So much more

I really should be studying for finals. But yet my brain is swirling with so many things I'm thinking about, I might as well spill that out first to make space for all the stuff I need to remember. 

The funny thing about feelings, is that they don't hit you at a convenient time. Like when you're sitting down, not doing much at all and thinking "I could really use some deep feelings to resolve right about now".  Nah, all you'd get then is random musings about your dinner plans or a memory of some awkward thing you did in middle school and is of no significance now. But, when there is a really not good time for feelings to emerge, like say two weeks before Christmas and smack in the middle of finals that's when they're sure to pop up, like "hey I know you're really busy and stuff, but here's some emotional crap to work through. You're welcome". Or perhaps that's just how the mind works- when it's going well, it's going well, but when one thing breaks down, it all breaks down. 

I've been so busy lately. Final projects, final assignments and much more focus on therapy (through my studies) than we ever focus on in our daily life. Admittedly, it's a bit of a conflict of idealogies when you have to consolidate what you are learning through school with what you know of being an actual parent of a child with a disability- it's not as clear cut as presented in school. In our classes we are dealing with a lot of idealogies and theory while life seldom fits such a neat little box. Yes, these are all great therapy ideas and they have the potential to work really well... unless you have a kid who thinks they're a complete waste of their time and they are not willing to humour you or your brilliant strategies and good luck trying to convince them otherwise.  Would I happen to know a kid like this you ask? Perhaps a cheeky little lady springs to mind.

I also know that sometimes these "difficult" children do have a valid point. Why should they be working so hard really to try to catch up to some arbitrary goal which doesn't have much tangible meaning to them? Oh, we know exactly why, but try selling them that story. And I guess this sort of brings me to the feelings part of the whole story. As feelings do though, they are rarely linear so might not make as much sense here as they do inside my head. 

Last week, we received Sophie's IEP report. We were expecting it, but seeing pages (and pages) of Sophie's perceived deficits was still a punch to the gut. The thing about these reports is that they are based on data- I know all about data as I studied data taking and report writing extensively this semester. We were told that if "it isn't recorded, it didn't happen". However, what is recorded is very, extremely narrow. In terms of data, information is clinical and concrete- did the child (or client, as we are to refer to them) attain the target objective? What percentage of the time? Do the goals need to modified (either made harder, or simplified). 

Where is this on the report? 
There is no place on the report for supplementary information about this little client- what is she like, what does the time spent with her look like? What makes her laugh and be silly? What does her family love about her? How significant really are the deficits in her daily life? What strategies has she so brilliantly developed to go around some of them?

I read this Facebook post by one of my favourite bloggers. She examines this concept a lot and it always hits home. Especially the part about having to do it to her, and not her siblings. How awful would our typical children feel if their report cards only stated negative things about them? Yet their feelings are spared by a perpetually-positive spin on even areas they need to improve upon (my son for example "sometimes manages to be organized and remember homework assignments on time". ahem). Our disabled children of course are assumed not to be able to read their reports and so they are written for the purposes of the therapists, teachers and random bureaucrats which might happen to read them. Which might be a fair assessment, but yet is another way our children our excluded. Why shouldn't they get reports in which teachers painstakingly turn everything they do into a skill and a learning objective? I have stacks of my older kids' kindergarten reports and while they couldn't read them either, they were saccharine-sweet and encouraging. Were they meant to be encouraging for me then? Why shouldn't Sophie's report be? Questions is all I have, don't ask me for the answers. 

Of course, I know the purpose of these reports. They are a gateway between our kids and services. A concrete piece of evidence to wave at an administrator and say "look! my child has trouble transitioning 5 out of 5 days! She needs more support, her teachers need more support!"

Parents of disabled children know their kids are disabled, we know where they "lack". My hopes are not for her to miraculously stop being disabled all of a sudden. But what I would like for her to have is a place where she is seen as Sophie- a little girl, who is sometimes stubborn, often willful, who prefers to do what she wants (really, what 5 year old doesn't?) but who is so, so loved and makes her family so proud. Who has come such a long way and learned many things that might not be measurable in terms of percentages but which are a testament to her cleverness and problem solving. 

It's not just the IEP- it serves its purpose presents a quantifable summary of Sophie in an educational setting. It's witnessing the subtle (and not so subtle) differences in how she is treated compared to her typical peers- constantly measured, analayzed, evaluated and always coming up short. 

Feelings though, they're not measurable and they don't contribute anything meaningful to the situation. If I can leave a parting thought to this rambling mess is- take the reports with a (big) grain of salt. Don't let them distort how you view your child. File them under bureaucratic exercises and put those "not yet able" phrases out of your mind. You know your child best and she is so much more than what's in those reports. 


Magic is Happening

Is it inappropriate to begin every blog post apologizing for not blogging for so long- again? Yes? Then I won't do that. 

In the whirlwind that our life has been of late, with me going back to school after 12 years at home with the kids, husband taking over most of the daily child care duties (he's doing amazing) and the kiddies all in their respective schools, life has been busy, busier than ever before. 

But, amongst all this chaos there is excitement. Soaps has had a real "explosion" of AAC communication after a rather bleak several months, communication-wise. 

First a tiny recap- this was the post where I first expressed how frustrated I was with our current system and how limiting I felt it was for Sophie's current and future needs. Since then most of our readers know Sophie has been using the app Speak for Yourself to communicate, with varied success. Seriously varied- like tapping out a five-word phrase within the first week of getting the app to completely going on a communication strike for a long and sad several months. 

That's the enigma of Sophie. The mechanics or access to the app never seemed to be an issue- she was always able to physically use it. However I must admit that there was a few months I began to worry that perhaps her issue was language-based and that no matter how many words she had access to, she wouldn't be able to derive meaning from them? But she could, initially. I was so confused and also there was the "what if" shadow there- what if it's too advanced, what if I'm expecting too much, what if she's not ready, won't be ready... the what if is a dark demon indeed. But we persevered, what ifs be gone. 

Then we had the issue that can be summed up as "when all the iPads died various but equally tragic deaths", which you can all I'm sure appreciate the meaning of. Did I mention that I was paying my college tuition about the same time?

So after all this and once we didn't get rich, but did get approved for a student loan, the iPads were next on the must-get-items. The fact that Sophie was without an actual talker for over a month was making me feel very anxious. But I also knew that a talker itself was not enough- she needed a dedicated talker, this time not "dedicated but Felix will still use it when she's not communicating" but DEDICATED, dedicated. AND this talker was to be encased in a case that was evidence-proven to withstand tanks driving over it and tornados, hail and high waters or something like that. 

And so here we were. I documented it in this Facebook post here.  

Then I sent it to her school and took a deep breath of cautious optimism.

And then magic happened. Sophie, seeing that Thomas is not threatened by the communication app, began to reach for it. She started off with the regular requests for juice, fruit, thomas, etc but also started to hit other buttons, not in error, but in curious exploration. She took real interest as to where words are and what they are. 

It snowballed from there- it's amazing how little feedback can surge a wave of new motivation through a household. We all began to model in earnest and for once Sophie is an active participator- reaching, responding and engaging with us. Her utterances show intent and of course learning still. Once in a while we get a genuine answer to a question, especially a "what would you like Soaps?" question- food, juice, etc. She's loving Costco's giant chocolate muffins and requests them often. Once she finishes her piece, she passes me the talker so I can press "more" and she completes the request with "muffin". We get a lot of talk about engines, today I added the words "smash", "crash" and "bash"and she began to use them instantly. 

Another thing is when I model a new word she attends to me showing her the path of how to get there- I added "swing" today and showed her several times that it is under "then". Might have to show her several more times but the fact she took interest- huge. And perhaps the most exciting thing is that when she's done with communicating (or anything really) she has the ability to press "stop" or "no" or "all done", or as demonstrated here, all of them at once. That's why I am doing this- sure I want to talk with her. But mostly I want her to be able to speak up for herself.

So that's that. Close to 2 years after my overwhelmed post seeking solutions to Sophie's lack of voice and about 18 months after purchasing her app I finally feel that we are on the road to actual communication. When and how it will proceed, I won't even guess. But I'm betting it will be amazing. 


Summer progress report

If ever there was an award for most negligent blog owner, I'd be sure to win. On another note, where does the time go? It's been about six months since I've updated here and to bring everyone to speed I'll summarize everything in about 80 million words. Not really. But probably close.

The last six months have been big in Sophie's and my life. She graduated from preschool (sob), completed junior kindergarten, and learned many things. And I had my first job in about oh, 12 years!

First the preschool. Given the global and anonymous nature of this here blog, I won't name it. Suffice it to say, it's a special place. And I had the unique experience of seeing through a parent's and an employee's eyes. The staff is truly one of a kind, the children are treated with love and respect, their unique strengths recognized and goals worked on in a gentle manner. It has a family-like atmosphere and it's no wonder parents have a (probably harder than the kids) time leaving it. If only the rest of the educational system worked like this.

The kindergarten. Different scenario but all together good I'd say. The public school doesn't have the resources that the preschool has, but they did their best with what they had. The teacher was gentle and dedicated to her class. She had a very good EA too. Sophie seemed to mostly enjoy her year, save for a couple weeks of strange crying which we have deducted must have stemmed from seeing me in the mornings at the preschool (even though I did my best to stay hidden from her).

Me- a volunteer position turned into a contract turned into a classroom support position until the end of the school year- wow. I'll be forever grateful for those opportunities, which I'm sure contributed to my acceptance to the Communicative Disorders Assistant program I will be starting in September! (The terms "eek!" and "gulp" pretty much sum up my feelings about that at this moment).

On progress. This can be subtitled "in which Sophie does one thing while mommy is relentlessly pursuing something else". It's no secret that my main focus is communication. I believe it to be critical for her autonomy, her learning, her ability to self-advocate. Most of my learning, my research and advice-seeking relates to expanding her communication. Now, Sophie could always express her wants, which I know is amazing. When she was verbal, and shortly after her regression she could ask for what she wanted (now that I think about it, it's interesting she never lost that ability).

Funny story (which I might have told you before). Few months after her diagnosis we had a city-appointed OT come in to assess her. Sophie of course barely looked up from the tv. But when the lady pulled out bubbles, Soaps couldn't resist and jumped up excitedly. At that moment I shyly mentioned that I've been reading about PECS and did she know anything about it? She couldn't hide her doubt fast enough. She started with "oh I don't know if she's there yet..." But I guess seeing our earnest, freshly-diagnosed faces stopped her. She showed Sophie a PEC of bubbles, said "bubbles" in her best Therapist Voice and blew bubbles to Sophie's flappy delight. After few seconds she stopped, showed the PEC, enunciated "bubbles!" again and blew some more. Then stopped again. At that moment Soaps ripped the PEC from her hand, waved it at her and dropped it into her lap while looking at the bottle expectantly. Not ready, my foot...

But I digress. Sophie could always request things, using multiple modes but at this point we have not yet been able to move past requesting. Sophie's approach to her talker is very utalitarian, she gets what she wants and moves on, even throwing it to leave no doubt that as far as she's concerned we are finished talking.

But it seems her interest lies in expanding her physical skills. Observing her especially outside it's as if she makes her own physical therapy goals- first I work on some stairs, then I jump and run on the trampoline, then i walk on this ramp, then back to the stairs. None of these things are easy for her! She loves to swim too. Her body is fitter and stronger and while she still has gross motor delays and low muscle tone she's steadily progressing ahead.

I wonder if she would be so well-regulated if we didn't give her so much free time and freedom to self-direct. I'm sure if an OT had devised a similar plan for her she'd scoff and ignore it. She is learning and progressing at her own initiative. She also has the power of "no". She is able to communicate the message of "no", or "All done" (that's new!) and have it be respected. Her reluctance, pushing away what she doesn't want and her requests to be left alone are heeded and I hope that it also is giving her the seeds of self-advocacy.

And a final thought. While we are working on her talker use and doing all the communication things, in my quest to leave no stone unturned I am also researching this -Rapid Prompt Method. It's popular with many autistic advocates and I've been reading this book and following some blogs and thinking how I can try it. If you are interested, I'd recommend you look up some videos on YouTube, especially of Soma Mukhopadhyay (the creator of this system).

I have many more thoughts but I'll end it here for now (not writing a novel, after all). Now that it's summer I will try to write more often.

Beach life




Life is All a Magic Window

My newest post on Respectfully Connected:

There is a pervasive ideology in the mainstream autism parenting and education community that when it comes to autistic children, you have to act fast. That if we are to teach our children anything, we must hammer it into them before a magical developmental window slams closed forever, leaving our children permanently shut out.

This concept of the magic window started innocently enough when scientists began to observe the massive amount of learning that toddlers do, the type of brain growth and development that is never again replicated in our life and concluded (as scientists do) that naturally we must interfere with this process, by providing "stimulation" usually in the form of too-advanced and too-rigid activities such as overpriced contrasting rattles, various "educational" toys and videos named after famous physicists.

While this type of interference is largely benign (if annoying and unnecessary) for typical toddlers, whose development is not under a microscope and who don't have to constantly try to catch up to their neurotypical peers, the philosophy of "maximum stimulation in minimum time" can do a great deal of damage to the autistic child.


*** Read more here



A Language without words

As I mentioned on Facebook, I have recently become a part of a wonderful blogging collective. Our goal is to  write about living with, parenting and perceiving autistic children with gentle love, acceptance of their neurology and a celebration of their neurodiversity. Many talented writers are part of our group,and it's an honour to be writing alongside them. The stories might challenge common attitudes- but that is the goal. I believe some of my readers here would really enjoy it and I urge you to check it out. The following post appears in its entirety on that blog.

Speech delay is often one of the first noticed signs of autism. Young toddlers are diligently watched to make sure their speech is developing "as it should". If it doesn't, parents are usually advised to put them in speech therapy so that they might "catch up". Some do, some do to a certain extent and some don't at all and they are usually referred to as "nonverbal" or "severe". 

It is true that an atypically developing speech often signals an atypical brain. Being parents of a four and a half year old girl who used to speak and now doesn't, we have spent a lot of time pondering why she doesn't speak anymore, how we can help her communicate and even what she could be thinking. I always felt that my quest to help her communicate was a worthy and imperative goal. I haven't abandoned this philosophy but have recently realized that like most everything with Sophie, it's not quite so simple.

*continue reading the post at Respectfully Connected
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