With June's first birthday approaching, I wanted to share a little bit what it has been like to be mom to a child with extra needs. Don't worry, her birthday post is coming in just a few days!
This post is intended to be educational for those who might want to learn. I don't intend to belittle or insult anyone. :) Remember, just a year ago, I was also inexperienced in this topic. Additionally, this a post is not meant to make you feel sorry for us. Yes, there is a huge learning curve, but we are happy to handle every part of June's care.
I've learned that people have extremely limited knowledge about people with special needs. Before June, I had almost no understanding of the difficulties of daily life. Medical equipment, diagnoses, various specialty doctors, and complicated terminology are just a few things I've been schooled on since June was born.
People are afraid of things that are different. Having a child with difficulties and some physical markers that make her stand out should make me more open to others, right? Nope. I am still uncomfortable around adults and children in wheelchairs. I don't know what to say to them. I feel nervous that I'll make them uncomfortable. It's okay to be honest about this. It is inevitable that people will feel uncomfortable around June as she gets older. As her mom, it is my job to allay their fears in dealing with my child with special needs.
One area where resources are lacking is the availability of toys for babies and children with developmental disabilities. Progress is being made, but I still believe there is much to be desired in this area. Fortunately, we have specialists and therapists who help June maximize the use of the toys we already have.
One burden I wouldn't wish on anyone is the paperwork. There is SO MUCH paperwork. It's like doing the equivalent of federal and state taxes. Every week. I call doctors daily. Medical billing offices are always reaching out to us about insurance cards, balances due, and payment plans. If I had a 3 wishes from a genie, one of them would be to have a June secretary. (The first and second would be to take away June's troubles and to move to Disney World.)
Being the mom of a special needs kiddo is extremely isolating. My friends are so sweet. They try to understand. They are supportive. Our families are AMAZING and provide help whenever needed. But there is a piece to this puzzle I can't quite make them understand. There is a sorrow and a joy involved in raising June. Many dreams I once had for my children are gone and it is up to us as her parents to create new dreams especially for her.
For moms of special needs kids, we might need a little bit more grace. We may cancel on playdates and family functions regularly due to sensitive issues. I never thought I'd be that mom. "Press on and drag the kid along" was my plan. Well, my plans have changed and I have one very sweet little princess to thank for that.