Be Your Children’s Fiercest Advocate

Events unfolded last Friday and this Monday at our kiddos school. It was nobodies fault. And the school staff did the best they could with the tools they had. I do have to say that the school staff is amazing. With that being said, the time has come to make sure our daughter has the correct tools at her disposal.

After requesting a 1:1 aide for our daughter, I was told that it there is no money in the budget; that they are out of hours; that the tools they currently have in place – only work half the time so they don’t want to spend money on a 1:1 if it is not going to work. I was told that it is a lot of paperwork, and the red tape is thick. That without an official Autism diagnosis – it is going to be a little more challenging.

And to that – I say challenge accepted. Below is what I wrote up on behalf of our daughter. As parents, we are our children’s voice, their fiercest advocates. And I will always fight for what I know will help our child.

p.s. I had a page full of links but couldn’t copy + paste them into here for some odd reason. And if I had more time energy (OK and time)- then I would done actual in-text citations.


Why does E need a 1:1 Aide?

Who is E?

E is brave and fierce and sparkly. She is creative and imaginative. She analyzes moving pieces, lines up objects in categories that make sense to her, and dismantles objects to see how they operate inside. She dances and wiggles and shines. She is persistent. She is stubborn. She is a fighter. And she is independent.

Her smile will turn your frown upside down. Her persistence will make you pull out your hair. Her laugh is contagious. And her heart is pure.

She thinks 1000 miles a minute and her brain has a hard time keeping up. Her internal neural framework is wired differently than yours and mine. Her neurons are constantly firing as she senses everything. Everything. And her brain has a really hard time filing away pieces of her environment that she doesn’t need to attend to. Because of that, she views the world from a vantage point that people rarely realizes exists.

But the vantage point that she excels in, does not mean others understand,  or even know the directions on where to meet her.

She feels. She feels your emotions. My emotions.She feels the emotions from x,y, and z while she is at it. She internalizes those feelings and makes them her own because she has not quite mastered how to help her friends and those around her. But she wants to. She tries her best.

She is going to change the world. Somehow, someway. She arrived here for a reason. And she will succeed in her as yet unknown mission. But only if we give her the appropriate tools to help boost her, rather than hinder her.

She knows exactly who she is. Now it is time for the rest of the world to find her and see the world from her vantage point.

What are her Challenges?

E is creative and has a vivid imagination. When her needs are met, she is able to slow down and focus on the task at hand.

But to meet her needs, you need to first understand what the root cause is of all (or at least most of) her meltdowns.

Sensory Processing Disorder is about not being able to filter out many internal and external stimuli. Imagine you are in an airport, and you are staring at the board that shows what gate you need to go to. But imagine listening to all the conversations of thousands of passengers around you, everyone chatting in their respective languages; the lights cause you to squint as the smells from all of the restaurants seem to be moving straight towards you. Some of which make your stomach churn. Someone is speaking over the intercom, the wheels on luggage are rolling over tile floors causing your ears to scream into your brain. Bump. Clack. Screech. There is a child screaming around the corner. You feel sweaty, as if they turned the heat on just above where you are standing. The doors open and shut. Click. Bang. The ammonia from the Janitor cleaning the floors – permeates in a cloud above your head. Tickets are being scanned. Beep. Beep.

And yet you still have to search thru the giant board to find out where you need to go, to board your plane. But once you get that information – just imagine what else you will encounter on your way to your gate. Going thru TSA screening, potentially being pat down, having to take off your comfortable shoes, having to wait at the gate for your seat to be called – anticipating. Anxious. There may be a delay. A sense of unknown creeps up. Will you leave on time? Will you make your connecting flight? And then you finally get called, and you are corralled into a noisy tunnel whose smell may be suffocating your nostrils. Just as you arrive at your plane, you realize that this is a much smaller plane than your brain envisioned. And there are so many people in front of you. You just want to get to your seat. But once you do, you realize there are loud noises, weird vibrations, unpleasant smells. And someone is in your personal bubble within inches of your arm, causing your hair to raise and your walls begin to bury you.

Did you know that most of what I just described – you and I would have tuned most of that “noise” out. We would be able to find our gate on that huge board – probably with ease. And we wouldn’t have noticed the weird vibrations, or maybe we would but we would just file it away, realizing that it is something that does not need to be paid attention to right now. Or maybe they are just subconscious thoughts that you are able to make a note of and move to the side.

Now imagine being a 1st grader, without that ability to filter out extra noise that does not need be paid attention to. Pair that with a communication delay and missing the skills to appropriately name your emotions let alone self-regulate properly – and meltdowns will occur.

A room full of kids fidgeting, pencils scratching on paper, a teacher trying to get you to focus on her, a backpack unzipping, a desk opening, a friend acting silly, a slightly flickering light, a leaf fluttering on the tree out the window, a busy body that doesn’t want to sit still, the smells of lunch wafting thru the air, the desire to make friends, and an unknown if the loud fire alarm is going to go off.

1st grade is already hard. Kids are expected to stay seated longer, work on harder skills, be in a bigger classroom, etc. But add in suspected Autism, Gender, and SPD – and we have to meet her where her skills are at currently.

But how?

What are her Triggers? Telltale signs?

E can be triggered by many things. What was a trigger one day, may not be the next. When a pattern is found – it will inevitably change. Partly because she is learning how to interact with her world. And it may just be a one and done trigger.

But more often than not, what leads up to her meltdown – is something little, something we have tuned out – piled on top of something else NT (neurotypical) individuals have tuned out, on top of another, and another. The final trigger may be having her to stop dancing. And for any other kiddo, that is not something that would cause a storm that depletes the energy of everyone in the vicinity.

But then she erupts in a meltdown. And we are all questioning why. Scratching our heads. Did she have a proper transition to ceasing the dancing activity? Was she wearing her headphones? Did she get the proper sensory inputs earlier? Was it too hot?

But what we do not see, what most do not see, is that the root cause of her meltdown actually happened 2 hrs ago when someone reminded her to wash her hands, an easy chore for most. But for E – feeling water, if only on a certain portion of her body – is like a 1000 tiny needles penetrating over and over. To add another level of complexity, how someone reminds her to wash her hands – is key to a successful conclusion.

But how would you know that? The teacher cannot focus on reminding her in the way she needs to be reminded, because she has 20+ other kids to attend to at one time. A paraprofessional is also being pulled in multiple directions. And by the time she reaches meltdown – it is too late. Any sort of resolution/intervention after the fact, while much appreciated, is not treating the root cause. It is a band-aid.

The key is to see those triggers 10 steps ahead of her. Anticipating what ALL the potential effects could be. The key is to notice her telltale signs as they are ramping up, and then effectively helping her change course. Before a meltdown erupts. The key is being able to see that fleeting moment during a classroom activity that is the final moment before her lid flips.

What are her triggers? (this is only a partial list) Loud noises; unexpected changes – i.e. unexpected sub; little (or no) transition warnings; lack of a schedule and/or routine; hands getting dirty; clothes getting a small drop of water on them; having to remain seated for any length; drawing/writing; more than 2 step instructions; a situation that requires mental skill that she feels she is not ready for; chaos.

  • Tactile
    • Avoids some messy textures – i.e. when working with shaving cream, she either plays with 1 finger tip or her entire hand. There is no inbetween.
    • Does not notice when face is messy
    • Prefers certain types of clothing – i.e. leggings vs. jeans
    • May not notice/prefers when shoes are on wrong feet
    • Feels pressure differently – i.e. touching her lightly is oftentimes worse than touching her with heavier pressure
    • Has a high pain tolerance
  •  Visual
    • Difficulty focusing on busy/disordered pictures
    • Likes to watch lights spin/flash
  •  Auditory
    • Says she likes loud noises – but history dictates if she does not cover her ears, loud noises/busy environments – will lead to sensory overload
    • Is loud herself to drown out other loud noises
    • Makes noises in inappropriate locations
    • Poor ability to adjust volume of voice
    • Is distracted/has difficulty functioning if there is a lot of background noise
  • Proprioceptive
    • Constantly moving
    • Crashes into objects/people
    • Does not use the right amount of force (sensory seeking)
  •  Vestibular
    • Does not get dizzy when spinning
    • Can swing for hours
    • Enjoys climbing, constantly spinning/climbing/running
  •  Taste/Smell
    • Is picky/eats limited food textures
    • Prefers sweet foods and extremely sour foods
    • Can overeat
    • Can smell smells that others are unaware of
    • Prefers foods that are one consistency – i.e. applesauce

What are her telltale signs? (this is only a partial list) She starts slurring, begins using “me” instead of “I”, or her speech becomes a little less understandable; she becomes extra fidgety; her eyes do not focus; she starts saying strange words; she has to go to the bathroom, alot; she touches her privates, alot; she pouts out her lower lip; she crosses her arms; she tidies up her space (when not expected or asked to); writing/drawing large/wildly; her voice changes to a more aggressive intonation; Her smile fades and her eyes begin to sparkle at you from her peripheral.
How can we help her? She thrives off instant gratification, competition, laughing, and being silly. The more dramatic – the better. Speaking to her in a calm, passive, upbeat voice – will go farther than the opposite. Letting her know that we are a team, and that we will help her, that we will not leave her. Providing space for her on her paper – i.e. a box to write letters in. But in order to meet her where she is – we have to get her brain waves back to what I refer to as “a neutral plane” so that her brain is ready to take in more information.

If you do not strengthen and train your brain muscles, asking it to carry a heavier load, may not end with the preferred outcome. In addition, have you ever heard the saying “a tired dog, is a happy dog?” By providing E the ability to tire her brain- and her body – out, only then will she be able to succeed.

But tiring her brain out via meltdowns that were caused by a trigger that could have been avoided – is not a solution, and is doing more harm than good. And just to complicate things further – we have found that you need to match your response to what the cause of the meltdown was. How you respond to a meltdown due to noise, is most definitely not the same way you would respond to a meltdown caused due to a missed transition warning.

When it is a meltdown due to noise – you need to respond by removing her from the situation and having her cover her ears. She needs to find a quiet or dark space that she can escape to.

When it is a meltdown due to a lack of transition warning – you need to respond by logically explaining to her the events that unfolded right up to the transition, and then be able to give her an extra 1 or 2 minutes to participate in said activity (with transition warnings this time).

What can be done?

I just spent the past couple pages, talking about how many negatives my sweet child has. And they were only partial lists. But I hope that it gives you an idea as to how complicated E is. And how imperative it is that we find a solution that will give her the independence and confidence she needs in order to feel welcome, secure, and regulated.

But how? The teacher cannot attend to E at that level required. The speech therapist is a fantastic resource, but going to her office when she doesn’t have ST – should be the last defense. Having someone check on her periodically throughout the day – while I do enjoy knowing that so many people care about my child – will not provide the opportunity to see the telltale signs as they ramp up.

And having her constantly leave the classroom or be removed from the classroom – is taking away her right to a free education. Once her needs are met, leaving her in her mainstream class, should theoretically not be an issue. Suspending her, is also taking away her right to a free education, as well as seclusion and stigmas attached.

(on a side note: suspending a child due to a meltdown – which is completely separate from a temper tantrum – is not the correct answer and it is not even a good answer. This type of consequence for a child that has a meltdown due to not having the proper tools in place that could easily advert this scenario – is counterintuitive to what should be occurring. When a child is in a meltdown, they are not aware. When a child comes out of a meltdown, removing them from school – is not a consequence. It is a punishment that often times these kiddos will not learn from. Because when a child is experiencing a meltdown – they are biologically not in control of their body (see links provided at the end of this document). Now, I am not saying my child should never have a consequence or a punishment. But being suspended for something that is quite literally outside of her control – is wrong.)

What does she need?

To put it bluntly, E needs a 1:1.

She needs a 1:1 to get her to refocus on the task at hand; to give gentle reminders to calm her body, lower her voice, keep safe hands, be on the lookout for those telltale signs and be able to redirect as needed. A 1:1 would be able to help E make social connections and interact with her classmates with appropriate behaviors.

E has a hard time knowing how much pressure she is exerting. A 1:1 can help bring attention to it.

E has a hard time processing information as she hears it. A 1:1 can help slow lessons down and get her to attend to a lesson in class.

E has a hard time regulating her voice levels, her body in space, and her temper. A 1:1 can be there to give gentle reminders to lower her voice, slow her body, and take a deep breath (all of which will lessen the chance of a meltdown).A 1:1 would be there to provide instructional support so that E does not feel like she is behind her peers and therefore help boost her self-esteem towards school.

A 1:1 would be there to provide behavior management and social skills training so that E will be able to learn her emotions quicker and match those with an appropriate positive outcome. With an end goal of her natural instinct for anger to not be to hurt whoever is around her.

A 1:1 would be there to provide transition reminders, therefore eliminating the chance that a transition is not implemented by a 3rd party, reducing the risk for a meltdown. In addition, a 1:1 would be able to quickly notice when a meltdown is about to occur and will be able to take E out of the situation in a more flexible and discreet/subtle way than calling in another teacher or warm body to assist.

A 1:1 would be there to collect information as to what types of triggers E is encountering at school with the end goal of being able to anticipate previously unknown triggers without a 1:1.

The goal and the push to provide E with a 1:1 aide is not to seclude her, but to mainstream her. She is smart. When she is able to process at her speed, when she is given a sensory diet to work in to her day, she is able to attend to and complete tasks required of her.

By providing a 1:1, the goal is to get E to a point in her education where she is confident that she is learning and understanding, where she knows exactly what positive alternatives she can do when she is feeling like her lid is about to flip. The goal, is to onboard a 1:1 so that we can “fade the aide”.

Preferably, this 1:1 aide will understand special needs, and will understand autism. They will be able to maintain composure and calm, yet stern. They will be able to stand firm and not “give-in”. They will be consistent in providing questions that have only 2 outcomes – neither being No. But most importantly, this aide will know how to make life fun and feel like she is achieving instant gratification without actually receiving a physical prize.

While E may not need a 1:1 aide the entire day – i.e. bathroom trips, lunch and breaks, it is preferred that this 1:1 will remain fairly connected to her. And it is preferred that E remain in her classroom, and not in a pull-out or self contained classroom. In the case a sub is required, E will need to be prepared ahead of time – even if that means I get a message before school starts for the day.

With the assistance of a 1:1, the outcome can only be better than what the current situation is. We all want what is best for our children, our students. And if that means providing E with an adult that has the flexibility to see the world from her vantage point – than that is what we must do.

Final thoughts:

E is an amazing kid. She encounters many obstacles daily. But she always overcomes them. We work as a team to get her thru the storms. And she thrives because she has a village looking out for her well being.

Some days, I curl up into a ball and bawl. Other days, I do not even make it to my car before I breakdown in to tears. But then there are moments where my heart is bursting with pride and joy because something so trivial, like being able to write and spell her name – brings her a momentary boost of confidence. Or when she can leave a bathroom without covering her ears, or being reminded to wash her hands.

But it has taken a lot of hard work. On everyone’s part. To get to this point. We cannot afford to go backwards. We need to continue helping her excel. And if that means trying everything under the sun to get the help she needs, to figuring out the right combination of tools, to potentially even changing learning environments – I will do anything to make sure my daughter, our daughter, is being boosted, rather than hindered, to success.

Regards,

Mom & Dad

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