12.31.2014

The year end.

It's been too long since I wrote here. Perhaps my New Year's resolution should be to blog more often. I do want to take the time to sum up this year, and reflect on some big events in Sophie's life. If there is a corresponding blog post to each story I will link it for your reading pleasure.

Sophie's new communication app

Oh, that's been a long time (and yet by some standards, not long at all) coming! Within months of Sophie losing her speech at 2 I was already researching ways for her to communicate. Perhaps because she did use to speak I felt the matter was of critical importance? After all, her communication (verbal and nonverbal) was already pretty advanced at that point and suddenly just vanished. I felt that loss as much as I was sure she did. PECS bridged the gap and the communication app (Speak for Yourself) is continuing to make a difference. Is it a linear, measurable progress? Not by any means. But I figure every word, every utterance that she can say, even once a day, (once a week!) is more than she could say otherwise and therefore a worthy cause.

Sophie's communication continues to develop. Many of her nonverbal communication skills have re-emerged. She is able to use eye gaze very well to show a desired item. She continues to use the picture cards to show us what she wants. Sometimes she places our hand where she needs assistance, even to show pain as of recent (she placed my hand on her ear after a night of crying. It was a bittersweet moment when I realized she was in pain all night and I didn't know, but at the same time amazed she was able to show me). Single words have been heard repeatedly and by several family members. Aside from the regulars- "go", "up" and "baby", "ipad" has been a clear new word. She continues to babble and vocalize constantly and appears to be able to reproduce all sounds without an issue. Regardless of what (if anything) happens with speech, we honour each and any way she communicates, understanding the immense effort and initiative (which she has trouble with) they require on her part.

Choosing a kindergarten placement

Another piece of our naïveté was lost when we realized that going to kindergarten was not just a matter of going down to the school our older kids went to and signing her up. That was only the first step which set the special education machinery into motion. This was followed by a meeting with a special education committee where Sophie was yet again reduced to a stack of forms outlining her seemingly mediocre (on paper) school readiness skills. Thankfully her OT from her preschool attended to add a bit of "flesh" to the long chart of "not yet doing this skill". It was decided that Sophie would do best in a small classroom of special needs children (what is called a diagnostic kindergarten here in Ontario).

Going camping

Camping is our annual vacation. It was always a week for us to get away and connect in a peaceful setting. All the other kids love it and we were nervous how Sophie would cope, especially without her ipad for over a week. She did amazing! Aside from realizing that we do need a proper, large stroller for her (that's been taken care of now), she was calm, found her own ways of self-regulating and just loved hiking and swimming. We are already planning our next trip!

Starting kindergarten

While we were obviously nervous and a bit dejected that our Soaps has to be shipped out of the neighbourhood to her school it turned out the best it could have. Sophie continues to attend her special needs preschool in the mornings (where she receives many therapies) and then takes the bus to her afternoon placement- and she loves it. Her adaptability is another one of her strenghts. She just goes with the flow and makes the best out of each situation. Her teacher and EA's are sweet, dedicated ladies. And in an odd coincidence we found out that her teacher from her "far from our neighbourhood" school actually lives just half a block north of our very own street!

Being formally diagnosed with MPPH syndrome

Sophie has always been a diagnostic puzzle. Amazingly for about 18 months we had not realized that she was not typical. In retrospect we did notice certain things which I guess we didn't want to notice, or tried to rationalize them away. This was not so difficult since all our concerns were dismissed by her paediatrician as "her own curve". She was born quite large (9.5 lbs) but for a third child it was not too unusual. Her head circumference was also large (40 cm) but that was also somewhat not alarming. She was on the late end of reaching physical milestones but yet kept progressing forward. Many of her delays were in fact explained by her large head (which seems silly now. Nobody has said low muscle tone, it's so obvious now and always was).

Her emotional and social development was ahead of schedule. By 18 months she had more clear words (in two languages!) than any of her siblings. That's what lulled us into complacency. Clearly her intellect was intact, what's a little gross motor delay? None of us are athletes anyway! (I should add except my older daughter. She would be offended to be counted in the non-athletic camp). We now know that any neurological delay should be taken seriously as it could signal major things.

Long story short, after the regression an array of tests, spanning over a year followed. The MRI uncovered the brain malformation (Polymicrogyria). Then months of waiting for confirmation while her samples were analyzed in Seattle for the rare genetic mutation. And finally this September it was confirmed that she does indeed have the mosaic mutation of the gene which is responsible for the brain malformation, the large head and few other symptoms. We feel lucky and grateful her symptoms are relatively mild. Any concerns we have for her future health are pushed away and not dwelt on- enjoy the present, worry about the future when it gets here is the motto in this situation. Worrying about what might happen won't help Sophie now.

Christmas holidays

Felix is our first child who wanted to meet Santa
Santa (working for a children's charity who got involved in Sophie's preschool) also came in person to our home to drop off a gift certificate and four giant bears. Two of them have since been re-homed.

And that brings us to the now. We are currently in the second week of our 2-week winter holidays. We are having a wonderful break. Our family is very low-key (boring? But that's how we like it). Simple gatherings in the very familiar homes of grandparents over the Christmas days. Dinners, presents, family. The atmosphere was very casual and Sophie coped very well, but then she's always pretty laid back anyway. There's not much expected from her other than showing up, and she does like yummy treats. And of course Thomas on the ipad. We visited a few friends with children on two separate occasions and she was a quiet champion there too. She also had a sleepover with her older siblings at one grandma's house.

Kids made and decorated lots and lots of cookies to give to family as presents

Examining carefully (checking if edible perhaps)
Sophie showed some interest in presents

 

We took little day trips, taking advantage of our memberships to two popular family attractions. One was an early-settlement village we just love to visit. They had some old Victorian Christmas holiday traditions we enjoyed seeing and learning about. The highlight was seeing Sophie mesmerized by an electric train going around a gingerbread village display.

Her joy melts our hearts

 

We also planned some dates with the two big siblings alone. They are truly awesome kids. They never complain or moan about their little siblings who do take up a lot of our time and attention. They help out a lot with their siblings without being asked, especially when we are out and about (and need help the most). Any time we can give them a little treat or spoil them a little, we do. So we took them alone to a big science museum. It was easier to navigate without keeping track of the babies, making sure they are not getting lost or running away (although we did manage to get separated for a good 20 minutes, so take that as you will). They had a sleepover alone at their other grandma's house and tomorrow (New Year's day) we are planning to take them to the movies.

I also scheduled a lot of play dates for them this week (pretty much continuously actually, it's a play date revolving door) but surprisingly that doesn't bother me. Like I said, they're great kids and so are their friends. Now that they're older play dates are less running around and making a mess and more lego and computer (for the boys) and American dolls and lallaloopsies (for the girls). Felix likes the attention of the big kids and Soaps... Well she's been hanging out in her brother's loft bed this past week happily removed from the action but yet looking down at all of it, just how she likes it.

My daughter and her bestie (one of a couple)
Sophie's new favourite spot. Hard to get her down sometimes, but food helps

 

And me!

I'm so excited to be taking the first step towards my future career in special education. I have started a volunteer position at Sophie's wonderful preschool which turned into an offer of a 60-hour paid contract starting right after the break. I will also apply to school for the fall and see how it all comes together. It's just the start of the journey, but I'm so ready and excited to take these first steps.

I want to thank the readers who have read and commented on this humble little blog. I write this story for Sophie mostly, but am so grateful for the feedback and encouragement I get from all of you. I wish you all a happy and peaceful 2015, may it bring whatever you dream of for you and yours.

 

 

 

 

 

 

 

 

 

 

 

 

10.21.2014

First do no harm

When the call went out for submissions to the #IamNotKelliStapleton flashblog, I almost decided not to participate. The Kelli Stapleton case has polarized the autism community (even more than it was already) and shattered any fragile peace that existed prior between autistic advocates and their supporters and some (vocal) parents of autistic children. I remained quiet through the initial incident and the first shockwave. I didn't comment on the trial and the infamous dr. Phil interview. I restrained myself when a blogger suggested "we are all Kelli Stapleton". However when I read this article last night, it pushed me over the edge. Those parents who have supported and even identified with Kelli Stapleton up to this point surely cannot now- following an objective, mainstream-targeted, third-party piece of writing, not skewed towards the point of view of autistic advocates (in fact containing some very ablist views, but we've come to expect these from the media sadly) and yet despite all its shortcomings, the image of the character that emerges by the end cannot be viewed as sympathetic. If someone reads it and still thinks that they could be Kelli Stapleton, they should seek some counselling I would suggest.

What has struck me about this case since the beginning is the obvious physical similarity between the victim Issy and my Sophie. Sophie could be Issy in ten years- a cherubic round-faced girl with pale blue eyes and blond curls. Sophie was also diagnosed at 2, following a regression as our readers know. Yes Sophie could be Issy except for one thing. Yup you guessed it; I am not Kelli Stapleton.

How am I so sure I am not, do you ask? Let's start right in the beginning, or at the diagnosis. When Issy was diagnosed at 2, her mother (quotes from the article linked above):

tracked down a child psychiatrist in Michigan and essentially dedicated all of her waking hours to the Issy- project.

All of her waking hours. That's a lot of hours. Remember, Issy was two at the time. How does one go about "curing" one's child of autism with ABA?

From the minute Issy woke up until she went to bed, Kelli subjected her minor routines to rigid control: Kelli would say, "Touch your nose," and when Issy did it she gave her a little prize. If Issy wanted something, she had to look Kelli in the eye to get it. Sometimes Kelli had to make the same request ten or 20 times in a day, because an autistic child finds it hard to tune in or follow instructions or make eye contact, much less do it all day. By the end, she’d be pleading, desperate, "Dear God. Touch your nose! Your whole future depends on this!"

All of her waking hours.

Yes, I can confidently say I am not Kelli Stapleton. I feel my risk of becoming anything close to her is very low, comparable to my risk of becoming say, Temple Grandin. Or Obama. Or anybody else who is not me really. In fact since my blog was started exactly two years ago and about two months after Sophie received her diagnosis, I can quote myself directly as to what I felt as we were in the early stages and considering ABA (which we eventually agreed not to pursue). From this post (the second post on this blog):

we do wonder if we really want her to be drilled for 40 hours a week, rewarded with a tidbit of food for each socially appropriate gesture she is able to replicate. Perhaps in this case the waiting list is a blessing, buying her some more time to just "be", regardless how unproductive her just being is seen as through the prism of ABA.

I wonder if Kelli Stapleton ever took the time for a similar reflection or whether the objective of "recovering" Issy overshadowed any other concerns for the toddler's well-being.

Aside from the fact that I think it's wrong (yes I said that. I don't feel disagreeing with the type of treatment Issy received all of her waking hours is just a difference of opinion. I think it is a wrong thing to do to your child and fellow human being), I will tell you something else. I am absolutely certain that if we subjected Sophie to this type of "therapy" she would lash out physically. And could I blame her? If someone is constantly "in your face" micromanaging your every movement and decision, does that person not become an oppressor, an abuser? Would you not despise them and foam with rage at the mere sight of them?

I don't doubt the fact that Issy was aggressive. Unfortunately I cannot say how she would turn out if she was not raised by a narcissistic mother who never accepted her as she was. It is very possible that she would be prone to hitting when frustrated, perhaps biting. It is impossible to say for sure however, because she was not raised in a home where she could be herself and learn to manage her emotions in a loving and accepting environment. She was singled out and punished for her disability, separated from her siblings to endure the therapy that continually sent her the message that she was not enough.

For three years, she became Issy’s full-time teacher, enrolling her other two kids in day care and sending them, on evenings and weekends, to the houses of relatives.

All of her waking hours.

How am I not Kelli Stapleton? When I wanted to engage Sophie I did the opposite. We include Sophie in everything we do as a family. We avoid separating our kids during family time without a very good reason. We constantly brainstorm which activities would be most suitable to all our family members, who are all of different ages, ability levels and at varying developmental stages. It is difficult sometimes but not impossible. Why do we "bother"? Because we are a family. We all matter.

How am I not Kelli Stapleton? Because when I realized that Sophie's autism was "here to stay" I knew that I had a choice to make. I could mourn, cry and pine for the child I thought I wanted. Or I could embrace the child I was given and learn to be the kind of parent she needed. From this post:

First thought that came to me- I am sad about the "would-be's". She would have been a cute little chatterbox, would have loved animals, would have played with her brother and sister, would have gone to the nursery school her sister attended, would have play dates with the little girls her age on our street... And I realized- it's not about Sophie. It's about me. All those "would have's" have meaning only because I attached meaning to them. Based on my interests and desires I have formed an image of a cherubic little toddler I would have expected Sophie to be- but it isn't Sophie. If I was a different sort of mom I'd be mourning the loss of a would-be ballerina or a would-be soccer player or a would-be artist. Sophie isn't mourning the loss of those dreams because they were never hers to begin with. As parents we fantasize about what our children will grow up to be. It seldom comes to pass as children pave their own reality (as they should). Yet, when their reality falls outside of what we consider desirable, we reject it, or fight it (it's not just about autism, in some families it could be going against the family profession, or marrying the wrong person, or being the wrong sexual orientation).

Now, I believe if a part of us is still mourning the loss of the child that's "buried under the autism" then that can lead down a destructive path. I've heard people yell at autism, swear at autism, banish autism out of their lives. That goes with the presumption that autism is sort of like a growth that is fused to the typical child's brain and that, with proper handling can be removed, leaving the perfectly intact brain exposed. I choose to see that autism is as much of Sophie's identity as her blue eyes, her infectious grin or her funky hair. You can't excise it from her and uncover a neurotypical Sophie which was hiding there all along. If I claim to love her, I can't make qualifying statements like "I love my child but I don't love her autism". It's like telling me "I love you but I don't like your introvertness" , or "I love you but not your green eyes". I have to think and say "I love you, all of you, exactly as you are".

You might wonder why I chose to focus on Issy's early years and not on that fateful day last September. I happen to believe that Issy didn't stand a chance well before her mom planned and attempted to end her life. Way before she chose to record her sardonic observations on social media. Issy's fate was sealed as soon as her mother realized that her child is different than she expected and she refused to make peace with it.

I am not Kelli Stapleton. Regardless where our journey takes us, regardless what obstacles we will need to overcome, Sophie and I will do it, together. There will be reflections on this blog. There will be thoughtful idea-seeking. There will probably be admissions of wrong-doing. But you will not read snarky comments directed at my daughter or her neurology, those who share it, the problems that aren't hers to be burdened with or intimate information that should be private. This is her story, recorded with love by her mom and her biggest fan. I will be honoured if she chooses to read it one day.

#IamNotKelliStapleton

 

 

9.12.2014

Out into the world! (Or kindergarten)

Sophie has been on her full-time school schedule for 3 days now. I didn't want to update until everything was settled. For those whose school year doesn't start with bureaucratic shenanigans- lucky you. This year was made especially fun by the fact that we now have 3 school aged children who attend no less than four different schools! It feels like I have kids all over town.

So now that stacks of forms have been filled and submitted, countless emails and phone calls performed, buses and transportation figured out and special instructions typed up I can finally sit down and reflect on Sophie's start on her newest big-girl adventure.

While Sophie is developmentally delayed, she is advanced in her community involvement compared to her siblings. They didn't attend as many classes or schooling at 3 (her sister did do a nursery school, her brother did not). They didn't attend their first summer camp until they were 5 or 6 years old. And when they started kindergarten it was still part-time in our province. My son didn't take a school bus until he was in grade four, my daughter is yet to take it (next year). But Sophie at four years old is a veteran of all these things and she is coping like a champ (much better than her siblings would have, I can tell you that).

While I would have worried incredibly about how anxious my older children would be about going to two different schools, taking a bus at lunchtime and then coming home after a full day, I was significantly less worried about how Sophie would deal with it. Never one to be prone to anxiety I had a feeling that once she learned the routine she would love her busy days and the 3 bus rides. So far it seems like I was right.

There are no problems getting her out in the morning. She runs for her bus flapping and smiling. When I get her off the bus at home time she is smiling too. The teachers are doing an amazing job communicating about her days either through emails or through her communication binder. I am especially impressed how committed the kindergarten teacher is to her communication device - when I check the history at home I see that Sophie has access to her talker pretty much all afternoon! (Wow). In the morning it is not as much but I know they do more OT and PT there (the therapies were the reason we kept her in that preschool another year) which is also important for Sophie. And she sure loves running around in their gym!

And I have a bit more time at home. Close to the end of summer I felt really overwhelmed with the state of our home, four kids in a small space and no down time, ever. With my husband working out of town these past few months (on and off), things have been very busy and chaotic at times. Now that the kids are in school and Felix naps in the afternoons we settled into a fun routine of an outing in the morning (playgroups, park, errands, etc) and housework in the afternoon as he naps. Our home is back to normal and I feel much calmer. I've been cooking more and am refreshed when the kids come home. I'm also planning my own education future, researching some online courses to take and hoping to apply in the spring for a Communications Disorders Assistant program - a dream long in the making.

One last update. We met with the geneticist at the beginning of the month. For a year we have been awaiting the confirmation of whether Sophie has the genetic mutation they were testing for, MPPH syndrome (very dry medical texts only. This syndrome is so new and so rare there are no glossy awareness websites yet). Well the results are back and she does indeed have the mosaic version of the syndrome. Mosaic meaning that only a percentage of genes are mutated, which lessens the severity of her disability. We will have some medical tests to check for conditions which are sometimes associated with this gene (not the syndrome specifically, just the mutated gene) but other than that, this condition is so recently discovered, there are no long-term studies that could give us any relevant information. All the children that we know diagnosed with it are around Sophie's age or younger. The risk of seizures remains our biggest worry.

And so now you are up to date with Sophie's comings and goings. I am very proud of my big brave cheeky girl.

I wonder if that's how she sits at her school desk...

 

 

8.16.2014

On the Road with Soaps (camping 2014)

We went camping for nine days last week. Honestly even though we go every year, I had a lot more anxiety prior to this time than the previous ones. Last year was challenging but good. We knew camping with two young toddlers wouldn't be relaxing but we did end up having a good time. This year Sophie definitely can't be called a toddler anymore. She has grown over the past year and looks like a real big kid.

 

And even though she's a pretty easy going big kid and Felix is routinely more challenging on a daily basis, his is the typical-brand of challenging. I've dealt with it a few times already. He's getting to be at an age where he can be redirected, talked through (sometimes) or if all else fails, bribed. Sophie is fixed in her interests and few typical tricks work. But mainly, I was scared of the unknowns- what if she's not happy? How will we manage her then? We weren't bringing any iPads so there was no safety net of Thomas.

The downside of all the special-needs "stuff" - the preschools, the camps, the assessments, evaluations, countless specialist appointments, the individual learning plans and alternative communication and so on and on is that if we are not careful after a while they can "other" our child. Since so many things are different, it might feel as if everything were different, as if this child is a different species altogether, sharing no common characteristics with her peers. I fight that mentality regularly, taking great effort to keep Sophie, the four year old girl in the forefront of my mind, and all the "stuff" in the background. Sometimes it's harder. But this camping trip it was easier.

There's no doubt Sophie has special needs and is delayed in many ways. Even considering the fact that she still needed the stroller for the hikes while her 2 year old brother would not be persuaded to sit in one anymore and walked all the long hikes on his own.

But she is such a kid in so many ways. A kid who...

Loves ice cream (they even had gluten-free cones). And who

Loves the beach. And of course

Loves swimming (she swam more than the other kids combined. If there was water, she was in it in the whole time).

One day we went for a hike to the rocky coast of Georgian bay. The views are breathtaking, but the terrain difficult to navigate. We carried the young kiddos as far as we could and while the older kids dispersed on the rocks my husband suggested we find a "safe, flat rock for Sophie to sit on". While that is certainly reasonable and reassuring, given her gross motor challenges I recoiled at the thought. "No! Sophie isn't a senior citizen! She won't be sitting on a safe, flat rock while the other kids are exploring. No." And so we took turns facilitating as much exploration as Sophie wanted to do. And of course, as usual she surprised us.

Safe, flat rock dad? Really?

Looks kind of happy to me. Sophie was an outstanding camper. With some accommodations we did everything we always do. We hiked.

We visited favourite old places.

Sophie and Felix enjoying the view from a historic lighthouse

Kids paddled on the raft (Soaps loved it too!)

At the campsite Sophie was initially a little lost, wandering between the van, stroller and wagon as if looking for her place. I had packed a lot of Thomas books (a good substitute for when the ipad isn't available) and she gradually settled into a calm routine. She either read

Or hung out on the road between campsites (like last year)

Or did both!

Like last year, we set up camp chairs by the side and had a rotating Sophie guard keep watch for the rare car or bike.

Our last-day tradition is to drive to the local town and pick up fish and chips and coleslaw and eat it in the bleachers of a small baseball field. Suits us better than a crowded patio. Sophie loves this tradition and had a blast this time around.

Check out the weirdos behind me
Fearless as always

And finally lest you think it's all about Soaps let me assure you we took plenty of adorable photos of the rest of the gang too. Here are some of my favourites.

Felix and his big bro climbing some rocks
She loves all creatures, big and small
Hiking
Water rescue of pup who got a bit over her head
Our luxurious accommodations
Felix finally getting wet (he was resistant initially)
All the kiddos and a bit of mama too
Daddy and Felix atop the lighthouse

And of course

Mimi- camping dog extraordinaire

I better stop myself before I transfer all the pics from our camera to this post (it's tempting to show you everything we did. Tempting, but not appropriate). I can say that for all my pre-camping jitters this trip will go down in our family's history as one of our favourites- it's definitely in the top 3 which says a lot. And the weather was amazing, which also counts for a lot because there's nothing quite like waking up in a soggy tent on a soggy site and only your wet shoes to look forward to (we've had a few trips like that too). And if you read through all this- thanks for sharing our memories with us.

 

 

6.30.2014

Duality

I am very open and forthcoming about Sophie being autistic. Autism is what most people see when they interact with her, she behaves in a typically autistic way. She's so totally autistic in fact that I often forget about the brain malformation, which incredeously is laying dormant for now. When I do remember however I feel the cold pangs of anxiety as to how and when (and if) the fact that her brain is made so differently will affect her. It feels impossible to hope that it won't, that she will live her life as if her brain was not malformed, how she is amazingly living now.

Sophie was born with a certain duality to her. First of all, she was born under the horoscopic sign of Gemini, or the twins. That sign is the classic symbol of a double nature in one person. Secondly, her hair was split evenly down the middle of her scalp into two colours- black and white (the black gradually faded to a dark brown). You don't have to be a new-age mystic to feel some goosebumps at that. My husband would often say that he wonders how her hair will affect her further personality. Everyone scoffed "it's just hair!" Well, then.

Moving along, her development was also of a dual nature. She started off advanced (very early speech, large vocabulary) and ended up severely delayed. And finally the diagnosis of autism followed by the discovery of Polymicrogyria, the aforementioned brain malformation. Further deepening the strange duality, in the autism world she is considered severe. In the PMG crowd her level of affliction is mild. It's like she is straddling these two worlds of two totally unrelated disabilities, fitting fully neither here or there.

I belong to several PMG groups online and I know she is incredibly lucky given which areas of her brain are affected and her seemingly small degree of physical disability. The fact that she doesn't suffer from seizures as of now is a small miracle in itself. She is even lucky in her ability to eat solid food without any problem. We don't take anything for granted. While her particular kind of PMG (bilateral perisylvian) is often blamed for robbing children of their speech, with Sophie again it's not so straightforward. Children who don't speak due to PMG never develop that ability. They don't learn to speak clearly and then suddenly lose it.

Autism is a neurological condition, as is PMG. They both affect the brain, one in an invisible way, one in a tangible, seen-on-an-MRI way. Both are mysterious and outcomes vary greatly. And by some luck of a cosmic draw, both converged upon my little girl and made her who she is. And as much as I love to know and understand everything, Sophie's condition(s) might remain mysteries unsolved for as long as I live. And aside from occasional panic attacks in the face of the unknown, I think I am ok with that.

Understanding everything is overrated anyway

 

 

6.05.2014

starting school, autism style

The past few months have been dominated by the decision regarding Sophie's September school placement (in Sophie's life. Other family members had their own events, but this is Sophie's story). I held off writing anything here, as there was a lot of going back and forth, up in the air stuff and I wanted things to settle before reporting on them. I didn't want to confuse anybody (or myself, ha).

In Toronto, the process of special need kindergarten entry is such- at first we had to go to our "home" school (the one my older kids attended/attend) and register her there, with the disclosure of her special needs. That sets the wheels in motion. Then a special education committee reviews her file and sets up an interview, which we attended in April. They listened patiently to our grand vision of Sophie perhaps attending the local school part-time, and then informed us that we are asking for the impossible and proceeded to tell us what will be "best for Sophie". What is best for Sophie (and all other special needs' students in the board I suspect) is what is called a "diagnostic kindergarten", a small class of special needs' kids, scattered in schools around the city. We agreed since obviously the only way Sophie could thrive in a general education classroom would be with an aide and that possibility was basically laughed at (not laughed per se- more like regretfully dismissed as unlikely to ever happen).

Then we anxiously waited for her placement for almost 2 months, dangerously approaching the end of the school year with no final decisions made. We were relieved that we have already decided that no matter what happens with the public school placement she will continue to attend the special needs' preschool she is currently attending. It is a wonderful program that she adores (love is not a strong enough word) and all her therapies are integrated into the daily program. However it is only in the mornings, 4 days a week. Even this year Sophie showed that she was bored the remainder of the day and especially irritated on Fridays when she didn't have school at all. The lack of structure was especially apparent throughout the ridiculously long winter when we were pretty much cooped up inside every afternoon as her brother napped.

Finally, last week we got word that a placement has been found and I was to go and see it on Monday, with Sophie. I decided to let her attend her school in the morning, pick her up (along with Felix and my mom who came to help with him during the meeting) and go. I was pleasantly surprised that the school was only about 10 minutes away from Sophie's preschool. We left Felix and grandma at a lovely playground close by and went in. My first impression of the school was that it was old (84 years old in fact) but it felt well loved and cared for. The kindergarten teacher came out, joined by the principal and our local school's principal. I felt comfortable with them instantly. They led me to the kindergarten classroom and it was small, but since it is only for a maximum of eight kids, I'm sure will be sufficient. Sophie seemed comfortable and set about exploring. I talked to her teacher about Sophie and asked her questions, mainly to gauge her attitudes about autism, discipline, "behaviours" and the like. She was very reasonable and described a gentle program, which attempts to follow the general kindergarten curriculum but that goes at the speed of the students. Her discipline methods seem to hinge on redirection and sensory breaks rather than coercion or punishment. Basically, she passed the test :)

Since I bring the ipad everywhere with Sophie's communication app, I had it out on the table. At one point Sophie (whose day and routine was thrown upside down and she was kind of done with that) came up and pressed "no no no no, bye bye bye bye". Then she TURNED IT AROUND so the teacher who was sitting across the table could see it- that kind of blew my mind. I explained to her that we will leave soon but she's had it by then. And when Sophie has had it... well, she sat on my lap and fell asleep. We continued with the meeting. The teacher told me that she will incorporate Sophie's app usage in the IEP. And they assured me that she will be able to get a bus from her preschool to the school and that she can attend on Fridays for the entire day. It almost felt too good to be true.

Then I was taken on a tour of the school. My favourite part was going outside to see the diagnostic kindergarten class playing there. Seeing them put my mind at ease. I saw a small group of happy, well-supervised children, playing in a lovely, shady, fenced yard. When we came out, a lady ran up excitedly to tell us that an older grade was planting in the garden and got the kids to help out. A couple kids were playing on the playground, one was riding a trike and 2 were being pulled around on wagons by some ladies like playground royalty. I could totally imagine Soaps frolicking with them, and I'm sure she would then if she wasn't asleep on my shoulder. After we finished the tour and were walking to meet Felix and my mom, we passed a waiting school bus. Sophie immediately began to try to get on and was not pleased with me when I stopped her (she woke up right as the tour was done- good timing).

So now I am calmer knowing she will have 2 lovely programs to attend, which will keep her busy and happy (I hope). I know she is ready and once she understands the routine, it will be a smooth transition (she is very adaptable really). The only sore point in the whole plan, which otherwise is quite great, is that Sophie will be bussed quite far out of her neighbourhood. I would have loved the small class to be available in every school in our board, or at least a solid 50 percent (obviously there is a demand as the few that are close to us didn't have a space for Sophie). I am sure that the programs, the people that run them, heck even the special education committee all mean well. I have a feeling that the long wait and the placing of children all around the town is due to lack of sufficient funding and space. Which isn't surprising as the toronto school board is chronically underfunded, as are the special needs' autism services in the province. Something that is quite sad, but not much that can be done about. Nevertheless, the overwhelming feeling right now is peace and a cautious optimism about the upcoming year.

Always ready for a challenge

 

 

5.11.2014

Hey Soaps, Speak For Yourself!

It just came to my attention that for those that are not following us on Facebook (and by the way- why not?), the last post here about our communication journey was this one. We have come a long way since then.

At the time of that writing, I was overwhelmed by all the choices and doubtful as to how to proceed. To be honest I was also afraid. Not afraid of spending $200 per se, but what spending that money signified- that we were going for it. No more dabbling with picture cards or simple press-and-go apps. We were taking the communication plunge; I was going to start teaching Sophie a comprehensive language system. I was terrified.

The app we chose (after months of deliberation) was Speak For Yourself. I'm not going to write a complex review of its features as it has been done before, by people smarter than I. You can watch the company's overview video here, or read Dana Gaeckle Nieder's review here (if you are at all interested in AAC, and especially if your child has been evaluated as having complex communication needs you need to be following her blog. Need). Those two links will tell you all you need to know as far as features and what makes the app so brilliant. I can tell you why I chose the app myself.

At the start of this year, I just had it with PECS. Sophie was very good at ripping off little velcroed images and bringing them to us in exchange for snacks (mostly) or favourite activities (sometimes). I kept discovering words which I thought she might want to say and running to the printing/laminating place, then cutting the sheets and arranging the cards in her binder in the evenings. But I always felt like we didn't have all the words she wanted to say, the cards kept getting lost and I was generally getting frustrated. I wanted something more cohesive, easier to edit and less cumbersome. I also wanted a system that could start off very simple, essentially replacing her binder, but which could grow in a way her binder just could not. Speak for Yourself fit that criteria perfectly.

Sophie's initial screen (note the cheeky argument she has in the message window)
Her Thomas character screen
Her food page

As you can see, there are not many things there. That's what I love about this app. We could start as simple as we wanted (could start with one word if that's what was needed) and keep adding words - the capacity is 14 000. The genius part- due to the motor planning component, as we keep adding words, the existing words will never move (hence all the empty black space we have. Room for many, many words).

Sophie took to it immediately. My girl, she is clever. Now, I am not bragging about her IQ or whether or not she will have learning disabilities or cognitive disability or anything like that. She needs a language to be able to be tested for those things, any test we would do now would grossly underestimate her abilities. Given her unique brain, I'm sure there are many challenges ahead- BUT. She is clever. I think I am fumbling around more with teaching her words than she is at grasping them. We are going very slow (so I can keep up).

Sophie's screen now

 

Every weekday during little man's nap Sophie sits in the kitchen and we do our AAC lesson. We go with her level of interest, lots of modelling, lots of motivating items and repeat, repeat, repeat. As some of you know, I managed to secure a communication disorders/AAC therapist for once a week to help with our lesson (no small feat, trust me). Seeing how she models and reinforces with Sophie is quite helpful. This Friday was our first session with her. When she saw Sophie produce spontaneously "I watch jack", "more meatballs" and "want juice" she assessed her at using 2 word phrases. If I could convey how it felt to hear those words about my "nonverbal" daughter... I'm still walking on air.

It feels more comfortable now, we are falling into a groove. Next step is getting Sophie a dedicated device where she would be locked into the communication app. Communication just can't compete with Thomas I'm afraid. This is next on the agenda.

I'm attaching useful links regarding AAC that I personally use. I'm sure there are many others, but my time is limited so I stick with the tried and true. Enjoy! Feel free to ask any questions.

Links:

Speak for Yourself website:

http://www.speakforyourself.org/

Speak for Yourself closed Facebook group (I find it very helpful, many AAC devices are discussed, it's not SFY exclusive):

https://www.facebook.com/groups/273873326092019/

Uncommon sense blog:

http://niederfamily.blogspot.ca/

PrAACtical AAC (good resource page):

http://praacticalaac.org/

 

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