I am sorry I forgot to call you back. I am sorry I don't call you anymore. I am sorry my head is sometimes too full to remember obligations that used to seem so important. I'm sorry I look distant and uninterested. I'm sorry if I turn down your kind offers to help. I am sorry if you feel left out. I am sorry my priorities shifted so rapidly and drastically that you are confused by the new me.
I am not sorry that my priorities have shifted. I am not sorry that I eat, sleep and breathe autism. I am not sorry that I spend my free time researching ways to help my child. I am not sorry that my brain is full; because so many of the things filling my brain are wonderful. I am not sorry she chose us. I am not sorry her sister is learning patience, and empathy and a love that cannot be compared. I am not sorry that she has autism.
I'm not sorry.
Today we visited Alex's grandmother in her nursing home. We usually take the kids with us because the men and women there adore them. I mean, really adore them. They NEVER ask me passive aggressive questions about Kate's development. ( 'How old is she?" (read about how this can hurt here), "Is she potty-trained?" or "I can't understand a word she is saying?") They only ever smile ear to ear and take Kate's violent hug attacks like pros. They say things like, "Your girls are beautiful" and "I could watch them play all day." They never glare, or judge or look uncomfortable when Kate flaps or jumps or screams. They don't care that she has autism. They don't even notice. They just see Kate. Sweet baby Kate, as we call her.
Kate greets every single person she sees with a smile and a hug if she is allowed. The nursing home is no different. She reaches for their hand and puts one foot on their wheelchair as if asking to get up and go for a ride. I usually discourage this, but I can see the seniors are disappointed that I put a stop to their fun. Kate jibber jabbers happily at them and I can usually pick out a word here and there. Today, Kate had a long conversation with "Lillian" about a butterfly. Butterfly, was the only word I could make out but that didn't stop Lillian from listening intently and talking to Kate without looking at me for help. Grace sits back, more tentative than her sister, but she enjoys meeting these lovely people, too. It is a nice escape from the world outside.
I hate tearing the girls away from such an accepting environment but we had errands to run. On the way out we ran into someone that worked at the nursing home. Kate began to babble at her and I am pretty sure Kate said, "I come with you?" to the girl wearing the balloons on her scrubs. Kate was fascinated by these balloons. The Balloon Girl looked confused and asked:
"How old is she?" and I thought….here we go.
"She's three." I said.
Kate, as if on cue, pulled up her shirt to show The Balloon Girl her belly and exposed her diaper.
"Is she potty-trained?"
and we're back...
You know how when something is bothering you it seems to pop up everywhere? For example, if you were worried you were pregnant with unplanned # 3 you might see pregnant people at every turn. (This is not my worry). My thoughts now are on potty-training. I know Kate isn't ready. We have a team of therapists helping us with some of things that top our list of concerns right now.
I hope you understand that we do not put pressure on Kate to complete any of these tasks. We just have priorities that we hope are in her best interest.
These are things we hope will make life easier for Kate.
If I was to write out our list of wishes it might look something like this:
1. Social skills and help making and playing with friends.
2. Communication and help relaying how she feels, if she needs help or if something is wrong.
4. Getting her to wear a ponytail in her hair (don't judge, it is important to me and it would help her stop chewing her hair)
Things that are on the 'don't waste her precious time' list are:
1. Any kind of rote learning of numbers or letters etc.
2. Any kind of discouragement of stimming, like flapping, jumping or spinning.
3. Any attempt at 'extinguishing' a behaviour that may have a valid reason for occurring.
4. Any attempt at changing the core of what she is, autism or not.
So, you can see that potty-training does not even top our list. We don't have unrealistic expectations for Kate in terms of potty-training. We, of course, want this for her but we are not willing to push her one minute before her team thinks she is ready.
Lately, though, it just seems that every Facebook status I read is a celebration of potty-trained 18 month old. When I take Kate into the washroom at a restaurant or the mall I see tiny little children using the stalls as I hoist our girl up to the changing station. She is tall and her feet hang off of the table at her knees. She doesn't mind one bit, though. Just so you know. She doesn't notice those other children or care what they are up to in the stalls. That is my malfunction. Kate smiles and jibber jabbers at them and could not be happier to be out and about with her family.
At three years old, Kate may be late to not be started potty-training yet but she wouldn't be considered abnormal (yet). I know some children/adults will never be potty-trained and I know our problems are minor in comparison. She does get the odd stare for barely fitting on the change station but for the most part it is still a socially acceptable age to be wearing a diaper. My fears exist in the future and they may be unfounded.
I am happy for you and your potty-trained 6 month old. But, do you really have to fill up my feed with that crap?
As usual we are getting ready for our summer trip to Boston. Last year, Alex and I went to New York instead. It's not the same. It's not Boston. You understand. So, here we are with Red Sox tickets and Duck Boat plans and reservations at the nicest hotel we could find and I can't help but feel awful. We do this trip once or even twice a year and sometimes we go alone and sometimes we bring Grace. We haven't brought Kate, yet. The last few years we were able to justify that because she was so young. This year we justify it with things like, "she wouldn't enjoy all the changes to her routine" or "she couldn't sit for a 9 inning game" or "what if she gets upset on the train?" We have many legitimate reasons for not bringing her. We remind ourselves that she she will be happier staying home with Grama.
The truth is, there are bits and pieces of this trip that Kate would enjoy. She would love swimming in the hotel pool. She would adore visiting the aquarium (provided it wasn't too busy). She could happily spend hours running around the Commons. When I think of doing these things without her I feel terrible. I quickly remind myself that waiting for the train could easily set her off or that the crowds in Quincy Market would overwhelm her. I think of how confused she would be at bedtime. I think of how the different foods on everyone's plates at restaurants might upset her.
Vacation is, by its very nature, not autism-friendly. It is new sights and smells and experiences. It is a change in every routine. It is a test for any child with autism.
I know we are making the right decision but I still feel awful. It hugely sucks that Kate cannot be included in this summer vacation.
We are taking the girls back to Disney World for New Year's Eve and we know, from experience, that this will be a trip that will take a great deal of planning and accommodation. I guess we are saving up Kate's energy and our own for our Disney adventure.
We will have fun in Boston and we will shower Grace with some much needed attention but we will all wish Kate was with us. We will, of course, buy her a very special, overpriced, stuffed animal from the aquarium to make her smile.
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:
If you read blogs, and clearly you do, or at least you read this one (thanks for that), you may scroll down beyond the post and read the comments left by other readers. My little blog is small and relatively unknown which means the comments are kind and sweet and mostly from my mom. When your blog grows, so then, do the number of comments. And then, for every ten lovely and uplifting comments, you receive one that can feel like something has clutched your insides and squeezed.
Sometimes these comments are left by 'internet trolls' whose purpose in life is to stir up controversy and sit back and watch the mayhem. These are pretty easy to spot and less hard on the head. Others are left by individuals who truly believe their hateful ideas. It's comments like this one directed at autism advocate "Tanner's Dad" that get you:
@TannersDad if your child is autistic, that's because of YOUR faulty DNA, dad. Look in the mirror if you need someone ELSE to blame. #Loser.
I recently witnessed this twitter attack against @TannersDad from someone whom I won't name because I get the distinct feeling he would enjoy more attention. The above comment is one of the many hurtful things hurled at this autism dad. I think the argument began over Tanner's Dad's beliefs about vaccines or something like that but I don't really care what sparked the attack. I care that this kind of attitude exists in a world where I am raising Kate. I know that this man was hiding behind the internet when he attacked this father. For some reason, these things stand out and cloud the many good comments we receive every day.
The thing that I remind myself when I read awful comments like this is that there are a vast number of you that would line up behind me and Tanner's Dad to put this man in his place. That seems to help.
I don't mean to do it. I get tired of hearing myself sometimes. I can effortlessly guide any conversation back to the topic of autism and I know it must drive you nuts. It's kind of like when you have your first baby. You can't help but talk about that baby because your life is consumed with all things baby. You go on a date with your spouse and you spend the evening talking about your baby. It's kind of like that.
Alex and I have to make a concerted effort to NOT talk about autism when we socialize but we inevitably end up there at some point during the evening. I cannot tell you what a relief it can be when someone asks about it. It allows us that release and offers us a chance to explain a little bit about Kate. It is the constant over-explaining that I do that probably makes us less than popular at parties :). Let me give you an example:
Are you guys going to take the girls to see the fireworks tonight?
What I say: Fireworks! That could be a sensory nightmare. What kind of accommodations would we have to make to allow for that? I wonder if we could get her some headphones? Maybe she would love it? I would hate for Grace to have to miss out. How awful would it be to leave Kate home? Etc.
What I should say: I'm not sure. We might see you there. (Our friends get it. They have read every word of this blog. They ask questions. They pay attention. They don't need my constant extended answers, but they often get them)
Let's take the kids out to eat tonight.
What I say: Kate only eats a small number of foods. She certainly won't eat anything off a restaurant menu. She may have a hard time looking at the food we order. Maybe I could bring her meal with us? I am not sure I can handle both of them alone in a busy restaurant. Can we do it when Alex is free, so he can help? Can we sit in a booth because it is very difficult to keep Kate seated if she sees an escape route. I may have to leave early. Etc.
What I should say: Sure, I may need a little help, but let's do it. (Our friends already co-parent everywhere we go. So, if we have 6-8 kids with us at any given time the children know they any one of the adults is the authority and everyone helps out everyone else. Still, I tend to verbalize my fears.
Friend: Do you guys want to go see a movie on the weekend?
What I say: Maybe. We'll have to see if either of the grandparents are available to babysit because we can't exactly use a sitter. I am not sure there is a teenager in the neighborhood that would be ready for Kate. It would great if there was an agency that specialized in special needs sitters? Etc.
What I should say: Sure, let me try and arrange a sitter.
I guess I could go on and on about how we talk too much about the accommodations our family may need to make at times. I wish I could save it for this blog. After all the people that come here know what to expect. We often spend a good portion of our week managing therapies etc and you can read more about that here but for some reason we have a really hard time leaving it all behind when we socialize. I hope I don't drive you too crazy and I hope you understand that we are only a year in and we are still stumbling around trying to figure this all out.
Before I get some comments reminding me how important talking about autism is, please know that I know this. I dedicate a lot of time to this blog to keep that conversation going. I just think that in our real life we need to find a happy medium.
Thank goodness for patient friends.
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
The Hanen Method
The Early Start Denver Model
Pivotal Response and Incidental Teaching (Under the ABA Umbrella, see I am not totally unreasonable)
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.
Things I used to say:
1. Oh that poor family. When I see someone like that I am reminded how lucky I am.
2. Did you see the size of the child the mother was changing on the change station in the washroom? He looked at least 5. What the hell?
3. If that were my kid, I would take him back to the car and directly home and we wouldn't be coming back to the bookstore, EVER!
4. What the hell is wrong with those parents? Their son is biting everyone at daycare.
5. If you are calm and consistent with your children they won't lose their minds like that.
Oh yes, I did. And probably more extremely ignorant and unfounded comments that I can't remember. I sucked.
As a teacher I have seen some pretty poor parenting lead to some pretty questionable behaviours in children but the above comments were about total strangers.
Recently, I took both girls to the bookstore. Things were going well and this is not an anecdote about a meltdown but a moment when I saw the old me. Kate took an interest in a young mom and her baby. She was pretty excited and began to hug the mom and jibber jabber to her. If you've had the pleasure of hearing Kate babble, it can be pretty intricate and it sounds very much like a legitimate, although foreign, language. She babbles with extreme confidence and she waits for an answer. She has been regressing a little in terms of language lately (I blame the heat) and she has been using jibber jabber, more often than not, when excited or stressed.
The mom smiled at Kate but she looked very uncomfortable so I intervened and said: "She is just excited about your baby. She babbles when she is excited." To which the young mom responds with a laugh: "Oh my God, I was, like, what the heck is this kid saying to me? I couldn't make out a word. I was, like, freaking out."
At this point, I paused and chanted in my brain: "She doesn't mean it the way it sounds, she doesn't mean it the way it sounds."
I then quietly took Grace and Kate to the car and felt worse than I have in months. I think I took this one hard because this nice, normal mom cannot be compared to some internet troll or some insensitive music artist like Drake. She was me, when Grace was a baby. I like to think I had more tact but who knows. Her ignorance is more latent and maybe more dangerous. I felt ill.
The gravity of the situation was quickly forgotten when Grace, from her carseat said, "Mom, I think Kate pooped."
Kate is picking up vocabulary with amazing speed. She can now repeat just about anything you say to her. We are pleased with the acquisition of more words but we are still working very hard on getting her to use those words and terms appropriately. We are extremely lucky that she is communicating with us. Now, when I say this next part please understand that I do not wish to take anything away from those people that have great struggles with communicating with their non-verbal children. I only wish to point out that the acquisition of words does not mean the acquisition of conversation.
I have worked with extremely verbal children on the high functioning end of the spectrum that are very unreliable in terms of conversation. These children may have the tools needed for conversation but they lack the social understanding of how a conversation works.
Kate, for example, is getting really great at requesting things. She even greets people appropriately (if a hug attack can be considered appropriate). She does, however, struggle to answer questions. She'll fool you though. A conversation with Kate will often go something like this:
Stranger: (After receiving a hug and a hello from Kate which happens more often than not) Hello there, what's your name?
Kate: "Wuz your name, yeah."
Stranger: "How old are you?"
Kate: "How old ah ew, yeah."
Stranger: "You're awfully cute, aren't you?"
Kate: "Awe cute, yeah."
You get the picture. If you ask Kate if she wants to go the pool, she will respond with, "Pool, yeah." If you ask Kate if she wants a needle, she will respond with, "Needle, yeah."
She has figured out how to answer appropriately for things that highly motivate her like avoiding bedtime or eating her "Wunch" (lunch). So we are still working on this whole back and forth thing. She'll get it, I am sure.
I just wanted friends and neighbours and teachers and family members to understand that although an autistic child is verbal they don't always possess the skills needed to communicate effectively and functionally. This can lead to extreme frustration for the child and others. So, hold off on the, "well at least she can talk" comments. Talking is only a tiny part of communication. Got it?
Happy Mail to:
27 Wellington Row
Saint John, NB
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Grace and Kate's mom. (Shanell)