Autism in Grief

Content is very heavy and emotional. Please take care of yourself if reading.

Grief:

noun; deep and poignant distress caused by or as if by bereavement

 

I’ve found that death isn’t something people want to talk about. It’s one of those things that everyone knows exists – but no one acknowledges it.

Over the years, several people I know have died. Great-grandparents and relatives, patients that I was attached to when I used to visit an assisted living center, close friends, favorite professors and staff members, and of course – my baby brother.

When you’re autistic, grief has some specific challenges for us.

For one, my brain tends to hyper focus on things.  It also can take longer to process emotions. I feel things so deeply that it’s hard for me to untangle everything, and grief is definitely not a exception. Even though my baby brother died back in September, I still haven’t really worked through it very well. The death of a child seems to make it sting even more. It’s not logical and the whole thing doesn’t make sense.

And then, of course – the change. When someone dies, your routine and situations change unexpectedly and quickly. Considering my track record for handling change… yeah, it’s not easy.

 

 

When the death first happens, we might have different ways of reacting. Some of us are in shock, angry, immediately break down, or even look “unbothered.” Considering my emotions don’t always match my facial expressions, that can happen sometimes. For many of us, it’s a delayed reaction. We also may focus on facts, concrete details surrounding the event, data, or even hyperfocus on death or some other aspect involved in the event or the ceremony. I know one autistic person who even broke out in laughter when his father passed away – not because it was funny, but because he couldn’t understand how to process it for a long time. Human emotions aren’t logical sometimes.

The first 48 hours after my brother died, I felt very much like a zombie. I didn’t sleep at all, I barely ate (my friends made me eat), and I was so dissociative that no one would let me be by myself. I went to my Neurodiversity Club meeting later that day, where friends gave me hugs and even flowers. I stayed up all night waiting for my flight to Nashville, and broke down crying in the TSA line because the ticket agent forgot to spell my last name correctly for the bereavement flight (Delta is one of the few airlines that still do that, by the way). I finally fell asleep on the flight out of Atlanta before the plane even went through take-off. I was just so exhausted and overloaded.

And for the rest of the days that followed, I cycled through sudden emotional breakdowns to dissociative fog into complete disinterest in everything around me.

The months after were even worse, and I ended up doing medical withdrawal for the remainder of the Fall semester. I had to move off campus into my own apartment (living alone is not going so well, if we’re being honest), and there’s been so much change that it’s stressful. We may be numb for a while, and the intense emotions can lead to meltdowns, shutdowns, and what people perceive as “regression.”

I’ve been struggling a lot lately with these, but especially shutdowns and seemingly losing the ability to do things that I thought I could do before. It’s gotten harder for me to control sensory input, speak as much when stressed, and do general executive functioning tasks that I used to be better at. I can’t go to stores at all by myself without crying or forgetting what all to do (guess who cried in the storage department and also left their keys in the door all night?). And don’t get me started on remembering to eat and take medicine right now. I had three marshmallows for breakfast, which is three more than I had for dinner last night.

I’m currently nonspeaking as I type this, if I’m being completely honest. I couldn’t talk to anyone right now even if I really wanted to. To an outsider or professional, they would think my autism was “getting worse,” although I think it’s just the way I’m processing everything right now. My brain and my body are not quite communicating the emotions well, and it’s hard. The constant reminders of him are like a punch to the stomach every time, and my mental health has been worse as well. The depression, PTSD, suicidal thoughts/fixations – it’s been rough. Likewise, it impacts physical health as well. I’ve gone into hypertensive crisis a few times, dealing with a lot of fatigue and chronic pain, and just feeling overall awful.

[I’ve had to take a bit of a break from parent groups, as I started feeling extremely angry at the people saying they wanted to give their kid to the state or that they wished their child were dead. I would give anything to have my baby brother back, who was also autistic. Not to mention that I wish I could have kids, but I don’t think I physically can.
I have some very strong choice words that would probably get me permanently banned from these groups. I try to not use profanity on this page (so far, so good), since I try to make things informative and somewhat “professional” – but I assure you that no swear word will go unsaid if I ever meet one of these people in public. I’ll leave it at that.]

 

 

Grief is an overwhelming emotion that impacts people differently, and it’s hard for anyone regardless of neurology. It’s one of those things that most people will experience, but again, no one seems to acknowledge it.

For myself, my autism makes me feel things very intensely and regulating emotions is extremely difficult. And to top it all off, there’s so many unspoken social rules when it comes to grieving – and you can imagine how great I am at those (the answer: not really).

  • You’re supposed to cry, but not too much – and not in front of other people.
  • You’re supposed to grieve, but only for a short time and when it doesn’t inconvenience other people.
  • You’re supposed to not talk about that person – even if it’s what you need to do to process it.
  • You’re supposed to eventually “get over it” and it’s supposed to be linear.
  • Don’t talk about grief; it makes people uncomfortable.

Quite frankly – sometimes the social rules should be broken. Maybe it’s time to flip the script.

I don’t think grief has a time frame, especially when it was someone you were close to – or when they were young. (When someone dies young, I don’t think you’re just grieving the loss. I think you’re also grieving the loss of future times without them, too.)

I don’t think you can “get over it,” either. Again, grief isn’t linear. These past few months, I keep going from feeling deeply depressed and heartbroken to “I guess I feel okay.” It seems to cycle a little, especially because there’s a lot of unanswered questions right now and the uncertainty is painful.

Right now, I don’t have any useful tips or tricks to cope – or fancy printable resources that I can make and share. In all brutal honesty and transparency, I don’t know how I’m coping and I’m not sure how I’m making it right now. There’s not an inspirational quote out there that will somehow take all the pain away, and no amount of “think happy thoughts!” will mend a heart that’s breaking with grief. It doesn’t work like that. I’ve been contemplating some ideas to help honor my brother’s memory, but I’m not sure yet. Right now, my cat and my fiance are the two things keeping me as emotionally stable as I possibly can.

 

All I know is that grief is a horrible emotion, and it is incredibly complex – and that it can impact every area of your life, especially when you’re autistic. Go to therapy, take up a hobby that allows you to exert some energy/emotion away from you (needle felting is a personal favorite), talk to people, participate in religious activities, listen to or make  music, curl up with your pets, keep talking about your loved ones and keep their memory alive – do what helps you, as long as it doesn’t harm you or anyone else.

 

Grief is not a linear process, and people will experience it differently.

 

 

I did find some resources that other people made, like social stories and advice.
This one is from the UK-based Autistic Society, and it’s intended for autistic people and their families. You can find it here: https://www.autism.org.uk/about/family-life/bereavement.aspx 

If you’re having a crisis or struggling with mental health, you can text “Hello” to 741-741 for the Crisis Text Line – something that I’ve used quite a few times the past few months. It’s through text instead of talking, and for the most part, they’ve been very helpful.

 

What to Expect in Medical Emergencies and First Aid: An Overview

Important note:
The PowerPoint presentation I am posting is not mine. However, I was given permission to post it by the President of the organization (thank you Caroline!), as they thought it would be beneficial to share.

Helpful post time!

Our Neurodiversity Club partnered with the university’s student emergency medicine and response organization (EM/ERGE). They presented on what to expect in a medical emergency – what’s in an ambulance, scripts on calling 911, and knowing when to go to a hospital.

As many people know, emergency medical trips are not fun. When you’re autistic, they’re even more difficult. I actually went into hypertensive crisis a few weeks ago, and it was really hard (I’m fine now; that’s what happens when I miss my infusions, apparently).
Sensory overload, being in pain, etc – it all adds up and can make communicating difficult. I had trouble relaying information to the doctor and ended up crying because of it. I definitely had a meltdown by the time I got home. If my friend hadn’t been there and if my college’s public safety hadn’t been involved (they know me well because of other emergencies in the past), it would have been even more of a traumatic experience.

Because of my own personal experience and knowing how hard ER (or A&E) trips are, I was so thrilled that they put together such a wonderful resource for us!

While it’s not a complete comprehensive guide, it’s honestly really impressive. The student group EM/ERGE focuses on emergency medicine and emergency response, and have first-hand experience in the field.

Here is the .pdf file if anyone wants to look into it! Remember that this PowerPoint belongs to EM/ERGE group, as they put a lot of effort into it.

Medical Emergencies: A Practical Guide

You can reach the group for more questions at EMERGETSU@gmail.com or their Facebook page ETSU EM/ERGE.

 

Extra Resources!

There are also some super useful communication boards online if you are nonspeaking or might have trouble communicating in a emergency situation (which is very understandable). Here are a few:

 

Likewise, I did some exploring and here are some really great resources from one of the websites that has some things in plain language with picture supports. These look very helpful! I’m probably going to print some off with my case manager myself, I think.

If you’re interested, the full list of these can be found here: https://widgit-health.com/easy-read-sheets/index.htm

 

If I find any more, I will add them here!

We’re Listening

Content note: this is a very emotional post and talks about some distressing things. 

I’m in several online autism-centered parent groups.
This is mainly so I can offer support and also learn – as I like learning about resources around to help advise families and friends.

Want to know a secret?
I hate it.

You know how sometimes people warm you to not read the comments?
It’s like that, but worse.

I understand that it’s venting, letting out some sort of pent-up rage into the void.

But – it’s very painful.

I see the posts about young children, and their parents calling them evil.

My blood pressure skyrockets and my chest hurts every time I have to read flyers shared that say “Talk About Curing Autism” or a fundraiser for the dreaded Autism Speaks. I worry as I read about how they use unsafe practices to “cure” the autism. The fad diets, the bleach and chelation, the intensive “quiet hands” ABA torture. A 40 hour work week is rough on most adults; why do it to a child?

I watch as an entire comment thread agrees together that autistic adults belong in group homes, that autistic children will never amount to anything, that autistic children should not be allowed to have an organ donation or that their deaths would “be a mercy.” I see people say that their child’s distress is “such an embarrassment” or that their child would be better off institutionalized and never allowed a voice.

I swallow my stress as I read post after post about how someone “can’t deal with this child anymore” and how “they just want to give them away.” As someone who grew up as a ward of the court, these comments sting too hard for me.

I cry because someone literally says they hate autism, and would rather have a dead child. Straight up posting “I would rather have a dead kid than this” and “I wish my kid was dead.”

Considering I just lost my autistic baby brother – don’t even try to pull that one on me.

Don’t you even dare.

 

I try to keep myself composed, because if I told people how I felt, I would definitely be banned. And even when I speak up politely, I often get shut down.

“You’re not really autistic.”

“You’re too high functioning.”

“You don’t know what it’s like!”

 

A few fun facts:

I am autistic.

I am not a functioning label.

I know exactly what it’s like, both inside and out.

 

I get told “you’ve never had a toy thrown at your head.”

I remember that I was given brain injury that has wreaked havoc on my nervous system and cognition. I have had many things thrown at my head, bitten, scratched, punched, and worse.
And yet, the worst abuse I have ever received was from neurotypicals. I have no anger nor bitterness toward a child who is struggling to comprehend and tame strong emotions.

I am lectured with “you don’t know what it’s like to worry about your child’s future.”

I remember crying alone hysterically the day my autistic brother went to preschool, because I was scared he would be bullied like I was.

I didn’t fear for me, because I figured I would die before I grew up anyway (my mental health was not the best). Now that I’ve somehow survived, I am terrified.

I’m not sure what happens next. I don’t know where I will be living this time next year. I don’t know how I’m going to keep afloat. And you’ll find that most of us autistics are terrified, too.

I listen and read every comment.

“Autism is a disease. Autism is undignified. Autism is disgusting. We need to fight and destroy autism.”

I replace each instance of Autism with a name, whether it be my own or my loved ones. I would type it out, but I do not want to.

“My child is a disease. My child is undignified. My child is disgusting. We need to fight and destroy my child.”

How cruel does that sound?

I’m so used to being called worthless and broken. Our community hears this constantly in professional and parent circles.

 

Even in the conference I spoke at in April, I broke down crying as I listened to the more high-profile guests.

To them, we are a burden. We are missing pieces of ourselves and are too broken. We are deficits in society. Byproducts of genetic disease or environmental toxins, things I overheard constantly during the conference. Books on the counter about the “epidemic” and “problem children.”

All around me were puzzle pieces, anger, people all shouting about the horrible autism epidemic.

My meltdown I had when I got home had nothing to do with public speaking.

It had everything to do with the fact that I felt unwanted and unwelcome at an event that was all about my shared neurology. My friends, my brothers, my loved ones, my sweet fiancé – we are told so much that we are broken. We are told we have no empathy or emotion. We are not wanted, not desired, not needed.

And people wonder why autistics have higher rates of trauma and mental illness?

I know autism is hard.

I am in that odd and awkward perspective, where I am the autistic person, love an autistic child, work with autistic people, and am trying to enter the professional word of special education.

I am not a stranger to the “negatives” of autism – not even the slightest. Yet, I don’t see a child with “deficits” or as a “side effect.”

I see a child who needs supports, love, acceptance, and encouragement. All people, regardless of ability, deserve kindness and to be respected as human beings.

But I can’t say that in these groups – and that’s the real shameful disgrace.

Autistic children, teens, adults – all of us are listening.

 

But are you listening to us?

Anger

Content note for filicide and violence against people with disabilities.

If I have to read about one more parent who says that they wish their child was dead, I will scream. Straight up, I have read “I wish I could kill my child” and “I would rather my kid just be dead already than have autism.”

If I see another post saying that “people with disabilities should be euthanized” and “disabled kids shouldn’t be allowed to have organ transplants,” I will lose it.

Seriously. This is what I keep reading lately. I’m not even exaggerating here.

You know what? Let’s have a little talk first.

Let me tell you what the death of a child is like – from the perspective of this grieving older sister. Let’s have a look at a personal hell.

It’s seeing a little child lying on a cold table, covered with a blanket and a stuffed toy tucked into his arm. It’s looking at all the beloved toys of a kid placed meticulously around a funeral home display – knowing that the child will never touch them again.

It’s reading the little notes from other first graders who are so heartbroken that their friend is gone, with one saying “I wish he didn’t die.” It’s the little drawings of angels frowning and stick figures crying, surrounded by the crayon scribbles of a child who cannot yet explain their grief in words.

It’s watching your mother read to your baby brother’s lifeless body, breaking down into tears every other sentence. It’s watching your other little brother so confused and struggling to comprehend why a child is gone. It’s knowing that your little sister herself never even got to say goodbye to him either, and that breaks your heart just as much.

It’s listening to your grandmother when she first breaks the news to you at seven in the morning, and replaying the absolute pain and distress in her voice for weeks in your head. It’s watching her grieve that she’ll never get to spoil her grandchild ever again.

It’s coming back to school and work, and crying at the mere thought of him. It’s staying up all night because you have to find that home video of you and the child playing together in the living room. It’s that soul crushing realization that you will never find it, and it’s gone.  It’s that one little memory that creeps in, and renders you motionless, grief-stricken, and heartbroken for hours.

You really want to go here?

Would you like to sit in during a Disability Day of Mourning vigil? Would you enjoy sitting there as each and every single name is called out? Do you like the slideshow of the faces of small children, young adults, older individuals whose lives were violently and tragically taken? Can you sit through this and still justify their murders?

Let me clear this up: filicide is not some “mercy killing”. It’s pure evil and cold-blooded murder.

I would give anything to have my baby brother back. Don’t come to me with any justification of his death or any other disabled person’s death.

I’m so tired. This toxic culture of hatred makes me so sick, and I can’t understand it.

And, of course, I’m angry.

Honestly, I’m seething.

 

 

Is parenting hard? Yes.

Does that give you an excuse to harm your child? Never in a million years.

If you harm a child, you never deserved them in the first place.

In Memory

Content note for child death. This is a hard one. 

I haven’t been active on here for a while. Classes have been long, my health has been acting up, but something else has made it even harder.

I’ve mentioned before about my brothers. My eleven year old hobbit, and my seven year old cabbage. Both of them are autistic. My hobbit has always been my baby, and I helped raise him before I left for college. As for my cabbage, I haven’t been able to see him in a while because my biological mom lives in Oklahoma. I also have a sister who is 16, but I unfortunately haven’t seen her in a long time and I miss her.

Last month, my youngest brother died. His name was Liam, and he was my seven year old brother (my little cabbage, a nickname I gave him when he was a baby). I don’t want to talk about the details right now.

30226903_1010209399132892_1924638312069332992_n
A little boy in a yellow shirt is smiling and wearing a comfy camouflage hat.

He was mostly nonspeaking, struggled with meltdowns, and had a lot of difficulty reaching developmental milestones.

He also loved playing on his toy piano, singing along to music, watching his shows, playing with his toys, and was a precious child.

I remember sitting with him in a restaurant and he was stimming, but people were staring – so I joined him instead.

I remember cheering him on as he “played” on my piano in the bedroom. He was so proud of himself with every sound, and it was so wonderful to see his face light up every time I clapped.

He was never a burden. He was a beautiful child who deserved so much more.

Love your children. Protect them. Accept them.

Please, please, please.

 

I miss you, Liam.

 

Executive Functioning and Independent Living

This past Saturday, I presented at the 2nd Annual Southeast Adult Autism Symposium! It was a very fun experience, and I met lots of interesting people.
As always, I try to upload the presentation information online. I know it’s difficult for some people to attend these events, whether it’s due to cost, distance, or other personal reasons. My fiance also recorded the session, and I can upload it if anyone wants it.

The PowerPoint Presentation can be found here:
Organization and Planning – Practical Strategies for Independent Living
(Please don’t use this in a presentation without my permission; thank you!)

Executive Functioning.png
Picture of flowers in the background, with the words “Executive Functioning and Independent Living” and “Just Keep Stimming!”

Independent Living

As my presentation was part of the Independent Living track, it is important to note that this post relates mainly to tools to help you or someone you know live independently. When people think of independent living, they often think of financial freedom, living alone, having a job, and other aspects. However, the most significant aspect of independent living is self-determination and autonomy – getting to make your own decisions and choices.

Independent living also has a vital building block that many people do not cover – the concept of interdependence.

There’s a phrase that comes to mind: “No man is an island.” Contrary to what I thought as a kid, this has nothing to do with geographical features. You have to remember that everyone depends on someone else. Even the most neurotypical, able-bodied person you can think of needs other people. For example, very few of us grow our own food, create our own clothes, and build our phones and computers from complete scratch. All of us rely on other people in some way or another.

Understanding this is the first step to true independence – knowing that it’s okay to need supports and assistance. Never feel bad for needing help. That’s simply just how life works, and it’s okay. Know that your accessibility needs are completely valid.

 

Executive Functioning: A Brief Overview

Have you ever had the feeling of walking into a room and having completely no idea what you’re supposed to do next? It’s remembering that you’ve forgotten, but not knowing what.
Or, have you ever had so many tasks that you get too overwhelmed? A task so daunting you decided to go for a lie down instead?

That’s something many autistic people have every single day.  

One of the things that is quite difficult for many autistics and neurodivergent people is something called ‘executive functioning.’

It’s the mental processing involved in making decisions, multi-tasking, organization, and getting started on tasks.  It’s not exclusive to autism, though. It happens in people with ADD or ADHD, neurocognitive disorders, and even mental illnesses such as depression and PTSD.

Executive functioning has several different aspects that often overlap together. These include:

– Inhibition
– Shift
– Emotional Control
– Initiation
– Working Memory
– Planning/Organization
– Organization of Materials
– Self-Monitoring

For this post, we’re only focusing on planning and organization.

One of the most significant issues with executive functioning is the assumption that the person is lazy.  This is often the case when the person is a teenager or young adult- especially as teens and young adults are often known for the stereotype of being lazy.

However, it can actually be detrimental to accuse the person of laziness. Many times, they already are frustrated with the difficulties of executive functioning. The scolding, in turn, can exacerbate stress on the person and cause greater difficulty in functioning.
Of course, we can be lazy too. It’s okay to be lazy sometimes; relaxing is a perfectly healthy thing to do! That’s an entirely different conversation.

Someone who struggles with executive functioning may have difficulty with organizing tasks. If you give them several instructions at once, they may feel overloaded and overwhelmed. They may even have trouble remembering what you told them. When this happens, they may not be able to do them at all – or only one or two. For myself, I’ve sat in my floor for two hours because I was trying to process my tasks for the day. My brain has to pick each step apart so I can fully grasp it, or else I become overwhelmed significantly.

How to Cope with Executive Functioning

Let’s face it: “adulting” is hard work.

It’s hard to keep track of everything. Doctor appointments, chores, medications – it can get overwhelming really fast. I get stressed out by the smallest details, because there’s simply just so much going on at once and I can’t process it.

When you’re living independently, these things are all very important. However, when you’re autistic or neurodivergent, “adulting” is even more difficult.

Physical and Online Resources

One of the most important things to keep in mind is resources. There are some resources out there for adults with intellectual and developmental disabilities, although sometimes they can be hard to find. I will have a link to all of these at the end of the post.

For physical resources, there are some that are often local-based. For example, there are several Arc chapters across the United States. The Arc is an organization that helps individuals with intellectual and developmental disabilities, as well as their families. They can help connect people to community resources and services that people may otherwise not be aware of. Our local chapter here is quite wonderful.

There is also something called Home and Community-based Services, which is related to the Medicaid waiver. This is intended to help people with disabilities live in the community instead of institutions. Unfortunately, these programs usually have waiting lists. Programs vary by state. Tennessee, for example, has the Employment and Community First CHOICES program. This takes the place of the Medicaid waiver.

As well as this, there are places called Centers for Independent Living. These are not institutions, but are meant to be a community resource to help people live in their community. Another important organization related to this is the National Council for Independent Living.

Another resource is to find social groups in the area. Social supports are important for both your physical and mental well-being. When you have an intellectual or developmental disability, it’s important to establish and maintain friendships and connections. We’re much more likely to struggle with mental health concerns, which often stem from a lack of resources, acceptance, and accessibility.

For online resources, there are a lot of great websites and posts by autistic self-advocates. I’ll list them at the end of this post.

Tips and Tricks for Executive Functioning

For my presentation at the conference, I focused mainly on the practical aspects to help with independent living.

Statistics and numbers are great, but in a conference, I’ve found that people tend to prefer to learn about things that can be implemented or are applicable to related situations.

Most of the following strategies may be things you’re already aware of. Many of them are tools that people tend to take for granted, or don’t realize the importance of. While some may seem quite simplistic or obvious, please keep in mind that some people rely heavily on these things – and that others may have not even considered these as tools to help with executive functioning.

 

“First, Then” Boards

If you’re more picture-oriented, a “First, Then” board is also very useful. When my brother was first diagnosed, that was often used. We had a really nice binder with lots of different pictures, and it was great. It helped him transition more easily, and it helped prevent frustration a little.  I secretly wanted one for myself, to be honest! We used them when I was with my friends in the CDC classroom as well, and they were fantastic.

They are more well-known for younger kids, but sometimes they can be great for very short-term tasks or shifting focus.

first_then
A small example of a ‘First, Then’ board. This one is from a Vanderbilt ASD module – which of course, doesn’t seem to show any girls in its examples.

Visual Schedules

For myself, I’ve been in the process of making several visual schedules for my dorm. It might seem a little childish, but it’s really helpful to have a visual prompt and simplistic list of steps to keep me on track in the mornings.

Part 2
A visual schedule listing each step for getting ready in the morning. I made sure the images were cute – a way to make me feel a bit more cheerful as I checked off each list.

If you’re a visual person, these can be very helpful. You can make them look more mature or “age appropriate” if you need to, but I like my little cartoon images on mine. It looks less clinical and more happy.

These can be found online and in classrooms. You can even make your own and laminate it! Afterwards, you can use a dry erase marker or even velcro if you want. It all depends on what works best for you.

Post-it Notes

In my previous dorm, I had several post-it notes around my room. These were used to remind me of important tasks, as you can see below.

Post-it Notes
An edited collage of several post-it notes from around my old dorm room. Many cover things such as eating, self-care, and chores that need to be done. Many of these are no longer applicable, such as the Ensure drinks and medication times.

Some of these things are processes I’m actually quite good at, such as looking after my Leia Lyta. This is because cats are mostly self-sufficient, and I tend to prioritize her anyway. Cats don’t let you forget.

Other things are things I sometimes need reminders on – like brushing my hair or taking my meds. When I used these, I was having significant difficulty with remembering to eat.
(Tip: if you or your kids have issues with this sort of thing, nutrition drinks are the way to go. They’re sometimes actually not that bad once you find the right flavor for you.)

If you’re using Post-it Notes, it’s important to make sure you place them in a visible area.  Don’t forget to move them around occasionally as well. Your brain will get used to the note, and it may no longer be effective. When the notes begin to be a part of the background, your mind may filter it out.

Medication Organizers

If you take any medications (especially if you have several co-occurring conditions), it’s important to remember to take your medication when living independently.

Picture1
A colorful medication box, with four compartments for each day.

I am unfortunately not very great at remembering to take my meds. I’ve found that using a medication box and organizer is really helpful. However, it’s important to refill the box on time. I have to be nudged because sometimes I forget, and get a little stressed out over making sure everything is in its correct place.

If you find it to be a stressful task, it’s okay to ask someone to help. Like I said earlier, independence is all about interdependence.

Technology

Many people have a very useful tool already on hand – the smartphone! From apps to pre-installed operating system features, phones can be incredibly useful.

Alarms and Timers

reminders
A phone alarms menu and a medication reminder app menu. The medication reminder app is called ‘Round,’ if you’re curious. I’ve yet to find an app I prefer the most. (Edit: Since I last posted this, there have been several medication changes and additions.)

 

When you use alarms, they can serve as great methods of reminding you to do things. Some also pester you until you do the thing – a feature I’ve found useful with medication apps. I still haven’t found my favorite app to use yet, although Medisafe and Round have proven to be quite helpful.

Make sure you don’t use your favorite song if you worry about getting tired of it. Likewise, make sure that the alarm does not startle you or make you feel anxious. I tend to prefer vibration alarms because I’m hard of hearing. I may not always hear the alarms go off, but I have a Fitbit/medical ID alert wristband that can get my attention by buzzing at me.

 

Planners and Organization

As for daily planners and organization, I have several methods. My main calendar is through my phone, per the typical college student’s life.

planner
A side-by-side view of my two calendars I used to keep up with classes and appointments. I usually only have to put data in one of them and they sync. However, the one on the left (iStudiez Pro) also has the option to include assignments and due dates.

Phone calendars can be very useful for marking plans immediately when made. You’ll find that the in-built calendars are useful, although there are apps that can do more. These apps should work with accessibility features such as VoiceOver, but not always. It’s important to keep that in mind if you rely on these important features.

Habit Trackers

There are several apps that can help with keeping track of habits and daily tasks.

Picture1
This is a screenshot from the Habitica app. You can see the list and “stats” bars at the top. Also: my little avatar has a wheelchair like me!

This app is called Habitica. It’s free, and similar to a role-playing game (RPG). I have a lot of friends (both autistic and neurotypical) who love this app, and use it daily. It uses the gaming aspect as a motivator to complete real-life tasks, and is intended to help with establishing and maintaining daily routines.

 

Pen and Paper Methods

Many people prefer to write down things, especially those who learn best through writing and muscle memory.

Agendas and Planners

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A page from my personal planner. At the bottom is a habit tracker as well.

I recommend color-coding the information, as it can help your brain organize and associate things together. Handwriting may not be beneficial or feasible for some people, and that’s okay! Remember, always do what works for you.

Some people even prefer wall calendars or desk ones. I use different ones with mostly the same information. It helps me remember, but it also gives me a rough idea of how my day is going to go. With this information, I’m much less likely to have a meltdown or get too stressed during the day.

Worksheets and Lists

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A worksheet organizer to help keep track of assignments.

Things such as worksheets and executive functioning handouts are also incredibly useful. I went over some of them when I did the executive functioning workshop a while back. The best part is that you can use them to work out complex situations – or simply just to get a better understanding on how to keep your brain motivated and in tune with your daily activities.

There are several places where you can find these, from exploring printables  on Pinterest to even speech therapists. The one posted above actually came from my speech therapist at the time.

I have a few resources and worksheets on file, but I’m not sure if I’m allowed to post them. f you want any of these resources, just send me a message and let me know! I can usually find printable things to help.

What if I have no motivation?

Writing, planning, and organizing is great – but it doesn’t necessarily motivate you to do the things. Sometimes, it’s hard to gather the motivation or energy for tasks that many people consider simple. This is especially true for those of us who have depression, chronic illnesses, and other co-occuring conditions.

If you’re absolutely too drained to do anything, pace yourself. Break things into steps, and take breaks if needed. You can set a timer to have a 15 minute break, and then go back to the task. And if you’re just not able to do the task, it is okay to take a step back. Autistics can go through burnout and are more likely to have meltdowns when they push themselves too far – or try to “pass” as neurotypical for too long.

If you’re noticing that your executive functioning skills seem to be less controlled, it could be a sign that you’re headed for burnout or a meltdown. I talked about meltdowns in a previous post, as those can be hard to deal with. If you realize this is happening, remember that it’s your body and brain’s way of telling you to slow down and breathe. Us autistics are much more likely to struggle with mental illness and other serious situations, much of this due to a lack of supports, accommodations, and acceptance.

Again, there is no shame in needing extra supports. If you’re struggling, it’s okay to take a break, request that extension, or ask someone for help. Like I said, everyone depends on someone else. It’s okay to need support.

 

Resources and more information on executive functioning:

Physical Resources:

Online Resources

More Information on Executive Functioning

 

For those who are interested, here is the video of the presentation:

 

A Beginner’s Guide to the IEP

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The background is a notebook page with two pencils. The words say “A Beginner’s Guide to the Individualized Education Program! An Overview of the IEP Process.”  Off to the side is a purple square that says “Just Keep Stimming, Autism Advocacy and Resources” with a flower inside.

 

If you’ve ever attended an Individualized Education Program (IEP) meeting, you know how stressful they can be. I remember attending my own IEP meetings as a child, as well as looking over my brother’s to check for mistakes.

As part of my degree courses, I took a class this past semester on how to create and write an IEP. For my final project, I had to actually write one from scratch based on a fictional neuropsychological evaluation. I’ve put together a binder with information, but I think an online version would be helpful too. I’m not a professional, but I hope it helps some.

Note that this is more aimed towards parents as it deals with individuals under 21 in a public school system. However, if you are a student with a disability, this information is important for you to be aware of.
Contrary to popular belief, including the student in the IEP process is important and has several benefits – especially in the emphasis on self-determination and autonomy.

The Basics

The Individualized Education Program (or Plan, as it is often called both things) is actually part of an important law called the Individuals with Disabilities Education Act – known as the IDEA. It’s the document that ties a lot of special education services together, and is incredibly important. The document is also called an IEP.

The IDEA is one of the most important laws for kids with disabilities, and it has several components. While it covers other things, we’ll focus on just the IEP – your rights, what’s in it, what they look like, and some helpful tips.

The IEP covers students in public schools from ages 3 to 21. Unfortunately, private schools aren’t required to accommodate students with disabilities by the IDEA. If your child is in private school, you may have to fight harder for supports.

There are aspects and concepts regarding special education that you (whether you’re the student, parent, guardian, etc) should be aware of.

Things You Need to Know:

  • Procedural Safeguards
  • Free and Appropriate Education
  • Least Restrictive Environment
  • The IEP Team
  • Prior Written Notice

Procedural Safeguards:
This is basically a guide to special education services. Every parent/guardian should receive a copy of these, as they detail all of your rights. I have a few links at the end of the post with resources.

Free and Appropriate Education:
This is what every child in special education is entitled to, and is often referred to as “FAPE.” Free means that the school has to provide the necessary resources for your child, and the resources must be “appropriate,” as in beneficial.

Least Restrictive Environment:

This is also referred to as “LRE,” and is an important stepping stone to inclusion and universal design. A child should be included with their peers as much as possible, while also receiving services that are necessary for them to thrive in a school setting.

The IEP Team:

This is the team that makes and provides input to create the IEP. The people who are absolutely necessary to be involved include: the parent, the student, a general education teacher, a special education teacher, a school district representative (often the Principal), and someone who is qualified to explain assessment and test results (sometimes the Special Education teacher, or a school counselor). If the family’s primary language is not English, they have a right to a translator as well.

Other members can include those who provide services in the school setting, such as speech therapists, occupational therapists, and even school nurses. You can also bring a friend for moral support, or even an advocate/expert in special education law.

Prior Written Notice:

This is something that IEP teams need to keep in mind. It basically means that all services and things discussed should be written down – whether they are accepted or rejected. It helps parents to know why a suggestion was rejected – and establishes a very helpful paper trail if there is any issues that arise.

Here is a page that discusses the PWN in much more detail. This can be extremely useful if you feel as if your requests are being ignored: http://www.wrightslaw.com/info/pwn.refusal.martin.htm

(Thank you to Bonnie for reminding me of the PWN in the comments; I knew I had forgotten something!)

The Document Itself

If you’ve never seen an IEP before, the entire process may seem extremely daunting. However, don’t worry! Let’s break down what is actually in it.

What’s In the IEP:

  • Present Levels of Performance
  • Measurable Annual Goals
  • Accommodations and Modifications
  • Testing Adaptations/Alternate Assessment
  • Individualized Instruction Methods
  • Progress Monitoring
  • Start/Frequency, Location, and Duration of Services
  • Statement of Special Education, Related Services & Supplemental Aids
  • Statement of the Extent of Non-participation in General Education Settings
  • If the child is 16, they should also have a transition plan.
    • This consists of post-secondary goals and transition services that will help them to be involved in their community and grow.

I know this seems like a lot of educational jargon (and it is, to be honest), but please don’t feel intimidated! I’ll go over each of these in detail.

Present Levels of Performance:
This is simply a summary of a child’s strengths and areas of concern. It details academic performance, current social skills and behavioral health, and other subjects relating to how the kid is currently doing in school.

Measurable Annual Goals:
This consists of goals that the IEP team creates together. In addition to academic goals, it can involve personal goals such as improving independence skills like tying shoes or buying lunch by themselves in the lunchroom without the help of an aide.

Accommodations and Modifications:
While these are often seen together, they are two separate aspects of the IEP. Accommodations are intended to increase access to the material, while modifications modify the curriculum. This is an important distinction to make, as school systems tend to be less willing to provide modifications than accommodations.
An accommodation would be having a note taker or preferential seating near the front of the classroom. Other accommodations could include sensory breaks or allowing for snacks. A modification, however, would be shortening the amount of math problems or offering a workbook intended at a lower grade level.

Testing Adaptions/Alternate Assessments:
This is especially important for state assessments. In Tennessee, we always had T-CAP testing when I was a child. The IEP will list any adaption needed or if the student needs an alternative assessment instead.

Individualized Instructional Methods:
This simply means that the IEP document should be individualized and the education plans should be tailored to suit the child’s needs.

Progress Monitoring:
This relates back to the measurable annual goals, as it discusses where the child currently is in meeting their goals.

Start/Frequency, Location, and Duration of Services:
This is a detailed look at all the services provided to the student. It helps everyone on the team to understand exactly what the student will receive, as well as the where and how. This is also important, as you need to know how often the child is being pulled out of general education settings.

Statement of Special Education, Related Services & Supplemental Aids:
This describes the services, accommodations, modifications, and other aspects related to the student’s education.

Statement of the Extent of Non-participation in General Education Settings:
This is in relation to the policy of least restrictive environment and inclusion. This statement specifies the exact amount of time that the student is away from their non-disabled peers and general education setting.  This is extremely important, because while you want the student to receive the best supports available, children should never be pushed away “out of sight, out of mind” from the rest of their peers. Many disability advocates feel that to seclude students with disabilities is discrimination and segregation. This is one of the many reasons why I’m personally a huge fan of universal design.

Transition Plan:
This is often first implemented around the age of 14-16, and focuses on post-secondary goals. Employment and community involvement are the main two aspects that are usually focused on. This is a very important but often forgotten part of the IEP.

If you would like to see an example of an IEP, this is the one I created for class. Remember, it is definitely not perfect as I’m only a student. However, it may give you some idea of what an IEP would look like.

Written IEP Project

The Meeting

If there is anything a parent or student hates the most about the special education process, it tends to be the IEP meeting. In my experience, they tend to occur about once a year – although it’s necessary to note that you’re not isolated to just one meeting. You can request more than one if you feel that the student’s needs aren’t being met.

I recommend bringing a friend or an advocate with you. Many parents go into the meetings feeling as if they’re going to fight a war – and sometimes, they’re not wrong. However, having someone with you can give confidence and emotional support. And if this person is familiar with the IDEA and special education law, having them with you can be immensely beneficial. Many parents and guardians feel outnumbered when going to the meetings, especially if there are disagreements on handling the student’s case.

If you have any new paperwork regarding the student’s condition, make sure to bring it too. If the child’s doctor thinks that they should be getting counseling at school in addition to their speech therapy, the school will often want documentation. You’ll find that some people just really love paperwork, if we’re being honest.

Don’t be afraid of the meeting! Make sure to look at the Procedural Safeguards prior to the meeting, because it will help clarify things and make sure you’re not “out of the loop.” Try to be level-headed as much as possible and remain calm. While it might be tempting and satisfying to “go off” on the rest of the IEP team, it may not be as effective. Be prepared to negotiate, but think of it as a team effort. Essentially, that’s what the meeting is – a team putting everything together to help your child succeed.

All of that said, don’t be afraid to speak up. Sometimes, you may have to fight; in that case, “going off” on the school may be unavoidable. Be stern, but try to not yell at people when possible.

And of course, take it easy after the meeting. This applies to parents, caregivers, and students. As I’ve said before, self-care is necessary for your mental and physical health. This could range from having a bubble bath when you get home or ordering a pizza instead of cooking dinner. I also recommend a nap; you may find that you’re exhausted emotionally and mentally if it’s a particularly stressful meeting.

An Important Note

Sometimes, the school system may not cooperate or they may do something illegal. While it’s recommended to resolve this using mediation and resolution sessions, disputes can sometimes escalate.

This can end up leading to something called “due process,” which is basically a court hearing. When this happens, it’s not a good time – and can even go all the way up to the Supreme Court.

Here are several things that can cause schools to be held accountable for violating the IDEA:

  • Not following procedure (restricted parent involvement, not following FAPE, ignoring referrals, etc)
  • Telling parents a child would benefit from a service, but can’t afford it
  • Refusing to provide a service because “we never did it before and it was fine.”
  • Making decisions out of anger or to prove a point
  • Not acting quickly to provide services and programs for a child after implemented by the IEP team
  • Relying on cultural bias and prejudice when referring a child for special education services.

Another important thing to mention is the increased use of RTI – which is called Response to Intervention. RTI uses tiers to determine if a child can respond to class or school-wide implemented strategies, and has some aspects of universal design involved. It prevents kids from being placed in special education due to failed teaching instruction.  While it does have some improvements from the previous system, it has also caused some schools to think they can delay the IEP process – because they do not want to provide services. It has been referred to by some as the “Watch them fail” model, as opposed to the previously used “Wait to fail” model. Some schools will use RTI as an excuse to not provide services. If a child already has an IEP, that IEP should be followed – and RTI cannot be used to deny services and supports. That’s not how RTI is meant to be designed.

It is important to note that RTI cannot be used to delay/deny the provision of a full and individual evaluation. This was released in a memo in the Department of Education, and mentions regulations at 34 CFR 300.301(b), as well as 34 CFR 300.304 – 300.311.

Overall, the IEP can be quite daunting and stressful – especially if you have no background with special education or have not encountered the process before. For some, it can be emotionally draining, too.  It’s completely understandable to be overwhelmed or confused.

However, you’re definitely not alone.

Take a deep breath. You’ve got this.

Resources:

There are resources and help available, and there are supports out there. I’ve dug around the internet a bit and compiled a few here. I’ll add more as I find them!

Procedural Safeguards

 

Prior Written Notice

Guides for Parents and Caregivers

Special Education Law