Posts Tagged ‘severe autism’
It’s not Failure to Need a Break
Are you a parent? Have your children ever been out to play themselves, played alone in their room, had a sleepover, went out with a relative? For me none of these things are possible. My son is severely autistic. He is ten years old but still fully incontinent and has no spoken language. He is developmentally around the age of 12 months and he needs round the clock care. He doesn’t have friends to play with either in his own home or elsewhere. There’s no sleepovers in his world, or…
Read MoreIt’s Not Okay to Vanish
Hey friend, It’s been a while. A few years to be exact. I know you are still married. Kids are good. I see you travel a lot. And you love your job. You are always doing something. Funny, I don’t recognize any of the faces in your photos anymore. Anyhow, I wanted to reach out and say a few things. Clear the air I guess. We are both grown women. We are mature. We’ve both come a long way. So, I think it’s time. I know that Cooper’s diagnosis made…
Read MoreThe Dreaded Cycle
Oh it’s the dreaded cycle again. My son you were doing so well just yesterday. Then today you wake up and our nemesis is back. I hope you know I really dislike you! You take away my sons smile and give him tears. You take away his appetite and give him belly aches. You take away is sleep and give him anxiety. You take away his health and give him illnesses. You take away his school/friends and give him inclusion. You take away is laughter and give him meltdowns. Sometimes…
Read MoreWhen the Milestone Emails are Wrong
When I was pregnant with my first son, I signed up for all the groups. The Bump. BabyCenter. What to Expect when you are Expecting. I wanted all the information I could get my hands on. I was so excited for his arrival. And I wanted to find moms like me that I could connect with. I also wanted to know when my little dude would reach his milestones. When would he roll over? When would he sit up? Crawl? Say his first word? Be potty trained? These websites were…
Read MoreYouTube Safety and Autism
Most kids love YouTube. And many autistic children really, really love YouTube. My son loves the never ending stream of Barney and Thomas videos. He loves the music and the variety. He can easily move from trains to Daddy Shark. And honestly, I’ve never really worried about it. Jamie or I are always near him. We monitor what he watches. We listen. And even giggle when we hear Barney speaking in German or Spanish. But unfortunately, some frightening news is surfacing about the platform. The same things that make YouTube…
Read MoreBut I Want for Something
Jamie and I had one of those weekends as parents. You know, one that just depletes you. Where you wave the white flag, but quickly realize no one seems to care and that you are the adults and you just need to survive. We have a sick baby. A really, really sick baby who isn’t sleeping. Sawyer had three hockey games. That I had to miss. Which made me feel terrible. Cooper’s anti-anxiety medication seems to be leveling out again. Just like everything else we have tried over the years,…
Read MoreThe Lucky Mom
While walking through the grocery store, I recognized a mother and her daughter, about 10 years old, chatting and shopping together. I knew the mother years ago when her oldest daughter, now 19, was friends with my oldest daughter. They met in first grade and became instant friends. A few years passed and this mother and I were pregnant at the same time. We both had baby girls just a few months apart. I remember my oldest commenting about how the two baby girls would naturally play together someday. This…
Read MoreThank you for Trying Kid
I used to think the measure of success was completing something right. Perfection. I thought that in order to win, or succeed, you had to nail it. Do it by the book. I thought that was the goal. Success. That all changed after I had you kid. You showed me that there are many, many ways to achieve success. I want to thank you for that. A few days ago you tried jello and whipped cream. For the first time ever. Your brother was having some. And you noticed. I…
Read MoreDropping My Best Fake Smile
Some days, most days actually, I am happy. Like, really happy. Why would I not be? I am blessed beyond belief. I have three amazing kids and a wonderful husband. My family is healthy. So am I. We do not lack for anything. I recognize our blessings. And I am thankful for them. But my life, by most people’s standards, is hard. It’s loud. It’s chaotic. It may appear as if I am drowning at times. Or like I’m barely keeping my head above water. It also may appear that…
Read MoreWho will Care for my Son after I’m Gone?
If you ask any special needs parent, they will tell you that their number one fear is worrying about who will care for their child after they are too old or die. It’s mine for sure. I have spent countless hours staring at my beautiful, innocent son and worrying. When I wipe his face. Or his bottom. When I wash his hair in the bathtub. When I walk him across the street or through a parking lot. I worry. He is 8. He needs constant supervision. He will most likely…
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