 When we lost our therapy kitty, Monty, we were devastated. Kate still wanders around the house asking, "You help me find cat, pwease?" It breaks our hearts. Our girls adored that cat and our house feels wrong without him. I firmly believe children should have pets. Pets teach children the boring things like responsibility but they also help children make connections and best of all they communicate without words just like so many of our children with autism. Eventually, when we are ready we will introduce another cat into our home. It seems impossible to believe he could be as cool as Monty; see video evidence of his coolness here, but we will give another kitty a chance. Therapy Cat Audition Criteria:
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 The experts all agree: (and you know when I say 'experts' I mean the mom's and dad's of autistic children and adults on the spectrum) autism is a different experience for everyone. Those other experts: doctors, therapists, teachers etc, they would also agree. So, since we are all in agreement, I have a few questions beginning with:
Why the hell do people continue to posit that ABA is the right therapy for EVERYBODY? Why do governments and insurance companies offer funding (if any) for ABA only? I have written about how I feel about ABA before (click here to read about that), but this post is not about my problems with ABA and the methods used under this model. This post is asking rather simple questions: If our children run from one end of the spectrum to the other and beyond, why are we forced to rely on only one method of therapy? Surely, you've heard of some of the other therapies/interventions out there with EVIDENCE behind them: Stanley GreenSpan's Floor Time Son-Rise The Hanen Method The Early Start Denver Model Pivotal Response and Incidental Teaching (Under the ABA Umbrella, see I am not totally unreasonable) SCERTS I am not asking the government to sink money and efforts into a method that hasn't been thoroughly investigated. I understand the scientific method. I understand that you NEED data before you will back a different model. I am trying to tell you that these methods have DATA behind them. They have peer-reviewed studies behind them (the kind you need) and they have anecdotal data collected from parents who GET IT (the kind I need). That should be more than enough evidence for you. As we watch our children grow and develop we are panicking because we cannot access or afford the most progressive treatments out there. Can you imagine how sickening that feels? Please treat our children like individuals. Isn't that the very essence of inclusion in this province? Why do you allow agencies, that segregate our children to a building to work on ABA therapy (which is really IBI therapy) for up to 30 hours a week to exist? Does this not represent everything your inclusion policy is NOT? Why do our pre-school children with autism NOT FIT INTO YOUR FULL INCLUSION POLICY? I've been asking these same questions for a year now and I am still waiting for answers. Anytime now….  Sometimes, I might act like I know the ins and outs of all things autism. Sometimes I might seem like I am completely lost. This is the nature of raising a child with special needs. It is like a cocktail of fear, anger, confusion, strength and love. Somedays, some ingredients are stronger than others. I write this blog while I balance precariously on that line between total insecurity and steady confidence. I might appear to have a handle on which therapies are legitimate and which are not; which are progressive and worthy of our children and which are archaic and harmful I might even seem like I have it handled pretty well. You might think I know what I want. This is not the case. I have written before about feeling like a fraud. We make choices and decision using the best information we have at the time. I am quick to make choices about treatment but that doesn't mean I don't experience anxiety about my choices. We have agonized over the choices or lack thereof. I have stayed up nights and played out different scenarios in my head. I dread the thought of regretting one of these big decisions. However, these decisions still must be made. We cannot go back and forth on what might be best for Kate because the clock is ticking. So, we make our choices and we hope they are the right ones. Don't all parents feel this way to some extent? I have lucid moments where things seem clear. During these times I know what I want and I want it delivered. These moments are rare. Mostly, the complexities of this diagnosis are overwhelming. The massive amount of information surrounding autism, treatments, attitudes and philosophies is too much to sort and classify. The misinformation alone keeps me up at night. The readers are so full of compliments for me and I love it but I want you to know I don't have this figured out. I flounder around reading like a maniac. I read medical journals and books and blogs. I read peer-reviewed studies and the heartfelt words of mom's and dad's who 'know.' I ask people questions about their experiences. Sometimes after the kids are in bed I set out to read the entire internet. The bottom line is there is so much I don't know. There is so much I still have to figure out. The experts don't 'know' either, you know. They pretend to know. They answer with confidence but they don't really 'know.' There are more contradictions in the literature than there are agreements and this leaves us further confused. Don't even get me started on the divides within the community. They are most the heartbreaking and confusing of all. I am writing this because I get many emails from mom's and dad's who are afraid. Parent's who ask me questions I have no right to answer. I want to answer. I want to help but I am unqualified to answer. I can tell you my story and my experience but that is all I have for you. My heart aches for these parents who are beginning their journeys. My heart aches for the parents who have been trying to figure this out for years. I feel gutted that I can't take away your worries. There is too much I don't know. There are a few things I do know, however. These are the things I know for sure: I know you cry in your car because it is the only time you are alone. I know you feel guilty for fantasizing about how life might have been different. I know you worry about neglecting your other children. I know you cringe when you hear the "r" word. I know you worry about choosing the wrong therapy/intervention/treatment. I know you feel guilty because you cannot afford treatment. I know you feel angry that treatment is not available. I know you sometimes resent people who don't 'know.' I know you feel awful when you compare your child(ren) to others or to each other. I know you have a hard time thinking about the future. I know you worry all the time. I know you feel guilty all the time. I know you are so proud of your child(ren) I know you celebrate milestones that others could never understand. I know you know your children are perfect. I know you adore your child(ren). I know you would still choose them. I know they would always choose you.  Click this photo to reach the page where this meme orignated.  It has been awhile since I have updated you on our therapy room. I originally wrote about designing the room here. We have added some pretty cool things and the girls are loving it. Kate has therapy in this room as often as we can make it work and we even let them have free play in here (which is against the advice of some of the experts.) I guess I am getting pretty good at going against the advice of the 'experts' lately. I hope Kate will thank me for that one day. The first new addition to the room is the mural painted by local artist Gerry Collins. Thanks Grama. He is a family friend and he painted this mural using a vintage 1920's colouring book for inspiration. We wanted it to look like a child's room but we didn't want a typical cartoon mural. We also knew better than to tell an artist what to do. We left Gerry upstairs for a few days and we were left with an absolutley priceless piece of art. Monty even appears in the painting! Next, we added the seahorse mirror that Kate's aunt and uncle bought her. Thanks guys! The girls adore it. They love to stand in front of it and make funny faces. Kate and I can practice facial expressions and she loves to talk to herself in the mirror. Finally, we added the pink gym mat. Thanks Grampy. One of Kate's favourite ways to stim is jumping. She could jump up and down over and over all day. (I know, I need to add one of those mini trampolines with a safety handle, right?) This mat allows her to relieve some of that sensory-seeking behavior. She can crash and roll and fall as much as she likes and she loves it. Grace, although less rough and tumble than her sister, also enjoys playing on the mat. It is great for the practical uses of physio and occupational therapy exercises but it also good for just plain old play. If you are thinking of putting a room like this together for your child please keep in mind that Kate is primarily a sensory-seeker. She likes pressure and rough play. The room has been designed to help Kate meet sensory-seeking needs like spinning or jumping. She can, at times, be a sensory-defender. When she is feeling this way (usually a holiday or a birthday party can bring this on) I would not bring her to this room. At those times she is better served to go to her bedroom with one of us which is very calming and simply decorated with little distraction and soft lighting. Alex and I do not claim to be experts in sensory room design but we are here if you have any questions about designing one of your own.
 I have been meaning to tackle this topic for awhile now. I am sensitive to it because it is very much one of those, "you have no idea what it's like until you've been through it" kind of topics and I generally shy away from statements like that because they turn people off and they can be insulting to well-meaning individuals who try to 'help.' So, in my experience, here is how the whole food sensitivity/aversion thing can go down for families dealing with autism. If you are just getting your feet under you in terms of the whole autism thing, here is a quick refresher on what is it and what it can mean: Autism is a neuro-developmental disorder (not a mental illness) causing impairments in three main areas: Communication, behavior and social interaction. Many autistic individuals experience hypo or hyper-sensitive reactions to sensory stimuli. For more on the details of autism click here. We can all agree that eating is a sensory experience, so by definition, this will be an issue for many autistic individuals. Textures, smells, tastes, visuals and environments can all add up to an extremely unpleasant experience for all involved. Kate is no exception. She has many food sensitivities and they go far beyond the taste of the food. Here is what I need you to understand. As parents we want our children to eat well rounded meals. We want mealtime to be a pleasant experience. For Kate, we work very hard to make these two things happen. Here is a list of the foods that Kate will eat, and believe me this list has grown in recent months thanks to the efforts of her team: Gluten Free - Bread and Peanut butter (Alex and I take turns making bread every other day) Gluten Free- Waffles or pancakes Potato Chips French Fries Chicken Nuggets Are you noticing a pattern yet? Everything in this section is beige. Yes, that is extremely common for kids with ASD. They can reject foods solely based on colour. If you think that is ridiculous you can click here. If you are still with me, here is the next list of foods that Kate will eat: Bananas (usually 4 a day) Apples Watermelon Grapes Strawberries We also feed Kate pureed squash and sweet potatoes each day because we sneak in essential vitamins, probiotics, omega-3's and a form of folinic acid we call 5M. We are thankful that she has expanded her food preferences to include fruit. And finally: Pomodori's Chicken Pesto Pizza (we have tried to duplicate it but she knows!) *this is one area where we allow Kate to cheat on her GF/CF diet. Kate looks like she is having a religious experience when she eats this pizza. She adores it. We all do. Thank goodness for local businesses! Click here to learn more about them. Chocolate Because we have chosen a partly biomedical approach in Kate's treatment she is on a gluten-free/casein-free diet and this does further complicate her diet issues. Having said that, I want you to know, we feel that a nutritionally sound diet is paramount and we make changes if necessary. Many times, and this will ring true with so many of you autism parents out there, people try to 'help' get Kate to eat something. They put it in front of her or break it into small pieces and sneak it on her plate. They ask her to eat it before she can receive a preferred food. They ask her to take just one bite. She never obliges. She usually gets worked up and she often refuses to eat altogether. Now, her grandparents, who feed her regularly are fully aware of Kate's issues and feed her accordingly. They know to introduce a new food by placing it near her but not asking her to eat it. They know the next step is asking her to touch it. Many weeks later she may allow this food to sit on her plate. Someday she might take a bite. The process is long and tedious and it is called a 'food expansion' program. Any OT could tell you all about it. In the photos below you can see a progression of events that I set up to show you how easily Kate can be disturbed at meal time. We placed three of her favorite foods on a plate. Bananas top that list of favorite foods and she struggled to even look at her plate. She repeatedly asked to get down from her stool and was very upset. I removed two of the foods and Kate was able to focus in and enjoy her meal. She later ate both the banana and the strawberries but at different times. If you think a little 'discipline' would straighten her out then feel free to click here. If you understand that sensory issues can be painful and cause a great deal of anxiety for these children you can keep reading.
Below is the meal her five year old sister ate that evening: Chicken, potatoes and asparagus. Kate would find this plate offensive to smell, touch, taste or even look at. I promise, the parents of children with autism, understand there are 'picky-eaters' out there. This goes well beyond that. Some of you are nodding your heads. If you are shaking your head then please feel free to click here. 
OK, that last one hopefully got rid of the last of the skeptics/haters (whatever you want to call them.) Below is a photo of Kate at a restaurant. I wrote about that experience here. It went well but as you'll read we take the win for very different reasons than other parents might. 
Kate enjoys the view from the booth at Boston Pizza.
More recently, we took Kate out for her sister Grace's birthday supper and we were thrilled when we got her to handle a piece of broccoli. We didn't mind that she kept repeating 'ewwww' as she squished it between her fingers. We were pleased that she didn't protest that is was anywhere near her. We certainly would not expect her to eat it at this stage. And, for your information, she would just as reluctant to try yogurt or spaghetti or skittles for that matter! 
Kate explores the texture of brocolli.
If you think these issues of rigidity and extreme preference are related to food issues only then you would be wrong. We also struggle to make changes in other areas of daily life. The amazing people at her daycare and her therapists are helping her with these issues of rigidity and they are making great progress.
I don't want to leave you thinking that we constantly battle with Kate to get through a day because that is the furthest from the truth. We maneuver a little, we finesse a lot and we make it work. All parents do this to some extent. We might just have to do it with activities that many of you might think are mundane like the seasonal change in clothes that is about to happen. How do I convince her to switch her winter coat for a raincoat and her winter boots for rubber boots? Thankfully, Kate has a team working on those tasks.
There are so many situations and issues related to sensory sensitivities that I could not possibly cover them in one post. I just wanted to make some of you more aware of the issues facing our kids. So, teachers, please don't judge mom and dad when a child brings the same lunch every single day and the entire lunch is beige. We are just asking for a little more understanding until we can figure all these things out.  To all of you who wore blue, shone blue, and bled blue on April 2nd, thank you. Thank you from the bottom of our hearts. I know some struggle with the notion of what 'awareness' can really do for our children. I have read countless blogs that level frustration at organizations that run campaigns for autism awareness. Ideally, we would like you to advocate, educate and promote acceptance for the autism comminity. This does not mean there is no place for awareness. There is a need for it. Here is what it can do: First if all, making people aware of numbers like 1 in 88 or more currently 1 in 50 puts our cause in the social conscience. When you changed your light bulbs to blue or wore blue or posted something on Facebook about Autism Awareness Day, you added to the conversation. A conversation that we desperately need to keep going. So, when someone negates your efforts with terms like "slactivism" or makes snide remarks about 'what the hell a blue light will do for children with autism' you can refer them to me. I got this one. I wrote about it here. The dialogue you initiated by taking part in Autism Awareness Day is crucial for our children. Secondly, you annouced to the world that you support those of us dealing with the diagnosis and all the ups and downs that come with it. You told the world that you are willing to learn and show compassion for all of those affected. Sadly, the autism community itself can become very divided over the issues of therapies and diagnoses; over cures or acceptance; but the one thing that we should all be on board with is the support from the community around us. Yesterday, our family felt the love. Our street shone blue and our neighbors more than proved they were behind us as you can see from the pictures below. Alex and I took a drive on Tuesday and it really lifted our spirits to see our neighbors, families and friends light up their houses. Our neighbors across the street had five bulbs in! We were so impressed we just stopped and stared. They probably didn't know about Kate's diagnosis until we dropped off a package on their door with a blue light bulb in it and a short explanation about the "Light it up Blue" campaign. They certainly came through for us last night along with every other person on our street.  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 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.
 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 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: |
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April 2022
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