About smallrezbigcity

An Anishnaabe kwe that moved from a small Northern Ontario reserve to work in Toronto. A walker in two worlds: where culture meets concrete.

Apraxia Awareness Day – May 14, 2012

This is the face of apraxia, but apraxia is not what defines him.

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This is what defines him:

Funny, Happy, Smart, Handsome, Helpful, Inspirational, Friendly, Empathetic, Thoughtful, Athletic, and Loving.

On May 14, please join us in wearing blue and white to support Apraxia Awareness Day.

Speak for children that cannot speak for themselves.  Every child deserves a voice.

Baamaapii.

Apraxia

This is my first blog post since the beginning of March.  Running fell by the way side.  Clean eating is becoming more and more difficult to stick to.  Pretty much anything that I was doing for myself has been put on the back burner, for the time being.

My son was diagnosed with Childhood Apraxia of Speech in March.  Apraxia is a motor speech disorder in that there is great difficulty planning and producing the specific movements required to produce intelligible speech.  His brain has difficulty sending the message to his mouth to move appropriately.  He had been in speech therapy for one year before it was determined that he does not have a speech delay but a moderate to severe speech disorder.

He never babbled or cooed when he was a baby, but I attributed that to him just being a quiet baby.  I had an inkling that something was wrong when he was around 18 months old.  He spoke few words and the two words that he did say (fish and tree) were no longer said.  He used the word “Da” to describe everything.  He would mainly communicate through gestures.  He became quite adept at it and could tell full stories in charade.

I brought up my concerns with our family doctor.  She was very supportive and wrote a script so that we could access private speech therapy sessions through our insurance companies.   We didn’t put him in speech therapy until he was 2 years old because friends and family kept telling us that he was just a late talker and he would speak when he was ready.  He has been in private speech lessons for one year and we now know that he will not just talk when he is ready.  He will require intensive speech therapy to help him overcome this.

The main characteristics of apraxia are inconsistent errors when asked to repeat the same word multiple times; difficulty moving from sound to sound; and inappropriate stress on syllables and words.  He exhibits all three characteristics.  He also has more mistakes in longer or more difficult syllables and words.  Most people have a very hard time understanding him when he speaks.  I am mainly the only person that can understand him 95% of the time.  With one year of speech therapy, others can understand him 25% of the time…that is when he decides to speak.  He is growing self conscious of his speech and often gets frustrated when he is not understood.  It is easier for him when I am around because I can act as his interpreter.  It is becoming harder for him to communicate with others his own age because some children do not understand why it is difficult for him to talk and call attention to it (sometimes not too nicely).

The good news is that it does not appear that his apraxia is associated with other cognitive issues.  His receptive language (what he understands) is well beyond that of others his age.  His memory is phenomenal – he remembers locations sometimes after passing an area once.  Now that he gaining more vocabulary, I notice that he has books, movies, routines all memorized, sometimes after only seeing it once.  He has learned his ABCs, colours, and counting.  He is getting better at consistently saying them correctly.

Since his diagnosis, we have seen great improvement.  He is now fairly consistent with the p,b, and m sounds.  We are now working on d and two syllable words.  We have also started him on a few things to help him build the areas of the brain to assist with his speech.  Some are proven methods; some are what seemed to help other children with apraxia.  He has been continuing speech therapy once per week and we are looking to increase him to twice a week.  He is on the waiting list for intensive group therapy sessions in Toronto.  He takes fish oil supplements daily.  He has full use of my iPad that is now loaded with speech therapy apps.  He uses an indoor trampoline.  We are researching sound therapy providers in the area.  We will be getting a referral to a developmental pediatrician at his appointment with his family doctor in two weeks.

It has taken me a long time to talk about this.  I put on a brave, smiling face every day to keep encouraging him.  What he doesn’t know that I lay awake every night questioning if it was something that we did to cause the apraxia (the cause is unknown but some speculate it to be from brain injury, fever, exposure to toxins, etc).  I lay awake every night praying that the next day will be a good day, free from speech setbacks or bad experiences with other children or adults.  I lay awake crying on nights that it does happen, my heart broken that he has to try so much harder than other children.  I scour the Internet looking for resources that could help him and our family.  I lay awake thinking about how to afford his continued speech therapy and other associated costs while taking leave from work for care of the family.  I lay awake thinking about how to balance his speech therapy sessions while allowing him time to just be a kid.  I lay awake wondering if his sister is affected by the time I am spending on this.  I lay awake flip-flopping between anger, sadness, acceptance, resolve and optimism.

At least I can take comfort that I will do anything and everything to help him through this.  Every child deserves a voice and right now I have to be his.  I can only hope that one day, he will have his own.

For further reading on apraxia, please see www.apraxia-kids.org

Baamaapii.

Just keep running, just keep running…

Week three and four are behind me now.  I haven’t posted about them yet because I have been out of sorts.  A mixture of having tons o’ crap to do and being extremely tired.  Baby Sunshine has reached her six-month sleep regression.  Every night for about a week, she had us up every two hours.  She didn’t want to eat or be changed, she just wanted to be held.  The good news is that she has returned to her old sleep pattern (for the last two nights anyway) and she is very close to mobile.  She is commando crawling around the floor when she is not trying to stand up(!!!)  She has started trying to pull herself up on furniture and we had to lower the mattress in her crib.   She also started clapping yesterday.  A skill that will come in handy when I cross the 10K finish line in May.

I started week 5 today so I figured I better get week three and four posted.

Week 3

 All indoor runs (my first outdoor run will not be until March when the babysitter starts).

Five minute warm-up and 5 minute cool down.  Jog 90 seconds, walk 90 seconds, Jog 3 minutes, walk 3 minutes.  28 total minutes.

Walking speed – 3.5, jogging speed – 5.5, running speed – 7.0 mph

Random program at level 1

Each run was 2.1 miles each for a total of 6.3 miles (10.14 km)

Playlist song – Authority Song by John Cougar Mellencamp.  A fun, catchy beat that kept me running when I was so drop dead tired.  It also reminded me of dancing with my Aunts. 

Week 4

Same as above other than:

Thirty-one minute runs with 5 minute warm up and cool down.  Jog 3 minutes, walk 90 seconds, Jog 5 minutes, walk 2.5 minutes. 

Each run was 2.4 miles for a weekly total of 7.2 miles (11.6 km)

Playlist song – Float On by Modest Mouse.  This song is in my top 5 list of favourites.  The lyrics are testament to how I live my life.  Shitty things happen but your outlook affects the outcome.  “Alright, don’t worry, even if things end up a bit too heavy, we’ll all float on”.

Baamaapii.

Two Weeks Down

Only one post again this week.

I have been wanting to post at least two times per week but aspirations and reality are two different things.  This week was exceptionally busy because hard wood floors were being installed in my bedroom.  It was a lot of work and I was not even doing the installation!  We had to paint the hallway before all our furniture could be stored out there, pull up the grungy carpet, and screw down the sub-flooring.  The best part was getting to sleep in Sunshine’s room again.  She has been sleeping on her own in there again.

Since this is my one and only post, I have no choice but to update about my second training week.

Stats:

Three indoor runs.  (I interviewed a babysitter this week so I can start running outdoors!)

Run 90 seconds, walk 2 minutes.

3 runs of 2.2 miles each – or a weekly total of 6.6 miles (10.6 km)

Fastest speed – 7.0 mph

Average speed – 5.5 mph

Incline – 1.0

Calories – Unknown.  My HR monitor watch has been crapping out on me.  Best estimate is  a weekly total of 350 x 3 = 1050

Program – Random (to *somewhat* simulate outdoor elevation changes)

Playlist song:  Jive Talkin’ by the Bee Gees.  This song seemed to pop up all over the place this week: on Songza, on iTunes shuffle and on the radio.  My son even took a liking to it this week.  I don’t blame him though.  This song brings me back to when my cousin taught me how to drive in her early 90s Chevy Cavalier.  There were only two tapes in the car.  A mixed tape and Rick Astley (Ha!).  Since Rick came to untimely end over the Nipigon bridge, mix tape it was.  Jive Talkin’ was soundtrack to gaining independence and car dancing.

Next week I again aspire to write more than one post.  I also hope to have time to update my weight and inches lost on my Excel file (yes, I’m a nerd like that).  A friend gave me an excellent idea – posting graphs of my progress.  Graphs definitely appeal to this geek.

Baamaapii.

Week One (Again!)

I just completed my first week of training…again.

I did a Couch to 5K at the end of last year but the “most wonderful” time of the year came and went. With it came indulgence and very little exercise. I finally got back on the wagon mid January. My meal choices improved and I stopped eating out. This was my first week back to running though, this time training for a specific run – The Toronto Sporting Life 10K. My first race!

During my run tonight I was thinking about different ways to keep me accountable to my health. One way is to continue to allow the training app post statuses and tweets on my behalf. I finally figured out how to keep the app from doing this but then I had more than a few people tell me that it inspired them. In fact, I now have a cousin using the same training program as me and friends using the C25K and the half marathon app.

Another way is to write about my weekly progress here. I’ve decided to post a few things about my week and one of the songs that made my playlist for the week. Hopefully, it will keep the others (and myself) motivated.

Lastly, I was thinking (and I STRESS thinking) about posting my weight, BMI and body fat% until I reach my goal weight. Now this would make me ultra-accountable but I am just not sure if I am brave enough yet. We’ll see.

So here are the stats from my first week:

All Indoor treadmill runs

Time – 90 minutes, 30 minutes on Monday, Wednesday and Saturday

Distance – 6.2 miles (or almost 10K)

Intervals – 1 minute run, 90 second walk, 5 minute warm up and cool down

Walk speed – 3.5/mph

Run speed – I started at jogging at 5 mph but my average speed was 5.5 mph. I increase my speed as the run progresses and then go all out on the last minute. The fastest speed was only 6.5 mph this week.

Calories burned – 760

Play list song – My Wish by Rascall Flats played while stretching. This song makes me think about my kids. They are my main reason for becoming healthier.

Check back next week. It should be a fairly easy week again. I guess my body remembered more from the C25K than I thought it did.

Baamaapii.

Northern Comfort

I finally started running again this week.  Hooray me!  I can almost hear the sigh of relief from the seams of my jeans.  Things were getting a little (okay – a lot!) tight.  Running usually clears my head, gives me time to process thoughts and sometimes sparks a great idea.  I think I have waaayy too much to process lately because running is just not cutting it.  My brain is such a jumble.  Maybe writing will help?  I don’t know.

I thought I would give it a try.  I sat staring at my saved list with my four or five drafts staring back at me.  I did not have a feel for any of them, yet I did not know what I wanted to newly write about.  I then glanced down the bed at my feet (yes, I’m in bed at 8 PM).  My feet clad in the biggest, wooliest, blue socks ever.  Don’t hold me to that, but they are pretty big and blue.  See my photo.

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Big Blues

Now I tried to pose my feet in the photo so that it did appear that I have ankles.  No dice.  I do have skinny Nish ankles under there – I swear.  The socks are just that big.  Why am I wearing such big socks, you ask?

These socks were made by my Granny for my Grandpops.  Now Grandpops was not the smallest guy around.  He was well over 6 feet tall with a size 13 shoe.  He was one large dude.  He used to wear a hat that said F.B.I. which in the days before Facebook meant F@c$ing Big Indian.

Now I loved these socks since the day my Granny made them.  I am now wondering why I never just asked Granny to make my own pair for a 5’8″, size 8 shoed girl.  I guess I didn’t need to because my Grandpops passed not too long after the socks were made and passed on to me.  I’m also actually glad that I never did ask for my own socks.  For these giant socks bring me comfort.

I wear these socks when I’m sick.  I wear these socks when I’m sad.  I wear these socks when I’m relaxing in front of the fire knitting or reading.  You get the picture.

The reason that these socks are out again was because I was cold.  It has been colder than usual here in the GTA and my bed was freezing!  I got up and pulled on the socks.  I slid back under the covers and had the sleep only a child has.  That’s the power of the socks.  They bring so much comfort from a time when I was young and my Granny and Grandpops were still here with us.

Maybe that’s the true reason the socks are out.  I just need some comfort to ease my jumbled mind.

Baamaapii.

 

A Mother’s Thoughts

It’s 2:43 AM.

I can’t sleep.  I awoke at midnight because the baby cried out needing comfort for a nasty bout of teething pain.  After I nursed her, I sat rocking and sushing her to back to sleep.  The only light was from my smart phone.  I was reading the vile and vitriolic hate smeared on my Facebook and Twitter Feeds.

My husband came home from work and took over soothing the baby.  I returned to my bed where my son lay sleeping.  I too tried to sleep but I could not help think about what I read tonight and over the last few weeks.  I have been silent about it all because I think I am still trying to process how people can be so blatantly cruel.  People fastened to beliefs fueled by cultural hegemony.

As I embraced my innocent two-year old son, I could not help but think of how a Jewish mother feels, an African-American mother feels, a Two-spirited mother feels or all other mothers that have and continue to be discriminated against.  I wept thinking about how my ancestors must have felt when their children were there one day and stolen from them the next.  Only to return foreign and alienated.  Exposed to horror, away from comforting hands.  If they returned at all.

These thoughts made me cling harder to my son.  He must have known that I needed him as much as he needs me.  He placed his hand on my arm in such a reassuringly way.  It made me want to get up and finally break my silence.  I will no longer hide for that is what angry trolls do. 

I need to forge ahead, continue to educate people and make this world a better place for my children and your children.  They should never have to lay awake at night wondering why discrimination exists in this country, because it doesn’t.

“You may say I’m a dreamer, but I’m not the only one” – John Lennon.

Baamaapii.