Posts Tagged ‘Special Needs Parenting’
Somewhere in the Middle Of Hope
Most days you can find me somewhere in the middle of hope at the intersection of not knowing what I’m doing nor where I’m going. This is the life I’ve grown accustomed to-the autism life. Covid-19 isn’t my first “new normal” receiving an autism spectrum disorder diagnosis for my son three years ago was. In an instant our priorities and responsibilities changed, our entire world was rocked as we knew it by autism. My son Stalen was diagnosed on the spectrum at twenty-one months. He is considered non-verbal. Today, he is a…
Read More“You Need To Calm Down”
Yesterday I decided we needed to get out for one last summer weekend…take a chance with masks, and take a chance with the world. Going out is never simple. Johnny’s mood, my mood, his little sister’s mood, are all factors. For Johnny it’s the hardest, he finds the world difficult. It’s uncomfortable and unpredictable. We went to an outdoor mall that has a farmers market in the summer. As always, there were ups and downs but it was good. We bought veggies and treats. We wandered and spent time together.…
Read MoreSilence
Early this morning, I took my middle son, one of the twins who is Autistic, with me to run some errands. I did my usual commute to town which is about thirty minutes away. I went through the drive thru and grabbed an iced coffee, went to our pharmacy for medications and then I grabbed some breakfast. As I was in the last drive thru for the morning (which was crazy long), I started to ponder to myself… Wow it’s so quiet in this car. I thought back from home,…
Read MoreI Hear You, I See You, You Are Strong
I hear you. I see you. During the pandemic my son with Autism has really regressed. Oppositional Defiance Disorder has come to live in our home and it in itself, can break you down. From the second my feet hit the floor I am on high alert every second of the day. I don’t shower without another adult to watch him, I can’t use the restroom unless he is with me and you NEVER turn your back. I did that for three seconds last week and it ended in a…
Read MoreDo You Ever Wonder?
“Do you ever still wonder what he would be like if he didn’t have Down syndrome?” She asked. It was an honest question from a new friend. She is several years behind me in this journey of parenting a child with Down syndrome. I vividly remember being where she is now. I remember feeling like the odd one out amongst family and friends- I was the 20-something who had a child with a disability. I watched as their children hit the milestones at the appointed time on that now dreaded…
Read MoreBig Changes
Things have a way of changing rapidly in our world. Today, this amazing kid started school. The same school as his brother. He is in 4th grade. I never thought this would happen but we got a little nudge from the universe. And it turned out to be a good one. I cried. His dad cheered. His brother was so excited. And he was too. He dressed himself, put on his own backpack, let me gel his hair, negotiated how many treasures he could bring to school, and made his…
Read MoreOur Secret World
Happy Sunday from this kid. We’ve had an interesting day. He asked me for a train guide from 2007. I told him I’d do my best but reminded him that he was most likely setting me up for failure. He asks me for the most obscure things. He had faith in me though. I know because he asked me well over 100 times. He also asked me to go shopping. And for amazon. And paper. And Target. When the Amazon van drove by I knew we were in trouble. I…
Read MoreA Perfect World For My Son
I think a lot about the things that make this kid happy. And bring him joy. Because for a lot of years, the list was pretty small. It’s gotten bigger though, thankfully. If I was to build a world for him, one that was entirely for him…what would it look like? Well, it would be full of color. Bright reds and blues and yellows. Our clothes would all be bright too. Our houses and the objects inside as well. Music would always be playing. Happy, fun, LOUD music. We would…
Read MoreTo My Son’s Hopefully ‘Never Needed’ Caregiver
Have you written a letter of intent yet? It is a letter written to the person who will take your child if something happens to you. Here is mine… To whom it may concern; Except you’re no random person. You were carefully and specifically asked to take on this huge responsibility. It will undoubtedly be the hardest thing you’ve ever done as it has been for us, and there is an immeasurable amount of gratitude and thanks to be given to you. But I’m sure that’s already been taken care…
Read MoreToday Was A Good Day
Many of you have reached out and asked how Cooper is doing. Thank you! He is amazing. He is struggling but he’s coming out the other side and that is what matters. He works hard to be in a world that doesn’t always understand him or make sense to him. And that’s amazing. The last two weeks have been all hands on deck. But the last two days have been happier for him. And that’s what matters. Today was a good day. Today he snuggled with his grandma and watched…
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