Posts Tagged ‘autism and siblings’
6 Things I Never Need to Hear as a Mom to a Child With a Disability:
6 Things I Never Need To Hear Again As A Mom To A Child With A Disability: 1. Have you tried… For some reason people who have never have had the experience love to tell parents of children with disabilities how to get their kid to sleep, eat, behave, etc. For the record, I’ve tried anything and everything you can think of and some things you probably can’t. 2. My neighbor, sister, second cousin twice removed had _______ and now is a doctor, lawyer, ruler of the world. Excellent. Glad…
Read MoreOur Coop’s Troop Sensory Santa Event
Last night was one of those really special nights. Our family, along with 20 or so other families, spent an evening with Santa. Some kids lined up chairs. Another watched an old 1950’s train docu-series on YouTube. One young man used his speech device to ask Santa for a horse. Another young man wore noise canceling headphones the entire time. Some kids sat near Santa. Some led him around by the hand. Others just waved. One little girl was dressed up in a tutu. Others in Jammie’s. My son wore…
Read MoreOur Deaf Sons Magical Experience with Father Christmas
We met Father Christmas and what a lovely experience it was! As with most things we do it was not easy, nor was it perfect, but it was amazing! Charlie struggled at times, he didn’t understand the walk through to the grotto. He did count the elves and he said hello to the owls but it was quite overwhelming. At times I felt that familiar feeling of being out of control. I wondered if we’d made a mistake and I worried we were ruining the experience for the other family…
Read MoreThank You For Seeing My Boy
A few weeks ago, my husband and I sat around a table with five educators, and four on zoom, discussing our son’s education. He was starting at a new school. Mid year. The one he was at prior didn’t work out. I will be bold and say he wasn’t wanted there. He wasn’t liked. I could fancy it up and put a bow on it…but, well, why… As we discussed the transition, and it came time for me to talk, I said… “I don’t care about educational goals right now.…
Read MoreYou Have Not Failed
I had the honor of meeting with a doctor a while back. A very important doctor. I was telling him all about my Cooper. What we’ve been through. I started at the beginning. He didn’t sleep. Not ever. Everyone told me it would get better. They said I was exaggerating. Only I knew I wasn’t. I told him it took Cooper six years to sleep through the night. And even today, it’s still a struggle. I told him about the burst ear drums. One after another. How no doctor would…
Read MoreA Letter to Our Autistic Son
Many times when someone thinks about autism they think of it negatively. But I want to talk about autism in a positive light. I want to talk about what our son’s autism has taught us. Dear Sully, We wanted to write this letter to you, my beautiful boy, letting you know just how much you have changed our lives and the things you have taught us. You have made us more compassionate towards others. You have shown us the ability to not judge others because you never know what struggles…
Read MoreCommunication Does Not Have to Be Verbal
My son Cooper is nonspeaking. I know that’s a confusing classification. I even sometimes struggle to explain it. See when it comes to autism, and the spectrum you hear about, the waters are often muddy. He said his first word at age 8. It was mom. Now he says it no less than 50 times a day. But he couldn’t tell you his name under pressure or if he is in pain. He can’t use the phone but he can type the name of his favorite movie into YouTube. He…
Read MoreHelp Her Understand What Kind of Day She Had
I just want things to be right for her— I don’t care if she has hard days or sad days because that is part of life it’s part of being human and growing. But I want her to be able to tell me— I want her to be able to know for herself, what kind of day she had. I want her to know what she is feeling— Imagine not only carrying the weight of your feelings but not being able to understand them— not knowing why you are scared…
Read MoreHe Had Never Once Asked for Something
My son Cooper was 7 years old when he first asked me to buy him something. Imagine that. 7 years it took. Prior to that he had never once asked me for a toy or movie or game. We were standing in line at Target and he saw the movie Cars on the shelf. He pointed. He gasped. He jumped. He may have been nonverbal but there was no doubt what he was asking. We watched Cars for weeks straight. He even slept with the dvd. His twelfth birthday is…
Read MoreBeing The Mother, I Never Imagined I Would Be
Ever since I was a little girl, I wanted to be a mother. I started writing names down that I wanted to name my kids. I began thinking about what sports they would play. Planning playdates and birthday parties. I had my whole motherhood planned out by a young age. I never dreamt of having a child who possibly would have special needs or be considered medically complex. Being the mother, I never imagined I would be. My dreams for my children have changed from when I was a young…
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