Families of children with special needs are no strangers to isolation. We live our lives at a social distance, never quite fitting in, sacrificing our own wants and needs for those of our children long past the age when they should be spreading their wings and starting lives of their own. We are used to living with uncertainty, facing a different kind of normal, to not knowing how things are going to turn out or when, or if, they will change. Even so, parenting a child with a disability in the midst of a pandemic is not something we were prepared for. It is a level of extreme beyond what is normal, even for us.
The challenges we face daily are greater now than ever. Our children are missing out on school and therapies and services vital to their daily functioning and wellbeing. Providing for special diets, getting medications, and finding necessary medical supplies is harder than usual. Caregivers are pushed to their limits as respite services are not readily available. Routines are disrupted, and for my daughter with autism, routines are everything.
April is Autism Awareness Month. Those of us living with autism are aware 24/7/365, but this month provides a good opportunity to spread awareness to others. The hard part is knowing where to begin. There’s really more to share than can fit in one short article or an entire month of Facebook posts. Every family’s situation is unique and if you ask another mom, you’d likely hear a different story. But for me, here are the top 5 things I wish people knew about raising a child with special needs:
- We love our kids. Unconditionally, fiercely, deeply. We don’t want to change them (though we’d like to take away some of their toughest challenges). A lot of people say they don’t know how we do what we do. Loving our children doesn’t make us special. It makes us parents, just like any other parent. Trust me, if your child had special needs you would love her in exactly the same way.
- We are tired. Exhausted really. All the time. Our kids often don’t sleep. They need us, for everything, all the time, forever. There are countless appointments and therapies. We don’t have a lot of people volunteering to watch our children overnight so we can take a break. And even if we did, we aren’t sure we could handle the worry. It can be exhausting and overwhelming and lonely at times.
- We are so proud of our children. They have worked hard to achieve milestones that most people take for granted. Every “small” step is a victory to be cherished and celebrated.
- We live our lives on high alert. We worry about everything. All the time. Are we doing enough? To medicate or not to medicate? What if she is hurt and can’t tell me? What if I get sick? What will happen when I can’t take care of her anymore? Who will know what she needs? How will she understand? Can she handle going out in public today? Will there be a meltdown? Can I keep her safe? Will people be kind? It never stops.
- We have hope. And joy. And dreams for our children’s future. They might be different than other families, but they are just as big.
We are ordinary people who are doing whatever it takes in order to meet of the needs of our extraordinary children. We don’t want or need attention, or pity, or accolades. We are just doing what families do. What we do want and need desperately, is for people to come a long side us as we raise our children. This is hard work and it takes a village. We are often too busy, too tired, or too accustomed to going it alone to admit when we need help.
Many of us have children who will need lifelong care. We are keenly aware of our own mortality and it is crucial to us that people see our children, love our children, believe in our children, respect our children, and fight for our children’s future.
There’s so much that I could say about my sweet girl and how amazing she is. To know her is to love her, and I know every parent who is raising a child with special needs feels the same way. Our children are first and foremost, children. They are not their disability. To truly become aware, you have to get to know them. Someday when our world returns to its new normal, I hope that you will. I promise you will be blessed beyond measure.
This blog was beautifully written by Jennifer Kiesling. Jennifer has been a Special Education teacher for 21 years. She has taught in three different states: Ohio, Florida, and now Kentucky. She is an amazing mother to two daughters, Brenna and Junie. During April she shares Facebook posts with her friends in order for us to get a glimpse into her world with Junie. Junie is 13 years old, and she has autism. This blog was dedicated to not just offer awareness, but to start understanding in order for acceptance to follow.