Three things for schools to consider for children with autism

Tulika Prasad

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Today is going to be almost 3 months since my son’s school closed due to lock-down and is now into summer break. I probably won’t be sending him back to school anytime soon even if it reopens in fall. My son is just not where he would keep a mask or a pair of gloves on or understand and follow the rules of social distancing and hygiene. I don’t want to put him and others at risk. He is safer at home and I am at peace that way. So what does that leave me with? It leaves me with him and him with me!

Three months back, if someone told me that starting March I would need to keep my son home all day, every day until the end of the year, I would have panicked and freaked out. The idea of him missing school -- all the learning opportunities, the social experience, and all the therapies he gets at school were impossible to imagine. I would have been pretty sure he would regress, and we would lose a whole year of his development.

If someone told me NOW that not sending him school for the rest of the year, even when it reopens in fall, would be deleterious for my son, I would chuckle.

With the progress I have been noticing in my son lately during this lock-down, I think I might have been able to identify some areas that schools might need to reconsider if they really want to invest in their special needs students just as much as their other students

1.The need to belong
Schools come with a lot of advantages, especially if your child is neurotypical. It gives them the opportunities all kids deserve to have in their growing and learning years. Unfortunately, for a majority of special needs kids, this experience is very different. They are generally confined to a room where they do most of their learning and they hardly get to participate in most school events and activities. So, although I send my son with the hope that he would have the same or similar experiences at school as most of his peers, it’s generally not the case. In fact, I have attended several IEP meetings by now to know that the homeroom teacher who is mandated to attend these meetings is absolutely clueless and disinterested and has practically no inputs for my child.

My son and her students belong to two different worlds and that is not what I want my son to feel at school. He needs to feel like he belongs, not just on the enrollment list, but also in the actual school environment. He needs to not stand out, but blend in. Having a fidget in his hand should not look, well, odd. It should be as acceptable as a neurotypical student fidgeting with his pen. A flexible seating, an accommodation, a different mode of communication...all these needs to look and feel more normal to the rest of the school. This can happen only if the rest of the school is exposed to our kids every day and they are not brought out like unicorns on special occasions and at special times. Our kids need to experience the school in the same way as other kids for them to feel like they are part of it.

Unlike school, home is where he always feels like he is no different. He is part of everything and he is not kept apart or away from the rest. This approach alone can drastically change the state of mind of any child and reduce their stress. Needless to say, less stress would mean fewer behaviors and better engagement.

2.IEP is great but…
Parents and teachers go through a lot of effort to come up with an IEP that forms the basis of the child’s entire school experience. It outlines every single thing that the school should be doing with the child and that can sometimes be a problem. For anyone to envision every single minute of every single day for the entire school year and then outline what needs to be done to ensure that the child gets enough opportunities for learning and other activities is next to impossible. This can lead to a lot of gaps in services and unwanted confrontations that might arise out of unexpected situations.

The constant need to jot down data of every single item on the IEP- how many correct answers selected, how many behaviors a day, how many accidents, the number of minutes of instructions- that is all too much data that comes in the ways of teaching things.

When at home, there is no IEP to follow and that really makes a difference. When I am not treating my son simply as a source of data in order to prove that a certain goal on his IEP has been achieved, I am actually working with him a more natural way, under no pressure to prove a point. It works wonders, believe me.

I have seen my son learn things better and faster. So, as I said, the IEP is great, but ditch the IEP and keep the spirit of it when teaching your student. If you have the student’s best interest in mind, you would probably go above and beyond the IEP rather than be tied down by the cumbersome document.

3. Flexibility is the key
Some days I get up and want to start my day with some stretching exercises, on some days sitting on a couch and catching up with the news is how I would rather start my day. Everyone does that.

For a neurotypical child, it might be easier to understand the need to follow a schedule and calm their body to comply with a routine. For someone like my son, it might be a lot more difficult. So, usually, I give him the opportunity to calm himself down before an hour of work at the table. Let him run around, play on the swing, or just stroll in the yard. The movement can provide the much-needed sensory diet that keeps him settled for the next hour. Even during the hour of tabletop work, instead of relying on a timer, I rely on his cues to give him small breaks. There is no set routine, there is more flexibility and it fits better with his way of learning.

I believe the flexibility to not follow a routine but still have one is a great way of working with kids with challenges with focus, sensory issues, and hyperactivity. Sometimes we have gone on for 30 mins without needing a break and sometimes he starts with a couple of breaks within the first hour before finally settling down for a longer period of work. We work around his needs rather than around a clock and that really helps minimize behaviors and increase attention.

4. Follow his cues
I cannot emphasize this enough! He tells me if I am willing to hear. He tells me if he needs a break, he will also tell me if he likes a lesson and wants to go on. He will let me know if he is struggling with something and if he wants a breather. He just says it differently.

It’s easy to tag that communication as behavior and start pulling in therapists and psychologists and writing up behavior plans when all we needed was to understand what he was trying to say. It was that simple. All kids get frustrated and while some can express that through words, some do not have that privilege and resort to behaviors. We need to watch for those cues and translate those into meaningful interactions to alleviate the situation rather than make it a confrontation or a case study for a therapist. The feeling of not being heard or understood can be very stressful especially for a non-verbal child. And as we all know, no one can learn well under stress.

5. Not all learning happens on a tabletop
I believe this applies to everyone--kids and adults. However, for someone who has sensory issues, short attention span, difficulty regulating their body and hyperactivity, sitting on a chair in front of a desk, and trying to focus on stuff can be very difficult. I have taught my son adjectives like big and small, in my backyard and parts of his body while tickling him. He is learning months of the year not from circle time and from staring at a picture board but when he is on the swing while I push him. Same for counting. We lie down on the hammock and I talk about moons and stars. When it rains, I talk about the clouds and water cycle. Over and over again.

I think this incidental learning gets his attention more than when I sit him on a table and his stress level suddenly is elevated because now he is supposed to sit still, focus, answer questions and has to comply with too many rules and expectations that his mind and body might not be ready for. Agreed, some learning has to happen on a tabletop. We still need to sit down and practice writing or do some online exercises but there is a lot that does not need a table. I wish the need to sit around a table was not a prerequisite for learning, especially not for someone who needs movement and sensory inputs to regulate himself. So, instead of fussing over how little he sits still in the classroom, if we made the whole learning a little more flexible, brought in a lot more movement and broke free from the traditional model, it might just help.

I am not an expert in special education. I am a mom. That’s my qualification. So, I might not have all the answers. However, I know my son and over this lockdown, I have seen what has been working for him. Unlike a regular school year, this year he has been with me way more and I have had the opportunity to understand and appreciate his potential better. I know that he is capable of much more if he is given the right environment, proper support, and the belief of someone in him. If he is treated more than a data to justify the school's budget, a poster boy for the school’s image of inclusion, another artifact for therapists, and a mostly invisible and sometimes amusing peer for the rest of his school, he might just prosper. It requires a little more patience and a lot more understanding but it’s not impossible for students like my son to have a fulfilling school experience and reach their potential...if we are willing to try.