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parenting
Providing for a family can be hard, and that can be even more true for parents with disabilities. However, a disability doesn't have to hinder you from earning an income. In fact, you can leverage your lived experience to find profitable side gigs that enable you to complete meaningful work on terms that work for you.
Nothing changes your life quite like becoming a parent. Suddenly, you are responsible for this tiny human who needs your love and care. Anyone who lives with a disability knows that adaptations are a part of life, and adapting for this next stage in life is no exception. From safety issues to daily tasks, now is the time to get your life and your home ready for this big change.
I realize that in many cases the idea of having special needs or caring for someone with special needs can make other people uncomfortable, and they struggle to know how to help when they want to. I understand that from the outside looking in, special needs can seem like a horrible burden to individuals and families.
My mind is whirling, my heart racing. He’s in bed now, hopefully sleeping. We spent the day going round and round, to the detriment of all. He just knows how to push my buttons sometimes. I’d like to think that he’s doing this to me deliberately, just so I can feel better about my poor responses, but I know he isn’t. I know he is trying to explore the big world, and sometimes, his emotions just get the better of him.
“It doesn’t help me if you hide your feelings.”
“I’m not hiding them, I just don’t know how to verbalize them.”
“I get that. I do. But you can’t just not talk about these things. It will eat you up inside.”
“Maybe. But I’m not nearly as scared for Isaac as you are right now. I don’t see surgery as elective. If he needs surgery at some point we will deal with it, but otherwise, for me, worrying while waiting isn’t going to help him.”
Since the Stay-at-Home order was put in place in Illinois back in March, Heather and I have been pondering what ‘next year’ would look like for our family in terms of schooling. Since that time, we have been weighing options and doing research and fretting endlessly about how to give our kids the best possible education while still living under the threat of COVID-19.
Within a week of getting the vitamin-D, Isaac’s speech had improved so dramatically that his speech therapist almost cried! I can’t begin to express the joy our family experienced celebrating this turning point with Isaac. He has worked so hard to get to this point, and although we still have a ways to go, we can see the end result approaching, and more importantly, he can too and it is motivating him to try even harder. These past few weeks are a testament to the long hours Heather spent doing speech homework with Isaac. Despite that, at our neuro’s suggestion, we still kept our appointment for the MRI.
No, I’m not bragging. I promise I have a point. I spent a lot of time on vacation thinking about parenting and life in general. As a dad, I spend so much of my time trying to do things for my family, that I don’t get much time to do things with my family. I tend to miss out on moments when I could connect with my kids because I am focused too much on other things. So, for the week of vacation, I make it my goal to spend every second I can with my family. And I learned some lessons on vacation that I’d like to share.
But you know what, that’s the beauty of having kids. I don’t understand a lot of the things they do. I’m not supposed to, at least not at first. They are going to teach me new things. They are going to do unpredictable things, and I’m going to grow as parent because of it. It’s ok for them to be jealous of petty, silly things. It’s ok that they complain that it’s “unfair” that the other boy has to go to therapy. Every day, they do something new, and I learn something new.
As a parent of children with special needs, I think that setbacks are often the most discouraging part of our children’s journeys. We can go for days and weeks and months watching them make progress and believing they have mastered a skill, and during these periods, we begin to convince ourselves that all of the challenges are behind us. But just like Icarus, I tend to fly too high, and allow myself too much complacency. When the setback occurs, I tumble.
