I really do appreciate the lovely comments you all leave me on this blog. There are days when I have blogger's regret after posting something and without fail someone shares some encouraging words that make it seem ok. Having said that though, I want to be completely honest about how some of the "you're a great mom" stuff can make me feel. It makes me feel a bit like a fraud. Actually, it makes me feel like a liar. I write these posts with every intention of sharing an honest picture of our life but I inevitably have the power to pick and choose what I share with you. I tend not to focus on the parent failures like plugging the kids into their elecronics on a Sunday morning because I had to much wine the night before or forgetting to feed Kate supper because she would never ask for it (yes, I did this). I love my girls more than words and I provide for their needs and I work hard to make sure Kate gets the best services around but that is small part of what I am.
I think I am an ok mom Maybe even one of the okayest mom's around. But still just ok. I let me kids watch too much TV and I let my little autistic daughter stim on the IPad for far longer than I should. We rarely eat together as a family, mostly because we must prepare three seperate meals at supper time. I take the kids out to eat way too much. I let them whine to get their way. I buy them things to make myself feel better about my shortcomings. I compare them to other kids. I can be impatient and bossy. I give in to tantrums and sit on the floor and cry during meltdowns. I ask far too much of my five year old when it comes to dealing with her little sister. I constantly hear myself say, "I'm tired." I would like to get through one day without saying that. The list goes on and on.
I would be this kind of mom even if Kate didn't have autism. I am not more tired or more stressed because we have more to deal with. We don't have 'more' to deal with. We are dealing with our lot. You all have your own issues. There are lots of days where I wake up and immediately look forward to bed time. I don't exercise enough and my diet has gone to hell. I am generally not a great mom or a role model for mom's of special needs kids. I drink wine and I swear (regular readers won't be shocked by this confession). I enjoy being rebellious and deviant in some ways. I love to challenge the status quo and I have a seriously bad attitude some days. I am full of faults. So, when I read things like, "you're doing an amazing job, " I have to wonder if you knew the real truth of it all would you be saying that?
I think I run pretty average in the mom department. Should I blame the impossibly high standards society sets for moms? Should I blame the standards I have set for myself? Not even a little bit. I am flawed. I am learning to deal with it. Anyway, I hope you understand that I am not being ungrateful for the kind words left in the comments section. I just wanted you to know that I am not that mom. That one you keep talking about after you read my posts. I am not even close. In fact, I don't think she exists.
When I started this blog I made a decision for Kate. In reality, I made a decision for all of us. I decided that I would share the details of Kate's autism diagnosis and our struggles and triumphs surrounding it.
I don't remember if it occured to me to use fake names or try and protect our identity in some way. Once, I began reading the other autism blogs, I realized that pseudonyms were common and it began to nag at me. Have I shared too much? Will Kate be angry someday? Am I making things harder for Grace, who shys away from attention? I have friends who would never put their children's pictures on facebook, let alone pen a diary detailing the best and the worst of it all. I understand and I respect that. I guess I have chosen another route.
It rolls over in my mind sometimes, though. Will the things I write come back to haunt us? Will Kate always live with us or will Kate be applying for school one day and upon googling her name will the admissions office decide she might not be the best fit for their program. Will Grace be teased for the silly stories I post. I am a teacher. I know what kids are capable of in terms of cruelty. Sometimes, I say to myself: I will stop when they are old enough to decide if they want to be a part of this or not. Sometimes, I feel like I better stop now.
Most of the time, however, I feel like this:
Kate is in desperate need of the best services out there. All children with autism are. This blog allows networking and learning and is good for the whole family. The community we are building around this site is crucial to accessing the best of the best in terms of services for Kate. I have made priceless connections and learned so much from the people that follow this blog. In the last six months ( has it only been six months?) I feel like I have written a post doc on autism. I have read a stack of books taller than me (and I am tall) and it doesn't compare to the knowledge I have gained talking to other parents of children with autism. The pros far outweigh the cons.
The members of Kate's team read this blog and they have insight into where Kate is in her development and information like that doesn't manifest in hourly office visits. The members of her team understand our philiosphy as a family, in terms of austim treatment, because I have made sure it is clear without a doubt. And one of the best parts; they work hard because they have grown to know and love Kate. Truth be told, another motivator for working hard is that they probably don't want me to write about them if they don't :).
So, when the guilt creeps in, I try and remember the connections and the love that have come flooding in, all in support of Kate and our family and get to typing once again.
Kate's reaction to hearing that she would be doing Discrete Trials.
If your child receives a diagnosis of autism or a related disorder (before the age of 5) in New Brunswick, you will be referred to one of the autism agencies in the province for services. You will wait a really long time (as the waiting list is extensive) and eventually your child will receive 15 hours of one-on-one autism therapy from an autism support worker (ASW) based out of that agency (the literature says you will receive 20 hours but 5 of those hours are designated for administrative duties because this therapy is HEAVY on collecting quantitative data.) It is unclear what education the ASW needs but some training in ABA therapy is a must. I have searched for specific requirements and have yet to come across them. Please feel free to educate me if you know the prerequisites for this position. Before I begin telling you how I feel about ABA therapy please know that I am very pleased with Kate's ASW and her clinical supervisor and they have made every attempt to work with us as we maneuver through a therapy option we don't agree with.
It is YOUR right to receive your intervention services in your home, in the daycare setting or in the
agency itself. The services usually begin one-on-one and eventually expand to allow the child interaction with peers. I really dislike the idea of 3 hours of therapy with only one adult in a small room each day. While it seems like the one-on-one attention would be great, it really detracts from the incidental teaching and peer interaction I believe our children really need. There are times for one-on-one therapy. I know that. I just do not believe it is in the child's best interest to receive that model of therapy for 15 or more hours a week. By the way, did you know that research states our children need 40 hours of therapy per week?
You have only ONE choice of therapy model and that is therapy guided by the principals of ABA or applied behavior analysis which as far as I can tell, locally anyway, results in a lot of IBI (intensive behavioral intervention) in the form of discrete trial training (DDT). I have taken ABA training offered by the University and I have been vocal about my issues with the lack of choice and the dangers of not varying treatment options. (Call your local agency to ask about their philosophy in terms of ABA therapy.) We would never have chosen ABA for Kate. We have a real problem with discrete trial teaching and we feel strongly that is not the right path for Kate. I can't stand the thought of her sitting in a room with an ASW and being asked to "touch orange" over and over so they can collect data to prove you she knows the colour orange. Here is a better way to teach Kate orange. Show her orange in a real world setting, a setting that is interesting to her. Follow her lead and help her learn orange the way you and I did. Naturally. DO NOT ASSUME that these children can not learn in their natural environments among their peers. We desperately wish we had some input in this decision. I have posted a few video example of Discrete Trial Training at the bottom of this post. It makes me ill but that is just my opinion. It might be right for you. You decide. Below those, I have posted some video information about therapies I would like access to. Again, you can decide how you feel.
At this point, Kate is receiving therapy in her daycare (because we firmly believe that a natural setting makes more sense than an artificially constructed one) and we have made the best of what the province has to offer. We have asked her clinical supervisor to REMOVE the discrete trials as we feel strongly that they are NOT the best option for Kate. Here is a link to some research to that effect.
Within the scope of the principals of ABA there is a therapy called Pivotal Response which is highlighted in the article. It is not our ideal choice, with so many other excellent therapies
available (Floor-Time, Son-Rise, Scerts, Hanen etc), but it is more naturally occurring and authentic than DTT and we have asked that Kate receive Pivotal Response Treatment or Incidental Teaching in place of DTT. You also have the right to ask that your child be treated this way too, but I will leave that up to you and your team.
Each time I ask for more varied or more current and progressive therapy options for Kate I am reminded that NB is a leader in autism services. I believe that over a decade ago many amazing parents, therapists and doctors fought tooth and nail to bring us this far. I am just asking to keep the progress moving. See below for examples of DDT (which we do not approve of) and below that I have included other more progressive forms of therapy.
Discrete Trial Training
Below are example of therapies we would love to have access to beginning with Stanley Greenspan's Floor Time Approach:
Amy Wetherby and Barry Prizant's SCERTS model:
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
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)
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.
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.
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.
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!
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.
If only money did grow on trees. Some of you have been asking how you can donate to help fund the screening of Monsters University in July. Apparently, when you use your phones to read the blog you cannot access the donate button (good to know, thanks for telling me). I have added a few more donate buttons throughout the site but I thought I would send out this post for those of you that have asked. Please remember that you DO NOT have to donate to attend this event. This event is free regardless of how much money we raise. We have 12 weeks to raise approximately $750. I think we need to raise about $60 a week or $8.50 a day. $8.50 doesn't seem too unreasonable does it? (nobody told me there would be math). If we exceed our limit we will designate any and all extra funds towards our next GoTeamKate event. Also, please remember you can donate at the door.
Finally, do you know what is even more helpful than donating?? Sharing this information. Getting the word out for us is really more help than you can imagine. So, please share our posts.
If you have already donated....THANK YOU. I have listed your names on the side bar of the blog. If you would not like your name listed please let me know. If I have forgotten to add you please let me know.
Dear NSD (National Service Dogs),
Please give our girl Kate a service dog soon...
(Kate's Cat )
(note: Monty does not move while Kate lays on him when she is looking for pressure, because he is the best cat ever, but we think think a retriever might be better fit for the job. We are currently on the waiting list and waiting for approval for our dog and we absolutely adore NSD. I wrote about them here.)
You may have noticed that I often make baseball references when I write. I love baseball. I married someone who loves baseball. I find it extremely therapeutic to watch. The athleticism, the teamwork, the fans, the parks and the ridiculously elaborate stats (so-and-so has struck out every lead off left-hander on the first Monday of August when the moon was full on each odd numbered year of his career while at home.) Needless to say, baseball is a thinking person's game.
Baseball is a great game for autistic people since it allows for extremely focused and detailed interests. The players themselves become such masters of their respective positions that surely autism has permeated MLB. Of course, it is that high-functioning, feel good autism/asperger's, that people and the media like to talk about, but autism just the same. Surely, some of the greatest athletes of all time exhibited some of the over-focusing we see in so many autistic individuals. Michael Jordan? Muhamed Ali? Micheal Phelps? So, you'll understand if I compare Kate's autism diagnosis to the idea of being thrown a knuckleball, (I had to upate that baseball reference, R.A. Dickey, anyone? And of course, Tim Wakefield.)
I like comparing Kate to a knuckleball pitcher because she is as difficult to get a handle on but amazing to watch just the same. I feel a bit like the catcher trying to catch that elusive pitch. It looks like it should be easy right? Surely, it will be simple to grab. Hardly. That pitch stands out and confuses us because it is so different. We aren't sure how to handle it. We are working on it. Still though, we love trying to understand it because it is worth it. We love watching it defy people and we love watching people determined to master it. Do I have to keep going with this analogy? You see where I am going, right? Great. Sometimes on this blog I swear at autism. I don't love it and celebrate it like some. I love and celebrate Kate, and I understand that autism is a part of her (so spare me the person-first language debate) but I don't celebrate the grief it has caused her or our family. I do, however, respect that Kate is dealing with the differences in her brain by throwing us knuckleball after knuckleball and we are doing our best to catch them. Just ask J.P. Arencibia about that feat.
We are getting more comfortable with navigating through this. We are becoming more seasoned, so to speak. We feel like more of a Doug Mirabelli to her Tim Wakefield, if you will. Tired of these references yet? Well, here is one more:
Kate's dad and I are clutch, so bring it, autism.
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.
Grace and Kate's mom. (Shanell)