying, especially in the context of where he was saying it. We spoke, I explained how there are very few things I’m not okay with being said in my house, but that word is certainly one of them. I watched his face change from confusion to surprise to remorseful as he listened to me explain why I am not accepting of that word being said in the way that it was.
I didn’t yell or rant, I wasn’t angry with him, not when I heard it, not when he looked surprised at first that I was saying it wasn’t allowed, not as I explained why. There was no anger in my heart because he truly is a sweet boy that adores my sons. He wouldn’t purposely hurt them, wouldn’t purposely, callously use a word society uses to mean “less than” wouldn’t degrade them by stating they were less than him. He was simply a teenager using a common slang word.
I don’t think he’ll choose that word again, I know that if it should pop into his thoughts after today his mind will conjure up a picture of my boys and what that word has the power to make society believe about those with special needs. And I know he’ll choose a different word. Because words truly do have power, power to shape how we perceive life, how we decide who is our equal, and who is not, and how we will treat both. I know he’ll choose other words that don’t demean the boys he adores, because he’s good person with a good heart, who is now more aware of why a common word should not be commonplace in our vocabularies.
There are moments in life when we just want to let out a primal scream of anger or rage, moments when our fears cloud our minds and make our fingers itch for the feel of porcelain between them to simply throw and watch shatter. As if we could shatter the fears or doubts that shimmer and sway in the vast twisting and turning chasms of our 3 am thoughts.
I have had the moments many times before, and I am sure I will in the future, because lets face it, life isn’t always rainbows and roses, sometimes it’s about storms so bad your whole world is rocked and blown apart. There is a lovely woman involved in Health Advocacy named Heather Von St. James who has a place where I can smash plates to my hearts content. They are virtual plates in a virtual place (her blog) but I still find the ability to write down my fears or apprehensions and smash them very cathartic. The irony for me of her site is that I had only just been telling a friend to think of life as “If I could live without fear, I’d…” and here I am being given the opportunity to metaphorically smash my own fears to bits, the irony of it all is rather poetic
Heather didn’t make her site because she was having a bad day and figured others could use some virtual plate smashing too (although some days I totally can! She made it as a way to celebrate actually having a bonfire in her backyard and smashing actual plates into it with fears written on them to commemorate her surgery. See she had a lung removed due to cancer, she was diagnosed when her first daughter was only a few months old, and the fears that cancer brought are what she smashed in that first bonfire. Now each year they have another on February 2nd, but Boston’s a wee bit far for me, and so dear readers I urge you to visit her site (Links at the bottom) and free yourself from any fears you might be holding onto. (Without having to clean up broken plate pieces either!
My first “date” with my now husband was an outing to go rock climbing. I say date like that because it was supposed to be just two friends having a bit of fun trying something new together. Perhaps if we’d done something else together it would have stayed just friends hanging out, but there was something about being up that high, looking down and realizing that I had to trust this man with my safety, this man was the reason I wasn’t going to fall. Sounds a bit melodramatic when I re-read that part lol, but that’s how I felt. He confessed he felt the same when he was up at the top, and that it made him look at me differently. It made him think about me, who I was, what I stood for, and the fact that he could indeed trust me with his safety and perhaps even his heart.
I had been rock climbing many times before, only I never actually climbed when I went, instead I belayed for my eldest every week. I started taking Mr. C when he was 3 and a half years old. See he had a fixation with climbing the furniture at home and I figured if he was climbing the furniture it was because he wanted to climb stuff in general (I know, total genius on my part lol) Since I didn’t like him climbing the furniture I thought about what would be a great equivalent and came up with rock climbing. He loved it, and so we’d go and I’d belay for him while he climbed to his heart’s content.
Fast-forward the years to now…There is a rock climbing wall at our local YMCA that members can use anytime they want, IF they are certified by the Y to do so. They also offer an instructor there every Saturday from noon till 2pm that will belay for anyone interested, but because it’s a once a week thing, there are lots of kids eager to climb and I just find it difficult because of having 2-4 other children with me every Saturday especially the wonderful Mr. N and Miss. G, both of whom seemed to have inherited my deficit in the patience region, and so aren’t all that great at sitting in their stroller just now waiting in line for the elder 1-3 kids to climb. However, each Monday night from 7:30-8:30pm the Y offers a certification class! So of course last night I was at there showing off my ability to tie really secure knots to the friendly instructor and by the end of it she had certified me.
I can now take the wee ones any day or time to use the rock climbing wall, I can even belay for my husband again which might be a fun night out, filled with reminders of our beginning and the very potent reminder to trust one another, because we will be there for each other no matter what transpires, no matter what life throws at us, we’ll always watch each other’s butts as we climb the obstacles life puts in our paths.
A few months ago I went out and bought a mattress. I then threw out the couch in my living room and promptly put the mattress in the living room instead. My husband was aghast at my plan originally, after all mattresses are for bedrooms and sleeping and couches are for living rooms and sitting. But there was a theory to my outwardly odd idea…
What if Mr. N would accept physical touch more if he could slowly inch his way towards it? What if by having such a large space to sprawl on with his siblings and myself on a daily basis he would eventually become more comfortable with touching other people? What if by exposing him to the constant opportunity for physical touch he eventually started to view those opportunities as a positive thing?
So theory in mind, and a tentative hope in my heart for a time when Mr. N would be perhaps accept regular physical contact with those of us that loved him I changed our living room and made it quite an unconventional area. I bought 1/2 dozen big pillows and scattered them about the new “couch” and sprawled out. He was adamant at first that no one be touching him even a little, not a leg, or arm or torso could be in direct physical contact with anyone of us. But slowly, as the days went by it changed…First he didn’t notice when my leg was “accidentally” touching his…Still many more days passed and then one otherwise gloomy afternoon he plopped down beside me, and his whole left leg was against me, but he appeared to not notice! A few weeks went by with that being the level of contact he could handle, and believe me when I say I was thrilled with just that, but it didn’t stop there…Then it was him actively initiating contact by laying snuggled up to someone….Just last night he tried to stay up after he was told it was time for bed, what “tactic” did he use? He kept asking for kisses and of course his dad and I kept obliging!
There are still moments when he’s overwhelmed and will say “Don’t look at me” or “Don’t talk to me” and while he’s told he has to say it politely, (we are helping him to learn sentences he can use to say the same thing in a polite manner) he still has a right to vocalize how he is feeling and to decide what level of interaction he wants with someone else.
While my living room might look strange to some I don’t really care, because it has been SO worth it. Having a mattress in our living room has helped Mr. N to be okay with physical touch. While it’s not a constant yet that he actively seeks out physical touch, he does regularly seek it out now, and to finally be able to show my youngest son that I love him through touch, through snuggles and hugs and kisses upon his soft brow, all while he’s still actually awake and aware of it, that dear readers is a blessing that brings tears of joy to my eyes.
I read another’s blog post today. It can be found here. What I got from it was that it was about his fears for his Autistic daughter’s future after watching two girls from the same grade not even notice her during a morning walk. As well as his hopes for his daughter’s future after attending a dinner filled with Autistic young adults.
It struck a cord with me because there are moments when I worry for my boys. I worry sometimes as I watch other children surpass them socially, I worry as I see news reports of an 11 year old Autistic girl who didn’t respond being tasered by police when found walking nude along a free-way. (Full story found here) I worry when I think of the only time Mr. C was in school (preschool) and his teacher told him he wasn’t good, that he was lacking and so many other things that tore at his fragile self-esteem which lead me to taking him out of there and choosing homeschooling instead because I didn’t want to risk him having more teachers like that. I worry when I start to think of the world as it is right now in regards to acceptance and the lip service that is often given, but real efforts not.
I was still thinking of it when I was getting Mr. N out of the bath (juice, play-doh, and stickers make one huge mess lol) as I closed the bathroom door behind us, for the first time he noticed something I’d forgotten was there; a blue index card I’d written that says “You are perfect exactly as you are” Originally I’d written it and put it on the outside of the bathroom door for the 3 children quickly getting older and noticing the media’s messages about superficial images. But he pointed at it and asked what it said. I read it to him and he smiled and said “Awe” and I asked him who it was about, he told me me it was about him, that it was his… He was right. He IS perfect exactly as he is, all of my children are, and instead of being worried about their future I’m more determined than ever to ensure I help to change the world’s perception of Autism so that people will be more open to truly seeing them. To talk and write and do whatever it takes to help create the world I want for them, one where they and others are valued as they are, one where diversity is embraced, one where others see the value they can bring to a friendship and try to cultivate them, one that sees my boys and all people as perfect exactly as they are.