So, let me get this straight. If you cannot see it, it must not be there? So, because Kate looks like a blonde angel, eating an apple and watching Princess Sophia she cannot possibly have autism? She cannot be developmentally delayed because you hear her speak and aren't children with autism non-verbal? Don't they scream and hit and flap and jump and spin and otherwise make themselves known so we can rush to their sides and immediately start with behavior modification strategies that will extinguish such unnatural behaviors? Why do you scrunch up your face when I tell you she has autism? Why do you look at her and say; "Really? I don't see it. She seems normal to me?" Is that supposed to be a compliment? Should I breathe a sigh of relief and call my husband up with the good news? "Guess what, honey? Joan says Kate doesn't look like she has autism. We are in the clear!" What are you looking for when you look at her face? Must you see something to believe in it? What about gravity? Newton gets a pass but Kate has to prove it? I see the autism in Kate every single day. Some of you do too, when you are privy to those physical manifestations that she'll treat you to at the grocery store or at the pool. The inappropriate hugging (I know you love it, though), the babble, the verbal stimming, the jumping, the flapping and yes, even the screaming and biting. There are many other ways autism manifests in Kate. Some are amazing and some have us reaching for a box of wine. Either way, Kate has autism. She will always have autism. You may not see it on days when she negotiated her way through her tasks like a champ. You may not see it when her father and I expertly redirect her before it comes bubbling up and overwhelms her little body. You may never see it because you don't want to. You may see some of Kate's behaviors in your own children and it may send you into a state of denial that keeps you forever defending her right to be neurotypical. I love that place of denial. I know it well. Yes, there is such a thing as being on the 'quirky side of normal.' It is even hip to be there, these days. This is not the case for Kate. She has a neurodevelopmental brain disorder. Accept it. We have. She is still perfect in every conceivable way.
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"You want rums Mama?" Kate's eyes stare at me in anticipation because even though it sounds like she is offering me much needed alcohol, she is actually asking if she can play the drums. Kate hasn't figured out pronouns yet so she often offers you the very thing she wants to do, which can get hairy when we are talking about two preschoolers. We are downstairs in our neighbour's basement. The rest of the crew are upstairs enjoying a bbq. Kate has led me down downstairs with the threat of a meltdown I didn't want to face today. She had been down before and she remembers there are instruments for the game rock band in the basement. She remembers the drums. Kate picks up the drumsticks and smashes them together with a "One, Two, Three, Four!" and begins to beat on the drums. Huh? What? Where did she get that? I listen a little more closely. Does she have rhythm? I can't be sure because I sure as hell don't have any. I listen again. Wait a minute…..I think she might. I look around for a witness. Damn everybody else is upstairs. Kate's attention span is pretty non-existent so I know this is it. I left my phone in the wagon. Shit. Fast forward to her first day of music lessons the following week. Kate flitters from instrument to instrument in total Kate style. She never focuses long enough for someone to distinguish whether she gets the idea of the instrument or not. I, of course, urge her to the piano. She, of course, wants the guitar. I have my camera ready because as much as I sometimes criricize the media's obsession with all the feel good stories about the fewer than 1% with savant capabilities, I suspect Kate has some hidden musical talent that will blow us all away. As I watched her struggle to focus on her teacher's instructions and come back constantly for the squeezes she needed to get through her session, I realized that Kate's super talent is the amount of self-regulation it took her to meet our expectations that day. Being in that strange room with a new person and being surrounded by so much of the unknown would present to Kate as a monumental task. She nailed it with only minor issues. That is totally enough for me. The lesson went 'well', relatively speaking. Her teacher sang to her and sweetly ignored Kate as she screamed, "Stop Singing!" We can't wait for next week. As you may have seen on FB, Kate is currently looking for a lead singer for her band, "The My Little Pony Project." Apply below. If you follow us on Facebook (and I hope you do) then you will have no doubt noticed that Grace surprised us all and sailed through Kindergarten Orientation Day. I didn't sleep the night previous because I have seen how her anxiety gets in her way sometimes. She struggles to particpate in activities and she spends more time worrying about her sister than any child should. I don't have to tell the regular readers of this blog how unbelievable proud we are of Grace on any given day. I do however, have to tell her that. So, I made her a little slideshow below. First though, I wanted to give you some history on our Grace. I find this, in many ways, harder to talk about than Kate's autism. Grace was born on April 12, 2008, three weeks early at a whopping 9.8lbs. When the nurse placed her in my arms she delicately announced to me that Grace had been born with extra fingers, a condition called polydactly. (This is NOT the hard part, in fact we loved those little fingers.) I was shocked and confused but I still had this amazing baby in my arms. It would be fine. At least I had the luxury of her condition being described to me by a nurse in those first few moments. Alex was left to figure out for himself what was going on. It kind of makes me giggle when I imagine how many times he must have counted and re-counted her fingers in those first few minutes of looking at her. Funnier still was days later when my friend K was holding her and the little protective mitt slipped off (we hid her condition at first). K thought she had broken Grace's finger as her extra digits had no bones and hung from her hand at an awkward angle. K even laughs at this now. For the very curious of you I have posted a couple of photos. Grace had those little fingers removed with surgery at ten months old. They couldn't simply be tied off because there were nerves in them. They had to be removed surgically and the nerves were tied off back inside her hands. She has tiny scars. We had her hands cast before the surgery so we could show her when she was older. I will admit I was originally very upset at this turn of events, especially when her discharge papers from the hospital called her disfigured but I have since learned that it was merely a cosmetic thing and who cares about the cosmetic things. Her surgeon told us she could have been the fastest piano player in the west if we had of decided to keep them. :) The next thing we went through happened just before Kate was born. It is the hard part. I will say this quick. Grace has had many bouts with pneumonia due to her asthma and during one of these x-rays the doctor saw Grace's heart was enlarged. I googled it. Then I cried. Don't google it. Google doesn't provide accurate information. They also found a heart murmur. We set up an echo which was done days after Kate was born (in fact it was done the same day Kate received a positive test for hypothroidism (which later turned out to be a false postiive). Anyway, thankfully the echo showed no major issues and we monitor Grace through the help of her paediatrician. She tires much more quickly than most kids her age and her asthma often slows her down but otherwise she is a typical kid. I still worry. I constantly worry. Do we ever get to stop worrying? I told you I don't like to talk about this. For Grace: I was playing around with some pictures of the girls today and I decided to pair them up so they could see what they looked like when they were the same age. I threw in some videos and was quite proud of my little digital scrapbook until it dawned on me that people might look at this as a normal vs. autistic child kind of thing. Then I thought, screw it, I can't control what people think. Here are some awesome pictures of my girls right around the same age. Hopefully, you'll enjoy them for what they are and nothing else. I also added in a few pictures of the girls together to show how they have grown together. The "tap dancing" videos at the end are very recent. I knew there was a potential snow day looming last night. As a teacher, I was cautiously optimistic and careful not to jinx it by thinking about it too much. Sure enough, the radio announced that the kids and I did not have to battle through 40 cms of snow today. For some that might mean sleeping in a little. For us, this is not the case. Alex was up at the crack of dawn to snow blow the driveway so he could get to work (no snow days for engineers) and I made the girls pancakes (I only burned most of them). I could have technically sent the girls to daycare as it did not close today but I like to take the opportunity to stay home with them whenever I can. Working mom of a special needs child guilt and all that crap. Today, in hindsight, the children might have been better off a daycare. Before 10 am Kate was gluing my good paintbrushes to the carpet and Grace had already received a swinging punch to her eye courtesy of her little sister. If you know Grace, you know she did not react because she does not like to rock the boat or upset her sister. We are trying to help her stand up to Kate but she is passive right now. She is such an awesome kid and we are working hard to help her stand up for herself. Anyway, It has been one of those days that usually follows a night like we had last night. On the weekend, Alex and I left the kids with Gramma and went away for the night. It was rest we both really needed but we knew that disrupting Kate's routine would probably lead to some issues. We actually leave our kids with either set of grandparents pretty regularly. We were careful to make sure that our kids would be comfortable staying with family from early on. Kate is quick to wave good-bye when we drop her off and is usually only upset when she is separated from her sister. Still though, it does take some adjustment for Kate to get back into her own routine. So, when we arrived home, Kate had a record meltdown when I tried to change her diaper and then, when it was bedtime, well just forget about it. It was rough, it was violent and it was heart-breaking. These nights are relatively rare but they knock us down when they happen. Kate tries so hard to communicate what she is feeling when she is mid-meltdown (see awesome description of a meltdown vs. a tantrum above, borrowed from Autism Daddy) and she gets so frustrated that all the phrases she knows come out all wrong and she spirals to a point where she cannot calm herself. She screams, 'be ight back, no, go, no, no, no, mama, seep no seep daddy, mama no, I take, I take, be ight back, is ok, is ok." And on and on. When the words do not get her message across she resorts to screaming. On this night, autism sucked. On this night, it was so clearly a disability and not a 'difference' to be celebrated that I was willing to take on the neurodiversity crowd with a vengeance. Once I broke the cardinal rule and cuddled with Kate until she calmed down and fell asleep, I headed for bed myself. After a restless sleep, we all got up and started our day. So, while I type this Kate is squishing her banana into the couch and I am seriously considering getting up and doing something about it. I should be using this time to work on Kate's therapy or help Grace work on one of her art projects. Instead, I put on "Hotel Transylvania" and took ten minutes to update the blog readers. I might even take a few minutes to have another coffee and then I am going to suck it up and get back to work/play. It might be exactly what I need. I am dismayed and appalled at the ludicrous position taken (sic) by many other supporters of ABA, who claim that ABA is the only scientifically validated treatment for autism. Not so! That position is not only false, it is absurd. Dr. Bernard Rimland, founder, Autism Society of America On Monday Alex and I will meet with our local MLA Blaine Higgs, who also happens to be New Brunswick's Minister of Finance. We have requested this meeting with the intent to point out the issues facing the autism community in New Brunswick. We would like to highlight the major concerns regarding autism services, ranging from diagnostic issues, early intervention and school-aged children to adults on the spectrum. Of course, this is a huge undertaking and we have under an hour to present our thoughts but nonetheless we are grateful for the audience. Our main issues will be drawn up and detailed for Minister Higgs but I would like to lay them out here as well. I run most of my thoughts, on all things autism, by the readers of this blog and your comments have always been much appreciated. Maybe, you could help me articulate my thoughts for Minister Higgs. If you don't live in New Brunswick, please let me know what works and does not work in your Province/State. I guess it is clear, by my choice of an opening quote, that I feel funding only one treatment (ABA) and touting that treatment as the only evidence-based, scientifically sound treatment for autism is a major concern. If you google "Autism Services in NB" you will come across a few articles detailing how New Brunswick is a leader in the field. They will say things like, "Children in NB receive 20 hours a week of ABA," (15 if you're lucky). "Children in NB can receive a diagnosis of autism as early as 18 months," (it takes that long for some people to even get in to see a specialist) and "services can be implemented in a matter of weeks," (not even close. If you're a loyal reader, you know that our own Kate waited for 177 days to receive service.) Essentially, New Brunswick has been patted on the back in recent years for great strides in implementing autism services and intervention programs. It is time to stop resting on those accolades and look closely at our system once again. Are we truly servicing the autistic population to the best of our abiltiies? (yes, I said autitistic! I have decided that person-first language is currently an argument I am not willing to fight when so many more important issues are looming) The bottom line is: Why do we call it a spectrum and then offer only ONE treatment? Here is what I want Minister Higgs to know: 1. The hospital corporation has been amazing. Our doctors, our OT's, and our Speech Paths have been top drawer. Give them MORE resources and give them above standard training and education in their fields. Hire more of them so they are not spread so thin that they spend their evenings feeling guilty for never having enough time/energy/resources to properly serve their clients. Allow these PROFESSIONALS to be flexible and varied in the services they deliver. They are amazing at what they do and they are in the field everyday. Allow services to be needs-based rather than diagnosis-based. TRUST the medical professionals when they tell you someone could benefit from a therapy. 2. Please, please, please DO NOT put all your eggs in one basket. Allow other therapy options for early intervention. See, Pivotal Response, Floor Time and Son-Rise to name a few. Explore art and music therapy and look at the whole-body approach. Allow the PARENTS and their respective teams to direct the funding to therapies they see as most legitimate and suitable for their children. DO NOT marginalize parents in this process. We know our children better than a room full of autism research scholars. We are vital to setting up appropriate treatments. Listen to us. 3. Boost the services that school-aged children receive. Services dramatically drop off once a child enters the school system. This is unnacceptable. Allow teachers and EA's to be trained in VARIED autism intervention theories. Give us MORE resources and more bodies so that we can feel effective and proud of the work we do with special needs children. 4. Finally, and I don't like to use that word because this, in no way, means that our needs can be fairly expressed in four small paragraphs, but there is a crucial need for policy-makers to implement services that treat autistic individuals across their lifespan. There it is in a nutshell. What am I missing? What can I add? What do you think is imperative? Don't get me started on services for the siblings of kids with special needs because that will have to be for the next meeting! Thanks for listening and please feel free to leave comments below or send me a private message. Kate's therapy has begun! She has a sweet autism support worker and a team we are confident will help her succeed. This kind of thing is always tricky to talk about for me because of how our treatment philosophy differs from that of the province but regardless of that, we are aware of how lucky we are that we live in a province that provides treatment to children with autism until they reach school age. The service dramatically drops off once the child enters school but that is for another post. This post is to celebrate that after 177 days of waiting; our Kate is finally receiving treatment. We are working with her team to modify the treatment plan to suit Kate. We also pay a private therapist to supplement Kate's treatment. Things are starting to come together. While it is not ideal for us, it is a step in the right direction. We will keep fighting to make sure our province expands treatment options but for now we celebrate that Kate has made it off the waiting list. We are so relieved we had a dance party! I have not exactly been private about our experiences in the autism arena. For example, I write down every thought that crosses my mind in this blog. Even still, being in the newspaper seemed a little scarier to me. Even though I check our stats and I know this blog has tens of readers :), I was feeling very exposed while I waited for the article, we were interviewed for, to come out. I adored the reporter and that wasn't my worry but I was worried that people might see the article as a 'woe is us' type of story, where we complained about how difficult it was to raise a child with autism. This is certainly not the impression we wanted to make and I think the article does a good job of painting a fair portrait of a day in our life. We sat down with the reporter for over two hours in Alex's office. Looking back, we likely overwhelmed her with all that we had to say. It was almost as if it was bursting out of us. "Autism is NOT a mental illness. Autism does not equate violent behaviour. The sky is the limit for Kate and all children with autism. It is ludicrous that our province would posit that there is only one 'evidence-based research' approved therapy." And on and on and on. The reporter asked for 'a day in our life' and we found it almost impossible to talk about a day in our life without talking about all these emotionally charged and inherently political topics. She was kind and patient and she listened to us talk over one another trying to get the information out. It would be impossible for any one piece of writing to detail the highs and lows of this ride. I guess that is why I am keeping track here. Ultimately, I know that any attention drawn to the cause is good. We can't afford to have misinformation out there. We need to set the record straight. And, while it is true that even those of us raising children on the spectrum disagree on many issues (see Hey ABA, and She's Flappy When Happy) we would all agree that the world should know how amazing our children are. This issue is so personal to each family and it can be difficult to talk about. Every experience is unique. Every family is on a different path. Well-meaning people can sometimes say the wrong things. (I once brought up the Red Sox dismal post-season at a funeral because I didn't know what to say.) For example, recently, when I was in the hardware store picking out paint for Kate's therapy room the nice lady working was trying to sell me on purple. I explained to her that it was not for a little girl's bedroom but her therapy room and the colour was meant to be soothing because she has autism. Her reaction was pretty intense. She told me what a tragedy and a shame autism was. I had to ask her if she thought I had said cancer? Don't get me wrong, it isn't easy for any of us. Some struggle more than others but priorities please! If you get to tuck your babies in at night then you have not experienced tragedy. See Rockstar Ronan to get your priorities straight. I visit every single day. So, all in all, we are happy with our newspaper debut and we hope people see that Kate is not a set of behaviours to be dealt with but a real little girl with an amazing big sister and a family trying to pave the way for her. I guess my title worked. I got you this far. I am such a sucker for titles like: 5 Ways to Train Your Cat, or 10 Things Every Mother Should Know. I think the reason I click on them is because I am looking for that little piece of information that will make my life easier and I want it quickly and in point-form. It just goes to show you how busy we all are. We need our ground-breaking/life changing advice in under two minutes (less than thirty seconds if you can pull it off.) This must be why I am addicted to Twitter. You won't get life changing or ground-breaking advice from me, at least not on purpose. So, here you go, as promised; that list: 5 THINGS THAT BROKE MY HEART1. Receiving the diagnosis: Yes, I was gutted. We both were. I am not going to pretend that I walked out of there with a new found ambition to fight for the rights of kids with autism everywhere. I walked out of there in stunned silence. I walked out of there as if it was a total surprise when we all know it wasn't. See: the Diagnosis. It sucked and then I cried. 2. Learning that our province would only fund/support one form of treatment (ABA). A treatment that we don't entirely agree with. See: Hey ABA or Not the Lighter Side of Things. 3. Realizing that Grace was getting left behind in all of it and hearing her ask me why Kate still acts like a baby. See: A Letter for Grace. 4. Watching Alex fight so hard to organize Kate's treatment and reach roadblock after roadblock. See: The Brick Wall and Autism Treatment. 5. Waiting and wondering if Kate will ever make friends or be invited to a birthday party. This topic deserves its own post and it is coming but for now: parents out there; listen up. Invite every kid in the class for Christ's sake. How hard is that? And if you know someone who is not doing that, call them an asshole, to their face, with your fist. 5 THINGS THAT MENDED IT1. Kate's amazing therapists and doctors. There are people that get it. There are really progressive people out there that don't follow the status quo. See In Case I Wasn't Clear Before or A Visit to the OT.
2. Watching Grace take charge of Team Kate and help design the logo and take pride in being team Captain. Watching Grace so patiently love her little sister that it could make you weep. 3. Our amazing family. There is no way we could manage half of what we do without them. They take Kate to appointments and help with her diet. They are helping build her sensory room. They watch the girls so we can go to the movies or out with friends. They support us in every imaginable way. 4. Kate's progress and her amazing little personality. See: 5 Lessons on How to Live A Good Life From a Little Girl With Autism. 5. Every single one of you amazing Blog readers. I swear to God when I started this bog I hoped for around ten visitors. I figured, if Kate's therapists or doctors or close family members wanted to keep up to date on her progress they could check in here. We had a few more than ten visitors. We've had over 4000 hits in about 6 weeks. Thank you so much. Kate had an occupational therapy appointment at 3:00 today. The snow was already falling pretty heavily but we decided to make our way to the hospital. We both drive Subaru's because of having to travel with children to appointments in weather like this. Welcome to New Brunswick. Once we arrived Kate got right to work in the waiting room. She loves coming to her appointments. She has memorized the way down the long hallway to the Occupational Therapy department and heads for her favourite toy right away. Once her appointment was underway she got into her favourite therapy toy "the tube". Just look at her face. She adores hiding away in this tube. It is not unusual for children with autism to find comfort in small spaces that provide pressure and privacy. The main reason for her appointment today was to see if Kate would enjoy the therapy swing. We are putting one her in sensory room so we wanted to make sure it was suitable for her. I guess you can tell she likes it. Who wouldn't? Alex even took a video of Kate in the swing to show our blog readers (see below). Can I just say one more time that speech therapy and occupational therapy are the most amazing treatments for Kate. I wish she could spend all day with these therapists. |
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April 2022
AuthorGrace and Kate's mom. (Shanell) |