I made some changes to the site. Most importantly, I purchased the domain name. So, now we own GoTeamKate.com. Kind of exciting but also a little more pricey than free. We are working on some products (because people have been asking) to sell to raise money to keep the website going, support Kate's treatments and help with autism awareness. I created the logo seen here and we are working on getting it onto some products. Check out the Shop section of the site to learn more but remember, things are still in progress. I would be really interested in hearing some feedback about the logo, the potential products, the pricing…whatever. It might be more likely that we lose money on this little venture but either way I would be super proud to see these shirts out there. So, please use the contact form on the homepage to send in a comment because I am not sure if you can comment on the shop page. Thanks for reading. We have had over 4000 hits and we are so grateful.
I am feeling down tonight. I know I will have to run into some of you readers in the grocery store and it really makes me not want to write this because I don't want to people to think I am always feeling this way. There are moments when I feel down. I think that is fair to say about everyone in some way. Today is one of those days for me. I may not even publish this post. I am looking around the house and making note of how autism has taken over our lives in so many ways. There is a stack of books on my beside table with titles like "The Autism Revolution" and "ChallengingThe Myths of Autism", among others. Gone are the stacks of books I would pick up on a friend's suggestion or while browsing the bookstore." Our calendar is covered with Kate's upcoming appointments. Much of our conversations are centred around who will be able to take the time off work to take Kate to these appointments. Gone are the notes about swimming lessons and playdates. Our cupboard is full of vitamins and supplements and gluten-free and casein-free foods that we are trying desperately to get her to eat (autism parent's, you know their diet is limited on a good day.) God, do I sound like I am complaining about helping my little girl? Even as I re-read what I just wrote I am feeling guilty because I am essentially saying that Kate's autism is taking over our lives and it is making me sad. How awful is that? How sad she would feel if she knew I was thinking like this. I really don't mind reading and researching and fighting for Kate all day long. I guess, in some ways, I wish I didn't have to. I think the neurodiversity movement will jump down my throat when I say this, but I wish Kate could recover. I wish she didn't have these challenges. Yesterday when Alex and I were driving with Kate he told me how when he is driving her to daycare in the morning she will yell out "GO" when he gets to the stop sign at the end of the road. I made a joke about her getting her licence someday and being a crazy driver. He didn't laugh and when I looked at him I could see his face was so sad. I knew what he was thinking. Will Kate ever get a licence? Will she ever be independent? Kate has some language and we are so grateful for that. But, how far will she go? How come no one will say the words high-functioning to us? We have been throwing that term around at therapy and doctor appointments waiting to see hear it said back to us and it hasn't happened. What does that mean? I am too new in the game to understand all the semantics that are tossed about on the autism blogs, groups and sites. I am getting a sense that people are very emotionally tied to some terms used in connection with autism. I guess 'high-functioning' is that term for me right now. Kate is still so young. We are hopeful that she will gain the skills, once treatment begins, to live a 'normal' life. We struggle with thoughts that she won't. One of the shittiest things about autism is that you are robbed of the comfort you get in assuming your child will grow up and become independent and start a family of their own. I didn't even realize that this idea was a luxury. I know that not all neurotypical kids grow up to become independent members of society with little families of their own but I do know their parents at least can make that assumption when they are staring in their little toddlers face. They can take some comfort in the fact that they are born with the things they need to do this. I'm jealous. I know I should not be wasting time feeling sorry for myself and get back to working on organizing her treatments but it is just kind of pouring out of me now. I definitely have some weak moments and this is one. And now that I have brought you down I am going to cheer you up with this little slideshow of really cute baby animals. You're welcome. *Update: After I wrote this I came across another post in a great blog called "Life His Way". Check out that post here. It answered me in the nicest possible way.
Every time we feel like we are getting somewhere there seems to come a huge setback. I am not looking for sympathy here. In fact, posting vaguely sad status updates on Facebook to look for attention is a major pet peeve. I am just angry and this is as good a place as any to vent. I know other autism parents are reading and I know some know too well how we feel right now. We have made no secret of the fact that we are beyond frustrated with the wait for Kate's therapy to start. Furthermore, we have been vocal about our issues with ABA. If ABA worked for you I am thrilled for you. I have no issues with whatever works for your child. You are the parent and you know best. Up until moments ago, we thought, we had solved those problems. We had a progressive, holistic, multi-therapy trained autism support worker ready to begin Kate's treatment at her daycare. It is Christmas Eve and I've just finished reading the email detailing to me why this will no longer be possible. I don't fault the parties involved as much as I fault this bullshit issue of only allowing funding for one autism treatment in NB. The NB government will only fund ABA, as I have said before, and for those of us that believe there are better suited therapies for our children it has caused immense difficulties. The quality people we search for are usually unwilling to work under the NB governments current model for autism therapy. I understand, I really do. It is difficult to maintain your integrity when you have spent your career working towards a multi-therapy approach, and work under a system that you believe is a disservice to the autism community. What bothers me is that this issue is so polarizing that we cannot even find a middle ground for the sake of a child. Surely, New Brunswick is not so short-sighted that we cannot see the future of autism therapy is changing. Please allow us to direct our funds towards a treatment that we see fit. We know Kate. We know Kate's autism. What is that saying, "If you've seen one kid with autism, you've seen one kids with autism." You don't know our Kate like we do. Don't make this huge decision for us. This blanket approach to treatment is screwing us in more ways than one. Alex is devastated at this current turn of events. He worked so hard to organize all this. You wouldn't believe the hoops he and others had to jump through to organize this. There are phone calls and letters and emails and meetings with many different people. I am heartbroken to see how defeated he looks tonight. Alex tells me I lose credibility when I swear on here. He is so straight-laced. I love him for that. But for tonight, there is only one thing to say. Stop fucking around and put the kids first. These are our babies. You are messing with their future. EVOLVE!
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.
I have been hearing that all this talk about autism and a connection to violence is being perpetuated mainly by the autism community who simply cannot let it go and continue to scream out about how ludicrous this claim is. Let me tell you that this is bullshit. While it is a difficult decision to decide whether to repost such a vile thought as is seen in this screen shot, in the end we choose to repost as a warning. We continue to speak out because unless we are preparing our 'teams' to defend us when things like this Facebook page pop up we do not feel like we are protecting our children. For now, they hide behind their social media but we have teams behind us. We have teams of people that would squash haters like this to protect Kate and kids like her.
I was inspired to write this post after reading a blog post (link coming soon) about a mom who was frustrated when her little boy with autism would destroy his artwork after finishing it. He was no doubt finding some sensory pleasure in ripping the paper and as a teacher and a mom I can fully relate to the frustration she was feeling. I have been guilty of routinely setting up elaborate craft projects for girls. I wanted them to turn out perfect. I wanted to put them on display. I would spend evenings scouring Pinterest for the cutest ideas with full intentions to post the finished product to Facebook and then sit back and count the "likes." It made me feel like a good mom, an organized mom, and a mom who could go toe-to-toe with those Pinterest superstars that make us question our parenting skills because we were not able to help our child build the Taj Mahal to scale from gluten-free pasta. Now, I know there is pressure on the dad's out there for many reasons, but unless you've felt the smug look of the mom who makes all of her kids clothes while volunteering at hospice and chairing the Home and School Committee, you haven't felt mommy pressure (oh and she is probably and avid runner too.) Ever since Kate was diagnosed with autism I have found that keeping up with these moms is futile. These days, I am too busy to compete. The therapies and appointments are non-stop and the research is endless and what little time we have left after all this goes to having fun with our kids. We play and make messes and sometimes we create beautiful paintings or sculptures and then relish in letting the kids squish them or crumple them up. I am learning that the process is much more important than the product. Kids know this innately. Kids with autism live this. Kate does not need to impress you with her artwork. She just needs the chance to be creative. This is a philosophy that could carry forward to many areas of your life. And to the Pinterest superstar moms: It is okay to get some sleep instead of making your life appear perfect. I won't be judging you. I am too busy managing melt-downs and avoiding your disapproving glares.
Christmas day was great. It is obviously a tough season for kids with sensory issues but Kate handled it like a champ. Grace was as sweet and thoughtful as ever and worried more about delivering presents to others than opening them herself. She was even kind enough to tell you what was in the gift before you opened it :). Kate opened a few presents but was mostly finished with that business soon after we woke up. If you asked her to open a present she would say, "no presents, no pictures" so you can see she was done with me chasing her with the camera too.
Kate adored her marble tower and her little Buzz and Woody bobble heads but nothing made her happier than her scissors. Kate received five pairs of kids scissors and she was thrilled. She has a thing for scissors (don't worry, we always supervise) and she spent the morning clutching them. She did try to cut the cat's fur but we managed to intervene. Otherwise, she happily cut the wrapping paper while her sister opened her gifts for her. I was worried she might want to take the scissors to bed but we managed to put them away and tuck her in with Buzz Lightyear instead.
Grace's favourite present is a book I bought for her about Venice. She is fascinated by a place that has streets made of water and she wants to go there someday. The four of us will go when the girls are older for sure. I think her second favourite present is her new dress and tights from Zara Kids from Uncle Brendan. She is really putting the pressure on for me to let her wear it but I want to save it for a special occasion. That does seem silly though doesn't it? I should just let her wear it. How many chances will she get to wear it before she grows too big.
This photo of Kate was taken later on in the day at her Grandparents house. Sometimes, Kate will pause and zone out for awhile. We have learned that this is the first warning that she is ready to go. Clearly, she was finished with Christmas. Soon after this photo was taken we packed them up and took the girls home to bed. All in all it was a very successful Christmas. We have learned a few things from our experiences this year. Most importantly, less is more. Kate was overwhelmed by the massive haul under the tree. She opened maybe three presents and then chose to spend some downtime with her Buzz Lightyear. Next year, we are going to make sure we tone it way down. In fact, there has been talk of spending Christmas somewhere tropical and skipping the excessive gift exchange altogther. Don't tell Gramma!
Jon Stewart, of The Daily Show, is raising a son with autism. He is much quieter than some of the other celebs on this list but still does huge amounts for autism charities like Comedy Central's Night of Too Many Stars which raised over three million dollars for autism research this year.
Dan Marino considers his son recovered from autism. Watch this clip to see his story. The former quarterback of the Miami Dolphins has even started a centre dedicated to helping children with developmental disabilities.
Toni Braxton's son, Diesel, was diagnosed when he was three. Learn more about her story here. Baxton is active in many autism charities, namely Autism Speaks.
Jenny McCarthy is pretty much a household name in the autism community. She puts her celeb power behind Generation Rescue. a website dedicated to helping children recover from autism. McCarthy is vocal in the theory that vaccinations can be linked to rising numbers of autism diagnoses. McCarthy, Like Dan Marino, considers her son, Evan, recovered from autism.
Aiden Quinn, who currently stars in my new favourite show, Elementary, has a daughter with an ASD diagnosis. Like, McCarthy, he is a firm believer that over use of vaccines has lead to the rise in autism diagnoses. Read more here.
Holly Robinson Peete is one fierce autism momma. She is active in many charities and runs the HollyRod Foundation which raises funds and awareness for Autism and Parkinson's research. Peete's eldest son, RJ, was diagnosed with autism. His twin sister, Ryan, co-authored the children's book, My Brother Charlie for siblings of a child with autism. I still cannot get through it without crying.
Ernie Els' son Ben was diagnosed a few years ago and is considered severely touched by autism. The golfer began the Els for Autism Golf Challenge and is very involved in autism charities.
John Travolta son Jett, who sadly passed away in 2009, had an autism diagnosis. Jett's mom Kelly Preston opened up recently about her son's autism. Read more here.
Former NFL quarterback, Doug Flutie's son Doug Jr. has an autism diagnosis. Flutie began the Doug Flutie Jr. Foundation for Autism to provide support for parents dealing with this diagnosis.
Happy Mail to:
27 Wellington Row
Saint John, NB
I've been a tad overwhelmed with teaching Kindergarten during a pandemic (masks and all) butttttttt, I have not forgotten my sweet patr https://www.patreon.com/sunnyandsinclair
Grace and Kate's mom. (Shanell)