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).
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!
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.
|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|
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.