Caregiving, Disability

August 17, 2021

My Kids Were Little Once Too

Willowjak Boys
I'm WillowjakMama!

My blog started as a way to document my journey to wellness, but turned into a place to be inspired by others through our collective messy & authentic stories. Now it's my favourite place to be.

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Maintaining the Positive Mindset in Parenting

It’s so easy to feel frustrated with the progress you want to see in your life. As a mama to kids with extraordinary needs, it’s easy to beat yourself up for not seeing the results you had hoped to see in your kids after the intensity of therapy and all the other ‘extra’ stuff we do with our kiddos. I’m grateful that I blogged for the first ten years of the boys’ lives because I’ve got the best journal to look back on when I’m feeling this way. Don’t get me wrong, I’m immensely proud of where my boys are at developmentally and for the skills and the gifts that they bring to the table. But as parents, I’m sure we all have things we had hoped our kids would have on their report card or resume when they hit the adulthood milestone. There’s a niggle of loss or sadness when you feel that maybe, just maybe, if YOU had worked a little harder, they could have achieved them. It’s a rabbit hole you don’t want to go down. So instead, I buried myself in the nostalgic blog read rabbit hole instead, in search of the joy to maintain the positive mindset in parenting these kids of mine.

So let me share with you.

Flashback to Boys, July 2009

An update on the boys:

Owen: Owen is in a really good place right now. Since March he has been with a new agency for his behavioural intervention therapy program. It was a rough start, but very soon we could see the benefits of the change. After years of ABA home therapy, Owen was bored. I personally think he was no longer being challenged and was slipping through the cracks. Because he can be so complacent, quiet and easy going, he can be easily overlooked and forgotten. Living in Will’s boisterous shadow is not easy and in the final months with his old agency, my focus was definitely more on Will and it was difficult to garner the focus and energy required to make Owen’s program just as meaningful.

Until we found his new program.

It’s all about Owen now. Parental involvement is welcomed but not demanded, so programs can move forward with or without me. They understand that we have twins with equally demanding needs, but their one and only focus is Owen so decisions are always made in his best interest. They have freedoms in operating his program that allow him to work outside of our home and everyday is something new for him. He regularly travels to their center, to the parks, to the hair dresser, etc. where he gets to generalize his skills and meet with other kids. During the summer he will average two outings a week- to the zoo, to the Calgary Stampede, a ranch, sailing on the reservoir, mini golf, bowling, swimming at the lake and the list goes on. He is a happy boy who recognizes that he is important and is eager to work for the great rewards. Let it be said that the rewards are not necessarily all the big trips, but in his own personal pride at accomplishing his new goals. It really is exciting to watch him right now. Whether it’s discovering that he’s got a wicked accuracy in kicking a soccer ball, or watching him discover his independence in bowling (with none of my help!).. Owen is definitely a kid who wants to learn and experience more.

Owen with his Gamma

Owen is registered to attend a private school for autism in the fall. We are really excited for him and anxious to see how he does with the transition to an all day school program. It is an ABA based program and he will work in a classroom with a 1:1 aide. A couple of weeks ago we went to a picnic and met all of his new teachers and classmates and are now really excited for him to start this new chapter in his life.

Jake: My baby has been in Toronto with his Grandma for the past two weeks. We have been separated before, but he has always been with at least one of us (Jonathan or I) in the same city. It has been a tough separation and for the first few days I seriously carried a sick feeling in my stomach and all thoughts were in Toronto with him. But I also must say that the quiet in our household has been nice. Jake finished off his school year with an amazing report card and a great attitude. What a difference a year makes being in a school where his teacher understands and respects him and his interests and skills in art are encouraged and celebrated. Jake has come through a rough few years with an earned maturity that you don’t often see with eight year olds. He’s still got a sassy mouth and he challenges authority and often finds that his sarcasm gets him into trouble (hmmm… does this sound like Stacey and Stephanie I wonder?), but he is truly a compassionate, considerate and funny kid who I can’t wait to know as an adult. He will make a great friend or partner to someone and the world better be ready for him, because he can accomplish anything!

May and June were very hectic for our Jeek. His Irish Dancing has come such a long way. He has a true talent and wowed us all at his Dance Recital that finished off his first competitive year. I really look forward to seeing where this takes him and if he chooses to continue. He clearly has a passion for it.

Jake on his 8th birthday

Will: Oh, Willy. Will’s current trials and tribulations deserve a blog all of their own. It is so difficult to sum up what is going on with him. I think it’s easiest to say that I think Will is just pissed off. It is as if he has just hit his limit. I have put a lot of thought into what is behind his current state of mind and it’s not unreasonable to assume that he is probably just sick and tired of being told what to do (as any child would be). But these kids have been in intensive therapy for over four years. Four years of working hundreds of times harder than the average career-adult at a level of intensity that not many of us have to endure. Working to understand what is asked of him, working to have his needs and thoughts expressed and working to constantly try and regulate his difficult outbursts and impulses. Something changed with Will this year and I am not just remarking upon his new skills and accomplishments. But I feel that I now have a child who understands his place in the world and I know that he wants to be heard and demands that we pay him the respect of explaining things to him. You cannot take for granted that just because he can’t talk, he doesn’t understand. Gone are the days of babyhood when you could tell his embarrassing poop stories with him in the room and know that he didn’t have a clue about what you were saying. I think one of Will’s problems is that not everyone is of this understanding of Will. Decisions are made without his consultation, choices are made for him and hands take his to steamroll him from place to place without explanation. Of course this is a natural treatment of children from time to time and adults make decisions for their kids all the time without their approval. But Will is beginning to understand that he has a mind of his own and he wants people to respect it.

Will (in his spider hat) with his aide, Tara on their last day of preschool together

Here is a run of the mill example. Will came to hate going to school at the end of the year, as most kids do with the warming temperatures, the allure of his precious dandelions in every patch of grass on the drive to school and the memory of his weekend of freedom and waterslides from the days before. Tantrums would ensue in the hallway to the classroom, with kicking, screaming and all efforts to head back out to the car. A year ago, I would have gone through our ABA bag of tricks and used such things as First…Then, Reward Systems, or simply ignoring the tantrum, making my demand (of him getting up off the floor and going through the door) and handling him through the process of moving forward. Now, I’m not willing to do that. I still see the benefits of some of these strategies but I believe that Will deserves to have a conversation around it, just as Jake would. We both know that in the end, Will is going to school. But I know that if I kneel down to his level and help him to express his feelings (you are feeling mad, or sad), showing him a schedule that shows that after school he will be able to do all the things he is looking forward to, or simply talking through it (it’s time to go to school. It’s going to be a fun day, you’re going to do some crafts, you’ll get to play outside, etc.), he might still tantrum, but I believe that he deserves this kind of conversation and he deserves to be respected as a little person who has a voice. Unfortunately, I’m not sure that the rest of the world has this new appreciation for Will’s role in the situation and I think it has contributed to his frustration. While it may not be the sole reason for his current heightened level of stress, I know that it is now shaping my new way of approaching my son.

Will’s next school year will also bring him to the same private school that Owen will be attending. I see his placement here more as a stepping stone or ‘transitionary year’ as we try to build and develop all the skills that he gained in his preschool years, so that he will be prepared for more of an inclusive setting in his next school year. I will probably discuss this further in another post. We decided to give Will the summer off from therapy to let him have a break. We have our own family goals and initiatives that focus a lot on community and play and to really tackle some of Will’s underlying medical and psychological challenges that we believe also contribute to some of his distress. There are big things in Will’s future and this summer will be our time to lead him in that direction.

As for Jonathan and I, we will continue to keep on keeping on. I am excited about our future, while always worried at the same time. But as life continues to throw us curveballs, it also throws us little miracles along the way that remind me that someone has always been on our side to help us make the best decisions for our kids and I believe that this good fortune will continue. Always keeping the faith..


Post-script

That period in our lives was definitely a transitionary one from full-time therapy to school. Ironically, my niece Maeve is about to experience this same thing right now as she prepares to go to school. I hope that Steph will share the experience with us here on the blog. Most importantly, this walk down memory lane puts me right back to that period of our lives and I remember riding that emotional roller coaster that was entirely correlated with how my kids were adjusting to the choices I was making for them. And looking back, I’m proud of the decisions I made back then. The key was always to maintain the positive mindset in parenting. To any parents reading this whose kids are in that stage.. the angst is real, so real. But I promise that there’s hope for the angst muscle to relax a little as time goes on. It will happen. You’ve got this. Love to you!

Stacey aka WillowjakMama

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Hi, I'm Stacey.
Welcome to the
Willowjak Blog 

My blog started as a way to document my journey to wellness, but turned into a place to be inspired by others through our collective messy & authentic stories. We chat about themes that are often ignored and voices that aren't often given a chance at the mic. Now it's my favourite place to be. 

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