Home > In Their Own Words > In Their Own Words – Finding the Right Words

In Their Own Words – Finding the Right Words

This “In Their Own Words” essay was written by Rose Wade. Rose has two children, including a son with autism. She is a military wife and the founder of The Robin Hood Lego Campaign Advocating Autism Awareness and Lego Therapy.

Our home is often held together by words both written and spoken. When my son first said “mama,” it brought tears of happiness to my eyes. There are words of encouragement and correction I’ll give to my children until I’m old and grey. Or older and greyer than I am now.

We’re a military family. My husband has been apart from us many times. From brief two-week temporary duty assignments, six-month deployments to Iraq and Afghanistan, and now a year-long remote tour in Korea.

The time allotted to him for moral calls to us is free, but brief. Our family has fifteen minutes to cling to each others’ voices. Every word spoken is precious. We save letters for birthday, anniversaries, and holiday cards. There are several, ribbon-tied envelopes from years of correspondence tucked away in the closet.

My 12-year-old son, Matthew, was diagnosed with high-functioning autism. Though I still haven’t been able to encourage him to write a letter to his father, I love every minute of listening to him chatting on the webcam during the few instances when my husband can be away from duty.

Matthew will talk endlessly on several subjects and they’ll all string together. One word or phrase will remind him of something else he saw or learned, and the talking will continue.

His talking is also filled with questions. I never know where I’ll be, or what I’ll be doing when I’ll be asked a question about the formation of the sun, and two seconds later be asked why the mail doesn’t run on Sundays.

I do what I can to keep up with the questions. I’ve had to search my own ‘files’ for the appropriate answers. I’ve often had to reply “I’m not sure.” It’s a good thing I’m not a contestant on ‘Jeopardy’. I’d owe money to Alex Trebek.

My 10-year-old daughter, Kayli, asked Matthew why he’s always so talkative in the car. I didn’t notice it myself until she pointed it out. While I’m driving and answering Matthew’s questions, I must look like I’m talking to myself or singing with the radio. So far, I haven’t been pulled over by the security forces on base because they thought I’ve been on a cell phone.

Matthew speaks often. Sometimes it wears on my patience, but I do my best to give him answers even if I have to often gently remind him that he had asked me the same questions yesterday. He’s talkative, but I wonder how many of my responses are getting through to him. I’ve spoken to him about several subjects, several times. But I know I’ll be asked again next week.

Thanks to the inspiration of a talented man, I found a passion for creative writing. It has given me a new creative outlet that helps me cope with my brave husband’s long absences that leave me to deal with daily fears about his safety, my darling son with autism, my social butterfly daughter, and household appliances that only cause trouble while my husband is away.

Inspiration was given to me again, by the same talented man, and led me to start The Robin Hood Lego Campaign Advocating For Autism Awareness & Lego Therapy. My writing has found another, important outlet. My hope for the campaign is to educate others about autism by expressing my experiences with a child on the spectrum.

My son has high-functioning autism. He comes with his own challenges and triumphs. There are children across the varied autism spectrum, each with has loved ones who search for ways to cope with the effects of autism on the child, and on the family.

Sometimes words are too repetitive, too harsh, not clear enough, filled with impatience. Sometimes the right words are simply missing.

I worried over my first blog post about autism entitled “How Would You Know If a Fish Had Autism?” Would people want to read it? Would they understand my point-of-view?

The blog post received comments from mothers of children with autism, paraeducators, and adults with autism. Their heartfelt words touched my own heart and reminded me not to give up my campaign to raise awareness of autism and its effects on families.

I listen to the words and questions spoken by my son and I learn more every day about him, and about autism. Just like my son’s words to me, the words I share with others about autism may not always be the right ones, or understood, or relatable to everyone, but they will always come from the heart.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

  1. June 26, 2010 at 12:16 pm

    My son is 24 and didn’t speak until he was 4, he wasn’t told Autism until he was 15. When he started talking, I was so happy, when the questions started I thought I would lose my mind, and I guess I have because I don’t remember all of the questions. But I do remember walking though CostCo when he asked “Where are my sperm” of course it was a weekend so people were everywhere and lots where looking, my answer was when we get home we will talk about that. He loved to ask questions in the car, I thought it was he didn’t like my music.Must be those senseory issues. He is a wonderful person, I wish there was a cure for the social part of Autism, because he should have lots of friends. I will share this site for him to share his thoughts.

  2. Renee Parks
    June 26, 2010 at 1:16 pm

    My son is just 3 and I struggle daily with trying to say the right things to him to decrease anxiety. Most days I fail. I guess we just have to keep doing the best we can and pray. We just have to love them.

  3. Stacey
    June 26, 2010 at 8:50 pm

    This hits so close to home for me in so many ways! My son Nick is five and was diagnosed a year and a half ago with Autism. I was just asked yesterday in the car “Momma, Momma, Momma…why do we live on the earth?” I am still adjusting to the questions all day everyday! I love that his mind is always processing however there are moments where I don’t think I can answer one more, and days when I wish I had a penny for everytime I heard “Momma, Momma, Momma…. !!! (I swear it could be close to 100 times an hour!) But then I think of so many other Moms who have not heard those amazing words yet and I try to once again to count my many many blessings and answer all of the questions the best I can with patience and love. It is the best we can do.

  4. marna
    June 26, 2010 at 11:58 pm

    My daughter Rachel is 6 she was diagnosed with pdd-nos at 2 1\2 and she pretty much only babbled and made noises until she was about 4yrs.old. Now every place we go and everything she sees on tv she asks “What is it” and I must say I love it! I find it very encouraging that she is so curious. I am very proud of how far she has come and how motivated she is to learn.

  5. Donna Y
    June 27, 2010 at 8:34 am

    thank you. My 7 y.o. is also high functioning. So I know of what you speak. I too live with non stop talking and question after question after question.

  6. Sujin
    June 28, 2010 at 3:10 am

    I can’t help but cry seeing this. I have a 3 1/2 son and still hasn’t say any word yet. And I would be the happiest creature on earth just to hear him say “mama”, but I’m happy for you guys that you have wonderful angels. I really love my son but I can’t stop worrying for him.

  7. stephanie
    June 29, 2010 at 11:34 am

    My nephew is 4 he has it

  1. August 13, 2010 at 1:31 am

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