Sunday, November 2, 2014


In previous blog entries, I have mentioned the various roles I play as an autism mom, including teacher, therapist, nurse, pharmacist, administrative assistant, and coach. No matter what role I assume, I have one goal: to make Alex’s life better. As we have been preparing for his upcoming oral surgery this week to remove his twelve-year molars and wisdom teeth, I realize that I have another role in his life. That role is to be his agent, promoting his strengths to those who may be working with him and convincing others that he, indeed, is worthy of their kindness and compassion.

When Alex was little, he had an endearing charm that instantly drew people to him. As he has gotten older, his fully grown body with his long arms and legs has an awkwardness that can be off-putting to those who don’t know him. His difficulties with keeping enough personal space distance can seem threatening because he is so tall. In addition, he can be self-conscious at times, speaking quite softly, as though he knows that his speech can be difficult to understand. Moreover, eye contact still proves difficult for him. As a child, he had less difficulty with eye contact, and when he did look away, it appeared as shyness. As an adult, this lack of eye contact can make him appear aloof or disinterested. In essence, Alex often doesn’t make a good initial impression.

For this reason, I want his appearance to be appealing. Thankfully, he enjoys being groomed and allows me to cut his fingernails, to keep him clean shaven, and to cut and style his hair. His treasured daily baths keep him immaculately clean, and we make sure his teeth are always brushed. Between soap, shampoo, shaving cream, toothpaste, deodorant, moisturizer, and clean clothes, Alex smells good. Also, he trusts me to choose his clothes, and I make sure that he is dressed neatly and stylishly. Moreover, when Alex is in public, Ed often reminds him to put his hands at his sides or to pick up his head so that he doesn’t call negative attention to himself as he walks along. Although we love Alex just as he is, quirks and all, we know that the world may not be as accepting as we are. Therefore, we want him to look his best and do everything we can to help him with his appearance because he can’t do it himself, and frankly, he doesn’t really care.

When we have our quarterly meetings with Alex’s “team”—his case manager, behavioral therapist, music therapist, and representative from the agency that provides respite care—Ed frequently takes on the role of proud dad, telling Alex’s accomplishments and letting everyone know how smart and clever Alex truly is. When a child has a disability, discussion often revolves around the weaknesses and what that child can’t do, but we also want others to know our child’s strengths. Fortunately, those who work with Alex soon discover those strengths and can see through the obstacles to the lovable and smart young man he really is. However, Ed and I  must “sell” those strengths until Alex can display them himself.

The process of getting Alex’s oral surgery arranged has required several phone calls and appointments, where Alex has met and interacted with new people. After Alex’s dentist recommended having teeth extracted, we took him to our dentist for a second opinion, where Alex had a panoramic x-ray and examination and cooperated with the dentist and assistant nicely. He also did well with the oral surgeon and his assistant for the consultation appointment. Last week, he had a physical exam with a new doctor, along with blood tests, a chest x-ray, and an EKG, which went smoothly. This week, I spoke with a nurse at the outpatient surgical center where he will have the teeth removed. In each of these experiences, Ed and I found ourselves introducing Alex by putting the autism out there first and then promoting Alex’s strengths. “He has autism, but he loves coming to the dentist.” “He has autism, but he’s always very good about having blood tests.” “Other than autism, he’s very healthy and normal.” “He has autism but is usually very cooperative. We will help you any way we can to make this easier.” Essentially, we don’t want anyone to dismiss Alex as less than he is because he has autism. We have seen him rise to the occasion, and thankfully, he rarely disappoints us in those situations where we need him to comply. Hopefully, he may even change some people’s stereotypes of autism as they remember a nice young man whose parents said he would do well, and he did.

In Jeremiah 18, an allegory is told in which the prophet is told to go to the potter’s house. “So I went down to the potter’s house, and I saw him working at the wheel. But the pot he was shaping from the clay was marred in his hands; so the potter formed it into another pot, shaping it as seemed best to him.” (Jeremiah 18:3-4 NIV) In this symbolic story, the potter is God who can take the marred and make it good and useful. Despite the marring that autism causes, God has created Alex with strengths that can overcome the weaknesses. As his parents, we want others to recognize how much he has to offer, and we gladly push aside the obvious hindrance so that others can realize all the good that lies underneath.
“But you are not like that, for you are a chosen people. You are royal priests, a holy nation, God’s very own possession. As a result, you can show others the goodness of God, for He called you out of the darkness into His wonderful light.” I Peter 2:9


Dawn Marcotte said...

Thanks for sharing - I agree that perhaps the best ambassadors for change are our children themselves. Some parents don't like telling others that their child is on the spectrum, but I think that is a mistake. It helps everyone to be prepared.

Pam Byrne said...

Hi Dawn,
Thanks for your nice note, and I completely agree with you. :) If our children think that autism is something to be hidden and ashamed of, they will feel ashamed. I figure it's better to be open and honest with everyone, especially Alex. :)
Take care,

phyllisbizeemom said...

I wholeheartedly agree & do this with my son! I must say again-
you & your husband are such AWESOME
parents & caregivers! Bless you
all! :-)

Pam Byrne said...

Bless you, Phyllis, for your support, encouragement, and kindness! We autism parents need each other, and I'm thankful God brought us together. You are an awesome mom, and I pray that your son gets better and better with your help and God's blessings.