Spectrum of emotion

The myth out there is that only those on the spectrum struggle to regulate their emotions.  But it’s not like that at all.  Those of us with ADHD also have a REALLY hard time regulating our emotions.  We can often be fine one minute and exploding the next because our brains are so difficult and so busy.

We often think more things in 5 minutes than most people do in 5hrs.  It can go from being prepared to head out the door to looking for things you can’t find, to what you are doing later, to what you want to do for dinner, to what you have going on next week or next month…just totally random thoughts that have no real rhyme or reason.

We are like time bombs and can be hard to handle.  We listen to what is being said to us but often our brains are so busy thinking of so many other things we don’t really absorb what is being said…the key is to make it short, clear and concise so we get what we need and can get on it.  That being said staying on task is also really really hard for us.

Here are 20 things that may help you understand what people with ADHD are going through…

It’s a fact; a person with ADD/ADHD is hard to love. You never know what to say. It’s like walking through a minefield. You tiptoe around; unsure which step (or word) will be the one that sets off an explosion of emotion. It’s something you try to avoid.

People who have ADD/ADHD are suffering. Life is more difficult for them than the average person. Everything is intense and magnified. Their brilliant minds are constantly in gear creating, designing, thinking and never resting. Imagine what it would feel like to have a merry-go-round in your mind that never stops spinning.

From emotional outbursts to polar opposite extremes; ADD/ADHD presents several behaviors that can be harmful to relationships. ADD/ADHD is a mysterious condition of opposites and extremes. For instance, when it comes to concentration, people with ADD/ADHD cannot concentrate when they are emotional or when their thoughts are distracted. However, when they are interested in a specific topic, they zone in so deep that it’s hard to pull them out of that zone. Starting a project is a challenge; but stopping it is an even bigger challenge.

True love is unconditional, but ADD/ADHD presents situations that test your limits of love. Whether it’s your child, boyfriend, girlfriend, spouse or soon-to-be spouse, ADD/ADHD tests every relationship. The best way to bring peace into both your lives is to learn a new mindset to deal with the emotional roller-coaster that ADD/ADHD brings all-day-every-day.

Understanding what a person with ADD/ADHD feels like will help you become more patient, tolerant, compassionate, and loving. Your relationships will become more enjoyable and peaceful. This is what goes on in the mind of a person with ADD/ADHD.

1. They have an active mind

The ADD/ADHD brain doesn’t stop. There’s no on/off switch. There are no brakes that bring it to a halt. It is a burden that one must learn to manage.

2. They listen but don’t absorb what is being said

A person with ADD/ADHD will look at you, hear your words, watch your lips move, but after the first five words their mind is on a journey. They can still hear you speak, but their thoughts are in outer space. They are thinking about how your lips are moving or how your hair is out of place.

3. They have difficulty staying on task

Instead of keeping the focus on what’s in front of them, people with ADD/ADHD are staring at the colors in the painting on the wall. Like walking through a labyrinth, they start moving in one direction, but keep changing directions to find the way out.

4. They become anxious easily

As deep thinkers, they are sensitive to whatever is going on around them. Being in a noisy restaurant can sound like you are standing in the front row at a Metallica concert. A depressing news snippet can set them into end-of-the-world mode.

5. They can’t concentrate when they are emotional

If there is something worrisome going on, or if they are upset, a person with ADD/ADHD cannot think of anything else. This makes concentration on work, conversation, and social situations almost impossible.

6. They concentrate to intensely

When the doors of their mind open, the person with ADD/ADHD dives in like a scuba diver jumping into the deep ocean.

7. They have difficulty stopping a task when they are in the zone

And under the deep ocean is where they stay for hours. Even when their oxygen is running low, if they are enjoying the view, they won’t come up for air until they’re almost out of oxygen.

8. They are unable to regulate their emotions

For a person with ADD/ADHD, their emotions are flying wild, out of proportion and cannot be contained. The tangled wires in their brilliant brains make thought and feelings difficult to process. They need extra time to get their systems up and running properly.

9. They have verbal outbursts

Their intense emotions are hard to regulate. Since they impulsively say whatever they think, they often say things they later regret. It’s almost impossible for them to edit their words before they release them.

10. They have social anxiety

Feeling uncomfortable knowing that they are different, people with ADD/ADHD are often uncomfortable in social situations. They are afraid they will say something foolish or react inappropriately. Holding back feels safer.

11. They are deeply intuitive

For people with ADD/ADHD, the surface is an invisible exterior that they penetrate. They see beyond it. This is the most enjoyable aspect of ADD/ADHD. This inspirational trait is what makes creative geniuses. Inventors, artists, musicians, and writers thrive in this zone.

12. They think out of the box

Another wonderful aspect of ADD/ADHD is that because they think differently, their abstract minds see solutions to problems that the concrete thinker cannot see.

13. They are impatient and fidgety

Annoyed easily, wanting things to happen immediately, and constantly playing with their phones, twirling their hair, or bouncing their leg up and down; a person with ADD/ADHD needs constant motion. It’s a calming Zen activity for them.

14. They are physically sensitive

Pencils feel heavy in their hand. Fibers in fabric that most people wouldn’t feel can be itchy. Beds are bumpy. Food has textures you can’t imagine. Like The Princess and the Pea, they can feel a pea under twenty mattresses.

15. They are disorganized

Piles are their favorite method of organizing. Once a task is complete, papers related to it are placed in a pile, where they stay until the piles grow too high. That’s when the person with ADD/ADHD becomes overwhelmed, frustrated, and cleans up. People with ADD/ADHD have to be careful to not become hoarders. It’s hard for a person with ADD to keep things in order because their brain doesn’t function in an orderly manner.

16. They need space to pace

When talking on the phone or having a conversation, people with ADD/ADHD think better when they are in motion. Movement is calming and brings clarity to their thoughts.

17. They avoid tasks

Making decisions or completing tasks on time is a struggle. Not because they are lazy or irresponsible, but because their minds are full of options and possibilities. Choosing one can be problematic. It’s easy to avoid making decisions because they are over-thinkers. They obsess and dwell in the depths of their own minds.

18. They can’t remember simple tasks

Another paradoxical trait of ADD/ADHD is memory. People with ADD/ADHD can’t remember to pick up their clothes at the cleaners, milk at the grocery store, or appointments. On the other hand; they remember every comment, quote, and phone number they heard during the day. No matter how many post-its or calendar reminders they set; their distracted mind is always elsewhere. Visible items are easier to remember. That’s why they have fifteen windows open on their desktop.

19. They have many tasks going on at the same time

Due to the constant activity in their mind, once a task is finished, they are ready to move on to the next task without closing up the prior task. The more going on at once, the better. Multi-tasking is one of their favorite activites.

20. They are passionate about everything they do

The emotions, thoughts, words, and touch of a person with ADD/ADHD is powerful. Everything is magnified. This is a blessing when channeled properly. When a person with ADD/ADHD does something, they do it with their heart and soul. They give it all they’ve got. They are intense, perceptive, and deep. This quality is what makes the person with ADD so lovable.

Basically, a person with ADD/ADHD has trouble controlling their impulses. They also have many awesome qualities that you will enjoy once you understand how they think and feel. Compassion, empathy and patience will carry you through the most difficult times. It’s important to take extra care of yourself; take alone time regularly, do what you enjoy, find a support group, a therapist or a compassionate wise friend, take frequent vacations, meditate, find hobbies and your own passion. Most of all, learn how to breathe.

Some of the greatest inventors, artists, musicians and writers had ADD/ADHD. They succeeded because they had a loved one just like you supporting them through their daily struggles. Replace your anger with compassion. Realize how they struggle to do what comes easy to you. Think of the ADD brain, as one with electrical wiring in the wrong circuits. Next time you think that they are lazy, irresponsible, disorganized, and avoiding responsibilities; try to remember how hard they have to work extra hard to achieve a simple task.

Yes, ADD/ADHD people are hard to love, but once you understand the burden they are carrying, your heart will open up. Love and compassion will take the place of anger. You will see into their sweet and good soul.

Ramblings in my head

Tonight was an interesting night…on the one hand I was celebrating my two kiddos awesome achievements and the fact my youngest whom is diabetic helped save her Dad when he was super low – she knew what to do and she is only 3 1/2.  I also was proud of my other kiddo for expressing an apology and expressing some really raw emotion that just felt so good to know that 3 1/2 years ago this would not even have been in our sights.

That leads me to my second thing…watching The Voice tonight and Adam Levine was singing with John Fogerty from CCR and it flooded my brain with memories of a childhood I wish I could give my kids.

I don’t think my folks ever really knew what was up with me in terms of things that I know now to be Aspergers, ADHD and so on…they were no tougher on me than any other kid – sometimes tougher because I was always acting out or struggling with something.  Landed myself in trouble lots of times but man being a kid is like that.

I just remember times of listening to CCR pumping out of my Dad’s Pioneer sound system with these big box kind of speakers, Hamburgers on the BBQ and Kool Aid and lots of beer for the adults.  I remember the laughter, the smiles, the warm Summer sun, lawn darts and the badminton games that turned into what one would think was the Gold Medal game in the Summer Olympics.  I remember the lazy hazy days of Summer at the river – swimming, even going for midnight swims when the Moon was big and bright.

I recall our back deck – picnic table up there with that green prickly outdoor carpet underneath, brown paint and our cream colored house with stucco on it.  A long set of stairs to the bottom where there was a cement pad and it had a door to our carport my Dad had enclosed in.  There were two swings under our deck and a set of rings my Dad had made.  Along one side were tree’s and our sheds (2 of them my Dad made) and along the other were our gardens – Tomato’s, Raspberries, Strawberries etc.  At the back corner was an Apple tree and our section of Alley and then there was our play structure my Dad built.  Man we used to have a blast in that yard.

The whole block would get together a lot of times and we would have such good times.  No one cared about anyone being “weird” we just had fun.  I remember the tunes cranking on weekends as my Dad washed and waxed the vehicle, I can still remember how I would roll my eyes and want to listen to things like New Kids On the Block or Bryan Adams – but my Dad kept saying “one day you will appreciate this music”…well I am here to say – he was right.  As I have gotten older I have taken a big appreciation for Music and it’s roll in my life.  From early memories of my two deck and a record player system to those weekend drives listening to Elvis and CCR to more modern music from Maroon 5 and everything in between (Metallica, Guns N’ Roses, Miles Davis and Louis Armstrong, BB King).

I often try to suppress these feelings as it was hard enough as it is to know how much I wish I could go back to that time and tell myself to appreciate it more but sometimes when I hear a song, or smell something like a campfire or watch a show that reminds me so much of my childhood I like to reminisce.

It will never be like that for my kids – and I wish it could be.  For all the struggles we have as a family it would be nice for them to have that slice of happy.   When Cam was little I was able to do more – but as time has gone on the Fibro is taking over my life and it is getting harder and harder to do things.  I wish I could give them even one big trip somewhere – Hawaii or something – where we could be away from chaos and hype (never ever doing Disney we would all be miserable) and just enjoy connecting as a family.  I know I can never afford to do that on disability and it kills me inside.  Anyone that knows us and has followed our story on our fb page http://www.facebook.com/theroadlesstraveled79 knows how much we struggle as a family with all our health issues and how bad we need a break from the chaos.

But we are not that family…and that is ok.  We don’t get things handed to us – the girls have gotten weighted blankets and so on but I mean so many people just get trips and accommodations and so on handed to them and I am ok with it because I remember some of the best times as a kid were family trips taken with the tent or tent trailer where we got away from it all and enjoyed ourselves.  I remember those kids tapes with all those kids songs – Pop Goes the Weasel and so on.  Indeed some of the best memories are centered around music and the outdoors.

My brain can recall so many things from the past – and other times I cannot even remember what I went into a room for (despite repeat trips to said room for said item lol).  I remember running around the block and riding bikes, making forts along the backroad to the river, I remember climbing trees and all the fun stuff I did as a kid.

We stayed out until the street light came on – and it was always understood that each of us had to go home as soon as it was dark.

My childhood wasn’t filled with therapies and appointments – it was filled with music, good friends, family, hockey, riding my bike and swimming in the river.  I want that for my kids…but instead I am always running to appointments and worry about finding therapy and stressing over Kalea’s seizure or 3 people’s blood sugars or if Kiana will be ready for school next year – the list is long…and it’s tiresome.  I wish I could give them a break from it all…

Education Is Key To Acceptace And Awareness

For me it’s hard to understand why people get so upset at others for not understanding their plight. My question to them is what have you done to help them understand? Perhaps that’s an opportunity to teach instead of judge or get upset. If we want people to know more about something we need to be willing to teach them.

Instead of “oh they have Autism that’s why” that doesn’t explain anything to a lot of people that sounds like an excuse. Maybe try explaining quickly that some sounds/textures/smells upset them and it is harder for them to process it unlike a lot of people so they get upset easier but other things that bother someone else likely will have no impact on them.

Because people keep using that line I have personally heard other parents using that and turn around and laugh and say to a friend that their kids aren’t really Autistic. That in turn makes it bad for those that are.

I have to do it a lot with Diabetes…explain why my kid is being loaded up on sugar and carbs for a low…people have read me the riot act more than once. I used to get so mad but now I try to educate them to help them understand better. People are quick to judge what they don’t understand.

We need more positive and less negative. Let’s do more educating and less just dismissing things…people can’t tell the difference unless you educate them. We can’t blame those that don’t know. In order to gain more acceptance we need to open the channels of communication to help people understand better.

Let’s start talking about things in a better light. Even the horrible dark side of things needs to be heard…everyone deserves their story to be told…

Fact versus fiction – the truth about the Spectrum

So many half truths and bold face bs about being on the Spectrum.  Sometimes when I think I have heard it all I am shocked to hear something just ludicrous.  So here are a few things to help shed some …

We are more than just a color or a puzzle piece we are a spectrum

I know that when people see the “light it up blue” and the “Autism puzzle piece” they think that is it – that is what Autism is about.  I am here to tell you that is NOT all that we are about or all that represents us.  We are more then the color blue – which is synonymous with Autism Speaks and frankly I wish they wouldn’t and would disappear, we are more than facts, figures, studies and puzzles pieces.

We are first and foremost PEOPLE – we are from all corners of the globe, from every kind of background – rich or poor it doesn’t matter, we are of all different backgrounds, we are young and old…we are in essence a spectrum.  There are bright times like bright colors, and dark times like darker colors – and everything and color in between.

We have so much more to show the world than a color and puzzle piece and a bunch of facts and figures.  We see the world in so many different ways…from the most intricate things to the way things sound and feel.  We often feel so much more – and are so full of awe and wonder.  We are smart, funny, hold down jobs, have families, go to school etc…we are a lot like everyone else but we come with a lot more complexities.
In the end we are more than what you read in the news.  We are complex and sometimes puzzling, sometimes the world is the same way to us.  But don’t just think you got us figured out from what you read and hear – best way to get to know more is talk to someone on the spectrum – and remember just because you talk to one person don’t just assume that is how we all are – after all it’s a spectrum for a reason.  Just accept us for who we are and what we represent – we are all made of the same things – we are all people…a little kindness and acceptance goes a long ways!

Muddling through the minefield – the spectrum of color

I am still mad at many things and this may upset people but we are all entitled to an opinion – but one other thing that grinds my gears is “light it up Blue” for Autism Awareness…for one I think people are more than aware of Autism – the problem is now getting people to accept Autism and people with Autism.

It’s not all rainbows and sunshine – it is hard sometimes, it can send you to places in your mind you wont like, and it can also enable so many things that are pretty neat to transpire. It’s not any one thing – it is different for everyone.

What I feel is more accurate is lighting it up like a spectrum – because it IS a spectrum diagnosis. We are all at different spots, have our own uniqueness we bring to the spectrum.

Anyhow that’s my beef – why just blue? Not every boy likes blue not everyone in general does – why is there just one color to represent a spectrum of people? Cancer has a different color ribbon for the different Cancers – why can’t we make a cool spectrum ribbon for Autism?  I have been irked by this for 3yrs now when I had my old page (My Journey Through Autism) which is deactivated but I still go look there now and then…it was the beginning of Kiana’s journey and since then so much more has transpired and she has made such progress.

Anyhow PICK A COLOR or colors that makes you happy and go with that it’s your spot in the spectrum light it up how you want – it can be Pink, Green, Orange, Red etc or pick 2 or 10 or whatever you want – it’s a spectrum lets celebrate it like one.

My philosophy is do what is right for you and your family. If you want to represent yourself on the spectrum by wearing your favorite color that is great because that’s being true to yourself and that is the point being different is cool.

Blue is also November for Diabetes awareness. That’s when we do Blue!

The world cannot and will not change for us – but we can change the world

Most annoying thing I read all the time – how all kids with “special needs” deserve preferential treatment in everything.  It’s the one thing that grinds the gears of others…we put our kids in these bubbles so often and we feel we need to keep them there.  “Oh they have Autism so we need this, this and this before we can do this.”  Where as we go to places like the Calgary Stampede with thousands of people and we don’t expect any kind of special treatment – it is a valuable lesson that the world is big and loud but knowing our limits and learning to cope are things we all need to do and learn.

I know I do things differently than most – but I want my kids to be able to navigate the real world when I am done raising them and they are on their own.  I don’t want them to be scared or timid – I want them to go out there and get what they want and achieve it.  Strong confident leaders of tomorrow…that is what we need.

I have been told to wait in line with my kids because a boy with Autism was playing in a ball pit and his Mom didn’t want other kids in there because “he had Autism” – come on man really – way to raise a kid that is going to think the world owes them and everyone should step aside so they can have it.  She requested no one sit by him or anything…his biggest issue – he had no idea how to behave around other kids – so he was only acting out because he didn’t have the skill set to know how else to be.  His Dad was awesome with him – helped him a lot – before long he was able to somewhat interact with the other kids.  His Dad said his Mom thinks that the world has to learn to look out for her son and work around him – but he tries to teach his Son that he needs to work in the world and how to cope better with life.  It’s sad when parents do that to their kids – NT or otherwise…if you raise them to be confident in themselves and their abilities you will be amazed at what can happen.

Sometimes we fail to see how much of a bubble we put our kids in, and is it really for their sake or ours?  Are we being over protective and making the world seem horrible and scary so they will never be able to function in it – they will be to scared?  Perhaps we are so used to seeing/hearing the negative that we forget about all the good in the world…that our kids could help shape the world for a better tomorrow if we only let them.

At some point we have to let them go – we have to let them explore the world and find their spot in it and they have to be ready…the world isn’t going to change for them – they are going to have to learn to adapt like every other person on this planet to what specifically they need from the world.  Road blocks will happen, tough times will ensue, but if you have helped them prepare for these things – they will come out on the other side of the hard times all the better for it.

All kids can learn…we just have to be willing to teach them the important things in life – coping skills is a big one.  Don’t be afraid to let go of them bit by bit (they may not entirely be able to ever be 100% independent but some is better than none)…some of the smartest people on this planet didn’t even get extra support or help in life – and they are doing amazing in their own ways.  We can’t keep expecting the world to just comply and change for us…we have to change the world.  Every one of us out here on this planet is different – the world cannot bend that many ways it just isn’t a fair expectation.  Our kids can handle a lot more than we give them credit for…if we just let them try and support them – great things can be done.  It’s pretty naive to think the world has to change for our kids – our kids should be the ones shaping the world – and the generation to come behind them…showing them that things like Autism are not an excuse to not try – it’s something to be embraced and within the world you shall find your spot and you shall help change the world bit by bit.

We all struggle sometimes

In life there are struggles, no one is going to deny that, some are not so difficult and some – some challenge you to the brink and back.  Most people can muddle through without any big issues and others well when we struggle – we hit a wall and we hit it hard.  It can feel like the world is crumbling down on us and we are trying to hold it all together.

Some people can take a step back and regroup ok, some of us require more time and others well we retreat into ourselves, hide from the world even if it means that some of those around us get upset or hurt at our actions.  It’s a defense mechanism – when things get to overwhelming and crazy we tend to hide from it until we are better able to process the feelings and situation.  We are kind of knee jerk reaction people more often than not, we go all in without a second thought.  I guess you could say when we commit to something we really commit – the good, bad and ugly – we are in it up to our eyes.  Problem being is that once we realize just how far into something we have gotten we look like deer in the headlights.  We quickly withdraw into our own little cocoon’s so to speak where we feel comfortable and secure and slowly we begin to try and make sense of things.

Sometimes it means regressions, sometimes aggressions, sometimes we stop talking much and seem distant and moody.  We struggle to hold onto things while trying to make sense of the rest of it.  Think of a Kangaroo and her Joey in her pouch – when the world is crazy and the little guy is scared he hides out in Mom’s pouch while he calms down and tries to make sense of the big noisy busy world.  He feels safe, secure and like nothing can hurt him.  It may mean he doesn’t learn things as quickly as the others or that he forgets some things his Mom has taught him already but none of that matters right then – what matters is he feels safe and the world isn’t so crazy in there.

Kids and adults a like on the spectrum tend to retreat or withdraw into their safe place when things become to much.  It could be a bunch of little things like being stuck inside due to weather more than you are used to, or dropping something and then spilling something else later and then a bunch of other things that have built up over a bit of time come spilling out in one big messy emotional waterfall and we just shut down.

We will often push people we care about a lot away one minute and the next we are upset that we did and want them back near us for support.  We tend to be yo-yo’s with our emotions like we are all teenage girls feeling devastated by our first heartbreak.  We feel angry, hurt, sad and frustrated – it’s just a big messy pile of jumbled emotions all running through our mind and hearts at once.  Truth be told we don’t really know what we want exactly and as someone on the outside looking in I am sure it feels like it’s just a lot of drama over nothing.

While we can be dramatic – it’s not always a struggle to cause drama we often are just overwhelmed by life, the social interactions, the always trying to keep up “appearances”, always trying to navigate a world where not much is what it seems, where people don’t always say what the mean or mean what they say.  Try processing all that on a minute by minute basis and wondering if you over thought it or under thought it.  Wishing the world would just bloody well make sense for once so you could just catch a break.

Sometimes we just need to retreat and find our calm happy place so we can proceed forward again when we are better able to cope.  Just try to understand and be there when we need someone…we will come around just give us a bit of time to work through whatever it is that is bothering us.

Autistic burnout…it’s no joke

Just like people get burnt out from their jobs we get burnt out to – from life.  Trying to keep up with social standards, keeping up “appearances”, navigating a loud, big and chaotic world and just trying to get ourselves …

Navigating services feels more like a hostage negotiation

As a parent of two girls on the spectrum I often feel that trying to get them any kind of help is much more complicated than it needs to be.  Those with money can afford private services – but even that is hard to navigate.  People apply and don’t show, people show up and then do one or two shifts and never call or show up again.  You end up on so many wait lists and navigating so many things that you feel like there are more directions than there are ways to get there.

I sometimes feel like we need to be hostage negotiators and quite often we are also the hostages trying to negotiate our own release so to speak.  Kids need support – as parents we can help them but we to need to step back and be parents and not their speech therapist, their OT and PT etc.  Our lives are already busy and stressful and at some point in the day we need to step back and decompress just as much as they do.

In this household it’s even more essential that I can get that time in for me.  Between the Aspergers, Anxiety and all the medical issues I have and then Kevin’s PDD-NOS and his other health issues and the kids ASD and ADHD and two of them with Diabetes I never get to just relax.  Now I do prefer to manage their medical issues myself because I know what is needed when it is needed and how things have to be done.

I had to take it upon myself to help Kiana last year when the services we were getting were not helping her make much progress.  From September to June they tried to get her toilet trained with our help, they tried to get her to take her jacket and shoes/boots off and to be more safe outside when crossing the road etc (still working on that from time to time) and one step directions.  But we managed to get her toilet trained day/night and road trips before September, we managed to get her to cooperate for the most part when going out and she knows the routine for the mornings and she has been sleeping through the night and going to bed at decent times – all the things they could not accomplish with us – we did it without them.  But again it has it’s challenges because I am the parent.

I know I managed to get by in life all these years without therapy I managed to do what I could to get by in school but it wasn’t easy and I still struggle.  I want better than that for my kids – they don’t need to struggle so badly when there is help available to them.  I just wish the “system” that is there to help the kids, and us as parents didn’t hold us hostage.  I just need to catch a break somehow because this Aspie and Mom is just burning out real quickly.  It’s not ok to make the kids suffer and us parents more stressed than need be.  There needs to be a better way to do things for everyone involved.