“Creating Capacity” -Janet

When I was faced with the CTD diagnosis of my son, who is now 10, I felt a huge, monstrous, feeling of overwhelming and it never went away. None of this is his fault, but the responsibility, the volume of things that needed to be taught, the learning, the management of appointments, the therapy, medication, and paperwork was a lot to handle and it ultimately fell on my lap as his primary caregiver.

I can confidently say that the last decade of my life has been spent feeling inadequate to help my son and completely overwhelmed by the sheer volume of his needs. I rarely talk about this with others. It is what it is. I’m likely not the only special needs parent to feel this way but I did feel trapped by these feelings and I had no clear mental path on how to change this.

So… why am I writing about this? Because I have found something that has helped me and it is my hope if it can resonate with another parent and can create a change.

I’ve noticed a clear pattern. My priorities were very much absorbed managing all the stuff I owned. I, much like every other parent, was constantly was under the obligation of sorting, cleaning, and organizing everything in my home. I would get angry at my kids when they created a mess when I simply couldn’t realize that the amount of stuff was too much for them to manage. The items in our home should be easily and simply managed by ourselves and our family members. When it isn’t, it becomes a problem.

I spent most of my time in the frustrating state of having to manage all of our stuff. And with that, being overwhelmed in my household responsibilities, I felt completely incapable of doing all of the extra tasks that are handed to you when you become a special needs parent. I don’t need to tell you that being a parent in general is difficult, but being a special needs parent is a whole different realm. It can feel overwhelming to some. I’ve been there, and my social worker can attest to that fact. I’m not trying to joke around here, I would get mad at God for lending me to this task of parenting my son that I felt completely inadequate to do. I’ve spent days wondering how I got handed this level of responsibility, feeling like I’m being suffocated by the weight of it. But, things have changed. It’s still a lot to handle, but since I’ve eliminated ONE THING from my life, things are now different. Do you want to know what that is?

Excess.

For the last year, I have been deliberately removing every excess item from my life and ultimately my responsibility. What has been accomplished has been a liberating, purposeful life, and not chained down and feeling obligated to my physical possessions. Since I have removed so much excess that was absorbing my energy, I now have incredibly increased my available capacity. That capacity has affected many areas of my life. Before unloading our excess items, I couldn’t even mentally narrow down my son’s needs. But, with simplifying our home it has created more mental space which has allowed me to see his areas of need, create ideas, and follow through with them. I have fine-tuned a home learning program to work on after school and on weekends in our… *gasp* spare time.

Getting on a simpler path in your home will allow you more capacity to manage the needs of a person with a Cerebral Creatine Deficiency Syndromes (CCDS). My son has Creatine Transporter Deficiency (CTD) and Autism. His needs are very high. Generally, for him to function in our world is a difficult task. It doesn’t come naturally or easily. So, imagine a child trying to learn social behaviors in a cluttered, confusing world. A world where nothing had space. We were putting all of these expectations on our son to learn, yet, none on ourselves to create a simplified, minimalist environment. An environment that promotes consistency to form meaningful habits that are sustainable which carry into adulthood.

When my son was diagnosed, the emphasis was on creating a “new normal.” Our home life was swerving wildly off the beaten path but we were given a “Welcome to Holland” consolation letter. What we should have been told was, “you’re about to feel like Atlas.”

You need to simplify and minimize your life drastically. MAKE THIS A PRIORITY. Take drastic measures to accomplish this. Otherwise, you won’t be able to manage the constant influx of care needed for your special needs child. That needs to be the emphasis when a parent is initially faced with a diagnosis of a child.

Simplify your life, or drown in the excess.

I want to emphasize the importance of creating a simplified existence for our special needs kiddos. Their world is already difficult to manage. The more we can simplify and create an environment that is understood, it will be more easily managed. Free from confusing and unnecessary clutter, allowing them to have more success in adulthood. As parents, that is the ultimate goal, to help them be more independent into adulthood. Imagine an environment that is catered to their needs, highly simplified, routine-based, only containing the items they need to function daily. This is what will set them up for greater overall success independently. Pare down the items they have to manage and growth will happen. So, the concept of minimalism lends itself greatly to parents of special needs children. It truly is the only way we can create a highly simplified environment for them to learn and thrive.

Minimalism.

Minimalism should be our goal.

Far away from initiating therapy,  “Welcome to Holland,” or anything else. Get rid of the excess, so you have space and capacity to manage the weight and volume as a special needs parent. This consequence that came from simplifying our home has been a complete surprise to me.

In the last decade, I was searching for time management skills, trying different ways to organize, how to effectively manage my home life, responsibilities, and my kids. I had never associated my inability to effectively manage those with having too much stuff because I thought that if I couldn’t keep my house together, I was unorganized. So, I would try to learn different organizational skills, which ultimately never worked. But, with reducing the number of physical items in our home, I don’t need to organize our things. They manage themselves. I can immediately see when something isn’t in its home, and surprisingly, my son has as well. Whereas before, I wouldn’t notice if something was on the ground because there was stuff everywhere. And honestly, we didn’t even have that bad of a clutter problem, but there is always room for less.

Had I thought about, or realized this concept of family minimalism sooner, I could have had a peaceful home and a more organized mental state. I deeply regret not learning this when I first became a parent. So… if you are a special needs parent and feel overwhelmed in any way. It could be cleaning, laundry, behavior, education, cooking, or therapy… whatever it is, I just want to encourage you to deeply reduce the inventory in your home.

That’s where you’ll find the gem, the pearl that was buried under everything.

The capacity.

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