Merry Christmas! Your Child is Autistic!
When my son was a toddler I remember looking at my husband and saying, “You know, if I didn’t initiate interaction with Max, I don’t think he would ever try and talk to me.” It was true. Lomax, my son, could sit for hours stacking a line of blocks across our hallway or drawing letters endlessly on sheets and sheets of paper and be perfectly happy without ever saying a word to me. He was, and is, an amazingly happy kid – especially when left in his own world. This made life easy for us as parents until we had to take him into THE world — which wasn’t nearly as fun. “The” world was filled with noises that were way too loud and people who got way too close. Why was everyone asking him to look them in the eye? Why were friends so important anyway? “The” world meant trouble and meltdowns. Lomax’s world and our world collided over getting dressed, eating, playing, listening, talking and eventually it became apparent that too many things were much too hard for him. For a long time we had shooed the idea of Autism away (even with growing amounts of evidence) until one day it just sat there staring us in the face on a paper labeled Kaiser Autism Clinical Diagnosis: Your Child Has Aspergers. The diagnosis was crushing in many ways but mostly because I knew he would have to struggle in life. However, it was a gift, because for the first time since he was born I felt I understood him and I didn’t need to change him. Lomax had Aspergers, that was that, and now we could move forward. Instead of changing him I could help him. Merry Christmas.
One in 88 children have Autism. In fact, according to the CDC, “About 1 in 6 children in the U.S. had a developmental disability in 2006-2008, ranging from mild disabilities such as speech and language impairments to serious developmental disabilities, such as intellectual disabilities, cerebral palsy, and autism.” One in SIX — an incredible statistic! Just in my social network alone I have: one friend who has a son with Pitt Hopkins, another a daughter with SMA, at my parish I know one mother who has a child with Down Syndrome, another with Cerebral Palsy, another with severe Autism, one with Aspergers and yet another with Dyslexia. My daughter, in fact, also has Dyslexia. Many of my days are spent trying to work around the “system” so that I can give my children what they need. I often have to research and hunt for days to find an answer. It seems odd to me that with so many children (one in six) with differences that answers are so hard to find.
A glimpse into my daily world of Autism— these are things people have actually said to me that I found somehow remarkable:
- “He has Autism? Are you sure? He looks normal.”
- “Kids with Aspergers are either your next Google genius or your next homeless person.”
- “I think my husband may have a “little” Aspergers, he just can’t communicate!”
- “So…I heard your son has Autism… but he has Aspergers right? Isn’t that the good kind?”
Understanding Through Education
Unless you spend a lot of quality time with Lomax you probably wouldn’t think he has Autism. Even knowing he does my husband and I catch ourselves forgetting the fact and expecting him to do the implausible. Children with Autism, especially high functioning Autism, are often the ones that get those “looks” from others like the, “Why can’t your child behave?” looks from adults or the “look at the kid that’s acting goofy” looks from the kids. I see those looks every day and I’ve learned to forgive them. I actually remember giving one of those looks to a family in an airport before I knew about Autism. The teen walked on his toes and I assumed he had an issue with his feet that the family must have neglected. Now I know he had Autism. I was naive and ignorant, like people who give those” looks” to my son are naive and ignorant. Now I understand because I have been forced to educate myself about Autism and it has changed my perspective so that I no longer judge. I find it sad that It took me until my child had a disability to even try to understand it. For most of us I think that is the norm. There is obviously a great need to understand disabilities so that adults and children can learn to see beyond people’s limitations and focus on the ways that we’re all the same inside.
Adapting to “The” World
When Lomax was baptized last year at age 6, I had to prepare him. No, I’m not sure you understand, I REALLY had to prepare him. He had almost daily meltdowns when bathing and water was poured over his head which made me extremely nervous about how he would handle a baptism ceremony. To help him with it we literally practiced the baptism ritual for two months using the same words and actions over and over so he could get used to it. Lomax could be the next John the Baptist at this point he practiced so much! In any case, this is a prime example of how our “world” does not necessarily work for a child with special needs. A child with special needs and his family experience this phenomena in all parts of life from the church to the school to the grocery store.
Faith Formation for Special Needs
I was extremely lucky to be invited to attend my friend, Roberta Witte’s, presentation on Faith Formation For People With Special Needs at the Faith Formation Convention in Santa Clara, California. She is a remarkable woman who personally struggled to raise a child with special needs and then became a therapist and educator for special needs children because she saw the need for help and change. After attending her presentation I realized the Catholic Church was supportive of children with disabilities but was surprised by the lack of actual infrastructure. The presentation focused on how to support children with special needs and how to educate parish employees and lay people who work with them. Apparently we have a long way to go. It definitely seems to start with taking the time to understand the need, taking responsibility to educate ourselves and then acting.
- Tools for Special Needs Faith Formation: (click on image)