Posts Tagged ‘severe autism’
Living With Self-Injurious Behaviors
One thing I’ve learned as the mother to an autistic child, is that when your child has self-injurious behaviors, you’ll never be able to describe the feeling accurately. I’ve also learned that if a person doesn’t know what you’re going through, you’ll never be heard accurately. Any time that I have thought I might open up and share the fear, frustration, sorrow and deep gut wrenching pain, I’ve learned that unless a person has lived it as a parent or caregiver, they can never understand. Sometimes you get even worse,…
Read MoreStop Worrying and Enjoy Your Child
Yesterday, there was a beautiful noise at our house. One that seemed out of place. One that we rarely hear. One that for years was hard to produce. It was the deep, loud, silly, belly laugh of Cooper playing in a pool with his brother and his brother’s friends. He was in there for three hours total. He was one of the kids. I have never seen a happier child. Or heard a better laugh. We are talking pure joy. As I watched him play, I was overcome with emotion.…
Read MoreI Still Would Have Chosen You
I stumbled across a poem on Pinterest today by Terri Banish. It is titled, ‘I Still Would Have Chosen You.’ I read it. And I read it again. And again. And immediately burst into tears. Every word was perfect. I used to talk about the hard parts of severe autism with strangers. At work. Or with someone I met out. These were nice people that didn’t live in my world. They had no idea. And while they usually were absolutely wonderful, they just didn’t understand. I’d notice as I was…
Read MoreSuccess with Headphones
I am a goal setter. I am a list maker. This is who I am as a person. Sometimes it drives my husband crazy. But, I think he will also admit how helpful it is. At any given time you can walk through my kitchen and see a list. Call social worker, complete paperwork, pay medical bill, make doctors appointment, etc. I also make lists with goals. Sometimes they are for Cooper and related to autism. Sometimes they are goals for our family. I even add the steps to achieve…
Read MoreIt Could Be…
Yesterday I picked up my son from therapy and I knew instantly that something was off. He was with his favorite therapist. The one he absolutely adores. As I sat in my car watching her come out of the building with him, I immediately noticed how he was darting a bit. He was pulling away from her. Waving his arms. And my stomach dropped. I knew right then. Something was wrong. I jumped out and greeted him the way I always do. Like I haven’t seen him in years. I…
Read MoreMy Son has Never Been a Burden
I received an email last night. It was from a disabled adult. She self identified that way. She told me that she feels like a burden to her family. She feels guilty. She feels sad. She feels awful for the stress her disability has caused her parents. She worries that her siblings resent her. She said she lies awake at night wishing she could make her parent’s lives easier. She feels like a burden. I read the email over and over again. And I felt like I’d been punched in…
Read MoreThe Never Ending Vaccination Question
Am I going to vaccinate my baby? Do I think vaccines cause autism? Did I vaccinate my first two children? I get these questions daily. Typically always from a sweet, curious mother. They wonder what I plan to do. Little do they know that I will never, under any circumstance, answer that question. Some parents hide deep, dark secrets. I hide my opinion on vaccines. Why? Because my answers affect the safety of my children. After my video went viral, people sent me pictures of dead babies. Actual photos of…
Read MoreDoes He Understand That You Are Pregnant?
‘Does Cooper understand that you are pregnant?’ I get that question all the time. Even more as my pregnancy progresses. My honest answer is I don’t know. I truly don’t. Maybe? Maybe not? In our house we assume competency. Cooper is a very smart kid. He is always listening. But, this is a tricky topic for him too. We talk about it every day. We include him in conversation the best we can. We point to my tummy. We are even going to buy a baby doll and start practicing.…
Read MoreMy Son, In the Moments You are Still
This morning I watched you sleeping. On a mattress. On the floor. Next to my bed. You were still. There was no sound. No silly songs blaring. No grunts or squeals coming from you. Just breathing. You were not moving. Your arms were not flapping. You were not running or rolling. You looked like an angel. Your body and mind were content. Seeing you still and peaceful Cooper is the most beautiful thing ever. The fact that you are near us at night is very new in our world too.…
Read MoreMama, I Don’t Want my Baby Brother to Have Autism
On Sundays we eat dinner at Jamie’s parents. Often, this is our only trip outside of our house as a family. We treasure it. We look forward to it. They only live 10 minutes or so away but sometimes the trips can feel like an eternity. I of course was sitting in the backseat with both boys. On trips longer than a few minutes, I often sit between them. One of Cooper’s biggest struggles is still vehicle safety. When he gets anxious, or his Kindle stops working to his liking,…
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