The Hardest Part

Hi guys! It’s been awhile. Things have been a little rough in the Pullen household the last few weeks. Ok, not a little rough, a lot rough. Like, a whole lot.

Bare with me. This is gonna be a long one folks.

You all know school is back in session. You all know that in the Autism world, we don’t like changes in routine. School is a change in routine, especially when there hasn’t been any in person school since March. I am so glad our school went with in person!

We prepared. We counted down the sleeps until the first day of 2nd grade. Both kiddos were really excited. To be honest, we were too. Brenly NEEDS school. She NEEDS structure. She NEEDS her Monroe (that’s her aide). Cayson needs it too, but for different reasons.

And, let’s get real. 2020 sucks. Everyone is ready for it to be over. I know there are a ton of issues across the globe. But, does anyone know what has gone on in the world of Special Needs since quarantine? I mean really know? Let me share a couple things with you.

Here is your warning: none of it is good.

Myka Stauffer and her husband (Youtubers) “re-homed” their child they adopted from overseas because he didn’t fit into their white picket fence world. He is autistic. They told people that a Doctor suggested they weren’t the right fit for him. In all of our years since diagnosis, no doctor has suggested that we “re-home” our child. Un-freaking-believable! They lied. And they exploited an innocent child. Oh and let’s not forget they have 4 other “normal” children.

A woman in Florida pushed her autistic son into a canal. Someone saw her and they got him out. She acted grateful. Then, she walked a little farther down the canal and did it again. No one saw it this time. The boy drowned.

A teenager right here in central IL was bullied by a group of kids. They decided to videotape it. It surfaced on Social Media. Physically, she is ok, but I cannot imagine how that girl must have felt and still feels emotionally.

There was an Autism challenge on TikTok. People were making videos of themselves “acting autistic.” Oh wait, it gets worse. Their parents did the same. It took some time and a petition to have it removed.

Just a few days ago, a mother of a 13-year old boy called police for help because her autistic son was having a mental breakdown. After a series of unknown events, the police shot him. A 13-year old boy! He is listed in serious condition.

I could go on and on. I just don’t know if my heart can take anymore.

Special needs parenting is hard. Really hard. And when all of these terrible things are happening day in and day out, it’s even harder. My anxiety has been at an all time high. I cannot take my eyes off of my children for one second, even if we are just playing in our fenced in yard. Yeah, it’s that bad. Guys, OUR FENCED IN YARD! If I’m not home, I am texting whoever is. I even text her aide at school to see how the day is going.

Oh yeah, speaking of school. Let’s get back to that. We prepare and prepare for weeks for school. We practiced wearing a mask. We talked about social distancing. We talked about germs and handwashing. We were even allowed to go up to the school one day to meet her new teacher, see the classroom and see how things would be different this year.

In March, before school shut down and the whole country shut down, Brenly was doing great. I posted earlier in the quarantine about regression. My biggest fear.

It happened. But not in the way I expected.

Brenly’s regression has come in the form of aggression. No parent really wants to share this. I hesitate to share it, but in the beginning, I promised I was going to be real, honest and vulnerable. I will keep my word.

This is the dark side of autism, the secret side. It’s not the scripting or repetitive behaviors. It’s not the difficulty with social situations. It’s not the stimming. It’s not even the difficulty of the meltdowns…except when they become aggressive. That’s when they become secret. Because no one wants to tell people that their child hit them. Then you get the ignorant, “She just needs discipline” or “You oughta whoop her butt.” It’s all because they don’t understand. They don’t live our world.

It all started on Wednesday. It was the first remote learning day of the year. It was supposed to be on Friday but for some reason was changed to the middle of the week. Yes, changed to right smack dab in the middle of routine. This Mama knew it wasn’t going to go well. Cayson’s homework was mostly on paper. Brenly’s was mostly online. No biggie, they do it at school. I worked Tuesday night and when I got home around 8, I could hear there was a problem the second I walked in the door.

Cayson was crying and Brenly was laying in her bed. My mom was with them. Brenly had hit Cayson for no apparent reason, or more likely there was a reason, we just don’t know what it was. My mom, through no fault of hers, was trying to get Brenly to say sorry while she was still upset. Rule #1: Do not try to get an autistic child to talk to you or anyone else mid-meltdown or even if they are just upset. They need to regulate first and you can talk later. I had mom take Cayson to start on his school work and I stayed with Brenly.

This was just a normal “Brenly is upset, I can fix this” type of problem. When you are a special needs mom or a mom in general, you learn real quick how upset your child is by looking at their mannerisms. So, I changed the subject. We played tickles. Less than 5 minutes and she was good. Then we talked about how hitting is not nice and she apologized to Cayson.

I got her started on her homework and I went to bed. I had to work Wednesday night too. Kids were pretty good for my mom. They played outside and were pretty quiet so I could sleep. I got up around 3, took a shower, got ready for work and then we had a little time to hang out before I left. Brenly started crying seemingly out of nowhere. She missed school. She missed her friends and she wanted to go RIGHT NOW! I explained that she would go tomorrow and after a few minutes, she was good again but I could tell she was teetering.

Phil got home, we chatted about our day and off to work I went. I got the text from Phil that I always dread when I’m not home. It was 8:45. “Things are not going well here right now.” That’s when I know a meltdown is in progress. Brenly was talking about holidays and said something about Valentine’s Day and Cayson told her it wasn’t Valentine’s Day. Meltdown followed.

That was 3 meltdowns in 1 day. 3 minor meltdowns. I could feel the tension in my shoulders getting worse. I could feel my anxiety building. I knew the next day at school wouldn’t go very well. I just didn’t expect it to be this bad.

I worked all night. I got home at 8:30. Kids were at school but my mom had told me it was a rough morning with kicking, hitting and screaming. Brenly didn’t want to go to school. Yes, the same girl who was crying yesterday about wanting to go to school.

Before I went to sleep, I text her aide to see how she was doing. She said, “A little high strung but doing ok.” I knew she was struggling. I fell asleep. I was only going to get 4 hours of sleep before I had to pick them up.

She didn’t stay doing ok.

Somehow I woke up when my phone was buzzing at 11:15. It was Phil. That’s weird. He doesn’t call me during the day.
“Hello.”

“Hi babe. I just got off the phone with the school. Brenly has had a really bad morning. Hitting, kicking, screaming. It has been going on all morning and they think it’s best if you go pick her up.”

“Ok bye.” He may have said more but I couldn’t focus on anything except going to get my girl.

If I had to go get her, I knew it had to be bad. This had never happened before. I could feel the tears stinging my cheeks already. I felt like I could vomit at any second.

Monroe, her aide, met me outside with a hug. I didn’t even try to hide the tears. We went inside and Brenly was in a classroom with the social worker and a special education teacher. She was visibly upset but sitting in a chair between them. She honestly looked exhausted. She had tears in her eyes. We packed up her bag and went home.

I didn’t try to get an explanation from anyone. If they had been trying for 2 hours, I know she hit them, kicked them and screamed. A lot. She probably self injured as well. She had marks on her upper arms that I am certain are from her squeezing them as hard as she could. They tried. I could never ask for better people to be working with her every day.

The 5 minute ride home was brutal. She was crying and trying to tell me something or ask me something and I couldn’t understand what she was saying. We got home and she didn’t want to get out of the car. I opened her door and said “Let’s go inside.” That got met with a slap on the arm. Then, a couple kicks to the shins. None of this hurts me physically. She is 8 and a tiny little thing. But it shatters my heart a little more every time. I just backed up and gave her a minute.

You see, a neurotypical child would say, “I don’t want to get out yet” or maybe just “No.” Brenly is so upset, she doesn’t have this capability. So instead, she hits and kicks.

She finally got out of the car. She went to her room and sat on the floor. Wriggling and rocking continuously, still with tears in her beautiful blue eyes.

She was trying to regulate her overwhelmed little body.

I sat a few feet away and watched.

I watched as my child struggled. Hard core struggled.

I watched to be sure she didn’t self injure.

I watched to be sure she didn’t throw anything.

I watched as tears flowed freely.

I watched as my heart broke over and over again.

I watched feeling like I failed her.

I didn’t try to help her.

I didn’t try to hug her.

I didn’t run to her.

I had to wait for the dust to settle. Then I could reach her. Then I could hug her. Then I could talk to her.

But I still can’t help her. I don’t know how to. It’s a dagger to my already broken heart.

And that…

That is the hardest part.

To be continued…

#beautifullifeofbrenly