Autism Speaks

Click Here to see an amazing movie about autism. It will open your eyes to the lives of those who care for children with disabilities. I am so lucky, M is mostly self-sufficient.

When one has a child, that naturally comes with hopes, dreams and expectations. Whether it will happen or not, we dream about that baby girl's walk down the aisle on her wedding day, dressing her for prom, cheering her on before her first job interview. We think about our little boy's sports, band concerts, what will he be when he grows up?

When one has a child with a disability, those dreams are replaced by hopes that he or she will walk, talk or feed themselves. We read others' Christmas letters and hear all about how Johnny is captain of the football team. We consider that they might not understand our excitement for our child's final ability to control their bladder at age 12, or reaching the bare minimum of grade level performance on a standardized test, or even going to Target without a meltdown. For us, those are causes to celebrate.

It's good that we don't take those things for granted. Nobody should, really. But they do. And because our situation is not the norm, it is such an incredible struggle. As parents and people, we have dreams for OUR lives as well as our children's lives. Yes, we want them to succeed, and we'll be there to do whatever it takes to help them succeed, but for some parents it means abandoning their own dreams and desires. That's NOT what we "signed up for" when we became parents. Or at least that's not what we thought we signed up for.

Yes, we signed up for whatever it demands. But who rubs their very pregnant tummy and thinks about the possiblity that their baby will be developmentally delayed and will require constant supervision, requiring them to choose between working and staying home permanently to care for their child? Who considers the birth of their baby to be the end of their own lives as they know it? Yes, we put our immediate dreams on hold, and yes our kids come first. But what if your life is never yours again? What if your sole purpose in life is to be your child's caregiver? Not just a cheerleader, a guide, an encourager, a teacher-- a diaper-changer for life, a seeing-eye dog, sleeping with one eye open because your child can unlock doors and run away in the night.

If that's the case, you grieve. You grieve for the child you were supposed to have. You grieve for the life you were supposed to have. You have to. If you don't, you aren't human. Your grief has to propel you into doing superhuman things, but if you don't ever stop to say, "THIS SUCKS AND IT'S NOT FAIR" then you are not only doing yourself a disservice, but doing your child the same.

There's no answer. There's not a judgment. It is what it is. This little video will give you a glimpse of what life looks like when it's not your own.