The Word Autism: nothing as expected

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When I was first pregnant, I told myself there was nothing I couldn’t handle. I told myself this because I wanted to prepare myself. I knew the statistic was 1 in 6 children born in the United States have a developmental disability.  I always thought, ‘I would be perfectly prepared to be a mom to an autistic child‘. Most of my life I have been surrounded by those with special needs. I figured with all my life experience, I was ready for anything.

autism

There are news articles and blogs to share the experience of the 1 and 68 children born with autism.  Every year we Light It Up Blue campaign on April 2nd the National Autism Awareness Day. We have each heard the word autism. The moment you hear it regarding your own child is like you are hearing it for the first time. I realized this after I was blessed with a beautiful daughter who was diagnosed with autism at the age of three.

The journey of receiving my daughter’s autism diagnosis was nothing as expected. It started the night she was born. I held her in my arms the whole time we were at the hospital. I had no choice because the moment I would lay her down in the hospital bassinet she would cry. She was so different from any other baby I had known. We got her home. There was no change in her need to be held to sleep.   Eventually, we adapted and got her to sleep with a boppy nursing pillow. After the sleep issues came the digestion issues. At first, I thought I was overfeeding her. Soon, we were at the doctor’s office all the time for the non-stop throwing up. We had exams and x-rays. The doctors were stumped but not worried; however, I was worried.

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Her sleep issues and digestion issues eased up six months later. I know there was a problem, though. I would have my two-year-old son look me in the eyes and count the seconds before he looked away. Then I would catch my daughter eyes counting the seconds until she looked away. I talked myself out of being worried because she seemed to be hitting the mile markers. Around twelve months, we were adapting to her sleep schedule and her digestion issues were manageable.  Things were better but I should have known. I joked “I have the most serious baby ever.” Around this time, I started noticing she wasn’t responding to her name. She wasn’t following basic instructions. I thought maybe she had a hearing problem. I would clap and make loud noises to see if she would respond.  It was not a hearing problem. Her doctor confirmed she had passed her hearing test. At Angelbabyeighteen months, she was mumbling gibberish but could clearly sing a couple of songs.  I spoke to the doctor about her lack of words. The doctor encouraged us to wait because my son was a late talker. My daughter was a great non-verbal communicator. I always knew what she wanted and needed. These things reassured me there was nothing wrong. I would tell myself ‘The doctor said she could sing so she must be a late talker.’ Eventually, she stopped singing and I realized she was not a late talker. At the age two, she was referred to a speech therapist for an evaluation.

This was the day. The day I first really heard the word autism. On this day, I could not hide behind denial any longer. The speech therapist brought me and my sons back to the room. She told me the areas of opportunities my daughter had during the examination. Her diagnosis was both Receptive and Expressive Language Delays. After giving us the diagnosis, I remember the speech therapist asked, “I want to ask you, how much do you know about autism?” I felt a lump in my throat start to grow. My eyes tightened because, in fact, I knew a quite a bit about autism. In that moment, I simply replied with a head shake and a mumble. The speech therapist continued “I am not qualified to diagnosis her as autistic; however, she has the tell-tale signs of autism. Lack of response to her name, eye contact, and how she plays, just to name a few.” I knew all these things but I never truly acknowledge them. As the speech therapist spoke, the lump in my throat grew larger. It was so big I could barely speak. I ended the appointment with short answers. Slowly I moved the kids towards the door trying to escape. Once out the door, as fast as I could I buckle in the kids and stepped behind the car. I squatted down with a heavy heart and cried.

I tried to remain strong for the boys as I returned to the car with a big breath. On the way, home their dad called me to see how the appointment went. I broke down and cried as I explained what the speech therapist said in the appointment. Regretfully, I wasn’t strong enough to avoid crying in front of the boys.

My husband was the backbone, I need to make it through the rest of the year. The year was filled with evaluation after evaluation. Therapies started coming and didn’t stop. It took the whole year to get her official diagnosis of autism.  In that year, I struggled with the loss of dreams I had for a typical daughter. Weddings, grandchildren, college, proms, driving cars, and talking back were the many things I may not have with my daughter.  Oh, then there was the guilt. I read every article about possible causes of autism. I ran through my mind over and over what could have caused my daughter’s autism. At one point, I pondered the possibility of my own bad karma being passed on to my daughter. Not only did I feel guilty for her autism and fear that I may have caused it, but I also felt remorseful for overlooking all the obvious signs that she had autism.  As time goes by, I moved past the guilt and passed the loss of my dreams I had for a typical daughter. I focused on my daughter and her needs. My daughter’s love for her family taught her how to have fun and laugh. Her laughter keeps my mind focused on the goal of closing the gap between where she is now and where she needs to be in the future. Her happiness fills our home and we are better for it. I have no more expectation of what I am prepared for as a mother. Our little children are our lives, our breath, our love, and we live for them no matter what they throw at us.

Share in the comments below the first time you heard the word Autism.

 

12 Comments

  1. Hi Crissy, I, too, have a child on the autism spectrum. He was diagnosed with a speech delay at two years old. We started him in a special ed preschool with speech therapy. Finally, at age 9, we got the autism DX of Pervasive Developmental Disorder-Not Otherwise Specified (a mouthful, right? PDD-NOS for short). I may have shed a few tears, but mostly I was relieved at having a DX and something to work with instead of floundering around trying this and that. Today, my son is 25 years old, he is a photographer at a tourist attraction, has learned to drive, and graduated high school with perfect attendance for the last two years there. He still has moments where the autism comes through, but he has really adapted.

    Liked by 1 person

  2. This was so sad to read but inspiring to hear how you’re moving forward! Please don’t think it’s your fault, it’s a common condition and these things happen!

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  3. I know they happen. In fact, I tried to prepare myself for it. There is no way to when it’s​ your child. We are in a really good place now.

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  4. Any child is a blessing from God and it’s important to keep in mind that nothing is the will of chance. And I think that God choose the most loving and powerful woman to take care of his autistic children. She’ll have a bright future despite her condition.

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  5. Any child is a blessing from God and it’s important to keep in mind that nothing is the will of chance. And I think that God choose the most loving and powerful woman to take care of his autistic children. She’ll have a bright future despite her condition.

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  6. I do think of my baby girl as a blessing yes. I am afraid the idea of our Special Need Angels only have women who care for them is not all true. About 20% of kids in our US Foster system have Special Needs.

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  7. I can imagine a situation when taking the decision to let a special needs child in foster system because there is better than home, is the correct decision. It takes love and power to recognize that your child might be better in foster system than home.

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  8. This was really honest and lovely to read. Autism wasn’t something I ever learnt about as a child, and I think I only started hearing about it when I was about 15. It’s terrible, I think everyone should be educated about it at a young age so that there’s no stigma surrounding it.
    Jas xx

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  9. Chrissy, thank you for sharing your and your daughter’s story with us. I must say, you sound like a remarkable mom.
    What I am going to say might be only theory and it’s coming from someone who has no experience in motherhood or autism so feel free to ignore it if doesn’t make much sense.
    here’s what I have to say – She might not have a 100% normal life but as long as she has a happy life, there is nothing to be sad about. We have our own definition of happy, her’s might be different from us, same with difficulties, her difficulties will be different from us, but I have no doubt that under your care she will grow up to be a strong woman and have a full life by her definition, that’s all that matters.
    A happy life is way batter than a normal life anyway.
    Love,
    N

    Liked by 1 person

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