Jamie and I just came from Cooper’s Treatment Plan meeting. We do these quarterly. It feels like monthly sometimes. Today, we discussed his standard diagnostic assessments with cognitive testing. Man that is a mouthful. If you live in our world you know about the Vineland, the Behavior Assessment System for Children, the SDQ, The CASII, the Gilliam Autism Rating Scale and the Weshsler Nonverbal Scale of Ability. All of these are black and white standardized tests that are used to tell you that your child is autistic. In our case,…
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Dear Sean, Congratulations! You did it! My heart is filled with pride and happiness over all you have achieved and the amazing young man that you have become. Reflecting back as I look through old pictures and letters I have saved for you, brings back so many amazing memories I remember how you knew the names of all the Thomas trains and played with them for hours on end. You even took your favorite train to sleep every night! I remember the elaborate hot wheels tracks that you and your…
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I was born on October 20, 2001. My parents were expecting identical twin girls and my mom had been at the hospital, on bedrest, for the past 5 weeks due to an incompetent cervix. You were the doctor who consulted with my mom’s doctor. She had an infection in her placenta and you made the decision to take her off of the medication that was keeping the infection from spreading and keeping my sister and I from coming. She began complaining of contractions on October 19, but the contraction monitor…
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I found myself out today in the community with my six year old son and my baby. We were in a group of people. We were quietly sitting. And by quietly I mean Sawyer was bouncing off the walls and the baby was chatting up a storm. Just as kids should be. Busy and happy. It was lovely. The three of us out together. I’m stretched a little thin these days so it’s nice to get time with my kids. I found myself looking around. I found myself missing Cooper.…
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Honestly, my husband and I went into the autism clinic thinking that we were going to rule out autism for our twins. I went in with our son Aki and my husband went in with our other son Yuri. For Aki, the doctor wanted to wait to see what the IEP said at the school. She wanted to know a little bit more about the social skills before she made a determination. When I got out my husband was still in the office with Yuri. I already knew. Autism spectrum…
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When a friend asks me what parenting special needs is like I always try to be honest but I also hold a lot back. I want to share with them so that they can understand but also know that there are things they will never be able to wrap their minds around. Parenting a child with autism is a rollercoaster. A rollercoaster of emotions, of love, of off the wall stuff we don’t share and sometimes a loop de loop. It’s up, it’s down. It throws you in circles and…
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I remember distinctively being a little girl and being so excited to sleep in my mom’s big bed when my dad went out of town. It was such a treat. It was the best part of him going on a trip. My son Sawyer now feels the same way. Last night, as I was putting all three boys to bed, Sawyer said to me, ‘Mom, since dad is gone, can I sleep with you?’ I still had a dozen things to do before bed so I said maybe. I said…
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I’ve learned so many things on this journey of parenting a child with autism. I’ve learned that many people get scared of the word autism. I’ve learned that some people think my son is deaf because he’s nonverbal. Or that he can’t answer questions. I’ve watched people get nervous by flapping or his unique sounds. Or by his silence. I’ve watched people completely ignore him. Or they ask me questions for him. ‘Is he hungry?’ Which I respond with, ‘Let’s ask him.’ These aren’t bad people. They aren’t mean. Usually…
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A few years ago, when we started to notice that our other son Sawyer was feeling the unique stresses of having a brother with autism, I started taking him out for breakfast every Wednesday. No matter what we wouldn’t miss. It was our time to chat and relax and eat doughnuts! We both looked forward to it. I remember distinctly thinking…I’ve never done anything like this with Cooper. And I might never. My son Cooper had never asked me to go anywhere. He was seven years old at the time.…
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I guess you don’t remember when it was just you and me. A time before having a sibling to share the attention that you so desperately craved. We had two years alone together, you and I. We would read endless books together because it was your favorite thing to do. We would go for walks, to playgrounds, to play places, to restaurants. We were out in the world and we loved exploring it. I would marvel at each new thing that you learned. I would watch with a heart full…
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