I wish I could tell when things were going to get hard. Like, as if I had a radar system and I could predict what the next day or even few hours would be like (I’m a weather nerd. LOVE looking at radar!). However, my experience with my boys is that I’ll never have that luxury. Of course, I’ll know typical things that will set them off – running out of cookies, iPad battery dying, etc- but good days and bad days I cannot predict.
I woke up to this. I texted my hubby “ isn’t he just the sweetest thing?” Little did I know a few hours later…
Today, is a bad day.
I’ve been yelled at, the target of anything that can be thrown. I’ve been a pillow, a comforter and I’ve been the thing that takes all the punishment.
I know that one of the main triggers is boredom and lack of routine. Covid retrictions have us locked down. Even though parks and facilities are open with restrictions, these are not worth the effort for me. I can’t contain my children enough to go to a park safely, and they won’t wear masks long enough for me to feel good to go to a store. We don’t NEED to go to these places. We go to camp and we go to the pool, but we’re bored. They are sick of me and I am sick of them.
Friends try to comfort me and tell me I need help. Well, yes, that would be nice but when? I can’t predict when I’ll need help.
Living with these guys is not so predictable. Most days are great! We have fun, we listen to music, we eat snacks, we play…. others…. I sit crying on the couch because I can’t figure out what’s wrong and why one is yelling and throwing things at me.
I’m tired. I’ve cried A LOT.
I don’t necessarily want help.
Most days I want to figure out what’s happening, solve it, eat cookies and take a nice nap.
I want a lot of things I know can’t happen right now. I try to teach them the language to tell me what’s wrong. I try to reasons and rationalize, I try to build skill within them and myself.
Bottom line I guess is that part of me wants to figure it all out like a “normal mom”. I love suggestions and lovely recommendations from kind hearted friends but going for a walk or taking time for myself isn’t possible right now (covid nonsense). It’s not easy. I’ll get through it. I’ll buy stock in a liquor company. Whatever.
So the world has been in “quarantine” “self isolation” “social distancing” mode for 60 days (give or take depending on where you live)…
I have been one of the lucky ones who’s sole job has been to “stay home, stay safe”. I say lucky, because I don’t need to worry about going out to work, need to remember my mask, find hand sanitizer, worry about what my place of employment may be exposing me to, or me to them. I am extremely thankful for all of our essential workers from frontline medical staff, support workers, food service workers, and clerks at various essential shops.
My “job” has changed dramatically however in that all of my roles have collided into one. Where I used to be able to chunk my time and slot myself into my various roles – 6-8 am, Mommy; 8-4 CDA; 4-9 Mommy; 9- bed Anna/ wife… they are all one now… plus the additional “educator” role. I have been asked to maintain this idea of “continuous learning” for my children, specifically my two Special Needs guys. See this idea of continuous learning as explained by one of my favourite Special Needs Advocates Shelley Moore here
What I realized quickly was that even though essentially I AM all of these, I could not follow through as these 3 people at once. It was EXHAUSTING. I was creating an emotionally depleted version of myself. I was not myself, even a version of myself I could live with during this crisis.
I realized that just like the rest of our lives as parents, I would need to break life down into smaller tasks. I would need to prioritize one thing from each role every day and take it from there. Set one goal, and work up. I feel like we’re working into a routine now.
Basic goals started with – let’s ALL get dressed before noon. Everyone needs to get dressed and have meals at somewhat normal times. I do the bulk of my “work” in the morning. Meetings, materials, emails, phone calls all try to be scheduled in the mornings when a) it’s still cold out b) the kids are just groggier and lazier in the morning. I literally plunk them in front of the TV or iPads to give me time to fulfill that role. The afternoon is more family focussed. I try to incorporate the boys IEP learning goals into real life experiences. Right now they are learning the concept of same and different, number sense, and senses. We have been gardening, bird watching and playing outside. All with goals built in. Plus some fun learning materials we’ve made with the help of our fabulous school team.
Our days admittedly go by very quickly, which I’m thankful for. After dinner, we spend true family time together by going for our family walk around our loop. We have met many of our neighbours who we have made promises to socialize properly with when allowed to do so! It helps when you take your “in character” children …
I’ve learned that we lived a pretty isolated lifestyle prior to this pandemic. I don’t want to say we lived in “crisis” everyday, but similar to this current crisis, because we have always lived day to day, moment to moment. We have appreciated the good,the bad,the ugly and the blissful all along the way.
I don’t like to focus on the things we have missed out on or the things we will miss out on. Namely family vacation, 40th Birthday celebrations, anniversaries, retirements, but the one that hurts me most is my girl’s 8th grade year. No grad, no grad trip, no pretty dress, no chance at valedictorian ( which she was working so hard for)… it breaks my heart, and yet it’s another life lesson and discussion to teach my daughter strength, understanding and worldliness. (But I still cry at night)
The Pandemic isolation brings on a roller coaster of emotions which I have really tuned into and how I need to address them. I know when I need sunshine, a nap, a walk and lets face it … wine! Knowing and understanding and having the courage to have emotional conversations with Jeff (hubby extraordinaire), Family, neighbour, friends… I’ve realized we all feel about the same. We’re ALL going through the same thing.
It helps knowing that this is a Global Pandemic and MOST people are in the same boat as me, and I am thankful that our community is relatively safe.
We’ve survived 60 days. We’ve accomplished tasks and projects that were forgotten, we’ve taken up new hobbies.. we’ve baked and cooked as a family. There are so many positives!!
What I’ve known all along and I truly appreciate is my wine time. If you’re not a wine drinker, you may not understand. Those of you who are, will. It’s something in my day JUST FOR ME. I enjoy that time, sip by sip. I sometimes reflect, I sometimes don’t.
Whatever happens in the next few months or longer, I know that the world was meant to experience this. We were all told at the same time to STOP. Take time. Heal. Rest. Learn.
I’ve shared the good, the bad, the funny and the challenging.
Jeff and I have always lived life first and dealt with the “diagnoses” as a secondary. If you don’t quite get this, our boys have a bunch of different labels – twin, Cerebral Palsy, Intellectual Disability, Language issues, non verbal, sensory issues, smatterings of this and smatterings of that. We have always chosen to recognize that the boys are kids first, and dealt with adjusting our parenting as needed.
Some weeks we feel pretty average. Maybe others don’t see us the same way, but that’s ok.
This week our challenges were spotlighted. It was as if we walked around with blinking lights. BUT I am so thankful for the community we belong to.
After a routine dental check up, we discovered that Drew had a large abscess and baby molar that needed to come out. (Can we say parenting FAIL!)
Let’s call Drew a “reluctant” patient (ie. he’s a pain in the ass in the dental chair.)Plus on top of all of his other needs we needed to think out a solid game plan. With some conversations between dentists, between us and dentist and us at home, weighing different possibilities and potentials, we decided that in office would be the quickest solution, albeit a more traumatic one.
Long story short, Momma pulled on her brave face, and helped the dental team restrain Drew to get that tooth out. I cannot say enough about the dental office we are blessed to have! What an amazing experience where everyone knew exactly what they needed to do for Drew.
Of course, after a procedure like that, the Dentist recommended cool soft foods ( like ice cream!) so off we went to the Grocery!!!
Now, some people may get a chuckle when I say this next piece. I used to struggle at the store with the boys and groceries. Until… one very brave cart handler came up to me in Walmart… “Miss… why don’t you use the Caroline Cart?”
At first this took me as a surprise. We’re not THAT special needs! Yes, I realize this is a stupid thought. For someone who fights for inclusion and accessibility, this is a REALLY stupid thing to say.
So, another long story short, I was very happy to see that my grocery store also had a Caroline Cart and Drew and my groceries were happy.
I don’t often go to the grocery store with kids. Okay okay, I NEVER go with them. So when all of my regular cashiers saw me with a kid AND the Caroline cart, they were full of smiles for Drew.
I’m so thankful for our great community of Sault Ste Marie. I’m grateful for finding a dental office that is so amazing for our family, and I’m thankful for businesses recognizing what can make their customers lives easier.
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!
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!
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.
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.
Sometimes you have to dance in the rain 