Last Tuesday my son let me know that he was asked to speak on a panel that was kicking off his high school’s participation in Autism Awareness month.
“Mom, they want me to speak about being a friend to kids on the spectrum as well as a brother to a sister with autism.”
Part of me was proud and thrilled for him. Tom’s best friend is not only an amazing, brilliant young man who is on the high end of the spectrum, he is also a tireless advocate. It was Christian’s work that made this month-long awareness campaign at their school possible. I knew Tom would love to be able to support his friend. And I knew he would do a great job.
But, I have to admit that a small part of me cringed when he told me he would also speak about our daughter Elizabeth. Before I could stop myself I blurted out, “Well Tom, Lizzy doesn’t technically have autism.”
The minute I said it, I wanted to take it back. What does it matter what we call my daughter’s disorder? Lizzy’s issues have dumbfounded countless specialists. Despite having five MRIs that show significant brain damage, she has never gotten a real diagnosis. I never had that odd closure when somebody sits me down in an office and tells me that my kid has a specific condition. I’ve never had an easy answer when people ask me what is wrong with my daughter. There are no ribbons or awareness months for families whose kids have life-altering issues but no concrete diagnosis.
Her issues dominate our family life. There are times when she speaks in what can only be called strange sentences. As an example, if she can’t get her seatbelt on she is more likely to scream and say, “Paula is hurting me,” rather than say, “I can’t get my seatbelt on.” Ten minutes later she might tell her brother that she needs help finding a Monty Python video on her Kindle in perfect English.
At 15, she desperately wants to have more freedom, like her two brothers have, but she can’t be trusted to not leave the yard because, as she has told us one day when she tried to make a break for it, a butterfly told her to follow it. I have started to let her wait for her bus by herself, but only with me waiting by the front door ready to pounce if she doesn’t stand on the spot I marked on our driveway until the bus stops. Before this, she would run as soon as she saw the bus, and the driver was scared she would hit her. Lizzy needs my help to get dressed, shower, and brush her teeth. She will never live on her own.
But if I’m totally honest, because there is no clear diagnosis, there has always remained this strange against-all-rational-thought hope that they will not only find what actually ails my daughter, but they will be able to help her lead a more normal life.
I know it’s ridiculous. I know she’s wonderful and special just the way she is. I know that she is her own person and has her own path to walk. I really do know this.
I just don’t always want to believe it.
I quickly backtracked with Tom and let him know he could say whatever he was comfortable with in describing his life with his sister.
“Well mom what if I say she has a brain disorder that has symptoms like autism.”
“That’s perfect Tom.”
April is Autism Awareness month. It’s a time for family and friends to shed light on the people they love who have a confusing condition that affects people in many ways. From kids like Tom’s friends, who will go on to lead amazing full lives like any other so-called typical kid, to those like my Lizzy, who will always need help and care, as well as to those people who cannot speak at all and need round-the-clock care.
Whether or not my daughter’s disorder is called Autism or not doesn’t diminish its effect on her or on the many people who love her. My son taught me there’s nothing wrong with bringing a little awareness to that.
Aw, Kathy Tom seriously is an amazing young man in part because of you and your husband and how you have raised him. I just can’t say this enough and do think you know this, but still just had to say it here. Hugs and love you my sweet friend <3
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I am still crying! Beautiful,raw and truthful! All words that dusceibe thus Post! Your an amazing writer!
Now about Tom you have helped him to be the wonderful young man he is ! Caring and living!
Love you much. Mom
Kathy – if you and Tom are comfortable with it, would you consider posting a video of his presentation, would love to see it! I also have a suspicion that your oldest is going to go on to be a fabulous advocate for people with developmental disabilities!
This is spot on perfect. Labels…. what are they good for? Not much in my opinion and Tom got it right! And that’s all because of his terrific parenting! My son shows symptoms of everything under the umbrella of this spectrum and I have even grown to discard the word “spectrum” from my vocabulary usually. Bravo and yes would love to see his presentation!
Lizzy is so lucky to have her brother as her strong advocate. You done good mom.
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What a lovely piece, Kathy! Labels are there to place boundaries. But when the lines are blurred, it does become difficult. You’re absolutely right—Whatever it is, the fact remains that your family is full of love and support for one another. That’s really the only thing that truly matters.
Thank you for sharing your story. You sound like an awesome family, even though I’m sure some days are tough.