 Kate contemplates the pool. Recently, Kate took part in a program called Making Waves. It is a non-profit organization, run through Dalhousie Medical School, that provides one-on-one swimming instruction to children with disabilities. Each child that is registered is paired with a medical student to receive their lesson. I was thrilled to hear about the program from Kate's OT and I am even happier to report that Kate loved it! I had visions of meltdowns due to the sensory issues involved but with help she quickly acclimated to her instructor and had a wonderful time. I cannot post too many pictures to ensure the privacy of the other participants but let me tell you; it would warm your heart to have seen how much fun the children were having. It is programs like this that allow all children the same experiences that so many of us take for granted. Today's success has motivated us even more to continue to raise money to hold GoTeamKate events that offer sensory-friendly options for any child that might benefit. Our shop has been open for about a week and we are thrilled with the response. I hope when you wear your t-shirt or drink from your mug that is sparks a conversation that moves us forward in educating the community at large. The royalties are small but the impact is huge! All proceeds will go towards holding our first GoTeamKate event. We are hoping to offer a sensory-friendly screening of a children's movie. The price tag to rent the theatre is steep and we would have to guarantee 100 guests. No word yet on whether the company can offer the screening on their end. I hope to hear back from someone soon. The other event we are thinking about is a special needs yoga class. I have contacted a local yoga studio but have yet to receive a response. Any local GoTeamKate readers out there have a Yoga connection? At any rate, stay tuned.  The long walk to the pool had Kate intrigued.
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 The GoTeamKate Shop is now open! Click here to shop! New products are added regularly so keep watching. Many of our products are specific to GoTeamKate and others are geared toward autism awareness in general. If you have an idea for a product please email me here. If you would like any of the GoTeamKate products with the name of your child i.e.. GoTeamSarah or GoTeamJack for example, please email me here and I would be happy to add it to the store. Click on the examples below to reach the shop. Thanks for checking out our shop!
 Kate's sensory/therapy room is really coming together. There are a few finishing touches that need to be added (the shelving and the mirror), but essentially it is finished and Kate is receiving a lot of her therapy up there. If you are lucky enough to have some extra space in your home, and you are considering building a room like this, l will break down what we did. We certainly did not spend a bunch of money and with the help of family and friends we really didn't work too hard either. We are extremely lucky. This is how it all went down.  We moved into this house a few years ago when I was pregnant with Kate. The bonus room above the garage was a selling feature insofar as we thought it would be a great media/theatre room or a man cave or a sewing room for me.... whatever….but none of those ever happened. Like all good maritimer's, all of our socializing happens in the kitchen and the bonus room went largely unused. I would tutor up there in the summer months but otherwise it was wasted space. Here is a photo of the room as we started to transform it. The walls were a dark brown before we put on this first coat of paint. Paint is cheap and so is the labor when you have an uncle who wants to help out his little neice. I had orignally planned to invite some girls over and get to painting with a bottle of wine on hand, but when Kate's contractor uncle offered to do the job I figured, better let the professional do it. If you are in our boat, I hope you have as much support as we do and if you are not in our boat I hope you support someone who is, because it means so much to everyone involved.  Once Kate received her diagnosis we researched all of our options to help her. A sensory/therapy room was popping up in all the current literature. So, we knew we wanted one. It was just a matter of choosing the design. We chose to design our room based on the Son-Rise Model. Kate's uncle painted the room a lovely 'therapy green' and her grandparents used Christmas as an excuse to shower her with therapy toys for her room. Son-Rise actually gives a list of the toys that should be included in the room. They are not expensive and pretty easy to find. A tea set is one example of a toy they recommend that encourages imaginative play. Many of the toys are to encourage turn-taking and shared play. It might look like any playroom but I assure you; the choices are very deliberate. Below are some of the toys that Kate uses in her room. See, the big exercise ball in the picture above? I wish I could say it was mine and I was using it reguarly to work on my core :), but it is there for Kate. It is among the items on the list and can be used in so many great ways to work with kids. Another inexpensive additon to our room.
 These alphabet puzzle mats are perfect for the floor and run around $30. Since we try to use the floor-time approach with Kate at home, it is important to have a comforable area to play on the floor with Kate. These mats are perfect because they are easy to move around and can be washed in the bathtub when needed. We also found a great deal on proper gym mats here. Proper mats are needed for Kate to work on some gross-motor skills. She loves rough and tumble play and we want to keep her and ourselves safe :). They will be arriving soon. We found them for a price of $99 each.
 Next, we installed the best part! Kate's swing. She absolutely loves it. We are technically supposed to make sure that everything in the room is used for Kate's therapy only but there is no way I am going to deprive Grace of having a go at that swing whenever she pleases. As team captain, she will have special privileges in Kate's therapy room. As you can see, Monty also enjoys the swing. We usually have to kick him out before the girls can use it. I imagine he thinks this is his new bed. Monty has been responsible for bringing more words out of Kate than anyone else, so if Monty wants to use the swing, like Grace, he has special privledges. This was one of the more expensive tools in the room but if your child responds to deep pressure, small spaces, or enjoys swinging or spinnning, one of these swings is a must. You can find one for less here. The girls both love it as you can see from the pictures below.
 This is the mirror I really wanted but the $223.75 Price tag put a stop to that. Acrylic or non-breakable mirrors are more expensive than your run-of-the-mill mirrors so we are still searching for a better option. Kate loves mirrors and they are a great for imaginative play and working on Speech, Occupational Therapy and Physical Therapy goals. We also use mirrors to work on facial expression recognition. Is there anything funnier than watching a toddler looking at herself in the mirror. If you have not tried this place your toddler in front of a large mirror and sit back and watch. It is even better to catch them doing it when they think there is no one watching.  Next we added some fun lighting (once again, thanks to family). Sensory lighting helps Kate relax and focus. Actually, I think it would help anyone relax and focus. Find a comfy spot and cuddle with my girls and watch the pretty lights on the walls? Yes, I think I will. The lighted aquarium runs a whopping $14.95 and the disco ball was even less. Where possible I have linked the details of where to get these items to the photo so click if you are interested. Once again Monty makes a cameo on this blog. I guess the rest of the family is getting some sensory therapy too. I consider us pretty lucky.
There you have it. Our version of a sensory room on a dime (with lots of help). I couldn't leave without showing you a little "therapy" in action. Grace does not know there is anything different about Kate. She does love to play school and she is helping Kate more than she knows. She is so kind and patient I feel like my heart is going to burst when I watch her. Take a look.
 Today we took the girls to the indoor playground. There are many pros and cons to this outing. On one hand, there was a snow storm and it would allow the girls to get some exercise and have some fun but on the other hand, the indoor playground is an overwhelming sensory experience for anyone. If you've been, you know there are huge play structures, loud music, flashing lights and many, many children running around. The combination makes me cranky so I can only imagine how hard it is for Kate to process. Alex and I have made the decision to try things like this without hesitation so that Grace can take part in the things many other children enjoy. It takes a little more planning because we do need to prepare an exit strategy for Kate, should she need to leave. Today, we did not need it. Thanks to the best big sister in the world, Grace and Kate had a wonderful time and we couldn't be more proud of our girls. Me: "Grace, go play in the big kids play structure because Kate will be fine."
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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 am not an artist but I really can't go a day without trying to create something and neither can my girls. I am getting much better at concentrating on the process rather than the product and I am doing research about sensory-friendly art projects. I was thinking I might have a little summer art camp for children with autism. I guess the details could be worked out later. Kate's therapy room might be the best place for it. Just a thought. Before Kate was born I had no idea how hard it was to find suitable entertainment for a child with sensory issues. The movies are too loud and too dark. The swimming pool is too crowded. The list goes on and on. I am working on the manager of the local theatres to offer sensory-friendly screenings. I am very open to suggestions of other ideas. I want Kate to have every opportunity. I am already getting tired of making alternate arrangements for Kate when we go somewhere that might be overwhelming to her. Anyway, I will keep you posted on any sensory-friendly events I find out about but for now I'll leave you with a completely unrelated but great song by The Cure. My song for Grace and Kate:
Happy Mail to:
GoTeamKate
27 Wellington Row
Saint John, NB
E2L 4S1
GoTeamKate
27 Wellington Row
Saint John, NB
E2L 4S1
Author
Grace and Kate's mom. (Shanell)
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