Things I learned over the past year about: autism, and the autism community.

Things I learned over the past year about: autism, and the autism community.

1: Early intervention is key!

2: More easily accessible services need to be made available for persons on the autism spectrum.

3: Autistic vs. Person with Autism vs. Person on the Autism Spectrum. Learn the distinction, implications, and what each individual prefers to be called

4: Autism self-advocates need to be included in the discussion about their issues

5: Parents, siblings, & educators are a force to be reckoned with.

6: Researchers need to make newly found information easily accessible and easy to understand.

 

2014 Goal: My goal of 2014 is to learn more about the disability rights movement, autism interventions, and cross-cultural perspectives on autism.

Order up!

So, I’ve got a problem. It’s a Friday night and everyone’s piling into the restaurant for a quick bite to eat. You’ve got my parent’s in the back, cooking up a storm in the kitchen, and you’ve got little old me working the tables. What’s the problem you ask? Oh nothing, just the fact that I’m the only waiter at a restaurant that seats about 50. My brother has about 50 different personalities that all need service and attention. At table 3 he’s having a fit because I haven’t reached his table yet. At table 8 he’s drawing on the walls, and at table 1 he’s trying to walk into the kitchen to cook his own food. As I try not to pull out the 5 strands of hair left on my head, I ask myself, “What can I do”.

So many times have I asked myself, “what can I do to help my brother talk”, “how can I calm him down when he’s screaming at the top of his lungs”, “how do I help other people understand autism so that the world can be a safer place for him”? I still don’t know the answers to all of my questions, but in the meantime, the tables need to be attended to.

Being a sister, not a parent, to my brother puts me in a unique situation. I’m not completely responsible for him, but I have a responsibility to my parents, to him, and to our family, to help out as much as I possibly can. I’m not a parent, but I’m old enough to know how to mediate situations between my hardworking parents and my boisterous brother. Having worked in a kitchen before, I know that  when the chef says “Order up!” I’ve got to pick up the plate and make those customers happy.

A household with autism operates very much like a busy restaurant. With that being said, as long as my parents keep cooking up the food, I’ll be happy to deliver the goods to my rowdy little customers!

-Ijeoma

Idea Bank #1

I’ll preface this post by saying that I’m trying out a new blog segment I’ll call my “Idea Bank”. Any idea that I have to further aid in the understanding of autism and other developmental disabilities goes in the bank. As far-fetched as some ideas I come up with may be, I hope in the future to implement some ideas I come up with. I’ll also try to highlight some of the exciting autism-related research that I come across.

Idea Bank #1

I would love to read a research article titled:

The different names of autism: Exploring different cultural understandings of autism.

The title may need some work but it gets the point across. This idea sparked from a conversation I had with friend of mind. While conversing about how little we know about certain developmental disabilities, I expressed my wish to be a part of a research team that explores how different cultures handle their autistic communities. After all, many countries may have different names for autistic individuals: “cursed”, “psychic”, “spiritual”, etc. I think the key to helping individuals with autism is to properly diagnose them. In order to properly diagnosis autism, we need to find out its many names.

I recently found an exciting new research project that’s goal is similar to what I suggested above. “Culture and Autism: How Cultural Norms Shape the Neurocognitive Development and Societal Understanding of Autism”. I’m excited to see what insight will be gained from this! Kudos to the principal supervisor: Dr. Atsushi Senju (Birkbeck), and the co-supervisor: Dr. Liz Pellicano (Institute of Education).

Compassion Fatigue

        So I was on the Atlanta Journal-Constitution website and I came across an article titled Overcoming compassion fatigue, by Laura Raines. The article stressed the importance of self-care and offered suggestions on how nurses can overcome mental exhaustion. Although the article specifically focused on nurses, I think by the show of hands, almost everyone in the room can relate to this topic.

As you may or may not know, my 7 year old brother is on the autism spectrum, and because I am a recent college grad and haven’t a penny to my name, I serve as my brother’s unofficial occupational therapist, speech therapist, music therapist (guess those 4 years of band paid off), art therapist, and babysitter. Yes, I have a plethora of unofficial titles, but unfortunately “unofficial OT” isn’t really resume- worthy. With all of that being said, there are several times where I feel like too much is on my plate. I’m sure my parents have their share of exhaustion BUT this blog post is about me #narcissism. They can drive to their workplace, talk to their friends, go to the store, and come home later on in the day. I on the other hand am home 24/7, have to study for the MCAT 10/7, and watch my brother when school is over 7/7. It’s exhausting to say the least. But of course, I have read and come up with several solutions to the problem!

1.Getting the mail.

As sad as it sounds, getting the mail is one of the most exciting parts of my day right now. I’m exaggerating a bit, but getting the mail gives me a reason to go outside and get some fresh air. I’m usually in my house, at a desk, hunched over with my MCAT prep material trying to retain some info—and I often forget that there is such a thing as “outside”.

2.Talking with people my own age.

Even though I have to babysit on a regular basis (and happily do so for the most part), there are times where I desperately need get out the house. At times like this I tell either parent that I’m having lunch with a friend, and run before they change their mind. If I can’t do lunch, a long phone call will suffice.

3.Chess + Music

I designate at least 2 hours every day to playing chess on my computer and listening to music. Maybe can go pro one day! (Probably not).

-Written by Ijeoma

Let me know how you handle mental exhaustion in the comment section below. Thanks for reading!

Discipline

I haven’t the slightest clue on how to effectively parent a child, but I am well-versed in disciplining a child, and by child I mean Mark. Let me just start by saying that until the age of 5, I had no idea how discipline him because he kind of did his own thing. He made little to no eye contact and barely spoke any words. He mastered the art of ignoring people, and I wasn’t even sure if he could understand what I was saying. It made disciplining him hard because I didn’t know if he knew what the “time-outs” or “no’s” were for. Now that he’s gotten older, and has shown me clear signs that he understands right from wrong, I have no excuse not to discipline him. And let me clarify what I mean by discipline.

Before I went off to college I never really scolded him or punished him for anything he did wrong. My parents did the disciplining. Actually, most time he got upset he would come to me and I would either sing nursery rhymes relentlessly or read one of his favorite books to him until he calmed down. During college, I would come home on weekends/breaks—and my parents noticed that he would have especially good behavior when I was around. I guess he didn’t want me to see him doing anything bad (i.e. throwing huge tantrums, not listening to instructions) because I was his source of entertainment. I mentioned the power of “incentive” in my Communication ABC’s post, and this really comes to play when getting Mark to behave himself. So now that college is over, and I’m starting to see Mark’s tantrums in their full glory, this is how I discipline Mark—I give him the glare of disapproval. No reaction is the best reaction to his shenanigans.

If Mark purposefully starts a big commotion over not getting his way, all I do is stare at him, and 50% of the time he stops fussing/crying.  If its bedtime, and he starts having a meltdown because he doesn’t want my mom to put him to bed—I just pop my head in the room, stare at him disapprovingly, and he eases up for the most part.  I call this “disciplining” due to the fact that it gets the job done—in terms of letting Mark know that what he’s doing is wrong. This method is effective for me because Mark has yet to see me completely angry and at my wits end with him—and he does his best to prevent THAT from happening. Hopefully I can keep this up for a while!

written by Ijeoma

The Four Levels of Crying

The 4 levels of crying

1. The Crocodile Tears
2. The Action-Potential
3. The Divider
4. The Point of No Return (BOSS STAGE)

Mark has very distinguishable cries. And depending how me, myself, and my parents respond to these cries means the difference between a level 2 cry, and a level 4 cry.

Level 1: The Crocodile Tears

When Mark is being petty and doesn’t get his way, he’ll cry crocodile tears. This cry is identifiable by the lack of tears coming from his eyes. It’s a pretty self-explanatory level, and pretty funny to watch actually. It’s nice to know that at 7 years of age, he’s already showing his acting capabilities.

Level 2: The Action Potential

**ship=tantrum

Quick Biology Lesson: Action Potentials are “all-or nothing” signals. Once the stimulus reaches a certain threshold, the action potential fires, and cannot be undone. Main point: once the ship sets sail, it’s gone . This level is tricky and hard to amend depending on the situation. Let’s say Mark was running, and then he fell and hurt his knee. I have less than 4 seconds to “make it all better” or else he’ll full out bawl. If any cause of his discomfort/annoyance is irritating enough and he starts to get upset, I usually have about 4 seconds to ‘sing every song he likes and dance like a monkey’ or else the ship sets sail i.e. he cries. People, let’s keep these ships docked; dance your heart out.

Level 3: The Divider

If Mark gets to this stage, it’s pretty bad, but still amendable. Here we have the typical, all too real “cry”, accompanied with your usual jumping and uncontrollable tears. Consoling still works at this stage, but most of the time you just have to wait it out, and he/she’ll come around after a few minutes. The is the stage where ‘time-outs’ are issued, or maybe a few light ‘spanks’ are given here or there depending on the reason for tears, but either way this stage is called ‘The Divider’ for a reason. This is the final level for Neurotypical (NT)/Non-autistic children; however, the final level of crying is reserved for children on the autism spectrum.

Level 4: The Point of No Return (aka. BOSS STAGE)

For those of you not familiar with video games, at the end of off all of the levels, one reaches the final level where he or she must fight the boss of the game to win. This, my friends, is the final level of cries. Only the most powerful are equipped with the strength and skills needed to handle such a level. Parents and siblings of children on the autism spectrum experience level 4 cries on a regular basis (or irregular basis depending on how ‘high/low-functioning’ their child is). All I know is that when Mark was 2, I felt as though he set up camp in level 4, and never cried on any other level. In public it would be ESPECIALLY awkward because many people don’t experience Level 4 cries often—and are often times bewildered.  At age 7 Mark has matured. He still has his meltdowns but they are way more manageable. My solution for level 4 cries is to: have patience, take deep breaths, and find your happy place!

-Written by Ijeoma

Communication ABC’s

One difficulty some parents may have with their children, autistic or not, is: lack of communication. I sometimes think my 7 year old brother might as well be a teenager with an iPhone. Parents struggle with communicating with their kids for various reasons.  In my parents’ case, they just haven’t mastered my brother’s language yet. Lucky for them I happen to speak Mark’s language fluently.

Now folks, usually I charge for this service, but because we’re a community of sharing, I’ll let you in on the secret. Parents, if you have an autistic child, and other children who are not on the spectrum, spy on your kids playing. Get out the camouflage, a notebook, some walkie-talkies, and hide behind that huge chair in the playroom. You’ll be amazed at what you’ll see. One thing I noticed is that Mark acts differently depending on who he’s interacting with. If my parents have left for work, and it’s just me and him alone in the house, he’s an angel.  He’ll repeat the words I ask him to repeat, he’ll sing some songs, write words, do some addition problems, watch Super Why, and play games on the computer. The second my parents get home, he’s like “let the games begin”.

I noticed that when he’s in school, or with me, he listens and follows instructions well. But with my parents, he has learned how to manipulate them into doing what he wants, and acts up the second he doesn’t get his way. This is the reason: incentive.  Autistic children are very observant. They’ll act as if they’re not paying attention, but they really and truly hear every word, and know what’s going on around them. See with me, Mark has incentive to listen and interact with me to the best of his ability because his reward is that I’ll play with him and give him loads of attention. He doesn’t act up because he knows that I am the ticket into the theater and he doesn’t want to miss the show. With my parents, they don’t play with Mark as much, and because they’re usually tired from work, they’re not nearly as much fun as me–Just keeping it real. So Mark has no incentive to listen/pay attention to them because it’s not like he’ll be missing out on anything.

So to all you parents, sisters, brothers, and guardians out there, my message to you is: be fun, and develop a POSITIVE incentive for your child/sibling to listen to you. Let me know if you see any results or know of any other methods you use to improve communication between your child/sibling.

-written by Ijeoma

Repetition is Repetitious

If anyone told me that today at around 3 in the afternoon I would have to draw about 80 moons on a piece of college ruled paper, I’d say: why not 100 moons? If someone told me that today I would have to sing the Caillou theme song about 50 times, I’d say: where are the next American Idol tryouts? Throughout the day, Mark has me performing several various tasks over and over again. Why you ask? Because he has signed me up to compete in the Do Whatever I say Until I Tell You Otherwise Olympics.

Now, all the tireless, hard-core moms out there would blow me out of the main competition. So Mark signed me up for the Sibling Repeat Races. My daily training regimen includes: counting from 1 to 200, pretending I’m the cookie monster and chasing after him for 2 hours, drawing 20 apples in various colors, singing the ABC’s 5 times, reading Dr. Seuss’s Sleep Book 3 times, watching his favorite YouTube videos for 2 hours, and singing High School Musical songs till he gets tired of listening.

Olympics talk aside, Mark has benefited a lot by watching me attempt to sing a dance. For one, he is more verbal. When he was two he rarely spoke at all, now at 7 years, he can command people and tell them what he wants. It all started with him repeating the name of the songs he wanted me to sing, or naming the book he wanted me to read 50 times.

Okay, I have to get back to training now. But if you have any secret mom techniques or have a different training regimen, feel free to let me know! We’re in this competition together!

Written by Ijeoma

The Power of Mother Goose

For many parents, the responsibility of having to care for a child with autism may prove to be extremely challenging.  The tantrums, the allergies, and the lack of communication all can drive anyone up the wall. While I can safely say that parents jump and tackle the bulk of the issues, credit must be given to Mother Goose as well.

I found out that Mark had autism when he was around the age of two. He brought new meaning to the term “terrible twos”. Every evening at about 9 or so when he had to be put to bed it was like war. With my parents on one side and Mark on the other the Battle of Bed commenced.  Unlike watching a movie I couldn’t just sit with my popcorn and watch, Mark’s battle cries were pretty unbearable to hear.  I’m not the fighting type, so, instead of running into battle with a blow horn and battle axe I decided it was time to bring out the secret weapon: Mother Goose.

The thing I learned about autistic children is that although they can get caught up in their own world, they can always be brought back down with a good ole’ fashioned nursery rhyme. The trick is that you have to be as animated and crazy as possible. You can’t half-act the characters either, you have to be that Little Miss Muffet, you have to be both Jack and Jill, and you have to be that mouse running up the clock!  So as Mark was getting ready to swing, I counteracted with the power of Mother Goose.

To this day Mother Goose still comes to the rescue at times. I suggest you give reading it a try. By no time, you’ll add this book to the collection of children’s books you’ve already memorized.

-written by Ijeoma

Book Mentioned:

Mother Goose: The Children’s Classic Edition by Courage Books

Introduction

Welcome readers!

My name is Ijeoma. I’m a 22 year old recent college graduate. I have a 7 year old autistic brother named Mark. On this blog I hope to share some of my experiences growing up with a sibling who is on the autism spectrum. The name of this blog is “Cake and Monkeys“, which are two of my brother’s favorite things. Enjoy!