Prelude to Home School

Aiden’s formal diagnosis came at the same he was starting Pre-K. As the school year started, we went through a crash course on Special Education. I remember during that time, I was still in the very early ages of coming to terms with his “condition”. I wanted to grieve about
the lost hopes and dreams I had for my first born. But I couldn’t. I had to snap out of the grief and focus on IEPs, Communication Tools, therapy schedules, etc.

I remember the first time we sent him off to ride the school bus. He couldn’t wait to get inside it. He didn’t even look at us. We waved, called for his name, cheered him on. We did not get a response. The bus drove off and Hubby and I were left with tears on our faces. Up until that day, Aiden had never been anywhere without either or both us.

Every day I would come home from work and the first thing I would do was check his backpack. I loved reading all about how he did in school for the day. His teacher wrote great notes. Via that little notebook, we found out about little milestones he achieved.  He had great days. He had not so good days. He was learning! We were excited for our little boy.

8/2015 (Pre-K first day)

We had to move out of our rental at the end of that school year. Sadly, our new place was zoned to a different school district.  I remember how terrified we were at the thought of having him start Kindergarten at a new school. How was he going to adapt? How were they going to treat him?  Will they be nice?  Will they be kind? Was he going to love it or was he going to hate it? Was he going to be ok? In the end, Kindergarten rolled in and he fit right in!  His teachers and classmates were very kind to him.  He received the same accommodations as the previous school and there was continuity in the services outlined in his IEP.

By November that year, he was participating in the kindergarten concert.  Now – “participating” means – he joined the whole class as they stood on stage and sang for the
teachers and parents.  Aiden did not sing.  In fact, the teacher’s aide was right beside him – keeping him engaged and calm so he did not run out of the stage or have a meltdown in the middle of the song. Aiden stayed and complied with the task throughout the whole song! Somewhere in the crowd, Hubby and I were holding back tears feeling so proud. What a milestone! Our Aiden was on stage!

 

(11/2016) Kindergarten Concert

My new work took us to a different State shortly after the concert. We uprooted and moved and of course, it meant Aiden had to move to another school (again). We were scared but, we were hopeful. We knew the change was going to be hard but, it couldn’t be that hard. If Aiden made so much progress in such a short time – I was fairly certain that Aiden will be just fine.

I quickly learned the differences between how Special Education was administered in the 2 States (Colorado and Texas). The programs are different. Some of the terminologies are different. The culture is definitely different! I realized I had been so naïve to think it all will be just fine.

With me constantly travelling for work, I would get phone calls from Hubby all the time saying Aiden had come home again with bruises. At first I thought, it must be my child having a hard time adapting to his new environment. Aiden is probably testing his boundaries. I did not like hearing about the bruises but, again – I have to be practical. I know for a fact, Aiden likes to throw himself unto the ground or unto the chain when he is having a meltdown. I was concerned but I asked Hubby to let it go. I asked him to just be patient. It’s going to get better.

Weeks passed. Months passed. As old bruises heal, new ones came on. As practical as I was, I have had enough. I wrote the school district.

My husband had spoken to one of the assistant principals already via phone.  I wanted to follow-up on the conversation via e-mail as I am out of town.  I do not believe an actual appointment/meeting was set to discuss the concern.  And truly, while our concern is fairly serious, we believe that with your help, it can be resolved rather smoothly.  We simply want what’s best for our child’s development and success as he attends Outley Elementary.
Because he is on the autism spectrum, he does come with challenges more than other children his age.
Yesterday, he came home with a mark on his upper back.  My husband and I thought he may have thrown a fit and hit something.
Today, when my husband picked him up from school, he had marks on his arms.  He had another mark on his back (lower portion, this time).
The back marks are not very concerning to us.  We know our child and can very well vouch that these types of things may happen if he throws himself into something and may not be visible to the teacher or aide at the time it happens.
However, the marks on his arms concerns us because (1) they look like nail marks from maybe trying to restrain him and (2) because they are apparent, the information should have at least been volunteered to us either via phone call or at pick-up or via a take home note. I’ve attached the pictures for your reference.
The take home note only said that he was “out of control” and that “it went well”.  It would be our preference that his behavior is described versus something as generic as out of control.  I.e. – did he have a meltdown, for how long, what methods were applied to calm him down, etc.  This way, we can provide feedback and/or reinforce at home.
We are very collaborative parents.  We see the school as our partners in our child’s educational and overall development success.  We really just request to be informed and be treated as partners. And of course, our child’s safety is very important. Marks like these should never be taken lightly but we know circumstances happen.
I would appreciate if you could look into this and put some measures in place so that we can feel comfortable knowing that Aiden is in a safe, secure, and empathetic educational environment.

The School District responded. They said that they looked into it and assured us that our son was safe. Aiden was just in the wrong program. So we went through the process of getting him assessed so he can be placed in the right program to where he can thrive better.

The bruises significantly decreased. But we found ourselves witnessing our son’s meltdowns worsen by the day. He began displaying “ticks” he has never displayed before. He became overly aggressive to where I could not even sleep at night without him waking up and trying to punch me!

Nothing at home changed so we started looking into what’s going on at school again. The daily communication notes from the teacher did not raise any flags. It did not explain the sudden spike in aggression.

Aiden came home upset every day from school. He would cry and hide under a blanket. He would begin to recover at night and then, back to the aggression and meltdown around 4AM. We found ourselves having to carry him all the way to the car so we can take him to where the school bus will pick him up. We knew something was wrong. He appeared too overwhelmed and distressed to go to school. Something at school was definitely wrong.

After several phone calls and in-person meetings with the teachers, principal, school district representatives – Hubby and I concluded that we just needed to finish the school year and move on from the school.

In hindsight, they may have been equipped to administer Special Education but they certainly were not equipped to “handle” our Aiden.

We found Aiden’s Kindergarten certificate inside his school folder in his backpack. They did not have even have a Kindergarten graduation ceremony for the Special Needs class.

Sad, hurt, disillusioned, disappointed, and frustrated – we withdrew Aiden from the school.

Can You Say No To An Autistic Child?

After we finally accepted that Aiden is Autistic, it quickly opened our eyes to the many things we could have done a hundred times better pre-diagnosis. We realized that how we’ve disciplined him for having meltdowns were futile because we had zero understanding of what may have truly triggered it. We also came to the conclusion that our frustration of our child’s lack of understanding, disregard for our instructions, absence of clear communication, and just overall unmet expectations were all due to our ignorance of his condition.

In some of my readings, I learned the difference between a child’s tantrum versus an autistic meltdown. Tantrums are supposed to be due to any child’s frustration of not getting what they want while autism meltdowns are due to the child being overwhelmed. According to an article I found in the Autism Awareness Inc.‘s website – for someone with autism, when they reach the point of sensory, emotional, and information overload, or even just too much unpredictability, it can trigger a variety of external behaviors that are similar to a tantrum (such as crying, yelling, or lashing out), or it can trigger a complete shutdown and withdrawal.

As a fairly smart person but a rather ignorant parent to the world of Autism – the article made total sense but my reality continued to not make sense. I was left confused and I continued to be frustrated. With Aiden, whether it was a tantrum or a meltdown – we were faced with the same behavior. Kicking! Screaming! Body throwing (unto the couch, unto the bed, unto the carpet, and repeat)! Running all over the house (to the living room, to the bedrooms, to the kitchen and back again)! Crying uncontrollably for hours on end! And I am not exaggerating – HOURS.ON.END!

I kept researching like a witch looking for that perfect potion. Every time I came across something sensible that we could do at home, I would quickly talk to hubby and get his buy-in. Each time, hubby would go along with the new approach.

Fast forward to these days – 4 years after official diagnosis – with a lot of reading, numerous trial & error approaches, and maturity as a parent to the special needs of our first born – the behaviors brought about by any triggers have tremendously improved. Fits/tantrums/meltdowns don’t last longer than an hour now! (Just thought I’d share that bit for parents out there who may think it will never get better).

Because I cannot tell you (to this day) whether it’s a tantrum or a meltdown, I’m going to just talk about what Aiden’s triggers are. For this post, we are going to specifically talk about the horrific “NO”. Sometimes Aiden will let us cruise by for days (or even months) with uttering the word “no” without a single incident. But, just when we think we have it figured out – “no” becomes a trigger (again) and we’re back to days or weeks of the fits, the tantrums, or the meltdowns (however you choose to call it).

Last Sunday while I was doing laundry, Aiden wanted to put Thomas and his Friends in the washer. Ha! I guess they needed a bath of some sort. He persistently requested it. At first I said “No trains in the washer” but he kept insisting. I sensed a fit/tantrum/meltdown brewing so I switched up my response a little to say “Nice to Thomas, Nice to Percy, Nice to trains, Nice to Washer. No trains in the washer, please.” We repeated this exchange (him putting the trains in the washer, me pulling out the trains and giving him my spiel) for about a couple of minutes. He’d leave and then come back again and we’d repeat the whole thing. After about a few more go-round’s, Aiden had enough. So he went to his bedroom, unto the floor, stiffened up the body and began crying, kicking, and making what I have always just described as his signature “screeching sound”.

I followed him to the bedroom, sat on the bed, and told him it was ok, and encouraged him to be “Nice to Aiden” and get up. I motioned my hand to reach for him so he can get up. He reached back to my hand and got up. I gave him a tight hug, told him I loved him, and invited him to go the living room.

So here’s the deal. I think you can definitely say “no” to an autistic child. I know we say no to Aiden. But in doing so, you have to be almost consistent in your approach. You also have to be open to the fact that as much as you’re struggling with being consistent on how to say “no” (and when to say no), your child is also going to struggle with being consistent on how he/she copes with your “no”.

Here are some strategies we have found to be helpful with Aiden:

  • Maintaining a loving tone even when it proves to be difficult amidst our own frustration (or exhaustion).
  • Detecting very early on what could potentially become a fit/tantrum/meltdown. This is very challenging for us because it requires us to be very attentive to our child the whole time.
  • Gauging your own boundaries as a parent – is it really worth saying “no”? Is it really a battle you want to fight right now? Or, can you let this one go?
  • Switching up your words. Instead of saying outright “no” – use positive language alternatives.

I also found the website Autism Educates has a very good article about when and how to say no to an autistic child. I recommend reading it. It’s eye-opening.

At the end of the day – most of us parents are not “experts” in the field of Autism. We don’t possess the degrees that professional do or the mastery in the field that others have acquired professionally. But what we are (and can be) are experts on IS knowing our child. No amount of school hours can compare to the hours we spend figuring it out, right? It’s alright. It’ll be alright. I can tell you, despite backwards and forwards, it gets better. Just always love your child and learn to forgive yourself for the mistakes you have made and will continue to make.

Finally, don’t be afraid to say sorry to your child when you make a parenting mistake. I find that even when Aiden acts like he may not understand – he truly does. He knows we love him and that we’re trying. And we know that he loves us and that he is also trying.