Archives for category: special needs parenting

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!”

I walked away from dropping my kids off at their first day of school feeling absolutely elated!  If any of you have been following along with my life, you will know that first days of schools have been nerve racking and stressful! 

My daughter, is entering grade 5.  She is one of the most beautiful people I have ever met.  She is strong, funny, independent, responsible and gorgeous.  I have no worries for her other than someone breaking her amazing spirit!

My boys, twins, are starting Grade 3.  They have Cerebral Palsy, and a Developmental Disability.  They are handsome, funny and loving.  They, however, are harder to read than a book in Japanese!  We have had our challenges!    

Each year, the first day of school brings nerves and apprehension.  Will their new teacher love them? Will they get good EAs?  Every year, so far, has been different, every year I’ve had to explain the boys.  I’ve made 1 page profiles, I’ve created behaviour plans, I’ve had Daddy stay the morning to make sure everything is good…

This year I walked up to the school and saw the same EAs, the same beautiful ladies, waiting for the bus to arrive to greet my kids!  I have never been more excited to see two faces than I was this morning!

Not to go on about how wonderful these ladies are (they really are), and how wonderfully they work as a team together AND with my boys…. But, as a parent, it creates this cozy feeling of comfort.  I DON’T have to explain mannerisms, communication, behaviours.  I DON’T have to wonder how their day went.  I KNOW that my children will come home happy.  I know that the respect is their between us all. And MOST IMPORTANTLY I know that those EAs are there because they wANT to be!

Being a special needs parent means that you have to let go of stuff you never thought you would.  I am relying on OUR TEAM to help support the boys as they learn new words, learn how to play with others, and learn how to use the toilet (among many other things).  Things I always thought I (with my husband) would be teaching them.

It’s one thing to see your children be comfortable and secure with their caregivers away from home, but it’s a completely different level where I feel secure and happy about where they are.

I thank all of the beautiful people (school staff, therapy team, recreational supports) not only in our lives but all of my fellow families lives, for being the compassionate caring individuals you were put on this earth to be! YOU ARE NOTICED and TRULY APPRECIATED!

In my belief, there are two things everyone can do to create a better world… YOU can change the world by showing kindness and compassion… You don’t need to worry about how to change policies, religion, etc.  All you need to do is be kind and accept others for who they are.

I could have written this post the hurtful, hateful way that I felt earlier after a conversation which inspired this.  But I’m choosing to inspire change in how we look at others.

What I believe: EVERY parent is doing the best that they are capable of. I will say that again. EVERY PARENT IS DOING THE BEST THEY ARE CAPABLE OF!  Think of parenting like a spectrum (like everything else in the world)- there are Super parents, the average parents, and the parents that are struggling… I believe that ALL parents want the best for our children and that we do the best that we can do, given all of the factors that arise in the moment.  No one wants their child to suffer, or feel left out, or to be hungry, or to fall behind.  We all need support, and some don’t have an immediate support system.  

Please don’t judge another parent, or person, because you have no idea what they’ve been through or what they’ve just overcome.  A simple statement like ” I can’t believe they don’t read to their kids!” ” who can’t brush their kids teeth” is judgmental beyond belief! It sounds ridiculous… But true!

Now to clarify, this statement was not directed at me, but I felt the need to step up. 

We do not know the reason, it is not our business!  But to give you example, I will share bits of my life…

I don’t read to my kids at bed time. I try to get in a book here and there, but I am the first one to admit, it’s not a high priority!  I have 8 year old twins in diapers.  They are non verbal and often have tantrums that I don’t understand.  Sometimes I just want to enjoy the cuddles they give me, sometimes I’m holding them tightly so that they don’t slap their heads.  

I don’t have the opportunity to brush their teeth every day (let alone twice a day) because some mornings, like this morning, I was wiping up poop.

DON’T JUDGE ME!!

Parenting is affected by so many factors that we don’t understand.  

If you want to make judgment, make sure you completely understand the situation… 

If you want to make change, show kindness and compassion.  Try to understand and support.  It will get you further.

I find myself opening up to complete strangers, with their questions and sympathy, and find it quite normal now.

A conversation, whether it be at work, in a staff room, with another parent, at a hockey game, in the grocery store, usually starts out with talking about kids. It then turns into age comparison, then I reveal that I have twins (insert halo above my head and twinkling stars), then comes the twin fears and wonderment… “Oh you’re busy!” “Are they identical!?” “Boys! Twins!” Then come questions like “Do they play sports?” That’s when I, again, “reveal” that the boys have Special Needs (insert BIGGER halo and more twinkling stars!)

I get the “God Bless Yous”, and “oh, I’m sorry to hear that” and the occasional mortified “oh..”

I’ve grown to live with that.  As a society, as humans, we are curious.  Society hasn’t “lived with” Special Needs individuals for very long.  We just DONT know.  My generation is probably one of the first to have some students mainstreamed, but barely any.  Institutions have just recently shut down in my home province of Ontario, leaving adults who were secluded, now living in smaller group living residences where they have the ability to venture out into the community with support.

My daughter’s generation will be the most empathetic and compassionate generation yet as kids with Special Needs are just the other kids.  The kids with differences.  My boys are just Drew and Dean, and they’re silly and loveable!

I appreciate all conversations despite how offensive they would seem to anyone listening.  Those questions are honest and difficult, and through honest conversation comes awareness and understanding!  Think, if you were always afraid to ask a question, you would never learn!  We as parents of Special Needs kids have a great power to educate society!  Don’t get defensive or offended if someone asks you if your child can walk, or talk, or make friends, or have a good life!  Teach, inspire, create growth in our society who is still learning how to incorporate ALL individuals into daily life. Integration into society is less than 40 years old…

All of our conversations are important and insightful and learning opportunities!

We are shaping the world for our children…

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I’ve written before about inclusion. I’d like to take the opportunity to bring it up again, seeing as February is “Inclusion Month.”
The term inclusion to me is tainted. It comes with so much confusion, and anxiety, when really it is SO SIMPLE!
My definition of inclusion is this : treat everyone as though they have something to contribute to your life and society around you.
Inclusion doesn’t need to be muddled with policy and paperwork and all of that jazz!
Inclusion is understanding that not everyone will be a rocket scientist, a star athlete, an ‘A’ student, a public speaker, a janitor, a McDonalds burger maker!
We all have our place in society, we are all different, we are all raised differently, we all have something to contribute!
I support “inclusive education” for my boys because, although they don’t follow typical curriculum, and can’t skate with the class, and can’t tell anyone what their favourite toy means to them, they are providing everyone around them a sense of life without a voice and limited motor abilities. They are living life with COMPLETE joy. They demonstrate LOVE for EVERY. SINGLE. HUMAN. BEING!
This generation which we are raising will be the MOST tolerant yet!! They will understand and whole heartedly accept that WE ARE ALL SPECIAL!
I am so grateful for my family every single day. Even though there are great challenges, I know that I am surrounded by something special.
I know it is difficult to change the misconceptions and attitudes we have been raised with, but understand how simple the term is.
Please, I ask, ponder it for just a moment and share the word.

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So I recently wrote a guest blog post for Bloom, a special needs parenting blog affiliated with Holland Bloorview Kids Rehabilitation Hospital. Find it here
I am completely humbled and amazed at the number of people that found the link and read it! Today, again, a colleague at work stopped me in a lunch room to comment on how much she loved the post and forwarded it to everyone she knew! Like, HELLO?!? Me? You read about me?!
I absolutely don’t write for the public, I honestly do not. I have found a quiet passion and hobby in writing. I feel that it is a beautiful avenue to express myself, and get all of these extra ideas and thoughts out! I’m not sure if it’s a “mom” thing, but I feel like with the endless ‘To-Do’ lists, appointments, schedules, my brain can’t handle extra things floating around!!! And I don’t always have someone available to chat with! This is my conversation. Sad, I know, but lately I’m beginning to realize that I’m NOT having this conversation alone.
In a world where we feel so isolated sometimes, as parents of Special Needs kids, admittedly often self inflicted, it is nice to know that I am being heard.
We all have stories to tell, we can all learn from those around us.
I am blessed to have people interested in what I say, and I thank you all!
I am living life with gratitude.

There is something powerful about getting in front of a group of people and talking about yourself. To be completely open and honest, and let people know what your world is like.
I’ve recently had opportunity to do so on a few occasions, and I feel empowered!
How else can we change the perceptions of others without allowing them to view ours?
You see, I’m not professing that I’m doing things right in my life, but I’m definitely learning to understand and accept myself!
I was asked to speak to a parent group, one for parents often just coming into the slightly intimidating world of special needs parenting. A friend, a local Social Worker, emailed to ask if I would be interested in coming and speaking on the month’s topic “Stress and Coping”.
For those of you who know me well, know about my stress levels, and probably had a quiet chuckle that I was asked to do this particular topic. I am open about my stress and vent to those friends I am comfortable with, as we all should.
I think we all have varying levels of stress, in different parts of our lives, and we all cope differently to each of those stressors.
My philosophy with stress is , that to truly cope with it, is to be true and honest about it. We need to know that we can’t eliminate all stress, but we can cope. We don’t have to always cope gracefully or quietly, but we can do things to alleviate most stress.
Now what I told these parents are tidbits of wisdom that so many parents before me, had passed down to me. Maybe I’ll list them for you:
*don’t sweat the small stuff, really- you have bigger things to focus on!
*don’t lose sight of yourself, your child, your family. What others label you or your child as doesn’t have to change who you are, whether individually or a “unit”. Make your new normal!! ( and try to LOVE it)
*its ok to feel sad, stressed, angry, etc! We’re still human! Nothing will change that. Dwelling on any of those emotions will only keep us longer from the BEST emotion – HAPPINESS
*remember who you are as a couple , minus the kids. It’s so easy to fall into “team” mentality, and lose sight of why you decided to create this crazy family in the first place. Make the time for you as a couple!!!
*find some time for you, and just you. You may not get the time to go for a run, or go to a yoga class everyday, and you may not get that nap you want, but whatever fits in that moment, during that day, do it!! It may be enjoying that piece of chocolate you snuck when the kids weren’t looking, or sipping a glass of wine while cooking….
And finally…
BREATHE. Just remember to breathe.

A very wise friend told my husband and I that having a child with special needs would cause us to be in an endless cycle of grief. At first, we thought this to be morbid advice, as grief is understood by most people. We didn’t understand it, nor were we ready to understand it in the early part of our life with twins diagnosed with Periventricular Leukomalacia, causing Cerebral Palsy.
Years later, I completely understand. Today, I fell into an inconsolable fit of grief over a phone call from the school saying they ran out of diapers for the boys. I was at work, and had to sheepishly ask if it was okay that I step out, to buy my 6 year old twins diapers, because it was kind of an emergency. I fell into all the various stages of clinical grief, through the denial “maybe they don’t REALLY need them”, the anger, and the sadness. I went through a whole slew of emotions surrounding the fact that no one else close to me has to bring DIAPeRS to their kids school! No one else I know has to interrupt their day to run to the store! I WAS CRYING OVER DIAPERS!!! DIAPERS!!! For God’s sake, I bawled like a baby in the car from the store, to the school, and back to work.
This may not be the traditional grief that everyone is used to hearing about, but it is grief none the less.
I grieve almost everyday for something that my family doesn’t have, or can’t do, or something my daughter experiences as the sibling of 2 brothers with special needs. I grieve for the boys and their frustration of lack of communication. I grieve because this isn’t what I pictured as a little girl. This isn’t the family that I had envisioned in my head.
Sometimes us Special Needs parents look haggered, and emotionless, and tough. It’s because we have to put up that front very often because every fibre in our being wants to break down and cry.
Which I do VERY often, because I would rather people see the emotion, and not see me as a tough stone like mom.
So if nothing else, know that we all have struggles each and every day. A smile can do wonders, and a hug can heal!

A popular term or phrase in the last decade or so, has be “inclusion.”
To every single person, it can mean something different, and in every context as well. I don’t want to get into the technicalities or definitions of inclusion, but share perspective.
I recently had a conversation with a fellow PTA mom at my kids school. After an afternoon of telling our story ( we had never had a moment for her to ask her questions), she paused.
She asked, “Can I tell you something?”
I urged her to do so.
She told me that she was so thrilled and honoured to have her daughter in the same class as my boys and her other children in the school. She explained that my boys, and my family have given her family a great gift of understanding and compassion that no one else could teach. No teacher or no program could give her daughter that.
THIS is what inclusion is about in my books.
NOT my boys being a involved in something, BUT others being involved in my boys.
NOT my boys working themselves into a world they don’t fit into always, BUT others understanding and learning and taking something from THEIR evolving worlds.

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