I was called, "Mommy" today. It was unprompted, very clearly, and because he wanted something. This is the first time, in five and a half years, I can ever remember him saying the word mommy.My heart feels like it has wings!
Oh, and he said it like six times while he took my hand and led me to where the plug had come out of the outlet.
As parents of kids with special needs, we have to guide them down a path that is sometimes just as new and scary to us. We have to put aside our own fears, take their hand, and lead them on a journey that we didn't foresee or plan for. We spent so much time dreaming of how their "normal" life would be, and all of the activities we would teach them to enjoy or experience with them. Our reality is that we have to deal with the loss of what we'd hoped for and at the very same time help them navigate a life filled with pain, frustration, tests, doctors, therapists, medical procedures, and surgeries. We have to teach them that we care, and this can be a huge task with a very handicapped child or one with limited communication. It's a long process, learning to face our own worst fears and helping them to be brave when we feel anything but. Some days are black bottomless pits of despair. Thankfully, and by the grace of God and the prayers of others, we are able to keep going for our angels. It only takes a good report from a doctor or therapist or seeing the slightest improvement to have us soaring in the clouds once again!
Many special needs kids have extra special siblings who daily go above and beyond to help out, protect, and care for their brother or sister. Many of them get little attention or praise for all their efforts because mom and dad are simply too exhausted and busy to notice all the little things they do. These "normal" kids selflessly put the needs of their special sibling(s) above theirs and never complain that so much money, time, and attention go to help the kid next to them, while their own needs must come second. Our daughter Lauren is such a kid. She was born into a family with two older sisters each with special needs and into their world of therapists, specialists, counselors, doctors, etc... Then, when she was just 18 months old, her brother was born. It was apparent from the beginning that he was different from other children and needed lots of round the clock attention and care, since he almost never slept and cried for hours on end. When he was diagnosed with autism at 23 months she was officially the only typical kid in our house, and that wasn't in her favor. I was used to mothering in unconventional ways and dealing with one crisis after another. What I wasn't used to was a kid who didn't need to be told everything fifteen times in a very gentle voice and with visual aides. I've had to learn to listen to her when she stops me and simply says, "I get it, Mom. You only have to tell me once." She loves her siblings with all her heart. She faithfully goes with me on twelve hour trips every other weekend to visit our daughter who lives in a hospital four hours away. I've seen her many times grab her brother when he was headed toward danger and hang on for dear life while screaming for help as he dragged her toward a street. She's such a blessing to all of us, but she's made it her mission to teach and help her brother. She stands bravely by in the grocery store as he has meltdowns, grabbing my purse, his shoes, handling the cart, never embarrassed, she handles it like a six year old pro. I thank God for sending us this precious little girl who has such a loving and giving heart.
It was a BEAUTIFUL day for a bike ride. I stopped and picked a few weeds for Brendon to fiddle with while he rode. Before long I heard him saying, "More fowers!" So of course I stopped and got him more "fowers" every time he said it. Our sweet dog Pepper goes every step of the way whenever we go riding. She's not about to let Brendon out of her sight! :)
Brendon loves to experience things from head to toe. Running through the raindrops and splashing in the puddles makes him so happy!
However rewarding being the parent of a child with autism may be, it's also exhausting. Indescribably so. There's the hypervigilance required to constantly (and I mean 24/7) keep your child from escaping and wandering into a street or drowning in a nearby pool, burning themselves on anything hot while you're cooking, turning on a faucet and flooding your entire house, and emptying the contents of your refrigerator into the kitchen floor, all in the amount of time it takes you to run to the bathroom, When you combine that with the never ending insomnia that usually accompanies the autism diagnosis day after day and year after year, it can honestly make you feel like you're losing you're mind.
When I meet a parent who raised a child on the moderate to severe end of the spectrum to adulthood, even the fact that they're both alive seems awe-inspiring. I mean it. That the parent actually kept their child from drowning, getting run over, etc... for that many years on almost no sleep gives them almost superhero status in my estimation. :)
