June 7, 2016
The Thinking Moms’ Revolution is proud to announce their new book Revolutionary Grandparents: Generations Healing Autism with Love and Hope. The following is from one of our nineteen amazing grandparents. All TMR proceeds from the book go directly to TEAM TMR’s Family Grant Program.
Hope Is The Thing With Feathers
“Hope” is the thing with feathers –
That perches in the soul –
And sings the tune without the words –
And never stops – at all –
~ Emily Dickinson
I recently read a book that contained this passage, and it made me think about how important hope is to me, even more so now that I’m a grandparent to two siblings with autism. I have always been a positive, hopeful person. I’m not someone who always jumps to the worst conclusion or who regularly stresses out over things that may never happen. For most of my life, my faith and belief that things will work out for the best has often turned out to be true. In more recent years, though, my faith and positivity have been repeatedly challenged by my grandchildren’s diagnoses of autism.
I live in the same household with my daughter’s family, and I’m lucky to see my grandkids almost every day. I am completely devoted to Livvie, my 6-year-old granddaughter, and Jordan, my 4-year-old grandson. I accept them unconditionally and love them with everything in me. As with most kids on the autism spectrum, Livvie and Jordan are very different from each other in the ways they are affected by this disease. Livvie is essentially non-verbal, and her social skills are limited. She attends kindergarten in a class strictly for kids with autism and still receives speech and occupational therapy outside the classroom. She has a very self-limited diet and lots of issues with poop. But most days she is happy and carefree while at home with her family. Jordan is opposite Livvie in most ways. He talks pretty much non-stop, and has an excellent vocabulary. He taught himself to read and spell when he was 18 months old by watching YouTube videos! But he is extremely emotional, with lots of mood swings, and a perfectionist who is devastated when he makes a mistake. Every day for Jordan is a series of meltdowns of varying degrees. Both Livvie and Jordan have lots of nervous energy, and seem to be always in motion – running, jumping, climbing, spinning. And although each of them has made significant progress since their diagnoses, they both continue to have medical, emotional, and functional issues that are often frustrating and sometimes heartrending, for them and their parents and me. Still, they are smart, loving, amazing beings who bring me immeasurable joy.
My hopes for Livvie and Jordan are great and small, complicated and very simple, and different for each of them. Some days I hope for ordinary things, like smiles on picture day, or bedtime with no whining, cajoling, or wrestling. Sometimes, I hope for things that will make their mom’s (my daughter’s) life less difficult, like figuring out why Livvie is afraid of the toilet, or why Jordan has suddenly decided to cry every day when the school bus arrives. Some days, I shoot for the moon, and hope for an actual conversation with Livvie or an entire day when Jordan’s emotions do not get the best of him. And always, always, I’m hoping for the right treatment, or therapy, or supplement, or SOMETHING that will help recover my grandchildren from ASD.
And now there is Bella, my brand-new granddaughter. It’s not hard to guess that my greatest hope for Bella is that she will escape the diagnosis that has had such an impact on her siblings. If she does, her tiny little shoulders will bear the weight of so many of my family’s expectations. The dreams of dance recitals or sports games, family vacations, dates and proms, colleges and weddings, which, while we certainly haven’t stopped hoping that we’ll experience with Liv and Jordan, will almost certainly be different for all of us than what we once imagined. For Livvie and Jordan, Bella may be a little sister who will at some point become the leader and example to her older siblings in many things, rather than the other way around. It hurts my heart to think that Bella might one day be faced with the responsibility of caring for Liv and Jordan, but it’s not hard to imagine that possibility, and to hope that Bella will be up for it if she is called upon.
But beyond all the expectations and unrealized dreams that our beautiful baby might be burdened with if she is neurotypical, the best of my hopes are for Bella herself. I hope that her toddler years are busy with exploring and playing and testing her limits, rather than filled with speech therapy, occupational therapy, and physical therapy. I hope that she learns to talk early and can tell us whatever she is thinking, and will never have to struggle for every word. I hope that she has many little friends to play and share with, instead of avoiding most social contact and feeling more comfortable being isolated. I hope that she does not have issues with food, poop, language, or sleeping, or with clothes and noises and hugs that hurt.
They say hope anchors the soul. Every day, we arm ourselves with hope as we fight our war with autism. My daughter is a most worthy general, marshalling the troops, plotting the strategies, scouting the enemy constantly to win each day’s battle. I try to be a good lieutenant, supporting her and the grandkids in whatever ways I can through the struggles. Some days, we are lucky enough to celebrate victory – big or small, we take what we can get when we can get it. Then there are the days when autism wins and we wave the white flag and surrender the fight for that day’s conflict. But the battle goes on, and the war is far from over. Through it all, we never give up hope, even when it’s all that’s left at the end of the day.