Tag: Autism

12 years later…

My oldest didn’t have a haircut by anyone -but me, until he was older. Maybe 7. It was stressful every time. He grew his hair long in between cuts because he dreaded it. We tried all sorts of salons, found one hairdresser he liked but she stopped during the pandemic. Even still, she never should cut around his ears, close to his neck, etc. the clippers are still a firm NO GO ZONE.

However, as I sat watching my suddenly big boy, already a teen really, almost my height…getting his hair cut for the 2nd time by his wonderful hairdresser, I heard her explain every part. Ask permission and for his input on style. She treated him like a regular 12 1/2 year old and respected his unique needs. The end came and she explained she wanted to take her small shears and trim a little bit around his ears…

I held my breath…letting him practice self advocacy. He always, always, has said no. Usually in a slightly panicked voice, full body tensing up. This time he said alright, he put on a brave face, his only tell was the sudden stiffness of his entire body -along with eyes grown wide as a deer in headlights. My whole body tensed with him, he could not see me, thank goodness. She did it. He let her. It was nothing short of amazing!! He had a complete haircut, neck, ears, and all!!! My eyes suddenly welled and when she asked what I thought, I apologized for my emotional tears now falling over my cheeks. Big smile of pride on my face!

“Why are you crying Mom?”

“Tears of joy love, tears of how proud I am of you for braving the hair trim around your ears”

I held his face in my hands and told him it was the best cut he’s ever done, that I was so proud of him, and asked him if he felt good about it?

“Yeah, I was a bit nervous but I still let her do it!” His own pride filling his face with a smile. “Now can I have a lolly pop?”

Heck yeah!

I floated on that high for a couple days. My pride overflowing with amazement. he has done it, finally!!! Another tick off the list! Another achievement, small to some but huge for him!!

Long time lots of Developement!

It has been a long time. COVID lockdowns behind us. Kiddos returned to school. My parents have passed away, my kids had to learn that Daddy can take care of them too. Schools back in session. No more masks! New schools! So much has happened, too much for one post. Grief kept me away for so long, but I feel ready to return. To share our journey, in hopes it shines a little light.

My youngest was transferred after much advocating, to a specialized autism school. The district pays tuition as it is a NPS (non-public school) placement and they could not find a way for him to access his education within the public realm. By law they must. The last straw for me, was when I found out that he was being walked around the campus all day, not doing any work, to prevent “behaviors.” Emergency IEP meeting was called.

It was the middle of the school year in 2021. My mom had been diagnosed with cancer.

Over COVID lockdown, I had to tutor my son myself via zoom classes. He could not sit unassisted. He has severe autism. During that time I figured out he was capable, he was smart. He did the entire zoom days work in 30 minutes each morning. I requested more difficult work, got barely an upgrade so I supplemented.

Upon returning to the old public school, he was still doing ABC’s and site words. No math. So frustrating! He’s been doing that for 3 years! He was bored. Thus, the much needed transfer to a NPS.

Jump to current time. He is thriving!!! He is reading books instead of ABC coloring pages! He does math, up to 2 digit addition and subtraction. He participates in all activities. Sure, he gets breaks, he has moments of struggle, but they make room for it all. They teach him, he learns! His speech, being a non-verbal kiddo, has also come leaps and bounds. He is still not conversational, but boy he likes to chat!!! Loads of scripting still, he’s a functional script user, but novel language is emerging more and more. It is so incredibly exciting, sometimes I cry silent tears at night while I cuddle him to sleep, so grateful to hear him say “love you” spontaneously. So amazed at his development in such a short time. Mostly, I am grateful he is happy. He is a smiley, silly, happy kiddo. Finally. He just turned 10 in September. To think where he was a couple years ago, I am filled with pride and relief that all the fighting, all the advocating, has paid off.

Morning madness

my morning began with 5:30am wake up call from my 5 yr old. He was screaming (yes, I said screaming), his brother’s name. However, thankfully, this particular morning, A. was in our room sleeping after falling asleep reading his favorite books last night. So I leapt out of bed and ran to quiet G. He was wet and needed a nappy change. But he was also awake and that was that.

So we got up! I made coffee, mixed his yogurt up with his medicine for constipation…just a part of our journey! He ate and I went to the bathroom while I had the chance. But no. Next thing I hear is G screaming A’s name in MY room to wake him!!! Leaping up, I ran into the room shooshed A back to sleep and directed G back to his yogurt. Then I washed my hands. Because things don’t always get done in the order you would like as a parent.

The morning went ok after that. Until. Always until.

Until G had to go catch his ride with the district van. “First socks, then Mack” I repeated. Finally he gets out the door and I head in.

I take a quick breathe in and exhale out mentally noting it could have been much more difficult getting him out the door…like yesterday when I had to chase him and pick him up kicking and screaming.

A is into writing which is a miracle!!! He’s trying so hard to write his own comics and draw his pictures. He focuses for an hour sometimes. He works on it between activities. He is proud!!! We are proud!!!

Until. First timer goes off. Need to brush teeth! Nastiness ensues as he is not ready to transition from writing and drawing in his book to the day ahead. I ask how much more does he need to do? Does it have to be now or can it be worked on after school??? Those of you who have ASD kiddos already know the answer.

I announce I’m brushing my teeth. Hoping to influence him. It kind of works. I hear him running to do just that a couple minutes later.

He’s proud of himself for this decision and I praise him. Then it’s second timer…socks and shoes time!

All is well and then…limping like he’s broken his toe he comes whining after me.

It’s not a broken toe, nothing is hurt on him. It’s the sock. It isn’t right. In the meantime, I e managed to cut my index finger quite deep and am trying to stop the bleed and throbbing whilst not passing out and trying to coach him into fixing this problem himself.

A little attitude but he’s discovered the problem! An extra long bit of thread! He wants me to fix it but I’m preoccupied with my finger. I tell him he can fix it himself. Just get his scissors out and cut the thread. He does. Then he keeps cutting other “loose threads” and before the words to stop are formed, he’s done what I knew would happen the moment I suggested he fix it himself!

Hole in his Yoda socks. I try to coach him, is this a big deal? Big problem small problem? What can we do?? Suggest a different pair of socks…it’s all too late. Meltdown has begun. Panic rising as the reality of his ruined sock sinks on and he begins betraying himself.

So the battle for him to put on a different pair begins. I try to remain calm. It’s so hard. My finger is literally throbbing and stinging and I have it over my head with ice and multiple bandages…putting pressure on makes it worse…he’s beginning gain momentum.

A new pair of socks are now in his mouth as he bites them in frustration because he can’t get these on himself so easily. He’s managed one but the other isn’t “right.” I try with one hand to help cinch up the toe but the second I touch him (barely) he’s screaming I’ve hurt him and accidentally pinched him. I have not. He saw this in his head happening though so to him it is real.

I walk away. He manages. Somehow. Then,

“I’m ready to go to school!”

I’ll spare you the chaos after that…in the end, we managed to get to school. He still gave me my hug and kisses…I could see the tiny fractures forming on his face that I know so well now. He was going to fall apart again. And again. Over everything and nothing. Today was going to be tough. He knows it too. He knows himself.

So I catch my kisses and smile as bravely as I can waving goodbye. I turn to go home. My own fractures are beginning to show. I need to get home and I need to fall apart. I won’t though. I rarely do. I keep going. I pick up the messes left behind. I throw away the ruined socks hoping he forgets them yet knowing he never will. Ever.

Most mornings are like this in some way. Minus the injured finger I have this morning.

This is just a glimpse of our life with autism. Some may think it’s my parenting…maybe…partially.