Archive for June 2019
Am I Doing the Right Things?
You know those moments as a parent where you question if you are doing the right things? I have them with all three of my kids. But with my son Cooper it’s times a hundred. The stakes are higher. The decisions are monumental. I want to help him as much as I possibly can. And in a way I often feel like it’s a race against time. But often, the things that will help him, the therapies especially, cause him so much stress. He also works so hard every single…
Read MoreThe View From Here
At 9 months old, I knew there was something different about Zachary. At 17 months old I took it upon myself to get him started in feeding therapy, and then shortly after early intervention. At that early point in Zachary’s life everyone tells you, “he is fine” … “he is a boy, they take longer to do certain things” and all that extra fluff. As a nurse I knew differently, and as a mom I knew in my heart. Zachary will be 4 years old in April, which also means I have been a mom for that…
Read MoreSeeing the Delays in Writing
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,…
Read MoreA Letter to my Son, High School Graduate of the Class of 2019
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…
Read MoreA Letter to the Doctor Who Committed Medical Malpractice
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…
Read MoreWould you be so Understanding?
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.…
Read MoreSeeing Beyond the Label
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…
Read MoreRollercoaster of Love
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…
Read MoreWill you just be my Mom Now?
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…
Read MoreJust See Him and Say Hello
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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