In my first blog, "Dear 'Special Needs' Parents", I talked about some of the hopes and wishes each parent might have for their child with ASD. Sometimes these dreams seem just that, a dream that is just out of reach in our waking hours. But today I wanted to throw some light on our little friends with Autism and the incredible gift they and it is. What has loving someone on the spectrum given you? What super power do you have that would have laid dormant if not for you having to reach deep inside your soul? What extra sense has been awakened in you while helping your child to cope with this big, bustling world?
I'm sure you've put yourself in your child's place many times as you've seen them go into sensory overload as the sounds, colors, vibrations, and feel of things all become too much and they must escape. This is when you have become their haven of solace. By bringing them to a dark, quiet room and having them shut their eyes, maybe doing some deep pressure exercises, you have helped them slowly decompress from what might seem like a living hell to them. What has this taught you about yourself? That you have an incredible ability to change your energy vibration so this can envelope your child and help them slow their breathing and calm? Or that your touch is soothing the demons out of a little ones soul? What magnificent gifts have you been given in your road to self discovery as you and your child travel along this road.
Sometimes the road can feel like a desolate highway, sage brush blowing by, as the heat beats down on your throbbing head and the dust chokes you. Sometimes it feels like a lush path into a meadow where your feeling the cool, damp soil beneath your feet and smelling the wet, fragrant air as you take in all the deep, beautiful colors of the landscape.
With what can be the immense heaviness of daily life it is so easy to loose sight of the big picture of what is possible for our children. When I sit back and I see people like Daryl Hannah, Dan Aykroyd, Susan Boyle, and Temple Grandin whom have Autism and are in the public eye and handle it with such grace and integrity. These are just a few of the people whom live with this and maneuver through daily obstacles and figure out where the puzzle pieces of their reality fit for them. I have shared a bit on my "About Me" that I have an 8 year old daughter warrior who was diagnosed with Juvenile Diabetes about 5 years ago. This diagnosis sent me into a tailspin. I am diabetic so, my thinking was, obviously I'm to blame. But then the doctors told us they don't know how someone gets type 1 diabetes. This an illusive disease, the highs and lows of it are like riding a rollercoaster and the backlash it has on a little one after trying to recover from one of these is heartbreaking. I've had to mourn play dates that won't happen because parents won't know what to look for if her blood sugar comes crashing down or skyrockets or how to give her insulin. Forget about overnights, that's just out of the question.
I'm the mom that will be up sometimes all night if my daughters blood sugars are too high or too low. When she's bright eyed and bushy tailed in the morning, I'm crashed on the couch with 2 hours of sleep under my belt but I'll peel myself off and prop myself up and figure out a way to make it through another day with no sleep. I allow myself to mourn what her life would have been like is she didn't have to battle this daily and sometimes the ignorance that you encounter out in public. I have the same fears and anxiety all parents do, I sometimes come from a place of fear because my daughter is completely insulin dependent and I know all the repercussions that go along with it.
I've been laying in bed with her at 2 am after her blood sugar went so low she passed out, or call in sick to work because I'm too exhausted and my eyes are crossing from being awake for nights on end checking erratic blood sugars when her doctors have changed her insulin dose ages. But I've also seen her eyes when she meet another kid who has diabetes and the big sign that she exhales and you can read it in her eyes, "I'm not alone! Their just like me!" I also see how this has made us closer as mother and daughter and how I can be her safe spot when she is feeling "different" or being made fun of. I wouldn't change one second of my precious time with her.
I see a lot of hope in the challenges our children face because, though it breaks our hearts, they are strong and resilient. The are a bundle of love and want to share their smiles with people around them. They teach us daily that we can prepare for life all we want but we must also be flexible because we may be shown a road, though not of our choosing, is a road that connects us to an unexpected and beautiful new destination. It reminds me of a quote by Joseph Campbell, " We must be willing to let go of the life we planned so as to have the life that is waiting for us."
I hope you all have a wonderful week! Shine On! Ronette Parker ABA