Not long ago, a reader introduced me to Tiny Superheroes. Tiny Superheroes is a small business run by a mom who makes superhero capes for children facing extraordinary circumstances. Their tag line, "EMPOWERING EXTRAORDINARY KIDS – ONE CAPE AT A TIME!" says it all. Learn more about them here. This little business made me smile and I immediately donated $30 so that a child somewhere might receive one of these cool superhero capes. I also wrote a little note about my two little superheros and was surprised to receive a note letting me that Super Kate and Super Grace would soon be receiving capes of their own.
The capes came in the mail today and, as you can see from the photos and the video below, our girls adore them. They are beautifully made and there was a special note attached for each girl. What struck me as they played with their capes, is that they really felt stronger, stood taller and smiled bigger with those capes on. You can see how serious Grace takes her new superhero status in the photo below. These little capes make a big difference. If you would like to sponsor a child you believe to be a Tiny Superhero please click here.
If you had asked me what Kate's greatest sensory discomfort was, I would have said it was related to her hair. Until today, she did not let us brush her hair and a proper haircut was out of the question. Then something changed. First let me explain a little about why haircuts can be so hard for children with autism spectrum disorder.
Firstly, our children, very often, have sensory processing issues. So, the simple stroke of a hairbrush can be very uncomfortable and even painful for a child who would be known as a sensory-defender. Secondly, our children are very literal. They may fully believe that getting their hair cut will hurt. Thirdly, children with autism often experience levels of anxiety that make a visit to the salon very difficult. And lastly, because communication is often impaired in children with autism it can be very difficult to explain the concept of getting a haircut even with social stories, signs and modelled behaviour.
Unfortunately, a trip to the salon can result in a meltdown for some children on the spectrum. Trust me when I say a meltdown is not a tantrum. A meltdown is usually sparked by an overload of sensory input. Yes, you've felt sensory overload before, too, but the difference is, YOU can regulate yourself. Our children often cannot and will use stimming as a self-regulating tool until even that does not help. It cannot be solved by giving the child what they want, like a tantrum. It must run its course and we do our best to help keep our child and others safe during one of these episodes.
Kate had a handful of haircuts before today. The first took place in a salon and we, along with the other patrons, were treated to a meltdown of biblical proportions. Our amazing hairdresser (our friend really, but for the sake of anonymity we'll call her 'the hairdresser') came to our house for each haircut since. We'd rather not end up like the family in this story: click here.
The haircuts at home took place on our deck. I would hold Kate down with all my strength while her hairdresser cut her hair as quickly and as well as she could while Kate screamed and writhed in my arms. She would often scream so loud and for so long that we would pause and listen for sirens. I still wonder what our neighbours must think.
I once thought it would be a good idea to show Kate the hair that had been cut and had fallen on the deck. I held up the blonde curls hoping it might make her feel better. Remember, when I said they were literal? Yeah, it didn't go well. She shuddered in fear. Things escalated. Oh well, live and learn.
Today, it was time for Grace to get a haircut at the salon. I knew I could bring Kate with me because Kate lives very much in the moment. The salon would not scare her. She cannot predict what is about to happen and she would not have mistakenly thought we were there to get her hair cut. She sat with a Ninja Turtle in each hand and watched the little boy before Grace get his hair shaped into the perfect Back to School Mohawk. Next, Grace was called up. We stood to walk to the chair when we noticed Kate was slipping between us and crawling up to sit in the salon chair. Her hairdresser took full advantage of the opportunity and starting singing the theme song of the Ninja Tutles to Kate while she covered her in an apron and began cutting her hair (I told you she was awesome). Kate squeezed her turtles and watched in the mirror as she got her first real haircut, ever.
I was stunned. The hairdresser was stunned. Grace was stunned. I waited for her to change her mind. I braced for the biting and the crying but they didn't come. She did it. She sat for a haircut like a champ. I am still smiling. Her sister was so proud of her that she asked me to take Kate's picture. She is kindly helping Kate look towards the camera in this photo. You'll understand if this is one of my favourite photos ever. Our team is taking another win today.
Like many in our community, I have been trying to avoid sharing and offering more air time to a letter that has been circulating in the media and across the social networks reminding us that we still have so far to go. If you can stomach it, you can read the letter here.
I originally dismissed this letter as the work of an internet troll. I was shocked to realize that it was legitimate and was being investigated by the police in that area.
I don't know why I was so surprised that this letter was real. If you scan any number of news networks you'll find hate drives most of the stories behind them. I am having a hard time articulating how disgusted I am. I know one thing, though. I know for sure that the person that wrote that letter suffers more than any of us.
Hate is too great a burden to bear. It injures the hater more than it injures the hated. Coretta Scott King
I just want to say that I hope with all my heart that this person is prosecuted to the full extent of the law for their hate crime. They will be fortunate if the courts decide their fate. The courts are bound to be fair and just. The rest of us are not. I am reminded of a favourite line in a favourite book: "There is nothing to be feared like the anger of a gentle person." They have angered so many gentle people.
But, more than that, I hope the family that received this letter is reminded every day that they have the full support of their community locally and the autism community, too. I know they will. It's what we do.
It was brought to my attention, by Kate's awesome autism support worker, that two little boys at Kate's daycare thought it was funny to tell her that her daddy was there to pick her up, because they thought it was funny to watch her get excited and run up the stairs and latch onto a man, not her dad. You see, Kate believes all men are 'daddies' and all women are 'mommies'. She is known for running to any 'mom' or 'dad' that walks in the door and latching onto a leg saying, "Hi, Mama" or "Hi, Dada." I am guilty of laughing at this. I found it cute. The moms and dads that she latches onto find it cute, too…..I think.
The first problem is that now the kids think it is funny, based on my example, and they are picking on her. I don't know which boys and I don't want to know because it was not their fault. It was mine.
The second problem is that this behaviour is dangerous. Although, I know, Kate would choose Alex or I over a stranger, I also know that she would have no problem going with a stranger if we were not there.
Kate's daycare is phenomenal. I don't talk about them because I don't want people to know where Kate spends her days but let me tell you they are wonderful and they protect and love Kate. They quickly spoke to the boys about teasing Kate and informed me of what happened.
Even so, I worry. I worry because Kate does not perceive danger the way other children might. I worry that if a child told Kate her daddy was there to get her, she might go looking for him. The daycare is secure. There are fences and multiple people watching the children at once but a parent worries.
Do your children, autism or not, wander? Do they understand danger?
Little 'B', as we'll call him, is this really cool little kid that burns around our neighbourhood on his little training wheel defying bike. He's that great little kid that weaves in and out of the neighbour's yards greeting everyone he sees. He is independent and he fears nothing. He's a rebel and I like him, a lot.
Kate has noticed him, too.
Kate loves everyone she meets. Autism manifests this way in Kate. She does not distinguish between people outside of her family. This is good and bad. She will greet and hug and 'chat' with anyone who will spend a moment with her. She will hug and kiss and follow (we are working on this) any soul she sees.
Little 'B' is different. Kate watches him.
Could Kate have her first crush?
Kate stands back a little when 'B' comes into our yard. She jibber jabbers happily at him. He doesn't mind. He is that awesome kid that doesn't look at her funny. He doesn't drive away on his bike. He doesn't even look to me for help. He talks to her. He guesses what she might be saying and he answers.
Kate's jibber jabber is extremely difficult to understand when she is excited. When she sees 'B' skid through a mud puddle on his bike, she is over the moon. She flaps and jumps and talks away at 'B'.
Kate: (jibber jabber…..spwash (splash)….babble….)
'B' (to Kate): I can jump father than that, wanna see?
Kate: (babble…I see, I see….jibber jabber)
'B': Ok, watch this.
It is very possible that Kate is exciting about the trick jumps this little daredevil does on his bike. However, I like to think she has developed her first crush.
When 'B' left our yard yesterday, Kate called out, clear as a bell: "Bye 'B'. Wuv ew. See ew Tamarro."
I think it's love. Kate's kind of love. The 'you can do no wrong in my eyes' kind.
'B' just hit the jackpot and he doesn't even know it.
A couple of things:
I am pretty active on Facebook and Twitter and sometimes I forget that some of you do not follow me there. If you would like to follow us on Facebook click here and like our GoTeamKate Facebook Page. Click here if you would to follow us on Twitter.
Secondly, in case you are local and were planning on attending our Bubble Bash on the Commons this weekend, it has been postponed due to rain. Stay tuned for the new date.
Lastly, some of you have asked where you could send a letter or card to Kate or Grace (They will write you back). You can send them care of their dad at his business address:
27 Wellington Row
Saint John, NB E2L 4S1
Autism is a disorder that affects many areas of development but many of us would agree that the issues surrounding communication might be the cruelest of all. And, not for the reasons you might think.
I don't care if Kate cannot recite her ABC's.
I don't care if Kate says "I wuv ew" instead of "I love you", forever.
I don't care if Kate excels academically or if she does not.
I care that Kate struggles to communicate how she feels and what she needs and it ends up in frustrated tears every single day. I care that my frustration cannot begin to compare to hers.
I know that my feelings about Kate's autism will NEVER be as important as Kate's feelings about herself, but for now, while Kate cannot communicate how she feels, I am trying to tell her story as authentically as I can. I fully understand that my perspective comes with all sorts of prior knowledge, experience and expectation that skews the reality of what Kate is going through, but for now, it is what we have. It is our experience to tell and I take issue with those who would determine that I should NOT tell Kate's story because I don't truly understand her condition and that only an adult with autism is capable of understanding her autism and her potential. Attitudes like this are what give the neurodiversity crowd a bad name.
I DO believe that we MUST listen to adults on the spectrum in order to truly understand all the facets of autism. HOWEVER, a parent, whether they are on the spectrum or not, has an unrivalled connection with their child. They have EVERY RIGHT to discuss their child's autism at length. They have EVERY RIGHT to discuss their feelings regrading their child's autism at length. They have EVERY RIGHT to scream and cry. They have EVERY RIGHT to cheer and celebrate.
I am getting increasingly frustrated with reading posts about how neurotpical parents have no real insight into autism. Our children are an extension of ourselves. We FEEL every second of struggle and pain that our children go through. We FEEL every triumph, too.
Isn't it enough that the insurance companies, 'medical professionals' and schools do not allow parent's a voice in their child's treatment? Do you really want to silence us too? Neurodiversity is becoming an increasingly problematic philosophy to me and that is not the road I wished to travel when I began this journey.
Grace and Kate's mom. (Shanell)