Here’s the official proclamation from the White House. Whatever else you may think of the Affordable Care Act, you’ve gotta love that it mandates insurance coverage for autism screenings and developmental assessments for children at no cost to their parents.
Kinda churchy in its wording (and a bit stiff in the translation), but the head of the Pontifical Council for Health Care Workers had some really nice things to say to the autism community. Here is one passage that I really liked:
In this pathological movement of self-envelopment and closure to the other and the external world, the Church sees as impelling the task of placing herself at the side of these people – children and young people in particular – and their families, if not to breakdown these barriers of silence then at least to share in solidarity and prayer in their journey of suffering. Indeed, this suffering, at times, also acquires features of frustration and resignation, not least because of the still scarce therapeutic results. These frustrations are to be seen, in particular, in families which, although they look after these children with loving care, experience repercussions as regards the quality of their own lives, and are often, in their turn, led to be closed up in an isolation that marginalises and wounds.
If you untangle the words, you see that Archbishop Zimowski gets some of the most challenging aspects of living with ASD: the frustration of the ones “trapped” inside of themselves and the isolation that not only they but their families can experience as a result.
I’ve often thought that the greatest gift the Church can give to the world is the gift of solidarity–one of JPII’s favorite words. Today’s Mass readings described how Jesus showed the greatest solidarity with us by becoming one of us and walking the paths that we walk–even to death on a cross. And now we as members of his body are called to the same solidarity–to become fellow-travelers with anyone who feels abandoned, marginalized, or less than worthy.
This, too, is one of the greatest challenges–and privileges!–that I find in raising my ASD kids. It takes more to get inside of their brains than it does for neurotypical kids because ASD kids can have such a hard time communicating who they are and what’s going on inside of them. You have to learn to think like them, and that can be very hard to do. But once you’ve got the key, you can make all sorts of contact and bond with them in new ways. And the love that flows between you is something extraordinary.
The problem, of course, is that not too many people outside of the family are going to go through all the work it takes to get there. And that leads to misunderstanding, isolation, and limited opportunities. So this is why statements like this one from Rome are so encouraging. It’s so good to know that we’re not walking this path alone.
Then there’s the archbishop’s statement that people on the spectrum . . .
. . . are never alone, inasmuch as they are passionately loved by God and, in Him, by the community of those whose faith commits them to becoming a living and transparent sign of the presence of the Resurrected Christ in the world.
A “living and transparent sign” of the presence of God. Yes! This is what I want to be for my kids. And this is also what I know my kids are becoming for me. God just shines through them in a special way.
May we all have eyes to see!
Eight Things My Autism Spectrum Kids Have Taught Me
According to the CDC, approximately one in every eighty-eight children is diagnosed as being on the autism spectrum.
If those are the odds, then Katie and I must be overachievers. All six of our children on the autism spectrum. That’s one hundred percent of our kids. Seventy-five percent of our family. Granted, they’re high-functioning, but they show many of the classic signs: social awkwardness, communication challenges, anxiety and depression, OCD, perseveration, narrow focus of interest, sensory processing dilemmas, and a variety of learning glitches.
When Katie and I started receiving the diagnoses about three years ago, we did what any normal couple would do: We panicked. Then we grieved. Then we read. Books, blogs, articles—we devoured them all. But while we learned much about the science and the prevailing theories and therapies, and while we have benefited from the experience of those who have traveled this path before us, our greatest teachers have been our kids. For all the challenges they face, they are amazingly resilient, loving, and wise. So let me pass on some of the lessons they have taught us.
1. It’s Not All about Autism.
When our kids started getting diagnosed, I began to look at them through the lens of autism. “He’s so skinny. Must be the PDD-NOS.” “All her struggles at school are because she has Asperger syndrome.” “It must be the autism that has delayed his development.” But as Dr. Freud would say, sometimes a cigar is just a cigar. Maybe he just has an active metabolism. Maybe she struggles in Math because she’s right-brained. Maybe he’s just a late bloomer. Over time, we learned that they’re not our autistic kids. They’re our kids, and they happen to be on the autism spectrum. Autism is only one part of the wonderfully complex mystery that is each one of them.
2. Breathe.
I can spend so much time and energy trying to help my kids. Are they getting the right therapies? Have I been aggressive enough advocating for them? Am I up on the latest research or behavioral intervention? But at the end of the day, my kids are going to be who they’re going to be, and I won’t be a bad parent if I slow down and enjoy them. It’s not up to me to try to fix them. It’s up to me to help them become the best versions of themselves possible. Besides, they’re not broken.
3. Say What You Mean. Mean What You Say.
Kids on the autism spectrum tend to take things literally. Irony can be lost on some of them—along with simile, metaphor, and hyperbole, for that matter. So you’ve got to choose your words wisely. In my family, this is more true for some than for the others, but I still have to be pretty careful. It works the other way around, as well. Kids on the spectrum can be very blunt—not out of a cold heart but simply because they don’t get how their words might affect someone else. So learning how to talk with them has made me more straightforward. And it has given me a thicker skin.
4. Be Gentle.
Any parent of kids on the spectrum knows how sensitive these children can be. Loud noises and raised voices can set them off. Trying to rush them out the door backfires. Correcting them too harshly (especially when I’m upset myself) only leads to meltdowns. I’ve learned the supreme value of a soothing tone of voice, a gentle tap on the shoulder, and plenty of lead time before a new activity. Back rubs and warm embraces go a long way—if there are no sensory challenges present. And when there are, I’m learning how to give them space and not push too hard. You really do catch more flies with honey than with vinegar!
5. No One Knows Like You Know.
It never ceases to amaze me how eager teachers, neighbors, and family members can be to offer diagnoses and prognoses, opinions and suggestions. It shouldn’t surprise me, but it still does, to hear a school administrator or a well-intentioned church member tell me how to raise my kids. The world is filled with “experts.” But in the end, it’s your child. You know him better than anyone else. Of course you should get insight and advice from real experts in the field. But more than anything else, you have to go with your gut.
6. “How” Is Better Than “Why.”
When we received the first diagnosis, I was anxious for his future. Then the next one came, and I got angry at the unfairness of it all. Then came the third, and I was genuinely scared. By the time we got the fourth diagnosis, I was numb. What did these kids do to deserve this? Was it something Katie and I did? But rather than dwell on why my children have these disorders, I’ve found that it’s better to ask how. How do I raise them in a way that affirms their dignity and builds their self-assurance? How do I advocate for them and prepare them for the day when they will have to advocate for themselves? How do I help their peers understand the challenges they face and embrace the gifts they bring? I don’t have time to ask the metaphysical questions. There’s work to be done, right here and right now, and I can accomplish much more by doing that work instead of asking why.
7. You Deserve It.
Not countless visits to speech, behavior, and occupational therapists. Not an endless list of medications and untold hours of arguments with insurers. Not quizzical, judgmental stares from people in Target or at the park. Not fruitless battles with an inflexible school system. You don’t deserve any of that. What you deserve is time for yourself. You work hard for your kids. You worry about them. You pray for them. You feel the need to explain them to outsiders. Burn out is a constant threat. I’ve learned not to let that happen. I have to take time for myself. Katie and I have to take time for each other, too. Even if it’s just a walk around the block after bedtime or a joint trip to the grocery store, we do it. We need to keep our horizons big so that we don’t collapse in on ourselves. I know that our kids will thank us for it!
8. Don’t Worry about Getting It Right the First Time.
I’ve got lots of opportunities, and kids are pretty forgiving.
autismblues 