When he outgrew cute The looks changed from compassion to concernedTowards him And towards those who supported him. And sometimes disgust Overshadowed concern As he stubbornly clung to his ways. When he outgrew cute The calls increased Calls desperate for help Desperate for summer options for a fifteen year old in diapers Desperate for respite Desperate for adaptive equipment Desperate for anything that would assist a non verbal man child Or anyone. And the voices were silent Or they whispered Sorry.Sorry.Sorry. When he outgrew cute His movements were no longer…
Every day we wait outside for a package we never ordered. The days of quarantine are long, especially for a child with special needs. The lack of routine is brutal. I use it as a distraction. It is inevitable that the moment Zac and I step out of the family room we will hear the familiar screeching: Help! Stop it! I know at the bottom of the steps Jordan will be lunching for her brother’s neck so she can catch them for a passionate embrace. It would be enough to…
If you are reading this, there is a good chance someone you know has autism. Hi. My name is Carrie. I have five kids, and my second son, Jack, has autism. He was diagnosed when he was eighteen months old. I was a young mother with a three-year old, and a one-year old, and a tender new baby on the way. I had absolutely no idea what I was doing. The world stood still when the doctor said the words Autism Spectrum Disorder. That’s the only way I can describe…
It was a beautiful evening. The puppy needed a walk, Gracie needed out of the house, so we went to the park. It was quiet, only a few kids here and there. Gracie was enjoying the playground and running around. As she went around the side of the slide a little girl about her age said hello. Gracie stopped dead in her tracks. She didn’t say hello back, she didn’t wave, not even a smile. She froze, panic on her face as she tried to think of something to do.…
I have been on countless phone calls in my lifetime. There was a time in my youth where I loved getting all the phone calls on my birthday, relatives singing happy birthday to me on the other end of the line. There was a time in my teens where I loved getting calls from my friends. The type of calls that invited stretching the cord as far as could around the corner, kicking my legs up against the wall and gabbing endlessly. The time in my 20’s where I graduated…
Oh, quarantine and autism. You have been a doozy. You would think we would have embraced this socially distant period like all the autism memes suggested at the beginning of this lockdown. “We’ve been social distancing since before it was a thing!” No. These past few months at home have allowed regression to creep back in, distressing my boy at a whole new level. I knew it would, right when we said goodbye to his routine back in March. It was inevitable. Unfortunately, that expectation did not make these months…
Once upon a time, there was a boy who always said no. When he was very small and didn’t have his words, he learned to sign it with his fingers. When that didn’t work and his mother or his father kept asking him to try a bite of a banana, he simply clamped his mouth shut, and shook his head. No. Later he learned to talk—first one word at a time, then two. After a long wait, he began to string them together like bright lights on a wire. But…
A poem for my 16-year-old brother with autism: Neil Kurshan said, “Walk a mile in my shoes is good advice. Our children will learn to respect others if they are used to imagining themselves in another’s place”.But Mom, people cannot put themselves in my shoes, not unless they live it too.Friends and classmates use the words ‘weird’ and ‘autistic’ as if they’re the same.It hurts my heart and I want to get angry, but I continue to smile anyway.But I’m tired of smiling and I’m tired of changing the subject.So,…
Hi, my name is Kelly and I am the mother to an amazing young man named Steven. He was diagnosed with autism at age 2 and later apraxia. He recently turned 30 and is a dynamic, smart, interesting, funny young man. We share our story on Instagram at Growing Up Steven. Being a primary caregiver for the last 30 years has rewarded me with a few things: A panic disorder, depression, anxiety, excessive worry, marriage struggles, and at times, not the mom my kids deserved. I want you to learn…
Recently I took my son to a local indoor water park for a few hours. He loved it. I had a few very interesting social observations. One of the most obvious was how we, the parents of special needs kids, never miss a moment in our kids lives. We are ever present, hyper vigilant, (over bearing at times) and just stuck to them like their own shadow. I get to experience and watch 98% of every single thing my son does. It dawned on me when I was watching two…
