Autism Was the Word—Love Was the Answer
Autism Awareness Month has come to an end. I, however, am aware of autism every day, every week, every month of the year. It rustles up a lot of opinions, especially this year.
Everyone who has autism in their life, and especially those who have a child diagnosed, has the right to their own thoughts, feelings, and beliefs. These thoughts will change over time and certainly change with your child.
For some of us, the prognosis is dire.
It’s not your child may be a little quirky, or have some obsessive interests, and need some supports for success. And for us, we didn’t even know that type existed 27 years ago. That’s not the prognosis we were presented with.
To wrap your head around being told your child may never speak, use the toilet, or be able to have a normal life is not easy. Initially, it hurts—for you and especially your child. You love your child and do not want them to struggle in that capacity.
It’s okay to have these feelings, these fears. It’s normal. Many of our situations are different; autism means vastly different things to different families.
As a young mom, it was really hard for me at first. I was able to adapt and grow and shift my mindset. The love and support of my husband helped me cope, and I wrote this for him.
Young love—there’s nothing like it. You live in this bubble of hope. You make plans for the future and wonder about what your life together will bring.
You dream about where you will live, how many children you will have, what vacations you will take. You look forward to a happy life together.
Especially being so young and naive, you are not imagining all the heartbreak and loss you will have to go through. It’s a part of life, and how you cope and support each other as a couple has as much to do with how you get through these things together as the actual loss itself.
As a young couple, we turned into young parents, and we were motivated and determined to build a good life. We had a son and then a daughter, and then we bought a house.
Things appeared to be going well—or so we thought.
Our daughter was struggling and wasn’t developing language. She began to disappear before our eyes. She stopped responding to her name and had some different things she would do. You pushed to get her help when the doctor kept wanting to wait.
Things began to get more difficult. She would scream and cry for hours and wouldn’t allow you to touch her. You never left her side. She had many behaviors—she would head-bang constantly, flop to the floor—and you were so patient, so loving to her. It wasn’t always easy.
We were waiting on an appointment for an evaluation. The day finally came, and two weeks later we went to get the results. I sat directly in front of the doctor and you sat off to the side, observing quietly, calmly. Then, with one word, that bubble popped, turning our world upside down: “Your daughter has autism.” Tears poured down my face, and you stared straight ahead. The rest was a blur.
You held me in your arms while I sobbed.
You wiped my tears and told me everything would be okay, even though your own heart was broken too.You stood strong and tall so you could hold me up when I needed to lean on you.
I yelled how unfair it was—how could this be!—and you tried to keep me calm and reassure me.
I didn’t understand for a long time how it was so much easier for you to accept. How you weren’t as sad as me. I didn’t realize that you were just as devastated as I was, but were more concerned with being strong for me and our daughter than for yourself. You cried alone; you grieved on your own time when no one else was there.
As time went on, you never wavered, and we went through some really hard times. You always loved her, no matter what.
You and me—we don’t see eye to eye on everything. Actually, there’s A LOT we disagree on.
But the important things—we agree on.
We have agreed our daughter will be loved and cherished, no matter what. She deserves to have the same experiences as everyone else. She will be treated with respect and love, and not left out. We will bring her out with us whenever possible. We will kiss and hug her, no matter how hard she squirms and pushes us away. We would do anything to ease her struggles and help her.
It was you who threw her in the air and bounced her over and over. It was you who kept trying to get into her world until she let you in—never giving up. It was you who made her feel safe.
You were the one who found her when she eloped into the neighborhood full of woods and a pond. I was so terrified, and you brought my baby back.
You were the one on the other side of the phone who took the brunt of my frustrations and tears.
You always gave me grace and were my sound of reason.
Well… mostly you gave me grace—after all, you aren’t perfect and this life can be really hard. There is lots of frustration, guilt, and fear. The early years were difficult, but you were willing to try and take her anywhere I wanted. You would be the one carrying her over your shoulder when things didn’t go as planned.
You were the one who knelt by her side when she had her first seizure and rode in the ambulance with her. I was frozen in fear.
You are her hero. She is daddy’s little girl, and I don’t need her to say the words to know how much she loves you and feels safe with you. I know because I feel the same way. You have a way of making everything okay, even when you’re crumbling inside. You never show it. You always make us feel safe.
You love us, put up with our crazy, and take care of us.
We have been through some really hard times. There were times I thought this life could break us. We found strength in each other and in our daughter.
We are always able to rally around her, encourage her, and believe in her.
We have a beautiful family—four amazing kids—and an incredible bond. Best friends underneath it all.
Things get hard at times. We argue, yell, and bicker. We get angry and resentful. But we always circle back to each other, our children, and especially our daughter. Her needs are significant, and she is the tie that binds our family together.
You are the glue that holds me together. You still wipe my tears and let me know it will be okay. I couldn’t have asked for a better father for our daughter, or a better husband for me.
You are truly our hero!
Written by Kimberly Mcisaac of Autism Adventures with Alyssa
