I never know how much to share on Facebook or this blog about our life as a special needs family. I am pretty open about the highs and lows, and I try to highlight the highs. When I point out the hard things or the different aspects of our life it isn't because I want people to feel bad for us. Our life is really good. My children don't fight. I witness miracles in the ordinary. We celebrate the mundane.
But I point out our differences, our struggles and our sadness to promote understanding, to educate, and to start conversations that might lead to positive changes.
It is hard to still be working on skills that other kindergarteners mastered years ago. Our potty training journey has not been typical, so commiserating in those conversations with friends is slightly awkward. Meltdowns have decreased, but there are still things, often unknown, which can cause frustration,anxiety or sadness for G. And we are just now really beginning to see how much life is different not only for our son with CP and autism, but also for our neurotypical som as well. My child with special needs has many adult "buddies," but few peer interactions. It is hard for kids his age to want to talk to him because of their age and his needs. The Hubs and I will likely never have an empty nest, so whe friends joke about counting down till their kids leave for college it is hard to laugh.
This doesn't mean I want our friends to censor their conversations, walk on eggshells or force their children to be friends with mine, or even make sure that G is included in every activity. He can't do every activity due to limitations or lack of interest. We have been so fortunate to have friends invite us to birthday parties (we can't always attend), to greet him with a smile and hello and patiently wait for a response, and a church that is willing to make accomodations in classes and activities.
I share what our life is like because I believe we are meant to bear one another's burdens. My son is not a burden, he is a joy and delight. But the obstacles and issues we face can be burdensome. We were not created to do life alone. I share because awhile ago a dear person ahead of me in this autism journey blogged about their life - not just autism but the regular stuff, too. It was such an encouragement to read even before I was an autism mom, and especially after I became one. Maybe my sharing can encourage someone just starting on this path. We all need encouragement and prayer and support during different seasons. And the amazing thing about sharing the needs that we have is that we also get to share the celebration of the milestones and miracles we see.
Our family most likely doesn't look like most. We laugh, we cry, we go to a lot of appointments, we learn, we advocate, we play Trouble almost every night. We are exactly like you, yet we are nothing like you. We want to be noticed and yet we want to blend in. We long for God to show up in big ways, and we covet your prayers for Him to keep faithfully answering the smaller ones, the ones we do not even know how to pray yet.
"Jesus answered, 'This happened so that the power of God could be seen in him.'" John 9:3 NLT