This is the first installment in a series I’m hosting called "What I’d Like For You To Know". You can read a little more about the idea behind the series here, and there will be a new installment each Thursday for the next several weeks. Today, please welcome Arianne from To Think Is To Create. She’s an accomplished blogger and the mother of three in Chicago-land. Two of her sons have autism. Here’s what she would like for us to know:
When Shannon asked me to guest post, and to write about "what I’d like for you to know" about my family and our journey with autism, I was thrilled. Besides the fact that it’s exciting to get an audience with all of you fine people, the truth is that I have never been asked this powerful and insightful question before. Most of the time people either don’t think to ask what I wish they knew, or they think they already know and there’s no need to ask. I humbly accepted her invitation, and hope that after today you all understand the world in which I walk a little bit more than you did before.
Day to day my husband and I share many of the same thoughts or statements about what goes on around our house. Lately as we watch son #3 regress and show us that he, too, is on the autism spectrum, the shared ideas have been much along the lines of, "Really? A third one?!". We know in our hearts that it’s meant to be, and that God prepared us to be the perfect parents for these three amazing children, but we are human, and if we think about handling this life on our own we get royally freaked out. Our days are hard. Very hard. And that is something we often say to each other, "I wish people understood how hard this is". I say that with the 100% hope that you all understand that I am not trying to garner sympathy, but instead simply to gain your understanding. To "get" us.
Our friends and family know that things are hard for us, but unless you are living this life 24/7, it’s very difficult to describe or to fully grasp what goes on. I could go into detail about the rigid life we are forced to lead, the tantrums that are so sad and hard to deal with that we the parents sometimes cry more than the kids, the sensory issues affecting simple things like getting dressed or bathing, or the profound food allergies and refusal to eat anything most days. However, all that could be a book of details and stories and laughter and tears, and there isn’t enough space here for all that. All those details make up much of our lives, but what we really wish you knew is what it’s like to live with all that, and, for the most part, to have no idea when or even if any of this will stop or go away.
Most of the time we are walking on eggshells, just hoping to stretch out our tiny steps long enough so that we don’t break anything underfoot. Their sadness that follows a tantrum, the heartache of realizing that none of this is their fault or something they can control. The grief for how they "should" have been or grown up to be. It’s all so fragile. I don’t think many people know what it’s like to live with constant angst on the faces of your children. The feelings of helplessness that come up from deep within us are often overwhelming, but somehow just to know that you all know, and understand, would make us feel supported. Loved. And that perhaps we aren’t quite so alone. On our weaker days it seems profoundly unfair, that "normal" families deal with none of this. But on our better days we rejoice in the gift of raising these special boys. Thankful for the faith that God has in us alone to parent them, to love them, and to shepherd them into the lives they were made for.
As I talked with my husband about this topic, and what else we’d like you all to know, the second most important thing that came up is that you should know that autism is not the child’s fault. You may have read that and thought, "of course it’s not!", but have you ever seen a child acting out at the store, or acting weird at the bus stop or the playground and wondered to yourself why the child didn’t just stop acting like that? Or wondered why the parents didn’t just get control of their child? I have to admit that we don’t frequent public places with my boys that often. It’s so much work, and we’re so exhausted every day, that we typically leave the circus for another day. But when I do venture out, I can’t help but see the looks of others around me when my boys do something funky or socially "inappropriate". I want to tell the gawkers that my boys aren’t badly behaved, but that they can’t help their actions. I want to scream that they wouldn’t be this way if they had a choice. That they’d give anything to feel normal for even one day. Almost all of the behavioral symptoms of autism have a bio/neurological cause, and therefore can’t be controlled except with intervention. Even down to the flapping of hands, head banging, tantruming–all of it has a cause. Believe me, there are days that it’s hard for us to even remember this, because it’s tempting to get angry when things happen–yet again, but we have to slow down and tell ourselves "he just can’t help it", and move on. I hope you can too.
Finally, as you work to understand us better, and learn that the autism you see usually can’t be controlled, we also ask you to teach these things to your own children. Chances are good that your child will be interacting with and going to school alongside someone who has autism, and so our hope is that the children can learn about their funky friends, can understand them, and can accept them. My boys are often stared at or avoided by other kids because they are different. They are still young, but I wonder what the future holds as they enter grade school, then high school, and so on. Will they ever be understood? Will they be accepted? Teaching your children about autism, and why these kids are awesomely gifted and smart and why they should be loved, is the best way to prevent the teasing and the blacklisting that has been happening way too often lately to autistic kids. With a little time and understanding, my boys make incredibly fun, loyal and hilarious friends. They have the ability to do this, they just need to be given the chance to show themselves to the world. To be someone’s best friend. To be someone’s soulmate.
Many times families with autism wouldn’t mind sharing their suffering with someone. Not just to have a pity party, but to talk about the realities of "what it’s like". Don’t be afraid to ask questions, lend understanding, and pass it all on down to your kids. Our family is acutely sensitive to all the little details that make life so beautiful. We need you, now more than ever, and we know that you need us too.