8.24.2013

Questions, revisited

As I mentioned on Facebook recently, I've been running into people lately that I haven't seen in years. It is not surprising, it being summer and there are only so many family places where people take their small kids in the neighbourhood. Many of the people I met knew me back when I only had two kids (eons ago, it seems) and of course you can't get far past "oh my and who is this?!" before I start telling Sophie's whole life story yet again (many, many times it happened. To the point I was thinking "man I should just carry bio cards to give out").

Of course her story, which has woven itself into the tapestry of our life and become a part of our "normal" is fascinating to someone hearing it for the first time. The homebirth followed by a most unusual baby with hair evenly split in the middle into right side dark and the other white, the talking at 9 months (in two languages!), the fine-motor precision and ability to draw intricate symbols at 14 months, the serene demeanour, followed by the horrific illness and subsequent regression, the diagnosis of autism, then progress again, then the MRI which changed everything once again... Yes I guess it sounds like a made-for-tv movie to someone who isn't living it daily. As I watched people's mouths and eyes widen in surprise it injected a new sense of wonder into Sophie's condition. Which is good, I guess I was getting a bit burned out.

I spent a bit more time on the PMG awareness site, and revisited with some contacts. I added my name to their registry. I also started reading, researching again. What could have made her regress so drastically? And if in fact it was a hemorrhage, why would she have one? Research pointed to metabolic disorders (vaguely, after serious digging), and it made me remember certain things that nobody could answer when she was a baby. Here is a list for my own reference and on the off-chance someone has any ideas.

  • Big head
  • Low-muscle tone
  • Sweaty baby, and also an "odd" odour, a kind of sweet, fruity taste which unnerved me but nobody could specifically define it
  • Odd pigmentation
  • Digestive issues which went away after introduction of GF/CF diet (as did the sweat and odd smell)
  • Keratosis pilaris or "chicken skin"
  • Regression

She had blood work done at the time of her diagnosis and was tested for common metabolic disorders. I suspect that either what she has is very rare and not commonly tested for (or there is no test for it) or that she has some rare chromosomal mutation which might not even be known or tested. Now that we know that she has PMG I'm hoping that perhaps they could use that to cross-reference with the other symptoms. Of course "they" being specialists which we were referred to but still haven't heard from and who knows when we will.

Curiouser and curiouser. But we'll figure it out

I am currently reading this book. It is very interesting, and fitting with my current reflections.

 

8.20.2013

Back to school jitters

I think I made it clear by now that I am a summer person and as far as I'm concerned, winter should be abolished. Bring on the global warming already (I joke, of course... sorta).

I usually get antsy as the summer draws to a close. I love the months of August and September, the golden sunshine, the cooler evenings, the hue of green changing subtly to a yellower tone. But since I was a little kid the beauty of that season was always marred by one thing. Yup, back to school.

I hate the whole thing. The commercials, the flyers, the bins of binders and pencils lining the aisles of department stores. It all causes a sinking pit to form in my stomach. That is an example of a residual conditioned response as I haven't gone back to school in over ten years. Needless to say, I didn't like it much. I'm not sure why exactly, I was never bullied and I was a good student. I just think school-type settings are not ideal for a deeply introverted person like I am. And don't get me started on presentations, ugh.

Of course like a good responsible mother I hide my feelings from my kids and instead put on the "goodness gracious, you will have so much fun!" show. My daughter buys it, my son not so much. It's further supporting my extrovert/introvert theory as my daughter is a social butterfly and thrives in school while my son needs a lot more alone time and to do and learn things at his own speed (which is a slow and detail-oriented speed and with little desire for it to be a social affair).

This year the pit in stomach is all the more deeper because Sophie will start school as well. While I know (or hope?) that this will be a good thing for her, I want to keep her with me for just a little while longer. We have heard only wonderful things about the school (which is a special-needs preschool, offering many therapies in a half-day program), we have visited and met the staff and had a more formal interview. It seems like a great fit for her. The teachers were able to see Sophie using her PECS binder (only a couple days after I made it) which put her in a "capable" category in their minds and they seemed quite excited to work on our communication goals. Which is great. The OT seemed optimistic about potty training. Which is equally great. I think the structure and routine will be good for her as well.

But... I am a bit sad that at 3 years old she is already embarking on her formal education path. The earth mama in me feels she should spend her days digging in the dirt, running in the grass and just being a kid. And she does do plenty of that of course. I am very protective of her "kid time" and believe that most learning she's done is the result of all the normal experiences we try to provide. I worry about getting caught up in progress reports and learning plans and seeing her as a project to be improved upon. At the same time, I am excited about giving her the opportunity to realize her potential. I think the crux of my dilemma is that in the process of "improving" Sophie, I don't want to lose sight of her as the little girl in the midst of all this. A little girl who is only three years old and still has a lot of growing up to do. I often read parents writing that their autistic toddlers work so hard. That phrase somehow rubs me the wrong way. I don't feel comfortable with Sophie working so hard, not yet.

Sophie chillin'. Note how she propped up her feet for maximum comfort.

But on the other hand I am desperate to improve our communication with her. Poor girl is trying so hard to talk, to make sounds. I am almost ready to purchase an app for her to begin teaching her communicating that way. I will wait until I speak with the speech pathologist but I foresee doing it by the end of September at the latest. In the meantime I want to print off more word sheets for her and teach her as many words as possible. She is a funny girl that Sophie. Sometimes she is lost in her path, running in a seemingly oblivious to the world way. But lately she studies letters, in her books and on her Thomas engines with such fascination I swear she is trying to read. I always make a point to spell words for her because, heck you never know. And I've been putting subtitles on her videos too, for the same reason.

She's doing a lot of reading lately

And so that is me these days. Excited, anxious, a bit sad but overall optimistic :)

 

 

8.14.2013

Camping with Soaps

We have always been a camping family. Our first-born went on his first camping trip when he was 1, as he was born the summer before. All the other children went the very first summer after they were born, whatever age they were then. Sophie being a May baby, her first camping trip was at 5 weeks old. Camping with babies is what we know, it's what we do.

Some pics of camping through the years

So it never occurred to us that Sophie would prevent us from going camping, ever. She had gone for her second trip at just over one, while we were still in the blissfully ignorant, "all is well with all our kids" stage. She loved it then. Last year was the only camping-free summer with the birth of our little dude and Sophie's diagnosis. We were itching to go again.

Since this year we have two toddlers at approximately same level of development (albeit totally different temperaments), I did spend a bit more time wondering how it would go. Would we be able to enjoy any downtime at all or would we spend all of our time chasing babies around? But I decided to stop wondering and just do it and see. Here is what we learned:

  • Camping with babies is definitely not as relaxing as camping without babies, lol. But we knew that already. Not news.
  • It's best to work as a team and employ numerous people to keep eyes on babies to avoid caregiver burnout. We were camping with friends and had 4 older kids between us to alleviate some of the responsibility, for brief periods. This was particularly important for Felix, who at this time appears to be quite the extrovert and being included in big kid events just made his day. They were very good at including him, but really had very little choice as he insisted on following them around like a little baby duck.
  • Sometimes it is necessary to place babies in some sort of device to have hands (and eyeballs) free- we brought 3 different carriers and had a double stroller and bike trailer. Thankfully Sophie loves her vehicles and will happily sit in them for a long while, looking at her Thomas books. Little man, not so much (those typical babies can be quite a nuisance sometimes, ahem).
  • It is a good idea to modify some activities to suit everyone's needs and abilities. So when we went hiking, we either carried Sophie in a backpack carrier or pulled her in the bike trailer. We also brought the trailer to the beach because while she loves the water, we found she needed breaks from the brightness and noise of the waves. The bike trailer was a quiet little box which she retreated to happily on her own when needed. Then after a break, she'd come out again and resume playing.
  • She needed her own "stimming time". Sophie gets pent up energy out by running back and forth in a repetitive pattern. She picked the road for this purpose, I'm sure because she was attracted to its faded grey-coloured linear shape. She loves a good bold line. The road was lined by tall trees on each side which constrasted beautifully with the light blue sky. She ran in her ecstatic way across from one side to another. Since it was a road (seldom used, but a road nonetheless) we placed 2 campchairs there, creating the "Sophie guard" headquarters. The guard would rotate and our roadside sitting area hosted many coffee breaks and silly-children gatherings. It gave passerbys pause for thought too, which was somewhat amusing.
  • Bring a few favourite things. Sophie spent many quiet moments looking at her books and playing with her engines. We didn't bring any video viewing devices for her because Sophie seems to associate videos with home and we want to keep it that way. We also want all our kids to enjoy nature in its, well natural form.
  • Don't be afraid to take risks. One of our favourite places to visit at this campground is the Grotto, a cove carved in the Niagara escarpment over thousands of years by the cool waters of Georgian Bay. It is rocky, the water is frigid and you need to be quite sure-footed to navigate safely. But the white-rock beach is beautiful, the water a crisp torquoise and the views breathtaking. We almost didn't take Sophie there this year, but then said what the heck, let's try (can always go back, right?). We brought a heavy blanket for her to sit on and placed the sun-warmed smooth rocks on it for her to feel. But after a while she wanted to get up and explore! I held her hand and she walked on the rocks, waded in the icy water and even made a path on the smooth rocky bank. It is probably one of my favourite memories from the entire trip and almost didn't happen, because taking her there was not a "rational thing to do".

Other than the usual "small-kid hassles" (diapers, naps, constant supervision), camping with Sophie wasn't difficult and I'm sure if we didn't have our baby boy along we would say it was downright easy. The challenges didn't stem from Sophie or her special needs, rather from having two small kids requiring the same level of care at once. But such is our life at this time, regardless of where we are. I can honestly say we had a wonderful time, and did manage to find time to relax and swim and hike and enjoy many fireside conversations with lovely friends (after putting exhausted babies down for the night). And in 10 days I don't recall any significant meltdown or tantrum, other than the expected tears from bumps and scrapes or frustration at being redirected from a (usually dangerous) activity.

Here are some pictures.

Sophie at the beach
Quiet time with books
Can't resist a smiling at camera photo
Ready for a hike
Little troublemaker
The older kids at the Grotto

I might add some more pics as we keep downloading them from all our respective devices (something should be said about this day and age when one trip is documented on six or seven cameras).

 

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