Posts Tagged ‘severe autism’
I Don’t Know How You Do It
I don’t know how you do it. Those seven words grate on my very last nerve. What do you mean how do I do it? Isn’t that what a parent is supposed to do? Isn’t that our #1 job? When I entered this parental world, I never imagined it would be like this. I never knew such a deep love and sadness all wrapped in to one. I never knew Autism. Autism knows no bounds. It ravishes your life piece by piece. Autism takes away so much. It takes away…
Read MoreI used to Say I was Broken
I don’t think I will ever be able to put into words how hard autism hit me. And I don’t mean the word. Or the years up to getting the diagnosis. Yes, that was all hard. There is no doubt about that. The realizing something was off. The no sleep. Struggles to get him to eat. Or play. Or be content. Or go anywhere. Or acknowledge people. Well-child visits to the doctor where I could see milestones slipping away. The realization he was nothing like other kids his age. Or…
Read MoreTurning Invisible
I remember when my son and I turned invisible. It wasn’t fast. It wasn’t overnight. It happened slow at first. And then one day, I felt like we were gone. There were no playdates. No conversations at Kindergarten drop off or pick up. He wasn’t involved in sports or clubs. His interests never changed. No new hobbies. No hobbies at all actually. He’s never had a birthday party invitation. Time was a continuum. No start or stop. No new grade levels. No spring, summer or fall activities. If we went…
Read MoreWhy Parents of Kids with Special Needs Stay Silent
As parents of kids with special needs we know our lives are different than most. Our highs are higher and our challenges are more significant. While our peers are registering kids for sports we are arguing with the insurance company about the cost of a stroller. Or trying to figure out a new behavior. We are getting babysitters for teenage kids and researching a new medication. We are putting up door alarms and trying to balance the world of special needs with the typical world. And we are celebrating our…
Read MoreSomeday you will Leave Sweet Boy
On particularly emotional parenting days I’ll watch them sleep. Sharing a bed. Neither one acknowledging the other one until bedtime. 8:30 will roll around. Sawyer will still be in the backyard hitting baseballs or riding his bike over a jump with his friends. Like clockwork, Cooper will look around, grab his blanket with one hand, put his other hand on his check to mimic sleeping and say, ‘SSSS-AH-ER.’ ‘You want Sawyer buddy?’ He’ll say yes and point upstairs. I typically take him up and get him ready for bed while…
Read MoreI had Plans for us Kid
I had plans for us kid. Big plans. Plans that I can admit didn’t include autism. I was going to be one of those moms. The super involved moms. You were going to be in sports. And have so many playdates and friends and birthday parties. We would have couple friends. Who had kids the same age. You were going to say the darndest things. Of course be adorable. And then handsome. And smart. We were going to travel. And be really, really busy. We would have endless conversations and…
Read MoreWhen Forever Hits You…
I just went for a run. My first run in years. It was terrible. 85 degrees out. Sunny. No breeze. I ran for 30 minutes. I didn’t stop. I cursed myself a few times. I’m 36. And I let myself get this out of shape. I used to run. I used to exercise. But then life got too hard. Too busy. My legs felt like concrete. I was going so slow at times I waited for people to pass me. But I did it. I didn’t make any excuses. Like…
Read MoreWhy is he the Hardest One?
‘Mama, I want to get a bait caster. It’s for fishing. Then I can catch huge ones like dad.’ Pause. Silence. ‘Mama, when you chew gum and then drink water, does it feel weird in your mouth?’ ‘Sometimes I guess.’ ‘Yeah, I don’t like it one bit. Maybe I won’t chew gum anymore. But I like gum. Maybe I won’t drink water. Yes, that’s a better idea.’ Giggle. Pause. Silence. ‘Mama, what is 6 plus 6?’ ’12 buddy.’ ‘Oh, what’s 12 plus 6 because that’s how many bait casters that…
Read MoreI Will Not Miss my Son’s Life being Sad
There are a lot of things I allow on this page. Healthy debate for one. Constructive, respectful criticism for another. Why? Because that’s how we all learn. We only know what we know. And let’s be honest, most of us are living in parenting bubbles. I am not at an expert parenting level yet, even with three boys. But, there is one thing I do not allow. It’s pretty simple really. It’s criticizing the value of my child’s life. Or any other life for that matter. Autistic or not. Sick.…
Read MoreSawyer, My Brother and your Brother are Both Autistic
A few weeks ago, Sawyer received a handwritten letter in the mail from a boy named Dylan. He is 13. He has a brother with autism too. I sobbed when I read it. This little boy’s letter started a conversation I have been so desperately wanting to have with my son. Thank you Dylan and his mom. Take a read. Dear Sawyer, My name is Dylan and I am 13 years old and live in Texas. My mom watches your mom on the computer. She told me about you and…
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