Yesterday, I sat on a nice high. I golfed and then spoke at a tournament raising money for our local children’s treatment centre Thrive. I got up, I told our story, and thanked all of the golfers for their generosity in the tournament and auction, because their contributions matter to families like mine!

Ahhhh… then there is today… the boys wake up at some un-godly hour. They refuse to take their pyjamas off when it’s time to get dressed and then they run around naked while I’m trying to find clothes. They take their shoes off after I’ve put them on, they unbuckle their seat belts mid drive. They scream at me because I’m not stopping for a lollipop… one poops his pants and discreetly tries to clean it himself by making an even larger mess through my house.

I’m done.

Some days I feel like I know what I’m doing. Others, I’m clearly still learning.

What I know for sure is that we’re all ready for school to start back up and get some structure back into our lives!

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I’ve had many people ask me about the blog. It’s seriously not because I’ve run “dry” but I get distracted and drop the thoughts!

Go figure!

This summer has been the busiest I remember since becoming a mom. July meant 5000km on the van driving all over the province… August, just trying to stay sane. HA HA HA!

Macartney has been enjoying quite time, exploring her musical tastes, and learning the guitar. Man, I’ve had a lot to reflect on about how awesome she is. I have a few vlog posts rolling around my head about her and her compassion and tenacity!

The boys, well, we all know they are the main thing that my blog posts are created around. I write about them to help people understand. None of us as parents are “taught” how to raise kids with Special needs. I’m just throwing my blossoming knowledge to make people feel less alone!

They have been a challenge – think “the terrible 3s” Remember when you thought 2 wasn’t so bad, then your kid hit 3 and you were like “What the HELL!!!???” That’s where we’re at. Except they’re about 70lbs each and over 4 ft tall…

I’m tired, I just woke up from a nap in the middle of the afternoon to hear the boys have found some Irish barbershop kind of choir to watch on YouTube. Correction – I’ve been told it’s just videos of Irish drinking and singing in pubs.

And now they’ve all descended upon me… in my bed… asking about my blog… (well, the one that can ask)

Step one to successful blog? – write it when the kids are in bed!

I leave you with this image that made me laugh.

Today’s I was reminded how important the little things are…

Most of you know that my husband, Jeff, and I are the parents to 3 beautiful children. Our daughter, 13, and our twin sons, 11. If that isn’t enough, the boys have Developmental disability which throws in a whole mixed bag of challenges.

As a couple who has been together for 19 years, married for almost 15, with 3 kids, jobs, activities, etc, it is challenging to keep it together.

Today reminded me how the little moments count.

Jeff was working his shift (8-4), I had had a busy day of appointments, and had finally gotten all the kids home and realized I needed to go to the grocery store. The beauty of having a 13 year old, incredibly responsible and reliable daughter, is that you can pop out without hauling everyone with you! I ran to the store to pick up needed things for supper. In the meantime, Jeff has texted “hi!” Jokingly, I let him know that I left the kids home to run to store “wanna come on a shopping date? Lol” as I’m cruising around the store many minutes later I get a reply “sure. Lol”

I can tell you I was very pleasantly surprised when I saw my hubby walking towards me in the store.

We walked around picked up supper supplies, decided to get a plant, cashed out and walked to the parking lot. All in a matter of 15 minutes.

Can I tell you how nice that 15 minutes was?!? To just walk beside my husband, enjoy a stolen moment away from the kids…. we had time to just breathe before the chaos and neediness (although we love it) of the kids hit us.

Steal the moments, have the dates. Even if it’s at the grocery store to buy pasta and plants.

One of the hardest things for me to deal with as a special needs parent is the boys’ birthday, which is coming up on March 5th. They will be 11.

For those of you who know me, I’m a Birthday NUT! (By the way, my birthday is in a month)

I have my biggest bouts of grief surrounding their birthday. It makes me sad that they don’t do a countdown, they don’t know when it is, they can’t tell us what they’d like – presents, flavour of cake, theme. Selfishly, I feel like I’ve robbed of those joys of motherhood. I’m NOT so much of a control freak that I relish in the fact that I have to think out every detail and party plan. I loved when my daughter thought that she wanted a cupcake decorating station for her birthday… against my better judgement, we did it, and I’ve been cleaning sprinkles out of the grooves in the floors for years after!

I’m sad that they can’t tell me who they want to share their day with. I’m sad that I have to ask people at the school who a) is a friend and b) would be delighted to come to a birthday for Drew and Dean. I get sad because not only do I have to rack my brain for ideas for them, I have to think of ideas for everyone else wanting to get them something.

I KNOW that they will be delighted with whatever we decide to do to celebrate them. They LOVE birthdays. They celebrate everyone’s with the same enthusiasm. They WILL open your present for you. They WILL blow out your candles.

I, as their mother, just have a strong desire to let them know how much I love them and create a very special day for them, even if they don’t completely understand its their birthday.

So Once again, it’s February (I know I’m cutting it close in the last hours). Inclusion awareness month.

Every year I revisit our family’s definition of inclusion.

It’s such a heavy and confusing term.

It’s quite simple though. We want our kids to go to school happy, come home happy, and have meaningful opportunities and experiences in between.

I don’t need my children to fit a mould. I don’t need them to sit through lessons because that’s what their class is doing, we need to know that our children’s strengths and interests are being encouraged and their other skills developed at opportune times throughout their days.

I love that although my boys are infamous, when they misbehave, they’re still getting time outs or reflection. I love that the boys are welcomed to learn with the SK/1 class for math, because that’s where they are at. I love that a whole new group of students is learning about differences in abilities and understanding that Drew and Dean have some pretty awesome qualities alongside their deficits.

I love that people not directly involved are learning signs in order to communicate with my boys. i love that students are finding signs to teach them new vocabulary.

Inclusion doesn’t mean you have to like my kids “just because.” Inclusion means accepting them and showing them that they have a place alongside you because you recognize that they belong and have value in your community. Inclusion is showing empathy and kindness.

Inclusion is finding your place in the world and being accepted there…

I put off watching the movie Wonder for a long time. I don’t think it takes a rocket scientist to figure out why. I knew this movie would potentially hit me HARD.

My daughter convinced me to purchase the pre-release and have a movie night.

Part One

I was instantly hit with emotions and ones that I didn’t expect. I surprised myself by instantly judging this family for homeschooling their son for so many years, and THEN deciding to integrate him into middle school.

I was thankful for the strength and support we received when registering the boys for school, and that the idea of keeping them home never occurred.

What I’ve learned, and what I feel we’ve done right, is building an accepting and open, honest relationship around the boys and school. Inclusion isn’t even a term we use anymore, it’s a way of being.

The students are excepting of the fact that the boys are different, and I truly believe that they are all more tolerant of each other because of it. They have grown with understanding that we all bring unique strengths and needs to the table and everyone has value. These kids love and support my guys and want them included in everything, and do their best to make it happen.

The benefits of having “Special Needs” kids included in mainstream education far outways any reason not to, in my opinion.

Part 2

The other thing that really hit me with this movie was the sibling piece. My heart used to ache for our daughter. One of my most painful days was when she exclaimed, “Why can’t my brothers be like everyone else’s brothers!”

The impact (in the movie) on the sister was visible.

We’ve always made certain that our girl was never given responsibilities out of normal sister responsibilities. Although she retrieved diapers and wipes for us for far too many years!

We’ve always tried to make her feel special in her own right, but she’s taken the back seat time and again. She’s become (or maybe always has been) one of the most beautiful, compassionate and kind people I know. The more we move on this journey, the more I know we’re doing ok, that she is going to be okay. I’m confident that we’ve given her the tools she needs to continue to be an awesome person!

The movie depicts some jealousy or resentment perhaps, and I don’t doubt that will happen more than a few times in our girl’s life. I then think to “normal” sibling relationships and am pretty sure that’s happening in those ones too!

Putting it altogether, this movie pulled and yanked at my heart, I think because it was so true to the emotion I have felt in the past 10 years. I appreciate that it has provided a perspective to those not in this world, a tiny glimpse into what a rollercoaster we ride.

And what a ride it is!

So today is World Cerebral Palsy Day.  It falls (now) every October 6th.  We wear green to support (in whatever way you define the term) those with a Cerebral Palsy. 

I could tell you all the ways I grieve, and all the ways I feel I’ve lost or am missing something in my life because my twin guys have a Cerebral Palsy, but today my heart is too full.  I am brimming with joy.  I am thankful.

I used to think inclusion was simplistic.  Keep them in the same school, include them in what everyone else was doing, with modifications.  If the rest were doing it, so would Drew and Dean!

Today, as I spoke to the boys’ class, I realized inclusion is just BEING.  I spoke to them about diversity, and all of our unique qualities which are important to the world around us.  How if everyone were the same or did the same things life would be boring.  We are all SPECIAL because we bring something different to the world. 

Inclusion isn’t about being like everyone else, it’s about being who you are and being accepted, admired and supported.  It’s about being able to share joy and triumph wherever we see fit.

This week has shown me what a wonderfully inclusive environment I send my kids to during the day.  Yeah, they can’t do the math and can’t participate in conversation, but they are recognized for their love of singing – so they’ve been asked to join Glee club; the children in their class asked questions they’ve been dying to know to gain insight and how to sign to them; and the music teacher asked how she could modify the curriculum for their year of recorders (I kindly suggested/requested kazoos instead.)

All of these things show me inclusion. No one is trying to change them.  Just appreciating them for who they are.

Happy World CP Day everyone! 

Hi. I used to be like you. I was impatient. I hated waiting. I needed to move. Lines were a peeve. Slow walkers drove me nuts.  And don’t get me started about slow drivers!

Then I became a mother. My first child, our gorgeous daughter taught us that we may not get places on time.  She ran the show.  We learned that babies held power. If we didn’t get home at bedtime, there was no bedtime!

Then we had the boys, our identical twins.  They came early, but time slowed down. 

We waited patiently for them to eat and grow. We waited patiently for them to get strong enough to come home.  We waited 4 weeks and 1 day.  If you’ve never left your children behind, you won’t understand this pain. 

When we brought them home finally, we waited… we waited for them to reach milestones.  They didn’t reach them.  We waited for referrals to doctors.  We waited and waited.  They started hitting milestones. Sat up at 15 months…. commando crawled at 21 months… we waited… we waited for a Doctor to tell us at 26 months that they indeed had a Cerebral Palsy – Periventrucular Leukomalacia to be exact.

We then waited some more.  These boys have taught us more patience than anyone can ever imagine.

We waited for them to stand.  We waited for them to walk. We waited for the walkers we had to order to help them to walk. We waited for them to talk. We waited for leg braces. We waited for meetings for school entry.  We waited for more meetings. We waited for the cab that would drive them to school because they couldn’t walk. 

During all of that waiting… we WORKED HARD… really, really hard.  

We watched our boys take their first steps well after their 4th birthday… we watched them walk away from their walkers.  We watched them learn to climb stairs.  All with tears in our eyes.

We cried because we were told that they may never be independent, never walk, never talk.

They now walk  and run and jump and climb stairs… we are still patiently waiting for them to talk so that people understand…

They now ride the bus!

They get tired, really, really tired from all of the work that they do at school.  They LOVE riding the bus.

Which brings me back to you.  Mr. Impatience.  Please. Please don’t yell out of your window at us.  We are moving as fast as we can.  We are trying our best. As the parents of Drew and Dean we are so thankful of the 98% of commuters that appreciate that some kids are slower to get off the bus… but you, the one guy in line who yells at us… you ruin our moment. 

If I can ask of nothing else, please have patience for kids getting off the bus.  Not just mine, but all of them.  Show kindness and patience.  It will change your life.

It’s a constant struggle, and maybe as a parent in general, but as a special needs parent for sure.  I have had many conversations in the last while with my blogging/special needs parent friends about wishing we could just lay it out… stop being inspiring and insightful, stop being positive, stop being happy and “okay” with the lives we’ve been dealt. 

After this blog, I’m gonna go for it! I’m gonna tell you…. it SUCKS!!! I don’t mean all the time, but more often than we let on.  I am SO AFRAID! 

I’m afraid that I’ll never get these guys toilet trained.  

I’m afraid that they’ll never be able to have conversations that other people will understand.

I’m afraid that they’ll grow out of being cute, and be nuisances.  I’m afraid that people will think they’re nuisances!

I’m afraid they’ll never be independent enough to live away from us.  I’m afraid that we’ll not be able to care for them forever.

I’m afraid that I’ll lose more friends.  I’m afraid that I’ll get less  invites to things (family and personal).

The list goes on and on.

I’m afraid I’ll become bitter….

I love the sentiment, and I seriously don’t want to offend anyone in any way… but it HURTS when people say God chose us to be their parents. WHY?!?! Why us?!? 

I grieve about all the things my guys can’t do.  I get jealous about what other kids their age are doing.  I am blind (and choose to be) to what their peers are learning in school while my guys are learning colours and letters…

I WANT to be positive and happy and inspiring and insightful.  I have taken on this role the best way I can.  I have become a strong advocate, I have educated, I have learned!  But I just can’t be that person all the time.  

And I want to tell other parents IT IS OKAY.  Yes, embrace the role that you’ve been thrown into whether you like it or not, but don’t feel bad when you want to scream.  Scream. Be sad. Be angry. YOU ARE ALLOWED. 

Fall is probably one of my favourite times of year for exploring and being “outdoorsy”… I love taking in God’s beauty, loving the colours, the warm sunshine, the cool air, the nice smells of leaves as they fall to the ground…

This year I had a pity party for myself and fell into one of my little times of grief.  I’ve spoken about this cycle of grief that parents of special needs parents go through with various things.  I grieve when I feel like I’ve “lost” something that “should have been.”

 This last moment (which lasted about 2 weeks) came from not being able to take a family hike to see the fall colours (as I write this, it’s still there, even though I recognize it).  I see friends posting fun, outdoor family hikes, and although I’m so happy for them, I’m sad, because my guys still are unbalanced and unsure of slopes and grades.  I would love to enjoy the great outdoors with them at this level… but they’re not ready…

I took my daughter out for a hike a couple times, and kept wishing that we could all be doing it.  I took her fishing this past weekend, and wished we could all go fishing.

I was telling a co worker how I honestly felt about the boys not being able to keep up and not be able to do outdoorsy things.  She looked up at me and said “not yet!”

How did I not see that? 

Not yet!!

In all of my grief, I forgot how far we have come with these guys.  How many successes we HAVE HAD! 

I realized in that moment that I’m doing what I need to do, what we need to do.  We are teaching our daughter about loving nature, and the boys as well, at their level…. and we just need to continue to dream and work towards our goals. 
And yes, I will continue to grieve for the things that are lost right now but I need to remember sometimes that the answer is sometimes “NOT YET!”

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