Look Me In The Eye…or…maybe not.

Lomax

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?”

Click here to learn more on Autism/Aspergers.

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.

Informational Links:

Click Here to download PowerPoint on Faith Formation for People With Special Needs by Roberta Witte

  • Tools for Special Needs Faith Formation: (click on image)

My Picture Missal Flip Book and Mass Picture Cards

7 thoughts on “Look Me In The Eye…or…maybe not.

  1. Thanks for this post. It is very important for us to understand people with special needs and difficulties they and their families face every day. It would also be good for people to learn more about they can do to assist them and their families, even if that just means being able to relate better to things that they do not experience themselves on a daily basis. I’ve had a growing awareness about autism and Aspergers over the last couple of years just because I have met more people with children that have some form of autism. It makes me want to learn more. So thanks again for sharing your experience with us today. God bless!

    1. Thank you for your reply Biltrix. I also neglected to thank you for your kind blessing the other day. That meant a lot to me. God bless you too!

  2. Lomax is gorgeous! I used to volunteer in a special needs class at the local Catholic school. Most of the kids were the autism spectrum, a few of them with Aspergers. I went in the classroom every month and prayed the rosary with the kids. Because of its repetitive nature, the children with Aspergers responded well, often racing ahead of me with the Hail Marys. They liked the repetitive nature of the rosary beads too.

  3. Thanks I think so too- my husband would say he takes after him lol 🙂 I haven’t introduced the rosary to Lomax yet- thank you for the idea! I think he would respond, like you said, to the repetitive nature. God bless.

  4. Over on our shores we have someone from the diocese who oversees the RE education of children with special needs. Have you enquired about this?
    In schools here now, there is a big focus on teaching R.E. to children with special needs. The English education system is inclusive.
    English citizens are in the know about Special Needs. Much work goes into parent education. Have you been in contact with support groups?
    LOADS of learning and knowledge about Special Needs is gleaned by the children in school as their classmates invariably have one difficulty or another. Perhaps they’re not always on the Autistic Spectrum, but nevertheless, we admit to all having challenges in different areas of our learning and communication. (Written, spoken or socialising). We’re all at school to learn.
    Love the idea of introducing the Rosary to Lomax.
    Thanks for the heartfelt sharing.

    1. It is wonderful that England has such awareness. I don’t see anything similar in the school systems here. Here we are just now introducing anti-bullying to school children but there is nothing (unless on an individual teacher basis) that teaches about special needs. You bring up some really interesting points about the program in the diocese. I will do some research and see if we have anything like that here.
      Hope all is well! Happy Holidays!

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