Remember when I said I would try to respond to every comment? Well, I really am trying but the response is so great I am having a hard time keeping up. Lot's of people are choosing to send me messages through the contact form on the home page of the site. That is ok, but they only come to me privately and are not shared with any of the blog readers (and there are a few of you out there, thank goodness). So, every so often I am going to share a comment (with permission from the sender) that strikes me in some way or just warms my heart like the one below from one of the original members of Team Kate, Hezz:
Well,firstly I want to say I surely must be on team
KATE......as I LOVE her soooooo much. And secondly,I want to tell you how
informative and TOUCHING,your sites on KATES* journey with Autism truly
are. I feel you have a wonderful command of the English language,and you
write with such a depth of feeling,that it seems to create a personal journey
for all who share your personal sites. What an amazing choice both Grace,and
Kate have made in choosing you and Alex for parents.
Perhaps,at some point,further along your journey,you might decide to write childrens*
books........................as you are certainly displaying a talent in that
area in life. And i know you could touch many,many hearts along the
LOVE,HEZZIE.............from TEAM Shanell and Alex.'
As you can see, the love is pouring in and every single comment or email we receive is so appreciated. This comment was especially well-timed because it has been a bit unnerving to share these stories for all to see and those insercurities creep in with regard to my writing. Who wouldn't feel invigorated after reading a comment like this? It makes me want to keep going with this blog. Thanks Hezz, we love you!
It is no secret among the members of "Team Kate" that I am unhappy with our options for therapy. Actually, 'unhappy' is not a strong enough word. Disappointed, angry, frustrated, walking around with a white hot pit of rage in my stomach. Choose one. I really was going to keep this blog light and for the most part I will but I had to get this out. This province is NOT progressive enough when it comes to therapies for Autism. Our experiences with speech and occupational therapy have been wonderful and Kate looks forward to them each week. However, in terms of early intervention we have one choice, ABA (applied behaviour analysis), and while I have been told that there are good and positive things about this therapy (besides the fact that it is used to train dolphins at SeaWorld) I still feel that it is not right for every child with autism and I know with every fibre of my being that it is not right for Kate. I don't know how to tell you all the reasons why I feel it does not suit Kate. Among them is the idea that she should not stim. I know the SLP's and OT's will struggle with this idea too but I believe Kate stims for a reason. I FIRMLY believe that she needs to stim, the way you or I need to scratch an itch. As long as the stimming is not harmful to herself or others I will never stop Kate from stimming. ABA therapy, by its nature, will attempt to 'train' the stimming out of Kate. Kate's stims are hand flapping, toe walking and she has a verbal stim as well. Each of which, are harmless in my eyes. I am more interested in the reasons she needs to stim rather than trying to stop her. Does that make sense? Is autism therapy in this province considered a mental health issue or a medical issue? It is not a mental health disorder and it would seem to me that if it were considered a medical issue we might have more options than just ABA for our children. Having said that, we have been paying for private ABAish therapy where an amazing therapist comes to our house and works with Kate twice a week using elements of ABA and other more suitable ways of working with Kate. So, we are actively searching for alternate therapies and have come across the Son-Rise program. It looks promising. Alex and I are debating heading down there in August to be trained in the program. We would welcome any advice or comments on the subject. Ok enough of that, I got it out.
Kate adores Buzz Lightyear. I mean really adores him, the way someone would adore Madonna or Lady Gaga or Chocolate Cake. So, I of course scoured the internet until I found the nicest most expensive Buzz Lightyear costume in the land. It arrived weeks ago and I had a plan. I would slowly introduce the costume to Kate by first letting it hang in her closet so she could see it. Next, I would let Grace try it on and spend some time playing with Kate and finally Kate would allow me to put it on her and we would have the picturesque Hallowe'en I was imagining. Here is how it really went. She would not even let us get the costume within feet of her. In fact, it was as if the costume was on fire. Parents of children with autism are snickering at my ill-fated attempt because they know that what I was trying to accomplish would have been at best an exercise in frustration and at worst a melt-down of biblical proportions. So, we had no costume and Hallowe'en day looming. Let me set the stage for you; we dropped Kate off at daycare without so much as a warning that any Hallowe'en festivities might send Kate into sensory overload. I'm a resource teacher at an elementary school. I know all too well what Halloween festivities at school mean. What was I thinking? There would be costumes and excitement and strange foods. All things that Kate would not be able to process as easily as the NT's (neurotypical kids). In my defence, we have only known about Kate's diagnosis since July 12th; months really (If I am being totally honest, I knew much before then.) It was a rough day for Kate. When I picked up Kate from daycare that day she was done. You know when your kids are done. It is when they melt into your arms. When you hug them and you can literally feel the anxiety leave their little bodies. She was that kind of done. Her teachers knew it and were so kind and patient and accommodating to Kate but she had had enough and when I brought her home she found the IPad and left us for awhile, spending some time with Buzz which allowed her to decompress. Needless to say, Kate did not make it out trick-or-treating that night. She spent time with her dad while Grace and I braved the rain and made it down two streets before she was ready to go home. We will try again next year, but we won't push. These holidays are a lot to handle and we will happily take advice on how to prepare Kate. Comments are welcome! Christmas is just around the corner and I want her to enjoy it the way Grace does. I guess I'll end there for tonight. Thanks to everyone for checking out this site and reading this blog. It means a lot. Last I checked this site had 96 views. That is very exciting to me! So much knowledge to tap into out there. Night.
Today I reached out to my Uncle Brendan in Vancouver for advice on an Autism therapy that Alex and I are considering. In his reply he suggested I begin a website/blog to reach out to other parents of children with autism. We are certainly in the thick of things now with trying to wrap our heads around Kate's diagnosis and organize her therapies. So, after thinking about it for a few minutes (literally minutes because Brendan gives the best advice) I decided I would start this blog. If it only reaches the members of "Team Kate" then that is fine with me. You never know, maybe Alex and I will help someone by sharing our story here. Ultimately, we would like to keep a strong network of people working together to not only help our Kate but to explore more progressive and cutting edge therapies for Autism. Furthermore, to hold accountable those therapies that are common place today and to spread the word about how many families are dealing with autism today. 1 in 88. So, thank you Uncle Bren, for starting us down this road. Thank you for being on "Team Kate" and we love you very much.
Happy Mail to:
27 Wellington Row
Saint John, NB
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Grace and Kate's mom. (Shanell)