Autism then Vs Autism now

I don’t know why but today I keep thinking about how our journey began and how my knowledge of autism has changed over time.

I remember vividly picking up my little boy from his childminders, he would’ve been around 17 months old at the time . I was at the doorstep collecting him and he kept crawling off. The childminder was telling me how she couldn’t put her finger on something and was giving examples of some of his behaviours. She wanted a health visitor to go and observe him in her setting. I’d heard her throw around the ‘A word’ a few times so I asked….

“What are you trying to say? Do you think he is autistic?”

That was the first day I’d ever used that word about him.

It rolled off the tongue easily and I had no idea what it meant. Well not really. Back then, I imagined it meant my boy was geeky, that he would have a quirky way of lining everything up and that he would sail through school because obviously he would be super intelligent and have super mathematician skills etc. I imagined it would somehow make parenting easier because he was going to be uber clever.

I didn’t know then that by almost 5 years old, my boy would still be non-verbal, he wouldn’t be able to dress himself, he would be doubly incontinent and he would need to attend a specialist school as a mainstream school would be an horrendous experience for him. I had no clue that it would still be pot luck of he slept through the night and he would need medicine to allow his body to switch off and fall asleep. I had no grasp that he wouldn’t do all of the things that, as a parent I took for granted. For example, roll a ball back and forth to me, play dressing up, pretend shops, do a jigsaw and other such games that his peers were able to do. Autism didn’t mean that we couldn’t go to the park with friends or enjoy a picnic or take a leisurely walk out, did it? Doing exercises to help with sensory overload and to try and keep him grounded in the world were as alien to me as meeting ET.

I never knew that I wouldn’t be able to get a regular job, do regular things with regular people (at least not without constant eye rolls and judgment about my poor parenting).

On the flip side, I never knew that I would love my child so fiercely. That I would saviour every kiss and cuddle from him and that we would celebrate even the smallest of victories. I had no idea that I had such fight in me to get him access to all the services he needs and I didn’t know then that a boy 30 odd years my junior would be the person to make me a better, kinder and more compassionate person.

Back then, when those words rolled off my tongue I had absolutely no idea that if he was, and indeed is diagnosed autistic that it would impact every single decision we make. Just think about that for a minute. I’m fairly confident that some friends and family may think we add a cherry on top for special effect but we absolutely don’t. And we still have so much to learn.

Our autism is everything I never thought it would be, and more. It’s hard /it’s easy, it’s love /it’s hate. It’s unconditinal. Always.

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10 thoughts on “Autism then Vs Autism now

  1. Shaily

    This is such a heart touching post. I appreciate your bravery in explaining the challenges you have faced and i’m impressed with the way you’ve embraced those challenges. The sacrifices you’ve made for your son is an example of the selfless love parents have for their children.

    Liked by 1 person

  2. Citrus & Sun

    So many should read this article. You did a beautiful job writing this and I applaud you for your bravery and strength. As a Kindergarten teacher, I have had a few students with autism in my classroom and the love and compassion I’ve had for them has been huge. You are an inspiration and I will definitely be sharing your post!!

    Liked by 1 person

  3. I really dont know what to say after reading this. I am moved. I couldnt imagine all your sacrifice for your boy. I pray to God that He’ll give you enough strength and good health so you can take care of your boy. I will be praying for ur son as well. Hugs to you

    Liked by 1 person

    1. A Life Less Ordinary

      Thank you. He is the happiest most carefree boy I have ever met. It makes the difficult times bearable. He is beautiful x

      Like

  4. This is so moving. I didn’t know much about autism or the special needs community until I was in high school. One of the pastors at our church, when I lived in Ohio, learned their toddler was autistic and he shared the news with the church during a sermon. It was a growing experience for all of us as a community and as a result, the church developed a program for special needs families in the area. Once a month, we opened the church for a “date night” for parents of special needs children. It was completely free and they could drop off their children (their special needs child and any other siblings) for three hours to go have a date and pour back into their relationship. All of the volunteers from the church were background checked and went through a weekend training to learn how to better serve special needs individuals. Then each volunteer was assigned to a child for one-on-one care and they tried to keep them paired with the same child in the months moving forward to provide consistency and bonding for the families. We had different sensory activities and rooms set up, as well as a peaceful room for children to go if they began to feel overstimulated. It grew so much over time and many people and companies donated their time and resources to make it special for the kids. It brought the community together in a way that helped educate people about what a gift the special needs community is to the world. I think so often people avoid interacting with things that they don’t understand, which is sadly why so many people lack patience and understanding for the special needs community. I volunteered every month throughout high school and became close with the family whose little girl I watched. It was a privilege for me because it helped open my eyes to how much love and value special needs individuals add to the world and that we really aren’t as different as some people might think.

    Liked by 1 person

    1. A Life Less Ordinary

      Reese this is AMAZING. Thank you so much for sharing, it’s uplifting and a wonderful thing your community did. If only more were like that! You’re definitely right, people are afraid of people who are different, I’m so glad you embraced it x

      Like

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