CP Awareness: A Month in Review

My month of CP Awareness has come to an end. At times this has been difficult admitting some of the things I have shared, particularly how much we worry and how stressful it really is. Because the truth of the matter is, no matter how much we worry or feel challenged, I would never in a million years consider Asher, or any part of him, a burden.

I hope it's clear that while our family may not look exactly like your family, or what we had envisioned our own family dynamic would be, we are happy. Asher's disability is a small part of our lives, whereas all three of our kids abilities are a huge part that bring us pride and joy every single day.

Now that this month has come to an end, I'm sorry it's over. In case you missed any of the month's posts here's the highlights:

There's the intro and the definition and the types. (Wow what a boring start - thanks for continuing on and not losing interest after that riveting kickoff!)

Need to know more about umbrellas? Or some teaching strategies?

Here's all the stuff that could have happened, but didn't.

And here's the cutest face ever.

These are some of my friends, particularly my awesome friend Cary.

Errrgh, this one's full of worry. Tread lightly.

Remember all of his therapy? Here's a new one.

This is where we're going to see a picture of what happened and this is what we refer to as the condition that shall not be named.

Want to learn a bit about me? Ok then, here's some more!

****Needle off the record****

We interrupt this regularly scheduled CP reporting to say that our firstborn baby lost her first tooth! Yes, I realize this has NOTHING to do with CP but it's just so darn important and exciting that it needs to go down forever in history!!

****And now we resume****

Awww, he's just a little boy. But still, we need a break from him sometimes (not to mention the other two!).

Yay - we're all learning! And we're learning some more.

Has it been a year already? Apparently you can't really tell.

Do you know that Parents of Preemies are rockstars?! And so is Asher! Oh wait, so are Nolan and Rio!

He works so hard and he's so very loved.

Whaaaa....Dad's here?? What a treat! Even if he does drop an F bomb and talk about an 80s movie.

The name of the game is not blame. (I'm a poet and yes, I do know it!)

Will we ever accept this?

And can YOU accept that this month of CP awareness is about to end?! I know, tragic isn't it? But it just did. 31 posts about our life with CP - mission accomplished.

I hope you feel enlightened and educated. I personally feel a bit exhausted, but it was totally worth it. This guy makes everything worth it:

Asher thanks you!

CP Awareness: Acceptance

Fact #1: I love Asher to the ends of the earth.

Fact #2: I don't blame anyone or anything for his CP.

Fact #3: I think he is incredibly special and his CP may very well contribute to his amazing spirit.

Fact #4: In spite of this, I wish with all of my heart I could take away his CP and all of the excessive challenges it brings with it.

Does this mean I will ever really accept CP? Not sure. I'm hoping it's a work in progress.

CP Awareness: No Blame

There are some negative emotions that surround Asher's CP, I'm not going to lie. Yes, I love him to the ends of the earth and accept him fully for exactly who he is and what he is and isn't able to do. BUT, some days CP invokes some unpleasant things in me, such as:

Anger - why did this happen to my sweet, amazing kid?

Sadness - see above

Jealousy - why my kid, not yours?

Guilt - what could I have done differently to prevent the prematurity and all of its subsequent complications including CP? (Trust me if you've had a preemie you've thought it - even if you know the answer is NOTHING).

Fear - what does the future hold?

But one feeling that I feel blessed to omit from this list is blame. I don't feel like blaming anyone. 

Sure, of course Jordan and I have wondered what could have been done differently by those taking care of Asher in the first few days/hours, or in my prenatal care when I was found to be at such high risk for prematurity. But wondering and blaming are two different things.

Because at the end of my wondering, I come to the same conclusion. Likely, nothing SHOULD have been done differently. Everyone did what they believed was best for both me and my very premature babies, when at times they only had split seconds to make a decision. Could another course of treatment been a possibility for Asher? I know the answer to that is a definite "yes"*. But could that course of treatment had a worse result? (d-e-a-t-h if I have to spell it out for you). That's a sure possibility too.

We had two 26 week old babies (one very sick before and at birth - causing the birth) at great risk of a brain hemorrhage. Unfortunately for Asher, that's what happened. Full stop. 

So when I say I feel blessed that I don't place blame, I mean it. I don't feel a lot of "lightness" about anything that has happened to us. Blaming anyone, however, is one of the things that is not heavy on my heart.

*Very thorough discussions were had with the neonatologists and my obstetrician about why certain decisions were made every step of the way from the boys' very sudden birth right through their hospitalization. We have always felt very informed.

CP Awareness: Dad's Word Association

Although I am speaking on behalf of Jordan and our entire family when I write here, and generally our opinions are shared, he of course has his own take on things.

Instead of having Jordan do a blog post on limited time (poor planning on my part), I gave him a word association challenge. Rules: I said a word related somehow to CP and he gave me the first response that came to mind. Ready? Here we go.

1. Asher: Hair

2. CP: Brain

3. Future: Back to the

4. Therapy: Help

5. Disabled: Handicap parking

6. Respite: Date night

8. Worry: Don't

9. Diagnosis: Insignificant details

10. Stress: F*ck my life

11. Wheelchair: Mobility

12. Family: Team

Now you know - dad vs. CP in 12 phrases. Some of them not very "CP" at all - proving my point in the silliest of ways that CP is not our everything.

CP Awareness: True Love

Before having Asher, I didn't really understand the meaning of love.

And with that statement I mean no disrespect to Jordan, Rio, Nolan or the countless other people that I love. I am not saying I love Asher more than I love them, but my love for Asher has made me look at him, and the world, differently.

I don't see a kid with CP when I look at Asher. I see a kid who is smart and hilarious and lights up a room.

I see determination and spirit and everything that signifies purity and goodness.

I see endless possibility for greatness.

I don't judge and I don't see judgment staring back at me.

Jordan and the kids all make my heart grow with love every single day and for that I will be eternally greatful. But Asher adds a little piece that my heart didn't even know it was missing.

CP Awareness: Work Ethic

Everything Asher does takes effort. Things you and I take for granted like eating, playing or rolling over are a full workout for him. Attempting to sit or stand (with support) completely exhausts him. But he never complains.

Recently, he has started crying on occasion during therapy and it breaks my heart. I know he feels challenged and at times he wants to give up. But he doesn't. He is persistent and determined and beyond inspirational. Sometimes it takes a whole lot of deep breaths and breaks, but he always gets through with a smile on his face by the end.

Asher is hands down the hardest worker I know and I could not be more proud of him, every second of every day. I don't know if it is the CP that has helped him to become more patient, hardworking and easy going, or if it was his destiny that such a courageous, strong and amazing little boy should be given this condition. Either way, he's unstoppable. If only the rest of us worked the tiniest bit harder and complained at bit less at anything compared to how hard Asher works at everything, we could really make a difference.

Spring!

I think it's officially spring in Victoria! Today was 18 to 20 degrees (depending on who was reporting the weather) and it was glorious!

Yardwork. Hand me down sorting. Deck play. Yardwork. Drinking lots of coffee. Eating lots of yummy food. Watching the Canucks win. Yardwork. Walking in the sun. Shopping for little girls spring clothes. Prepping for back to school post-spring break. Yardwork.

Pretty much sums up the weekend. I can't think of a better way to refuel the tank.*

*Boys aren't sleeping. Again. Nolan wakes up then wakes Asher who won't go back to sleep. Getting tired of running on auto-pilot all day.

CP Awareness: They Just Know

The other morning after Nolan had finished his breakfast (and taken off all of his clothes in the process), I saw this:

He got down from his chair and pulled up a chair next to Asher. To do what? Feed him breakfast of course.

Nolan is only two, so of course we haven't explained Asher's condition to him. But like his big sister, he just seems to understand when and how he can help. When Asher needs a hand, Nolan* and Rio are there. They don't need to be told - they just know. Little things here and there - passing him a book, getting him his cup, calling to me on his behalf when he needs something. They're always looking out for him.

All of our three equally amazing kids are taking this whole CP thing in stride. They don't judge Asher because he is different - if anything they love the extra attention they can give him, and in turn the praise they get from us for doing so. Their relationship symbolizes all that is good in this world and CP is not getting in the way of that.

*Likewise, when Asher can be exploited and Nolan can steal his toys and bully him, he's there too. But we won't focus on that right now!

CP Awareness: 10 Asher Things

This post is inspired by one of the boys' favourite books of the moment - Little Pookie. Instead of 10 Pookie Things, here's 10 Asher things:

1. His eyes are a window to his soul. Sure, I suppose all of ours are, but never in another person, big or small, have I witnessed this like in Asher. His eyes are identical to Nolan's and while Nolan's are equally as big, blue and gorgeous, there is something just there in Asher.
2. He just learned to kiss with his mouth closed, and finally makes the kissing sound. Prior to that he only kissed with his big, wet, sloppy mouth open. Cute, but required a towel. 
3. He loves books. We could get rid of every toy he has and replace them with books. In fact if we replaced mealtime and sleep with books, he'd probably be fine with that too.
4. He has the sweetest voice, and speaks remarkably well. My favourite words of his are clock, pronounced "cuh-lock"and firetruck, pronounced "ri ri ri truck" (ri ri ri is the siren if you weren't clever enough to pick up on that).
5. He is the world's best snuggler. He nestles into your neck and shoulder like the spot was carved out for him. The best part is when he wraps his [seldom and awkwardly used] right arm around my ribs and gives me little pats.
6. He loves music and yells DANCE when he hears it. His favourite song are Moves Like Jagger and Toxic and he goes craaazy for them. (I know, you're thinking that's not really the J and T music scene. You're right, but it's amazing what we're willing to listen/dance to for the sake of amusing your children).
7. His feet are one size smaller than Nolan's and he weighs one pound less, but is one centimeter taller.
8. He seldom wears blue, and if you see him wearing it it's likely Jordan messing with me. This dates back to his early days when he made a habit of turning blue (even once he came home) and we didn't want to accentuate it. Now I am so used to it that even though they are identical, I think Asher looks "bad" in blue and yet it's Nolan's best colour!
9. His belly button is an outie. As a baby he had a GIANT umbilical hernia which has thankfully since sorted itself out, but I think being stretched out for that long caused it to stay big.
10. When he sees himself in the mirror he says "Hi Guy!" apparently as a result of us saying "Who's that guy?".

There you go, now you know just a little bit more about our amazing boy. What does CP have to do with ANY of what I've just told you?

Nothing. That's my point.

CP Awareness: Parents of Preemies Day

Ok I admit, I'm reaching here, trying to pass of "Parents of Preemies Day" as a CP related post.

HOWEVER, considering that prematurity and all of its lovely complications were the cause of Asher's CP, I thought it was fitting. Kind of? Yes! Of course it's fitting! I am a parent of a preemie. I am also a parent of a kid with CP. Those two kids I mention are the same kid! Therefore this is a totally CP related post, got it?!

So as I was saying, today is Parents of Preemies Day!

Yes, CP can be caused by many things other than prematurity. A stroke or a traumatic brain injury before the age of three, to name a couple of key causes. But often, CP is a result of babies, like mine, being born way way way before their little brains are capable of healthy development outside of the womb.

So to all the parents out there who made it through prematurity, you rock. (Those days in the NICU really really sucked didn't they?!!) And to those of us whose babies didn't walk away from their premature births unscathed - CP or numerous other complications...well...you rock even more. Preemies are fighters - but so are their parents.

Look at those very proud parents of preemies!

CP Awareness: How Have We Changed?

Yesterday was one year since Asher's diagnosis.

How have we changed since then? Well, we haven't really.

CP has challenged us, yes, often times more than I'd like to admit. Maybe it has altered things in our life a little bit, but we, and especially Asher, are all the same people we were before the diagnosis. If anything, this past year has has been a work in progress - learning, accepting, and letting go:

Learning the ways we can help Asher to make his life not only easier, but enriched;

Accepting all the beauty and joy we are surrounded with;

Letting go of how we thought our lives "should" be, and actually just living one day at a time.

A year later can I say we are different people because of Asher's CP? Absolutely not. We live, we love, we laugh, and sometimes we cry. All things any family does, CP or not.

CP Awareness: One Year Later

Today marks one year since Asher was diagnosed with CP. That day was a difficult one, but gave us a small bit of closure, as we had been anticipating the news since four days after his birth. You can read my post from that day here. 

CP Awareness: Something to Be Learned

Between all of Asher's therapist and doctors, we have a lot of eyes on him. Experts in every field, plus two parents who are the biggest Asher experts on the planet. Most of the time, I think we've got all bases covered.

But then when I'm not looking, I learn things about and for Asher that I never would have figured out on my own.

For instance, from watching his physio therapist I learned the other day that I should be asking him to help me dress him. "Ok Asher, right arm now please" as she put his shirt on. This is something she did without even thinking, knowing he couldn't really physically respond, yet giving him the practice to attempt it, or at least start learning that he needs to try to do it.

Or when our family friend volunteer was over the other day, I could hear them doing clean up in the play room. "Good boy Asher, thanks for helping" I heard her say, thinking she was just giving him praise for sitting there and not complaining (which is what I often do when he sits with a smile on his face, waiting for us to finish whatever business we were attending). But no, when I went down to see for myself, he was actually helping. She had lined up a pile of blocks on his table in front of him and put the container beside him. Sure enough there he was, block by block, dropping them in the bucket. My heart nearly flew out of my chest with pride, while at the same time wondering how on earth a 21 year old girl who is just getting to know him thought to ask him to do this, when his own mama never did?

"You are too close" our Feldenkrais practitioner often says. She is not meaning this as an insult - just a fact. I am so closely involved with Asher - more so than anyone else - that in many ways I don't see a lot of things about him - both bad and good. While I often overlook his limitations, apparently I can overlook his abilities too.

So all experts aside, we continue to learn new things, often in places we don't expect it. I am learning to see even more potential in Asher than I already see. What an amazing feeling that is.

A Special Visitor

Last night we had a very special visitor to our home.

The Tooth Fairy!

At 5 years and exactly 10 months old, my baby girl lost her first tooth yesterday. It was sooo wiggly for days and then finally came out in a bit of pancake.

A bit bittersweet for mama, but Rio was thrilled and the tooth fairy did not disappoint. She left some special-first-tooth, sparkly loot along with a poem*:

Way to go, you lost your first tooth!

It's a special one and that's the truth

To honour the occasion, I left a few things

(A little bit more than what I usually bring)

A toothbrush to keep your teeth clean

So they'll still be healthy when you're one-hundred-and-fifteen!

A shiny new coin, to buy something new

And last but not least, something tasty to chew

Great job Rio, you are really sweet

Think about this until next time we meet...

You might spit when you talk or whistle when you sing

But losing a tooth is a wonderful thing!

Love TF

ps: Any more wigglies?

Three more teeth are loose! Tooth Fairy's going to be busy!

*And if you're wondering, that bit of poetic magic was a tooth fairy original. Oh yes, she's got some talent. 

CP Awareness: The Words I Needed to Hear

Sometimes I wonder what all the purpose is to all of Asher's therapy. I have no doubt it is helping, but I cannot be sure just how much. At times I wish we could just throw it all away, pack up, and move somewhere tropical, living a much simpler life than we lead now. I think that in that case therapy might not be so missed. But unfortunately, at least for now, that is not the reality. In our current life therapy has a big and important place. Our most recent addition a few months ago was speech therapy. I was concerned by both boys' delayed speaking, and especially in Asher's case, worried that it may be caused by the CP.

Now don't get me wrong - I love the boys' speech therapist. She is a wonderful woman and the boys truly enjoy her, but many times I've thought I may have jumped the gun on getting them referred. They are micro-preemies, they are also boys, and twins: three huge factors against them speaking in any sort of timely manner. Maybe I was over reacting a bit with the referral? But within moments of her walking in the door last week, after a month's absence, I realized I was not.

Not because she discovered some issue with the boys' speech that I hadn't realized - just the opposite in fact. She had no issues with their speech WHAT-SO-E-VER.

In her words, she is thrilled and excited by their progress (if I had to guess I would say they have close to 100 words as compared to 35 a month ago). She is absolutely blown away by the clarity of Asher's speech, and that given how profoundly affected his motor skills are, that is a very pleasant surprise!

As an added bonus, she understood WAY more of their speech than I did. Obviously she has a lot more experience than me in using context to put meaning to words, but I was amazed at the "conversations" they were having that I would otherwise think were just baby talk.

This taught me a valuable lesson - each set of trained eyes we can have on the boys is beneficial to all of us. In this case, it wasn't the boys' ever-increasing vocabulary I needed to hear - it was their therapist's words of praise that made all the difference. We'll continue to be thankful for every bit of therapy and reassurance we can handle.

CP Awareness: Respite

As special needs parents, respite is something we are really lacking.

Ok let's face it, as parents of three children, respite is something we are lacking!

No but seriously, care for our kids has been difficult. The first while after they got home from the NICU they were very delicate. Aside from the obvious of keeping them germ free, we also had severe reflux to contend with. We didn't trust anyone to feed them, especially not Asher who was prone to turning blue at any moment.

Then, as they became healthier and stronger, Asher's delays started causing difficulties - he could not be handled as easily as other babies. So even though Jordan and I were more than happy to leave them and have a break, a line up of caregivers was not exactly forming outside our door.

Then along came our social worker, who suggested we apply for respite funding. Respite wasn't something I considered for our family because when I thought of respite, I thought of families whose child needed 24 hour medical care; families who literally COULD NOT leave their child because of how involved and complicated their care was. But I was wrong.

Respite in fact, very much applies to our family. Yes, Asher's needs certainly do not require round the clock medical care, but he IS harder to take care of than other kids. You can't just "put him down".. You can't let him feed himself. You have to carry him everywhere he needs to go...and let me tell you that at 30+ pounds that is a feat in itself. And not only do they consider the needs of the child in question, they consider the needs and the stress of the entire family, and apparently when you look at the greater picture, YES, we qualify!

So what this means is that starting now we begin the search for a qualified respite worker. There is a referral service that helps us, but it is our ultimate decision to choose who is the best fit for our family. I hope that given the fun ages of our kids, and the relative ease of taking care of Asher, that we should have a few people to choose from - fingers crossed. I am a bit nervous about the interview process, but we will try to do as much as possible over email/telephone, so hopefully an in person meeting should go really well.

And when we find someone - glory hallelujah! That means that we get 20 hours per month covered for three months, followed by 10 hours per month for 9 months following that. If we want more hours we can add them at our own expense and even when the funding stops, we are now remain in a pool of qualified workers we can hire out of pocket at a reasonable rate.

We are so excited and feel very fortunate. Hello Jordan-and-Tracey time!

CP Awareness: He's Just a Boy

Unfortunately Asher's physical disabilities prevent him from keeping up with his peers. The inability to sit, stand, crawl, walk or even use your arms properly really hampers your ability to play and explore like a typical two year old. We do work very hard to give him all possible opportunities for "normal" play, but the reality is that there are some every day things he just can't take part in.

That said, Asher's physical disabilities don't stop him from being a typical two year boy old in pretty much every other way.

• He loves cars, trucks, and anything that moves
• He loves loud noises, particularly: sirens, things that go boom, and his own screaming voice
• He finds anything related to his bum hilarious. HIL-AR-I-OUS
• He loves rough play
• He fights with his siblings
• He throws tantrums when he doesn't get his own way
• He is demanding
• He is opinionated
• He knows he is funny and loves the reaction he gets from it
• He eats like a horse one minute and then becomes Mr. Picky Pants the next
• He manipulates us more than I'd like to admit
• He is learning and growing and changing by the second

See? Just your run of the mill two year old who also so happens to live with CP.

CP Awareness: Q&A With The Beautiful Side of Hectic

Cheryl at "The Beautiful Side of Hectic" is posting Q&As this month, answered by parents whose kids have CP, or by adults who have CP themselves. It's the same set of questions for everyone, so it will be interesting to see how everyone responds differently.

Check out my post here.

CP Awareness: 8 Things You Don't Know About Me

Although our lives are an open book on this blog, I would suspect there are actually a great deal more than 8 things you don't know about me. But in regards to being a special needs parent, the following things pretty much sum it up. The author of the article I am sharing beautifully articulates feelings I didn't even know I was having. I can't put any better words around it than she already has, and while her son's disability is vastly different from Asher's, saying I can relate to what she's written is an understatement.

Please, click on this link and give it a read. And you may notice that the article is "7 things you don't know about me" when I am claiming 8. Well that's because there's a 8th thing I'd also like you to know:

8. A quote from my friend Sara, whose daughter has Type 1 Diabetes:

She tossed and turned all night only to have me wake her when she had finally fallen into a deep sleep. "Sorry baby" I whispered, "I'm going to have to change this insulin site." She could barely open her eyes but she grinned and said "Let me roll my butt your way" and then laughed out loud because at eight years old the word butt is still funny. 

An inch and half long needle in the middle of the night and she laughed and rested her little hand on my arm. I wouldn't trade this Motherhood for all the healthy kids in the world. Because I have this kid. How did I ever get so lucky.

This special needs parenting road some of us are on is no doubt a difficult one, but just as much so it is a beautiful one. I too wonder every single day how on earth I got lucky enough to be Asher's mom. If there's one really important thing you should know about me, that's it.

CP Awareness: Labels

I'm sharing a recycled post from last summer about the use of the label "Cerebral Palsy" in our house.  It's a label Asher has, but one we rarely use - unlike his other more important labels such as cute, amazing and brilliant!

This post is still relevant, and will be even more so when Nolan and Asher start asking questions themselves. Check out the original post here.

CP Awareness: MRI

Asher's MRI is booked for May 1

I'm dreading it.

There is so much fear involved in finally having a clear picture of just how bad the damage is - something that numerous head ultrasounds and an EEG haven't really been able to tell us in the past.

What if the damage is much, much worse than we are aware? What if it is affecting him in ways that we haven't yet discovered? And what if it shows nothing different from what we already know, and therefore we have no answers for why his physical disabilities are as severe as they are?

I sense that the entire ordeal is going to be ridiculously emotional.

But in the end, what's keeping me sane is the knowledge that no matter what answers we get, nothing changes. Therapies and outcomes remain exactly the same. Whatever damage we see, it is NOT showing all the miraculous new connections that Asher's brain is undoubtedly making - we see evidence of this every day.

And most importantly, every millimeter of Asher is adored as he is, and no MRI is going to change that.

CP Awareness: New Therapy - Taping

In addition to all of the therapies I reviewed yesterday, we've recently added something new to this mix: taping. Using a combination of rigid and kinesio tape, our PT and OT are trying out different patterns of taping to see if it can offer Asher more support. The idea is that where the tape lies, a motor pattern is either being suppressed, or stimulated, depending on how the tape is positioned.

In the example below, our first attempt, the tape coming over the top of his shoulder, down his scapula and around the side of his ribcage is meant to act as a support to his scapula. He has a tendency to raise that arm and 'wing' his scapula, preventing him from using that arm when he is excited or upset. Imagine we had one of our hands cupped around his scapula in the back and the other in the same position on his chest, gently putting pressure on the top of his shoulder - that is what this tape is mimicking.

The other tape originated near the inside of his elbow and came around his bicep, up behind his shoulder and across the top of his back. He has a tendency to internally rotate his right arm, so this is attempting to counter that by helping with external rotation.

The tape lasts through normal wear and tear and bathing for around 3 days. Until we decide on an exact taping pattern (other combinations will be tried to see what works best) he will only be taped by our PT our OT, and we only see one of them weekly. However, if there is a particular pattern that we believe is making a difference, Jordan and I will learn how to do the taping ourselves so we can replace it as soon as it comes off.

On first attempt, it seemed to help. It was really hard to say because it's not like his right arm suddenly worked normally, and it is not even as if it helped him to use it more. That said, I am quite certain that when he was at rest his right arm maintained a much more neutral (i.e. "normal") position. Unfortunately the rigid tape caused skin irritation, but the kinesio tape was fine. For now we will explore patterns that work best with the kinesio tape only. 

This is a small positive change, and definitely worthy of pursuing in some form. If his right arm is not getting in the way of him using the rest of his body, as it often does now, that is a huge accomplishment. And even if all of these therapies are only offering him little bits of support, we'll take them. Any improvements are worth celebrating!

CP Awareness: Therapy in Review

In the past I have explained Asher's therapy in detail but thought I would give it a quick review...

Through our early intervention program, Asher has regular Occupational, Physical and Speech Therapy and well as an infant development consultant. All of the ladies on his team work together and we see them once a week. Until recently the therapy was always in our home, but in the past few months we have been visiting the physio gym at their centre for a couple of appointments per month. It is a great change of scenery for the boys and gives them a ton of equipment to play on and try out.

Although we do stretching and exercises as a result of these therapies, at this point it is mostly about making Asher's life easier - how to position him best for play, eating, etc. Because Asher doesn't suffer from severe spasticity, we don't have to stretch him all the time, but we are aware of every opportunity when we can give his calves and hamstrings a stretch during play. And when we're holding him, sitting with him, or helping him stand, we are always very aware of his body position, sure to interact with him in the ways that give him the most support.

Then there's all his gear, most of which we have been lucky to borrow from the early intervention team. His stander, his chair and his new seating system are the current flavours of equipment we have on the go but many more have been tried at different times depending on his needs.

In addition to those traditional therapies, Asher also sees a Feldenkrais practitioner several times a month (1-3 times per week depending on the week). Although small changes, we have definitely been seeing results and so feel very positive about continuing.

We have also tried Cranio-Sacral therapy, but for now at least we are putting that on hold. We have experimented with theratogs but are currently trying taping instead (will get to that tomorrow). Taking him to a naturopathic doctor is high on my list of to do's, and our Feldenkrais practitioner has recommended therapeutic listening, but I need to do some research first. For now I think our plate is full enough.

Phew...I think at this point in time that covers it. And I wonder why I feel so busy?!

CP Awareness: Essay on Worry

One emotion that never leaves me is worry. I have been a worrier my entire life, but with the birth of the boys, then Asher's bleeds, then the CP diagnosis, (not to mention the thryoid cancer) I am generally consumed with it.

For my second writing class through The Momoir Project, I decided to focus my full length essay on the worry I feel about Asher. I never chose to share this at the time it was written, but I think it is a fitting time now; I am making you aware of the amount of worry and stress that a parent of a special needs child lives with every minute of every day. The worry is the biggest strain CP has put on us.

CP Awareness: Cary's Wisdom

Yesterday's post about my circle of friends was a good segue to today's post. Cary is one of those moms, and last year, after Asher was diagnosed, she was a guest blogger here. Her post from that day is still very relevant now, and just as important to us as it was then.

Please, be reminded, and read Cary's awesome post here.

CP Awareness: Circle of Friends

Remember that book Circle of Friends, by Maeve Binchy? I think it was a movie too - starring Minnie Driver and Chris O'Donnell? Am I way off base here? I could probably take 30 seconds to check out Wikipedia or even IMDB but nope, I'm going to assume I'm right because really it matters nothing to this post and I'm just rambling.

The reason I mention it is because when I think of the CP moms I know, the first phrase that comes to mind is "Circle of Friends".

Prior to having the boys, and then having Asher diagnosed with CP, I never would have believed I would make friends over the Internet, but that's what's happened. Sometimes they're just acquaintances that I bounce ideas off of, or pass some advice along to about things we've gone through. But other times they are real true friends who know more about my worries and struggles with CP than just about anyone else in this world.

"Meeting" these women has been absolutely invaluable to me. Many of us stay at home full time to care for our kids, so we provide a social outlet for each other that we are missing from our former careers. But most importantly, they are other moms who just "get it". Although the problems may not be identical (they almost never are - remember the umbrella?) they can offer words of advice or just send virtual hugs. Because they know not only how hard it can be at times, but how rewarding and amazing it is to achieve milestones and new advances that we never thought possible.

So when times in the world of CP are tough, I have somewhere that I feel safe and able to be myself. When times are good I have somewhere to share our achievements, even if they are teeny tiny achievements that maybe no one else would appreciate unless they lived with CP too.

Thank you circle of friends, spread literally all over the world. Where would we be without the Internet?!

CP Awareness: The Faces of CP

Leading up to Asher's diagnosis, when we started telling people we thought it was coming, we were always met with shock. Although everyone knew Asher had suffered devastating brain bleeds, amongst a million other complications, people could not believe our baby who "looked so normal" was, well, maybe...not.

Because I've come to realize that when people think of what CP is, it's generally not Asher. People have an image in their minds, so when they see our bright, alert beautiful little boy they have trouble believing the severity of his condition. Yes, Asher may be lucky that he is not affected by many of the issues that other people living with CP face, but in terms of his gross motor skills, he is profoundly affected.

The reality is, Asher has CP, no matter how he looks. No matter what you have pictured CP to "look like" it can look like many things. CP has many faces, and they can look like this:

and this

and this

and this

and this

and this

and this

and this

and this

CP can look like a lot of different things. Try to have an open mind ok? Remember not to judge a book by its cover.

CP Awareness: What CP Didn't Do

There are tons of quotes and poems out there that tell me all the things Cerebral Palsy can't do to you. It can't take away love. It can't distinguish hope. It can't prevent laughter. All very true and all incredibly inspirational.

But luckily, I don't need to read quotes to see that - I just need to look around my own home. This house is stuffed to the brim with love, laughter and hope. Sure, Jordan and I have our depressed/scared/worried times, but I can say that 9 times out of 10, we don't feel that way at the same time. Or even if both of us are having a particularly bad day, the kids continue to laugh and love and enjoy life to the fullest. We are truly blessed that despite the hard times, this family is happy.

When I do need inspiration is when I feel overwhelmed with the physical stuff - when I fixate on the fact that Asher is more than 2 years old and not sitting, crawling, or standing. Maybe he never will and that is hard to take. So at times like that, I need to focus on the measurable stuff and think about all the things that CP didn't do* to Asher:

• CP did not cause Asher to have any eating or digesting problems. In kids with CP, low tone often causes issues with chewing/swallowing/sucking, and then digestion in the lower digestive system. Some kids with CP require a feeding tube. Asher does not. He's a big strong boy who loves to eat!
• CP did not cause Asher to have any major vision problems. Yes, he has a bit of strabismus in his right eye, likely caused by the CP, but at this point it is by no means severe enough for surgery, or even glasses. More severe strabismus, or far more serious vision impairments, are common in kids with CP.
• CP did not cause Asher to have seizures, as many kids with CP do. I cannot imagine the stress and worry associated with that.
• CP did not cause Asher to have respiratory issues. Kids with very low tone in their trunk, like Asher has, can have breathing problems. Not Asher. And considering how long he took to learn to breathe on his own, that's a pretty amazing feat in itself.
• CP did not cause Asher to be non-verbal. Kids with CP can have verbal disabilities, and maybe even be completely without speech. Even if Asher ends up having a speech impediment we are still confident he will be able to communicate verbally. His vocabulary and understanding are multiplying by the minute.
• CP did not cause major cognitive problems. We think. This is hard to measure now because we can't test his intelligence. And note I said "major". We have no idea of the learning delays Asher will face (or Nolan for that matter). But at this point, Asher seems as cognitively and socially equipped as his same-aged peers.
• The brain bleeds leading to Asher's CP did not cause him to have a shunt. As I have mentioned before, this is a miracle. His bleed was severe and it is almost unheard of that the blood drained itself. Most kids with bleeds as significant as Asher's require a shunt and then live with its potential complications.
• And to reiterate what I said above, CP hasn't taken away our family's ability to love, hope, and laugh. The amount of sadness CP brings to the table pales in comparison to all the good stuff our family still feels every day.

Lastly, most importantly, and not necessarily related to CP directly - the infection leading to the brain bleeds, and the bleeds themselves, did not take Asher from us. Asher could have died. DIED. I have mentioned this miracle many times but I can't say it enough. In Asher's first three days of life he was gravely ill, to an extent we were not really aware of when we were going through it (Thank God!). Asher lived through that infection. Asher lived through a catastrophic bleed. Asher lived through a million more severe setbacks throughout his hospitalization, but recovered (eventually!) from all of it, strong and healthy as an ox.

All that considered, what's a little CP, when faced with the alternative? Sure, CP has taken some stuff from Asher, some big stuff, but not the things that actually matter.

Yup, that's you I'm talking about, mama's boy.

*I know that many kids with CP experience some of these problems and many others do not. But this list is specific to what Asher lives with. And while anything is possible, CP is non-progressive so it is likely that none of these things will begin affecting Asher now.

CP Awareness: What to Teach Your Kids

Uh oh, it's my first cheating post and it's only day 5!

No I didn't write this but it is too good not to share. I certainly don't have this wisdom (yet) as Asher is still young and no one really notices his differences - but I know it's coming so I too need to learn from these awesome moms.

Please, take a minute, click on this link and read each entry in the slide show at the bottom of the post. It'll do you some good, whether you have young kids you need to teach or not. All of us can use a little bit of educating in this department.

CP Awareness: The Umbrella

I presume we all know what it means when a condition is described as an umbrella. Cancer, for instance, is about a zillion different diseases, all wrapped up in a neat little word that scares the pants off of people.

CP is a big umbrella too, but hopefully not quite so scary! It not only includes different types, but the way people are affected within each type is infinite. For instance, within spastic C.P., someone can be quadriplegic, hemiplegic, diplegic, triplegic, or monoplegic (although Asher only has a very small bit of spasticity, it affects all four limbs and therefore he would be considered quadriplegic.)

But even once classified, how a person is affected can be vastly different. I will hear a description of a child who sounds exactly like Asher, but then they may have vision problems too. Or a child who walked at the expected age, but has a feeding tube or is non-verbal. I honestly don't think it possible that two people with CP have all of the exact same symptoms.

In Asher's case, we've been told he doesn't "fit the box" many times. In some respects it's frustrating because it's difficult to make any reasonable guesses about his motor skills. But at the same time, that's pretty positive too - no limitations for what he can accomplish. My hope for Asher is that no statistics or doctor's prognosis ever stop him from achieving everything he is capable of. If his determination is any indication, there is no doubt he will continue to exceed expectations.

CP Awareness: Types

Cerebral Palsy is an umbrella term to describe many different symptoms and levels of severity of motor impairment. It can be classified as follows*:

Spastic:

Spastic CP is the most common type and is caused by damage to the motor cortex. Spastic muscles are tight and stiff, which limit movement.

Choreo-Athetoid:  (also known as dyskinetic or extra-pyramidal)

Choreo-Athetoid CP results from damage to basal ganglia or cerebellum and leads to difficulty in controlling and coordinating movement. Children may have involuntary movements (which frequently cease while they sleep), or have difficulty with skills that require coordinated movements such as speech or reaching and grasping objects smoothly. Some terms commonly used to describe these involuntary movements include:

• Athetosis - slow, writhing movements, particularly in the hands and face

• Ataxia- unsteady walking and balance problems. Ataxia results from damage to the cerebellum, the brain's major centre for balance.

• Chorea-jerky movements of the head, arms or legs

• Dystonia-twisting movements and postures of the trunk or limbs

Mixed Type:

When areas of the brain affecting both muscle tone and voluntary movement are affected, a diagnosis of "Mixed-Type CP" may be given. Usually the spasticity is more obvious at first, with involuntary movement increasing as the child develops.

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Asher was originally diagnosed with Athetoid CP. He is definitely not predominantly spastic (although has some tightness) yet is also not "fitting the box" of athetoid. His involuntary movements are not slow and writhing, nor does he lack control in his face/mouth - a common effect of athetoid CP. We are hoping his upcoming MRI will shed some light on his diagnosis; however, since his treatment will not change no matter the label, the specific type is of no real concern to us. We suspect his eventual diagnosis may be Mixed Type to account for the combination of symptoms of both extrapyramidal and spastic.

* All info taken from The CP Association of BC website, with the exception of notes added by me in italics to explain how Asher is affected. 

CP Awareness: Definition

Cerebral Palsy is defined as*:

A group of disorders affecting body movement and muscle co-ordination. The medical definition of CP is "a non-progressive but not unchanging disorder of movement and/or posture, due to an insult to or anomaly of the developing brain."

Cerebral = of the brain

Palsy = lack of muscle control

Any damage to the developing brain, whether caused by genetic or developmental disorders, injury or disease, may produce CP. 

During Pregnancy:

Anything which tends to produce a low birth weight baby will increase the likelihood of CP. Factors during pregnancy which may cause CP include:

• Multiple births (twins or triplets) - ASHER
• A damaged placenta which may interfere with fetal growth
• Infections - ASHER
• Poor nutrition
• Exposure to toxic substance, including nicotine and alcohol
• Maternal diabetes, hyperthyroidism or high blood pressure
• Premature dilation of the cervix leading to premature delivery - ASHER
• Biochemical genetic disorders
• Chance malformations of the developing brain

During Labour:

• Premature delivery - ASHER
• Abnormal positioning of the baby (such as breech or transverse lie) which makes delivery difficult
• Rupture of the amniotic membranes leading to fetal infection

In Early Childhood:

CP can occur if a young child suffers brain damage due to:

• Infections such as meningitis
• Brain hemorrhages - ASHER -- this is assumed to be the primary cause of his CP, brought on by his infection and premature birth as described above
• Head injury following falls, car accidents or abuse
• A lack of oxygen (asphyxia) due to accidents such as drowning - ASHER (or in his case lack of oxygen from profound apneas)
• Seizures

* All info taken from The CP Association of BC website, with the exception of notes added by me in italics to explain the many possible causes for Asher's CP

In Other News

Well I'm not going to blog entirely about CP in March - if other stuff comes up I'll write about that too. Although don't expect many of these type of posts, as I'll be struggling enough to come up with my required 31 for the month!

But there are some other things going on around here, such as:

• The surgeon has agreed to biopsy me! I love how I think a biopsy is good news, but it is! No idea when that will be, but it's in the works
• Nolan is taking independent steps regularly, just not really at the same time. Three to five are his usual number of steps, sometimes as high as ten, but never strung together. If only that five plus ten happened at the same time, we might actually call that "walking"!
• We said goodbye to Asher's OT today (going on mat leave) and met his new one for the coming year. Of course I cried. Luckily she has only seen me cry about four thousand times in the past, so she couldn't have been surprised. 
• Rio's teacher (and the rest of the teachers in BC) are going on strike on Monday for three days. I couldn't be happier for them. They have been on some sort of modified job action for the entire school year and I am glad that this is hopefully going to be resolved once and for all. Since class size and special needs services are some of the biggest issues, I feel very strongly that this is worked out in their favour. 
• Because of this strike, followed by 2 weeks of upcoming spring break, Rio goes to school for two days in the next 3 weeks. Give me strength, I better come up with some good activities! Thank goodness skiing is going to occupy several of those days.
• Asher is talking LIKE CRAZY. It is so funny how the boys seem to jump ahead of each other in their talking skills. Asher started with their first few words. Then it was Nolan who blew Asher out of the water. Now it is Asher who has a word for absolutely everything. Most of the words are things that only his parents can understand, but isn't that the way when most kids start talking?!
• Today we had our first session with our "family friend". A family friend is a volunteer through the foundation that provides our early intervention, giving a little bit of a break to families with special needs kids. She comes once a week for two hours, and while I need to be home, it gives me a bit of time without being hands on with the kids. And just as important as the break for me, it is two hours of FULL ON PLAY for the kids. I can't think of the last time that I have sat down for that long with nothing else on my plate but play time. I'm guessing never. Listening to the three kids plus our "friend" going absolutely nuts in the toy room has been awesome.

On that note, she needs to leave and therefore I'm back "on duty".  More CP goodness tomorrow!

CP Awareness Month

March is Cerebral Palsy awareness month so I have taken on a bit of a challenge. Every day in March I am going to post about CP - whether it be facts, or a glimpse into our family's life living with CP. I will likely not keep everything exactly CP specific - I will probably do some generalized special needs posts (considering that CP is the flavour of special need in our house, I think that it's pretty relevant) and may even recycle some of my old posts on the subject.

Green is CP's ribbon colour, and while there are a million awareness ribbons, I got Jordan to make one especially for Asher. Each post will be stamped with the image above and it will be my facebook profile pic for the month.

Please, come by every day in March and learn. Asher and everyone else living with CP deserve your knowledge and understanding.

Technically this counts as my first post of the month, right?! I promise the next 30 will be more interesting than this one.