Here is what you need to know about Grace and Kate's dad and my husband, Alex. He is great, blah, blah, blah and he won't mind me glossing over his greatness like that because we both kind of cringe when couples show social media love to one another. Other than being great, he is, like any dad, pretty fiercly protetive of his girls. Not in an 'I don't want them jumping off the sailboat mid-sail', protective, because that is just another Tuesday for our girls (I am less enthusiatic about these moments). He is more of an, 'I never want them to feel left out or less important than anyone else' kind of protective, which I think is pretty awesome.
I will admit, that sometimes, his insistance to include Kate in all of our activities can be a little daunting and a lot exhausting. I fully understand that he wants her to have every opportunity available. She will be skiing at SugarLoaf, USA this week and this summer she will see her first Red Sox game (Grace will see her third). I will fret over her feeling trapped by the ski boots or overwhelmed by the new experience and Alex will look forward to watching her charge down the hill (attached to him, of course). I will have anxiety over whether Kate will enter sensory overload at Fenway and Alex will look forward to buying her her first Red Sox Jersey (Pedroia, of course, since Youk left). Don't get me wrong, he has a healthy handle on what could go wrong for Kate, he just doesn't let it dampen her experiences. I want her to do these things, too. I am glad he is there to push me when I second guess Kate's ability to handle things. He always gives her the benefit of the doubt and as I am learning, she most often proves him right.
When I sit and think about this I realize that this attitude towards Kate will transfer to other parts of her life. Her dad's faith in her will snowball into successes that she might not otherwise experience. He helps me, and everyone on Kate's team, realize that the sky is the limit for her (as he likes to say). For Alex it goes something like this: Should Kate mountain climb? of course! Should Kate play varsity ball? No doubt. Should Kate get a full-ride to M.I.T? Naturally. This is how he sees her. This is how he sees Grace. This is how he sees your children too. I am learning to see my students this way. Limitless. It is a pretty great quality for a parent to have.
I am treating you to another of my original pieces of artwork. Clearly, my colouring skills are lacking but you get the scene, I'm sure. I call this one. "Don't Tell Mom That Dad Took Us To a Black Diamond."
My desk at school.
Lately, I have found myself very curious about what other parents do for a living while raising their autistic child. I wonder if their career choice offers them some relief from the piles of paperwork and multiple appointments, or the melt-downs and sensory issues. As I went through University I worked as an interpreter/tour guide at our provincial Museum the NBM. I miss it. It would serve me well right now. I am happy in my current job but it does not stop me from thining about those days. Maybe, I think about them with such fondness because I had very little responsibnilty at the time. My biggest stressor was my Thesis (a link in case you have been itching to read a thesis on cultural diversity) and looking back, what a waste of stress.
Today, I am a resource teacher. In other words, I work everyday with children that have special needs or exceptionalities (as we call it in NB). These children are on SEP's (special education plans, modified or accomodated) or SEP-I (Individualized). They are the most kick ass children in the school as any of their parents will tell you. Still, I find myself in a unique position, both professionally and personally. As the parent of a child with autism I can sometimes share important information you cannot find in a book, or offer a little more understanding to the parents of my students. On the other hand, I find I can be hyper-senstive to the treatment of these kids and often find myself putting Kate in their shoes. Now, I work with amazing teachers. They are beyond patient and understanding even though we go without enough resources, time or training in the crucial area of educating exceptional children. Sometimes though, I can't help but wonder: Will Kate be on some teacher's last nerve someday? When they decide class compositions for the coming school year will her future teachers try to pass her off stating they have their quota of special needs kids in their class?
I have been very vocal about my beliefs that teachers and EA's need more and VARIED training to work with these awesome kids. I often wonder how effective I am at school. Am I really doing what is best? And, then I get to wonder the same things at home? Are we effective in helping Kate? Are we doing what is right for her? Sometimes it all does feel like a bit much.
I love my job. I really, really do. I just find that I get exhausted, not only from working with the kids all day and then doing the same thing at home with Kate, but from the worry that I am not giving them the best service. I know there may be some bad teachers and EA's out there, who've entered the profession for the wrong reasons, but I have yet to work with one. I have met some misguided teachers and EA's, but for the most part, they are in their professions for the children. They love their students. They get attached and feel responsible for their success.
Now, I know there are haters out there who moan about summer holidays, (for which we do not get paid, by the way. Our wage for 195 teaching days is spread out for us throughout the year), or snow days (See Rick Mercer's thoughts on this, it is well worth the click), but the bottom line is working in our school systems can be as exhausting as it is rewarding. Our 'clients' are so important. We cannot afford to screw up or give less than our all. We are frustrated much of time because of budget contraints and lack of training but we are educated professionals with a stong code of ethics and love for the job or, TRUST ME, we would not stick around. We are a profession that the public does not alway get behind. We need you to get behind us on this one. We need you to tell your MLA's that you want the people teaching and working with your children to have the best quality training and resouces available. I am not asking for more money or a nice desk chair (we rarely sit anyway), I just want to feel effective and to do that I want access to the most current and progressive ideas out there. Makes sense right?
I knew there was a potential snow day looming last night. As a teacher, I was cautiously optimistic and careful not to jinx it by thinking about it too much. Sure enough, the radio announced that the kids and I did not have to battle through 40 cms of snow today. For some that might mean sleeping in a little. For us, this is not the case. Alex was up at the crack of dawn to snow blow the driveway so he could get to work (no snow days for engineers) and I made the girls pancakes (I only burned most of them). I could have technically sent the girls to daycare as it did not close today but I like to take the opportunity to stay home with them whenever I can. Working mom of a special needs child guilt and all that crap.
Today, in hindsight, the children might have been better off a daycare. Before 10 am Kate was gluing my good paintbrushes to the carpet and Grace had already received a swinging punch to her eye courtesy of her little sister. If you know Grace, you know she did not react because she does not like to rock the boat or upset her sister. We are trying to help her stand up to Kate but she is passive right now. She is such an awesome kid and we are working hard to help her stand up for herself. Anyway, It has been one of those days that usually follows a night like we had last night.
On the weekend, Alex and I left the kids with Gramma and went away for the night. It was rest we both really needed but we knew that disrupting Kate's routine would probably lead to some issues. We actually leave our kids with either set of grandparents pretty regularly. We were careful to make sure that our kids would be comfortable staying with family from early on. Kate is quick to wave good-bye when we drop her off and is usually only upset when she is separated from her sister. Still though, it does take some adjustment for Kate to get back into her own routine. So, when we arrived home, Kate had a record meltdown when I tried to change her diaper and then, when it was bedtime, well just forget about it. It was rough, it was violent and it was heart-breaking. These nights are relatively rare but they knock us down when they happen. Kate tries so hard to communicate what she is feeling when she is mid-meltdown (see awesome description of a meltdown vs. a tantrum above, borrowed from Autism Daddy) and she gets so frustrated that all the phrases she knows come out all wrong and she spirals to a point where she cannot calm herself. She screams, 'be ight back, no, go, no, no, no, mama, seep no seep daddy, mama no, I take, I take, be ight back, is ok, is ok." And on and on. When the words do not get her message across she resorts to screaming. On this night, autism sucked. On this night, it was so clearly a disability and not a 'difference' to be celebrated that I was willing to take on the neurodiversity crowd with a vengeance. Once I broke the cardinal rule and cuddled with Kate until she calmed down and fell asleep, I headed for bed myself. After a restless sleep, we all got up and started our day.
So, while I type this Kate is squishing her banana into the couch and I am seriously considering getting up and doing something about it. I should be using this time to work on Kate's therapy or help Grace work on one of her art projects. Instead, I put on "Hotel Transylvania" and took ten minutes to update the blog readers. I might even take a few minutes to have another coffee and then I am going to suck it up and get back to work/play. It might be exactly what I need.
I have written before about my frustration with the marginalization of parents in the autism arena. There is judgement abound among the public and even within the community itself. The way I see it we are placed, by our own hand and others, into one of a few, superficial categories. Having said that, I sincerely hope, that by detailing them here I do not further perpetuate the stereotypes but instead draw attention to the fallacies that exisit.
Firstly, The Warrior Parent, who is kicking ass and taking names. Don't get in their way because they will plow through you. I have been guilty of taking pride in falling into this category on occasion but I have come to realize that it is a dangerous place to sit. Credibility is difficult to hold onto when we are seen as a tunnel-visioned, battle-ready soldier ready to demolish the injustices in the autism world. The people that fall into this category are often articulate, strong, well-read and researched and they see little value in wasting time with things that don't directly involve improving autism services for their child and others. The very terms we use to praise these parents can pigeon-hole them into a category that often can intimidate policy-makers and worst case, deter our efforts. If you consider yourself a "warrior parent", please understand I am, in no way, suggesting you tone it down. In fact, I am going to kill it for Kate and I don't plan on making any apologies. I am asking that we re-think how we view the parents that scream it from the roof tops because if it wasn't for them we would have very little reform at all. Their strength and resolve should not be reduced to a caricature of what they really are.
The next category is The Emotional-Wreck Parent, I also fall into this category on occasion. I am sure every parent does. I have been know to break down at odd times and may appear less than stable to the lucky diners next to us in the restaurant. These parents appear to be struggling with coping and holding it together. It would seem that all their thoughts and ideas are wrought with raw emotion and a desperateness that, like in the case of the "warrior parent", can turn people off and avert our cause. Wrong! These parents, the ones that get emotional, which again encompasses most of us, are as eloquent and expressive as any with their concerns and desires. They take a more authentic route and allow their feelings to show and can do more good sharing their heartfelt experiences than any autism scholar out there. The objectives for these parents are no different than any other. It is unfair to diminish their feelings as 'emotional' and therefore less than valid or legitimate. These parents see clearly with the help of their emotions, not in spite of them.
The final category, and I know there could be many more and sub-categories too, is The Private Parent. They could be seen as removing themselves from the game because they choose to quietly take their family on the autism journey. These parents are our secret weapon. They are no less passionate about their children and they are educated and aware. They do not have to write a blog, or publicly battle policies they don't agree with but rest assured they are quietly and skillfully advocating for their child and that makes a difference for all of us. They will watch and read and intellectualize everything before making choices and when they do speak out it is powerful and game-changing. I know many of our readers fall into this category because we have so many visitors that never comment. I respect this. I get it.
Obviously, I know that autism parents are far more diverse and intricate in their thoughts, feelings and actions than these three categories would allow.
What do you think? Do you fit into any or all of these categories. Are there categories I have missed? Please share. I love hearing from you.
We met with our MLA and Minister of Finance for NB, Blaine Higgs, this week. I was very nervous. I am not sure about Alex, he usually isn't fazed by things like this. He could have dialogue with the Queen and never sweat it. I was not nervous because of who Minister Higgs is as much as I was apprehensive about bringing these issues, highly-charged and emotional, into the office of a politician. We knew Mr. Higgs had the reputation of being intelligent and fair but he was still a politician right? He would placate where he could and throw around buzz words and stats to confuse and disarm us, right? Not even close. We were not prepared for how warm and friendly he was. We were not prepared for when he asked all the right questions and provided intelligent discourse on topics we have spent countless hours researching. Mr. Higgs guided us to our next step, which I will discuss in a future post, with an altruism I did not expect to see. Thank you Minister Higgs.
This is a note of thanks to you. All of you. There are so many to thank that this all encompassing thank you will have to do. Thanks to Uncle Brendan for the picture in this post. As a top-tiered team member, along with Grace and Monty, I felt this was an appropriate picture to use for our thank you letter. Some of you are private and I won't place your photo here or mention your name but I want you to know we sometimes sit at night, after the kids are in bed, and marvel at all the time and energy that you all have put into helping our Kate and our cause. It is baffling and humbling and I hope and wish that every child with special needs has a team as dedicated as we do. Thank you, Family and friends, therapist and doctors, daycare workers, co-workers and bosses, blog readers and fellow bloggers, autism parents, children and their siblings. You are helping us build a network far beyond what we had originally dreamed. If I could, I would send you all a toblerone and if you know me, then you know that is high praise.
The last few weeks have been rough in terms of illness in our house. Long story short is this: It started with Grace getting very ill. I could not blog about it at the time because I was busy worrying like crazy but since she is back to her happy self I can tell you the story. She started to feel sick one evening and, because of Grace's heath issues (asthma/heart) we watch her a little more closely than you might another four-year old. Sure enough she had two major, scare the hell out of us, asthma attack and we rushed her to the outdoor. She's had respiratory issues in the past and uses puffers so we were not shocked by this turn of events. She was rushed past all the poor, waiting people in the ER and was seen by a doctor right away. Her breathing was brought under control and her fever was seen to and she rested under the care of ER docs and nurses until they felt she was well enough to go home. Fast forward twelve hours later and she suffers another asthma attack. Can I just say that I despise asthma? On this night, asthma was scarier than autism and all things combined. We rushed her back to the ER and again she was rushed back to see the ER doctor. It was established during this visit, after being tested, that Grace also had the super bug. She was so ill that none of us slept for days.
Gramma will not like to see these pictures but Grace gets a kick out of them so she doesn't mind sharing her story. The point of this post, however, is not to detail the trauma of our terrifying trips to the ER but more to point out something I find very interesting. Our girl Kate, fought the same bug. We are positive of that and if you look at the video below you will see how very differently our girls reacted to it. (Kate found my phone and made a video of herself with Monty during her illness which resulted in a 102.8 fever for over a week.)
We have found this is the case in many instances. Kate often does not show the reactions to pain and sickness that we expect. With respect to Grace's health issues we do expect her to struggle a little more than the average kid when she contracts a virus but this difference is greater than that. It is almost as if Kate does not feel pain and sickness the way the rest of us do. We have always said this. There were numerous times that we took Kate to the doctor for regular check-ups or to address a fever, only to find out she was battling serious ear infections without ever having missed a step. I guess I am asking the question to other autism parents, autism workers etc: Have you ever noticed this behavior in your children? Are there studies or literature on the topic? I understand that children with autism can have overactive or under active sensory issues but this seems to be more than that. Please share if you have any similar stories.
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.
I have had the majority of this post written for some time. It has been difficult to hit publish on this one. We receive so many encouraging emails from people thanking us for this website and our efforts to advocate for Kate and kids like her. I feel like in order to live up to the nice words that are sent to us I should not be feeling this way. I guess you are about to see my "underface" as poet Shel Silverstein puts it.
Kate has been able to fly under the radar, so to speak, until quite recently. She stands out more now. She is getting bigger and her behaviors are no longer easily dismissed as those of a toddler or a two year old. She will be three in May. I am nervous about telling people she is three. Isn't that awful? I should be excited about her birthday but I am scared and Alex is scared too. He won't say much but like me I know he takes comfort in telling people that she is only two. It makes us feel like she gets a 'pass' for the quirky things she does and the meltdowns that can be dismissed with a quick reference to the 'terrible twos' and a laugh. I don't sound much like a kick ass autism mom now, do I? We clearly do not hide Kate's autism from anyone but I don't always have the time or energy to explain her situation or our beliefs regarding her condition in the grocery store lineup. I appreciate the knowing smiles from parents who have clearly had a two year old decide they no longer wanted to be in the grocery store. Will I get those smiles when Kate is ten? Should I care? I am supposed to be championing for her right to be different/special/autistic etc, but if I am being honest I sometimes enjoy the anonymity.
It is getting harder to hide her differences. Sorry neurodiversity people, you won't like this, but I don't want to celebrate her differences if it means she is different insofar as she doesn't know how to play with other children or she doesn't know how to listen and make eye contact at the same time. I hate that sensory issues like rough clothing or too many people can be painfully distracting and uncomfortable for her and it bothers me that we still feed her baby food because of extreme food sensitivities and oral motor issues. The list goes on and on of things that I don't want Kate to have to deal with and I sure as hell do not want to celebrate them.
I have been vocal about the parts of Kate's autism that I love, like her hand-flapping and her fearlessness but there are behaviours that I am terrified will make her a target for bullies. Kate is already big for her age and could pass for three and half easy. I am afraid for the day she moves up to the three year old room at her daycare. I don't want the kids in her class to notice that she still needs teethers for chewing. I don't want them to ask why she still needs her diaper changed. (Although to be fair, Grace was well over three when she figured that out.) Alex and I are feeling very conflicted with our feelings about this. On one hand, we in no way wish to 'train' her to be 'normal' but also fear for her if she stands out too much. The therapies that Kate receives are meant to help her cope and I believe her therapists all understand our feelings on this matter. On the other hand we take comfort in the moments that Kate fits in and worry when she does not.
As Kate nears her third birthday we are nervous that the general public will take away her 'free pass' and start noticing that she isn't 'right'. I feel like I better make it clear that we know Kate is perfect. The members of TeamKate also now that Kate is perfect but we cannot pretend that we are not afraid of the stares and the glares; the well-meaning but maddening advice and worst of all; the exclusive or dismissive behaviours of other children and even adults.
In the cut-throat world of mommy-blogging I could be crucified for many thoughts in this post. The neurodiversity crowd would hammer me for wishing Kate to 'fit in'. The "Find A Cure" people will hammer me for not trying to "fix" Kate and some will just call me out on not having the integrity to choose a voice in the autism arena and and stay with it. The bottom line is we are still trying to figure things out. Simple as that.
Grace and Kate's mom. (Shanell)