Posts Tagged ‘isolation’
It’s the Isolation That’ll Get Ya
For me, as a mom, the isolation has always been the hardest part. We couldn’t go anywhere. And I mean anywhere. We couldn’t go to birthday parties, parks, movies, restaurants, Christmas dinner at a friends house, the grocery store or Target. We couldn’t go to gas stations or parades or swimming pools. Parents of older kids told me to keep trying. Keep going. Keep practicing. Leave if it doesn’t work. But it wasn’t the easy. I couldn’t get him out of the car. I couldn’t get him in the building. If…
Read MoreI am a Different Person Since my Son’s Diagnosis
I am sorry I do not return your texts or phone calls. I am sorry I have to cancel last minute or do not make plans as I’ve promised. I’m sorry I am not the same person. Since my son’s diagnosis and his other medical issues, I am not the same person. I have noticed I have lost my spunk. My life is so chaotic. I feel my life is consisted of being on the phone with insurance or doctors. I am traveling to different therapies, five days a week.…
Read MoreWe won’t be Silenced
Severe autism, level 3 was my son’s first diagnosis. But I’m not supposed to talk about it. Severe learning/intellectual disability was my son’s second diagnosis, I’m allowed to talk about this one. Most children with this level of autism have very complex issues and learning disabilities. You can talk freely about most disabilities and special needs without being shamed. Autism is not one of them. Some severely autistic children will live at home forever, or in a residential home. Some severely autistic children will still need help with all of…
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 MoreFinding My Independence
We lasted 15 minutes at our neighborhood 4th of July celebration tonight. He didn’t even see a firework. His anxiety has been high all week, I knew better. I feel guilty for taking him but know I would have felt guilty if we didn’t attempt to go. I hugged my dude and put him to bed. He loves bedtime flashlight story time. He doesn’t even care he missed the fireworks. Yet I’m back in the sorrows tonight. It’s so crazy how up and down it all is. There are no…
Read MoreI Knew it would be Hard, Just not this Hard
When my son was diagnosed with autism five years ago, I knew we were in for a challenge. And I don’t just mean the fight for services or supports, I just knew my little guy was a pistol. At that time, he didn’t sleep. At all. He was up all night and started our day around 4 am. I also knew that he hated all foods. And refused to eat almost everything. I knew he couldn’t communicate. And refused to participate. I knew everything was a fight. He refused to…
Read MoreThe Parts No One Talks About
There are parts of autism that the world simply doesn’t talk about. The ugly parts. The scary parts. And the sad parts. No one talks about physical aggressions or self injuring. Or fecal smearing. Or even what happens to nonverbal, severe kids when they grow up. And I don’t just mean age 20. I mean age 60, long after their parents are dead. Do they go into nursing homes? Who cares for them? Instead, we hear about the beautiful parts of autism. And the dramatic ones. The newsworthy ones. You…
Read MoreIt’s the Isolation that Got Us
My son is starting to communicate. It’s almost unbelievable to me. If you would have told me a year ago that my son would even attempt to say words I wouldn’t have believed you. If you would have told me two years ago that he would be potty trained I also would have probably laughed at you. Not because he isn’t smart and amazing. But because it just seemed so impossible at the time. But I was wrong. He is blowing us away lately. He has started dressing himself. He…
Read MoreHow do I Change the World for my Son?
Lately, my son has been having some pretty huge wins. Ginormous actually. He went down his first waterslide. He laughed and flapped the whole way down. And then went five more times. He bowled. All ten frames. I had no idea he even knew what a bowling ball was! He went to an arcade for the first time. He’s never set foot in one before. He never melted down. Or bolted. He just wandered ‘closely’ by while his brother played games. It was amazing. He went to a sit-down restaurant.…
Read MoreTopics We Don’t Talk About
I’ve been trying to find the words for a few days now. But coming up empty. I’ve been processing. Trying to understand, justify, explain and fix. But I haven’t been able to do any of those things yet. Instead I’ve felt sad. And ashamed. Worried. Confused. There are no child development books on this. We’ve entered a new stage of development. Hitting. It’s happened twice now. Fast. Quick. Out of the blue. His hands. My face. And I’ve quickly learned it’s a taboo subject. Parents don’t talk about it. We…
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