Posts Tagged ‘severe autism’
Controlling What I Can Control
On day three of Harbor’s life, he cried all day. He nursed and fussed. Nursed and fussed. He didn’t sleep for nearly six hours. At 3 pm, I broke down. Not because of exhaustion. Not because of the stress of nursing. Solely out of fear. I said the words aloud that I feared the most, ‘Jamie, he’s autistic. I know it.’ Jamie, the one who is always calm, always level headed, never emotional, said, ‘no he’s not.’ But I could see the fear in his eyes. At 5 pm, Jamie…
Read MoreI am the Parent of a Child with Autism
If you see me about and I look like I’ve had no sleep, know that you are not wrong. The last thing I want to do most days is plaster myself in makeup. I’m clean and I’m showered. My hair is slapped back and that’s enough. I bump into people I know and maybe some who I haven’t spoke to in a while and I know people mean well but I just need to explain something about autism. If you’ve met one person with autism you’ve only met one person…
Read MoreSaying the Words Out Loud
“I pray she’s okay…that she doesn’t face the same challenges as Leo,” I expressed to my Mom, a couple of months ago, as we were driving. Pausing for a moment, silence palpable as I bit my lip, hesitant to continue on…Afraid to allow my thought a voice… “And if she is okay,” I said, my words already cemented in guilt… “If she’s okay…maybe she can take care of her brother when they are older.” “I know,” my Mom responded quietly. “I know.” My sister, Victoria, has special needs. Growing up,…
Read MoreLove Needs No Words
“Don’t worry Sadie, you can hold your ears, I’ll always be here to help you.” These were the words I overheard my five year old Max say to Sadie as I was walking past the bathroom. She was holding her ears and needed help with her pants, without hesitation Max helped her and continued on giving her step by step instructions on how to wash her hands. He’s the brother that never wants to see her upset, he’ll step in to tickle her or make her laugh until she’s forgotten…
Read MoreSpecial Needs Parenting Under a Microscope
You know what I find to be the hardest part of taking my severely autistic son out in public…And it’s not what you think. It’s not the screaming. Or the meltdowns. Or the running or chasing. Or his anxiety. Or managing my stress on top of his. It’s doing it all under a microscope. The curious stares. The people. The knowing how loud my son is. Knowing what a scene we are indeed making. The praying that nothing really bad happens. The hyper awareness that is needed. The worry. It’s…
Read MoreMedical Cannabis Update-Week Five
I promised I would give a weekly update on our journey with medical cannabis for our severely autistic son. We are over a month in! We’ve seen amazing, huge, gigantic, breakthroughs. I am so excited to tell you all of them. In week one we saw a reduction in anxiety. In week two we saw improved engagement with his surroundings. In week three Cooper began joining our family in the living room, during meals and in the evenings. Jamie and I learned what it was like to sit down. To…
Read MoreAutism is Messy – The Cost of Independence
In these two photos, the photo on the left is a photo of the chair cushion where our autistic kid sits for his meals. The picture doesn’t come remotely close to showing the extent of the abuse this chair has taken. To give you a comparison, the photo on the right is another chair at the same table where others in the family sit. Yes. The two chairs are from the same set. And yes. The damage is clearly permanent. Our boy is thankfully a pretty good eater (praise God…
Read MoreYou are Not Lesser of a Mom (VIDEO)
I want to tell you about a feeling that I had for years. A feeling that still creeps up now and then if I let it. It’s the feeling that I am lesser of a mother because my child isn’t typical. It’s that feeling of missing out. It started when my son was very young. Right as it started to get really, really hard. I’m not entirely sure what made me feel that way. Maybe it was society telling me what a mother son relationship ‘should’ be like. Maybe it…
Read MoreThe Hugest Breakthrough
When your autistic seven year old, who has never once asked you to go to a store to buy something, asks you to go to the store to buy 10 Pokémon cards…you go. First time ever he has asked to go to a store yet alone to buy something. He has no concept of objects, buying things or even money. He’s a pretty simple kid. He knows no greed. Tonight, after finding his brothers cards, he asked us for 10 cards of his own. He has no idea what they…
Read MoreKeeping Autistic Children Safe (VIDEO)
Last week, a little boy, who is autistic and nonverbal, died. The story rocked the world of every parent who has a child with special needs. I shared a few updates as it was unfolding and was saddened to see the hate that emerged. Some comments were curious. Many were confused how this could happen. And everyone was heartbroken. I want you to know I know nothing more than you do. I know what I see on the news. That is it. But what I do know is the seriousness…
Read More