It Is Ok to Not Be Ok

It starts in July. I begin to think about the summer season turning to fall. Before I can even begin to enjoy the summer sun, I am reminded of our world, how it is different and what is to come. Every year as we enter school, I begin to feel a knot within my stomach. As I watch and parents begin talking about back-to-school shopping, I think back to what was, before a disability changed our world and recognize what is. That feeling, of being unsettled, wondering how I will meet the needs of my typically developing children and recognize the needs of my daughter who is disabled leaves me living a life fraught with anxiety and it is a constant reminder that our world, living with a child who is disabled sets me apart. As days pass by, into mid-September when people begin to post photos of their children returning to school, I wonder, "what if?" and "why me?". While I can now celebrate my friends' children (and I really do), I pause when people ask me what grade my daughter is in. 

"Grade?". None. I mean, third but really, she should be in fifth, but we held her back twice because, well autism and Covid and a move 500 miles from the only home she knew. I pause as my "should be fifth grade" nearly 10-year-old daughter, runs her hand along the arm of a woman curious as to my daughter's ability to understand and speak. I am grateful for her kindness, but I also fumble for the word to explain my daughter, her school and "what grade she is in".

Finally, something comes to my mind, I am not sure it's acceptable, but it is our reality. She is in extended content. Her curriculum is different. She is the child that comes in and out of the classroom as long as she isn't disturbing the "typical" environment. What most don't know is that we won't have a diploma and there will be no core classes or electives. In fact, our graduation or what is expected to be a graduation may just be a celebration of a certificate.

Our life, it looks, different.

School clothes? We have to set a protocol of what to wear and how to get dressed and we have to remind her to put on an undershirt and wear socks. This isn't the life I imagined for my nearly 10-year-old child, her siblings or myself in fact. 

It isn't to say there is no measurable growth. My daughter can answer questions now, which once was nearly impossible and she can participate in cheer, while it is specifically designed for individuals with special needs, but our journey, this life, its different and for so long I tried not to mourn and that, this life, the one I never imagined or dreamed of wasn't hard.

When my daughter was diagnosed with autism, I tried to pretend I didn't feel anything. In fact, I heard from a number of people "if anyone can do this, you can". Within time as friends stopped calling, stopped texting and stopped inviting, I wondered, could I do this? Forever? I began to feel numb in life and not recognize that what was welling up within my body mourning the "normal" was okay.  If you ask anyone, parents of children with additional needs are "special people", we frequently get told that "God chose us for this" but the reality is that we are just like every other person and without support the extra is too much. 

It's obvious with the staggering divorce rates among individuals who are raising children with special needs. It isn't that you no longer love the person whom you fell in love with, but reality is, the extra is too much.

Each day, we wade through life to the best of our ability with the weight of a child who needs more, who has to have more who in fact may be more and acknowledging that, it is okay.

I don't expect my friends, sending children who are typically abled to understand. In fact, until I had a child who needed significant support, I didn't understand. While our journey is different, I continue to watch and celebrate alongside you, my friend, for I want the best for you. 

I do however ask, that when you see me, you recognize while I celebrate for you there is a piece of me wishes that my child was typical too! 

We are told not to feel, not to mourn, because that means that we wouldn't have or want the child we do but reality is, it's okay. To mourn. To want a life that is not as challenging for the child we are working to raise. 

No person goes into pregnancy, hoping to have a child with special needs and if I were to take back the words I used to utter "we pray for healthy but if we can't have healthy, we pray for a community that understands", I would. Reality is, having a child who is different, physically, intellectually or emotionally disabled isn't easy and it is something challenging to face.

I want parents to know, it's okay, to feel, to lament, to mourn. We adore and love the children we have but it's okay, to not be okay.