First, a quick
glossary:
Neurodiverse,
Neurodivergent - Basically, anyone whose brain chemistry differs from the
"typical" setup - autism, learning disabilities like ADHD or
dyslexia, anxiety disorders, mental illnesses, pretty much anything that means
your brain works and you perceive the world differently from the way society
expects you to.
Neurotypical -
People who are not neurodivergent. Basically, brains that function more or less
the way society expects them to.
Types of Service(s) and Providers That You May Need:
- Occupational therapist - These help with things like motor control (handwriting, holding utensils, sitting up and walking without falling down, hand/eye coordination) and sensory integration therapy. You will almost certainly need the latter. (While not all people with sensory processing disorder are autistic, something like 90% of autistic people have sensory processing issues.) It's a bit like Physical Therapy for people who have suffered injuries, but in my experience OT generally focuses on core muscle strength, but also on building up skills that aren't there, and it does so in a way that the kid finds fun rather than work. For instance, practice using zippers or buttons or tying knots with a toy designed so that you have things to button, or improving coordination by threading string into fun shapes. It can also provide an outlet for sensory needs you can't fulfill normally - the one I went to for years had a zipline set up that a lot of kids liked to fall from or crash into soft blocks at the end, and a sort of hammock made of very clingy lycra that I liked sitting in.
- Speech/Language Pathologist - focus on social skills groups (particularly ones that give you an outlet to meet other autistic and neurodivergent kids that can interact with each other) and for AAC Augmentive and Alternative Communication.
- For the former, make sure that it's a group that involves the kids interacting with each other and doing things they actually like. Something that encourages them to talk to each other and try and play together, but will let them play how they like beyond that. (For instance, my one social group would give us a choice of board and card games, and we'd split into groups of whatever sounded more interesting, but a few of us also brought video games and were allowed to play them together and talk about that as well.)
- For the latter, making words and arranging them in ways that make sense is hard, and being able to make sense of how people are talking to you and attaching meaning to them can also be difficult. It could be the child needs help with that, so helping him get that or finding a way to communicate if he can't really get spoken words to make sense is probably a good idea. (For instance, while I'm fine with talking, I have an easier time writing, especially when I need to collect my thoughts for something long and important. The ability to erase and edit as I go is a major benefit. My brother, on the other hand, is completely comfortable speaking but has trouble arranging his thoughts into writing because he's so stream-of-conscious. Communication methods are different for everyone, so finding what works best is a good idea.)
- Psychologist - Not a given, but kids are not always kind to kids who are different and not being able to understand all the rules of the world around you that everyone else seems to just get causes some serious internalized issues. (Hi, my social anxiety) You're looking for someone who's good with kids and finding ways to help them that make the kid feel more at ease.
- An Advocate - someone who will help you during IEP meetings to figure out what your kids need in this specific case and how to be allowed to use it so that they can actually learn. This is a must, because you do not know the county's education system code and how it relates to disabled students. They do. As a given, the things I'm going to suggest in the school section are things you are allowed to ask for and the school is supposed to give you as accommodations. If it's something like a keyboard to write on, the school has these resources already and is supposed to provide them for you. Your advocate knows these things and will help get the school to provide them for you.
- In School Services - the public school system is pretty much the opposite of sensory-friendly, is the thing. You're having to hear the teacher talk, people talking around you, the air conditioner or heating running, the overhead projector, the scratch of writing with a pencil or click of typing on a keyboard, and sometimes things like the class next door or people opening lockers in the hallway, and it is hard to focus on just one when all of these are overwhelming. Things like air freshener and markers and nail polish and glue and food all have smells, and these can be extremely unpleasant to the point of making you physically ill. The lights flicker, there are things all over the walls and outside the windows and at the desk and on the whiteboard and the teacher and a lot of kids around you and they all attract attention. On top of that, having to sit in a hard plastic chair at a desk with your feet on the floor and sit up and look at the teacher (when making eye contact can be physically uncomfortable) and not fidget and do all this when you're uncomfortable from everything else and your clothes are scratchy all combines into this expectation of sitting still and "behaving appropriately" that can be near impossible to fulfill. Here are some coping mechanisms that your children might need to use:
- Being able to take a break somewhere quiet and calming (the library, for instance, or an office where they can turn out the lights) when overwhelmed
- Sensory relief while being in the classroom - I found having something to suck on helps me manage the noise levels, so I keep a bag of Jolly Ranchers on me at all times. (When my one-on-one aide discovered it, we would put the flavors I liked in a little ziploc or the pocket of a pencil case because I didn't use a purse, or she would have some in her pockets and I could ask for them.) Other things that work are fidget toys - things you can squeeze or tangle or rip so your hands are busy while you're focusing, because it's hard to just sit completely still. Everyone does things like them, but autistic people tend to do so more noticeably. You can find some at the counter of your average small toy store - things like little squares on a string to make shapes or a Rubic's cube or the like. There are also specially designed sensory toys and jewelry you can find online - for instance, my brother and I used to chew through shirt collars when upset, and there are little toys and necklaces designed to be chewed on that fill that need and not damage clothing. Because school isn't geared for this, you need an IEP to say "yes we need these things they are necessary to function in a learning environment."
- You may need a one-on-one aide to help cope with the class environment. (This particularly becomes a thing once classes split into levels - I needed mine because I could stand up to more challenging classwork and was bored with the special ed curriculum, but needed help to deal with being in class.)
- Clothing: Will not be addressed in an IEP meeting unless your school requires a uniform, but do certain pieces of clothing make your kids uncomfortable? Certain fabrics? All clothing? Things with physical tags? If it's just fabric types or tags or the like, you can work with that on your own, but if it's all clothing or all of a certain type (say, shoes) you'll need to work with an OT for that.
Other things
you'll need:
Doctors, teachers
and therapists that will take you and your children seriously. It's not all in
your head. It is not something you can just stop. It is not a tantrum seeking
attention. If your child is having a meltdown, there is probably a reason for
the meltdown and you need to identify what it is. If you're seeing a doctor and
talking about symptoms, someone who will listen to what you two are saying and
see what it is rather than declaring that it's clearly just a virus or in your
head. (I exaggerate slightly. I am still bitter about certain awful doctor's appointments.)
http://realsocialskills.org/
A website for and
by neurodiverse people, geared more towards adults and teens seeking help but
the resources and advice there can be helpful.
The blog is
Australian, so some of the resources will probably be region-specific, but the
"if you are a newly-diagnosed parent" page will give you some really
good links for explaining things from autistic people's perspectives and this
set of images PERFECTLY summed up why elementary school is so difficult and how
to help.
I got good vibes
from that website in general, but most of their services are geared toward
adults. This, on the other hand, is a way to find providers in your county who
presumably have experience working with autistic people. This includes
specialized stuff like OT, but also general services like dentists. Believe me,
you will need a very understanding dentist. (My gag reflex got me thrown out of
several dentist's office. It's a type of healthcare that by its very nature
includes bright lights shining in your face, weird scary-looking metal objects
going in your mouth that you have to not start retching over, and sometimes
very loud noises. You need someone who will understand this fact and explain
calmly to your child why they are doing all these incredibly unpleasant things,
and that it is not just because they enjoy torturing people, and be sympathetic
to them if they're freaking out.)
