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.

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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…

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.

Isomnia my old friend – the Aspie mind never shuts down…

One thing most Aspies know – sleep does NOT come easy…our brains are constantly plugged into the “grid” so to speak.  Add in ADHD and you can well imagine sleep resembles a road riddled with pot holes.  Always something in our brains that jolt us awake.  Sometimes in a panic over something we forgot or think we did – even something as silly as putting a glass away in the sink after we had a drink before bed, or something as big as locking a door etc.  The things that jolt us out of sleep do so with the force of someone shaking us, making it almost impossible to get back to sleep.

What happens after a bad sleep – well morning comes and we are expected to function.  We already struggle with processing things – add in a horrible nights sleep and all the is likely to happen is a day of behaviors stemming from the in ability to really process much of anything that is asked of us or expected of us.

I often feel like I could and should write a novel in my head while I sleep – maybe then my brain would be tired.  If I am upset at someone I honestly go over in my head in my half asleep half awake state and think of all the things I would love to say to that person and all this pent up anger just follows me into my waking hours.  It makes for a crappy next day but it isn’t like I can just switch it off – as I have mentioned before we NEED to work through the feelings in our own way in our own time frame because we process things different than people without Autism.  We have more obsessive compulsive tendencies than the typical non spectrum people.

We obsesses over what people say, do and even our own behaviors and our favorite things.  We cannot just ever let things go so we can rest.  It’s bloody irritating and one of the traits I wish I didn’t have to deal with.

Anyhow it is time for me to try and get some sleep I shall update this a bit more later when my head is less of a fuzzy mess.

Friendship – what it means to us versus others

When we make a friend – we expect them to be a friend for life.  We don’t really like mind games when it comes to the people we have in our lives.  We get enough of the nonsense from others we don’t especially welcome it into our lives when it comes to meaningful connections.

We want loyalty because we are loyal people, we want someone that accepts us for who we are and how we are – as we would do the same, we want someone that genuinely is interested in learning about Aspergers/Autism so they can better understand what it is that makes us so unique and at the same time complex, we want genuine straight up no nonsense people in our lives.  We don’t expect anything less of our potential friends than anyone else just because we are on the spectrum, if not we kind of have a higher expectation of them because we don’t want to have friends come and go out of our lives constantly we tend to have major anxiety about the very potential of that happening and that’s more than enough.  We tend to also get attached to people/things deeply – sometimes maybe so much so that it completely envelopes us and our lives so they very thought of something going wrong or losing that someone/something really gets us on edge.

Behaviors surface that maybe have been so long gone that it surprises even us and we are the ones doing it.  We may get more moody, edgy, withdrawn, angry and frustrated.  We have a hard time working through the loss of something that we hold so close to us that they become apart of our safe, happy and comfortable world.  If that world gets upturned somehow it’s really hard to get that safe and comfortable feeling back.  We feel scattered and worried that there isn’t a safe place for us to exist in anymore.  Much like a house after a tornado – piece by piece we slowly have to figure out how our lives go back together now that something/someone is missing from them.

It can be really difficult – more so if that person has been apart of our lives for a long period of time.  We opened up to them, told them things that we felt were safe with them and then suddenly they are gone.  Betrayed (even if it wasn’t like that we still feel it), sadness and a deep sense of loss.  How can life be the same without them.

Where as others that are not on the spectrum go through friends like others change their socks.  To them it doesn’t have the same meaning.

I happen to take my friendships seriously – but by doing that I also set myself up for a lot of hurt at times.  I get to emotionally attached and sometimes in the case of it being me friends with a guy – it can be misconstrued into it meaning more.  We are just normally very upfront people so I have had to learn to hold back and test the waters.

I wont lie – I miss the fact I had once upon a time – a great friend in Kyle.  I wish I could get that back but the thing is – he has stopped talking to me twice of his own undoing, and once because he was pissed off at me because he was busy and I got mad about something and then he lost it and we didn’t speak for a year.  But this time I had to push – I kind of knew what would happen – it was like I didn’t want it to but I knew it had to be done.
It’s not the best thing on earth – it escalated quickly but he spends more time thinking about how all this impacted him and he didn’t once ask me what is going on or why I was feeling this way.  A good friend would say something – would say hey what is up what can I do to help you feel better about things – or hey what do I need to do or can I do.  Nope he flipped out at me and so I said that’s it – he’s not really a friend anymore.

Sometimes when we are struggling we just need someone to tell us to stop and breathe and help us get back on track.  He didn’t want to learn about my Aspergers – I will never be able to contact him again I want him to understand in situations where there has been a lot of stress and anxiety I am more prone to lashing out at those closest to me and push them over the edge – but it’s not because I want to it’s because I feel like things are so out of control that I just struggle to get a grip and find my way back on track.

So much I wish I could tell him – but I wont ever get to.  For now I feel the loss…I am working through it but it’s not an easy task right now.  So much happened over the 8yrs – just wish he could have taken a bit of time and looked into things or asked me what that means and how that affects my life.  But that’s the thing I guess a real friend would do that – as soon as I told him that I had never intended there to be more between us things changed… *sigh* friendships and relationships are so complicated…one day I hope he comes around and says something and we can start a new chapter…

One day Kyle Mathers you will get this about me – one day I hope you can accept this about me…until then I will miss our jokes and convo’s…

Music soothes the soul

For me music is an escape.  Growing up the one thing I remember the most is listening to music anyway I could while writing.  Bet ya didn’t know I am a published author and poet did ya 🙂  I once got 3rd place in all of Canada for a poem I wrote I was in grade 12 and the put it over the PA system and it was the first time people actually stopped and were nice to me and said hey that’s awesome congrats.  I was never one to enjoy the spotlight to much but hey it did feel good to get recognition.

As a kid growing up there was this old desk that was my Grandmas (Dad’s side) that we inherited when she passed away.  I remember spending hours listening to my walkman (yes I am old and they were a new thing when I got one) I also remember having to flip the tape over to listen to the other side and rewinding them and fast forwarding through songs I didn’t like as much to get to the ones I did.  Indeed there I would sit writing poems, writing a book about my life and the struggles/triumphs.

Music was an escape for me from the world.  It was a tough situation growing up, I never quite fit in, I didn’t know how to fit in except with the kids that were all misfits to.  I was bullied that is no lie – I was a kid that was beat up, broken down and stepped on.  But no matter what I could always turn to music and forget my troubles for awhile.

Our life with Diabetes

You know looking back I think we have managed ok with things here. My Mom took the training with me when it came to Cam and his Diabetes – my Dad even was on the up and up when it came to what he had to do…my son’s Daycare provider was to, his school (teacher/aide and the kids in his class)…I never really stressed about him in the hands of anyone else or even myself. We had some lows, we have had highs where he was in coma (his own undoing not mine) but one thing I learned is that ANYONE that is going to have your kid that has medical issues they NEED to do the training. You can go over it with them, highs, lows, what to do in each case, have a glucagon kit with you at all times and snacks/juice etc.

Diabetes DOES NOT have to rule your life or theirs. You cannot stress over every little thing because it doesn’t do them any good or you. You can’t live in a bubble – we have done without any real support other than the kids care team at Childrens. I have no family near me or anything. BUT don’t let it rule your life or theirs, in time resentment grows, anger, defiance and worst of all Diabetes burnout for everyone.

Let them eat, let them play, let them be kids – many pro athletes are Diabetic, people have climbed Everest with Diabetes, done triathlons – it doesn’t have to be yours or their whole life. It makes these things more tricky but living in fear of them having extra snacks or not playing enough to burn things off – a rough night – it happens. It is always going to happen from time to time. I have set an alarm so I check Kalea at 3am and when I get up at 7am…we were using Lantus which IMO is better there are NO peaks and valleys it runs consistent in the background and is MUCH MORE predictable so for us it was a wise choice. Now with her pump it is easier to turn it down or up depending on what she needs but as you saw from my photo last night – it CAN fail (it is being replaced) so again have a plan in place.

Your kiddo can still go to birthday’s, have cake, have ice cream, still do sleep overs at family members houses – the world DOES NOT have to stop because your kiddo has Diabetes. Don’t even think that it does…write out instructions and put them in a place like the fridge at the said relatives house, then go over things with them – give them a book on carbs (most packages have the carbs on there as it is) it might be a lot of work but even with a pump or an alert dog it can’t count carbs for you – it can’t give insulin for you – it can tell you if there is a low or a high but it can’t treat it. They have to be prepared.

Never ever let anything like Diabetes, Autism or anything like that stop you from letting your kiddo live a full and happy life. It’s a new life – it’s a different one, more challenge but don’t let it grip you in fear and live in a bubble…take that road trip to see family, go to that movie with the kiddo(s), go enjoy that ice cream cone on a hot Summer day, take that walk around the park, let them go to that sleep over with family…just have everything you need and let go of the fear and embrace things…say I got this I can do this. The more confidence you display the more they pick up on it and the less scared and worried they will be about it and it will make thing much better as time goes on – they will want to do a good job managing it and working with everyone to make it happen. If you live in constant fear you are only ensuring they are going to live in constant fear about it. Don’t panic when something is off – just take a deep breath and say ok I got this.

Remember to – Pasta’s and breads break down slower than refined sugars so you may need to give a correction bolus for Pizza’s and Pasta’s – but don’t fret it is better to split dose those things and give half at the beginning and half about an hour later. But remember if anyone needs to talk – I am here – I have actually had to save Kevin’s life twice – he was .08 barely on the meter – seizing and I was worried – BUT I rolled him to his side made sure his airway was clear and I was on the phone with 911 the entire time and I got through it…Cam has had some super highs and he was in coma for 24hrs (Mom here got sick so he stopped doing as he was told with his blood sugars) and it was scary as hell – I cried and I got over it and I was there with him and we spent a few days in the PICU but we have NOT been back since December 2012 over a year now! Even through all Kalea’s lows with being sick only ONE run to the ER – and we were doing everything right so we got to go…it’s hard – no one said it would be easy and if they did they are full of something that isn’t nice. But nothing rewarding ever comes easy! Just remember that – the greatest rewards and victories in life don’t come easy!pizap.com10.77162631694227461383768225155

About being an Aspie

People often wonder what it is like to be an Aspie, what “changes” when you get your diagnosis, do things feel different, is life somehow just easier because you know.  Seriously for me I felt sad – not at the diagnosis but because I wish I had known all those years back in school when I was struggling so bad.  I wish the teachers had known, I wish there had been more support, I wish people had known more about Autism and Aspergers.  I am sad because I spent my school years struggling to fit in, struggling to finish work, to understand what was expected of me academically and socially.  I still struggle with interpersonal relationships and still struggle with understanding multiple step things (anything more than 8 steps and I can get a bit turned around – ADHD doesn’t help that one bit).

The diagnosis didn’t really change anything other than it being one more piece to a puzzle I managed to get to finally fit.  It was something that I had not ever thought of for myself – I have two little girls with Autism and yet I just assumed because their Dad had PDD-NOS they got the gene from his side (him, his brother, dad etc) but sometimes when you are to close to a situation you fail to notice the things staring at you in the face.  Once I realized it I talked to the Dr. and he went over things with me and voila here we are now.  I found out about the ADHD 3yrs ago but man when my meds run out – look out and I do mean look out it gets ugly.

I have my share of issues – but since I grew up not knowing what was wrong or how I could work with it – I learned ways to adapt.  Sometimes it’s frustrating, knowing this but knowing there just isn’t anything that can make it right or better now, that you just have to roll with things.  Most people don’t even know this fact about me – that I am an Aspie.  I don’t share it with a lot of people, not because I am ashamed of it but because so many people don’t understand and have no clue the struggle that goes on sometimes.

1) We are deep philosophical thinkers and writers; gifted in the sense of our level of thinking. Perhaps poets, professors, authors, or avid readers of nonfictional genre. I don’t believe you can have Aspergers without being highly-intelligent by mainstream standards. Perhaps that is part of the issue at hand, the extreme intelligence leading to an over-active mind and high anxiety. We see things at multiple levels, including our own place in the world and our own thinking processes. We analyze our existence, the meaning of life, the meaning of everything continually. We are serious and matter-of-fact. Nothing is taken for granted, simplified, or easy. Everything is complex.

2) We are innocent, naive, and honest. Do we lie? Yes. Do we like to lie? No. Things that are hard for us to understand: manipulation, disloyalty, vindictive behavior, and retaliation. Are we easily fooled and conned, particularly before we grow wiser to the ways of the world? Absolutely, yes. Confusion, feeling misplaced, isolated, overwhelmed, and simply plopped down on the wrong universe, are all parts of the Aspie experience. Can we learn to adapt? Yes. Is it always hard to fit in at some level? Yes. Can we out grow our character traits? No.

3) We are escape artists. We know how to escape. It’s the way we survive this place. We escape through our fixations, obsessions, over-interest in a subject, our imaginings, and even made up reality. We escape and make sense of our world through mental processing, in spoken or written form. We escape in the rhythm of words. We escape in our philosophizing. As children, we had pretend friends or animals, maybe witches or spirit friends, even extraterrestrial buddies. We escaped in our play, imitating what we’d seen on television or in walking life, taking on the role of a teacher, actress in a play, movie star. If we had friends, we were either their instructor or boss, telling them what to do, where to stand, and how to talk, or we were the “baby,” blindly following our friends wherever they went. We saw friends as “pawn” like; similar to a chess game, we moved them into the best position for us. We escaped our own identity by taking on one friend’s identity. We dressed like her, spoke like her, adapted our own self to her (or his) likes and dislikes. We became masters at imitation, without recognizing what we were doing. We escaped through music. Through the repeated lyrics or rhythm of a song–through everything that song stirred in us. We escaped into fantasies, what could be, projections, dreams, and fairy-tale-endings. We obsessed over collecting objects, maybe stickers, mystical unicorns, or books. We may have escaped through a relationship with a lover. We delve into an alternate state of mind, so we could breathe, maybe momentarily taking on another dialect, personality, or view of the world. Numbers brought ease. Counting, categorizing, organizing, rearranging. At parties, if we went, we might have escaped into a closet, the outskirts, outdoors, or at the side of our best friend. We may have escaped through substance abuse, including food, or through hiding in our homes. What did it mean to relax? To rest? To play without structure or goal? Nothing was for fun, everything had to have purpose. When we resurfaced, we became confused. What had we missed? What had we left behind? What would we cling to next?

4) We have comorbid attributes of other syndromes/disorders/conditions. We often have OCD tendencies (Obsessive Compulsive Disorder), sensory issues (with sight, sound, texture, smells, taste), generalized anxiety and/or a sense we are always unsafe or in pending danger, particularly in crowded public places. We may have been labeled with seemingly polar extremes: depressed/over-joyed, lazy/over-active, inconsiderate/over-sensitive, lacking awareness/attention to detail, low-focus/high-focus. We may have poor muscle tone, be double-jointed, and lack in our motor-skills. We may hold our pencil “incorrectly.” We may have eating disorders, food obsessions, and struggles with diet. We may have irritable bowel, Fibromyalgia, chronic fatigue, and other immune-challenges. We may have sought out answers to why we seemed to see the world differently than others we knew, only to be told we were attention seekers, paranoid, hypochondriacs, or too focused on diagnoses and labels. Our person hood was challenged on the sole basis that we “knew” we were different but couldn’t prove it to the world and/or our person hood was oppressed as we attempted to be and act like someone we were not. We still question our place in the world, who we are, who we are expected to be, searching for the “rights” and “wrongs;” and then, as we grow and realize there are no true answers, that everything is theory-based and limited, we wonder where to search.

5) We learn that to fit in we have to “fake” it. Through trial and error we lost friends. We over-shared, spilling out intimate details to strangers; we raised our hand too much in class, or didn’t raise our hand at all; we had little impulse control with our speaking, monopolizing conversations and bringing the subject back to ourselves. We aren’t narcissistic and controlling–we know we are not, but we come across that way. We bring the subject back to ourselves because that is how we make sense of our world, that is how we believe we connect. We use our grasp of the world as our foundation, our way of making sense of another. We share our feelings and understandings in order to reach out. We don’t mean to sound ego-centered or over zealous. It’s all we know. We can’t change how we see the world. But we do change what we say. We hold a lot inside. A lot of what we see going on about us, a lot of what our bodies feel, what our minds conjecture. We hold so much inside, as we attempt to communicate correctly. We push back the conversational difficulties we experience, e.g., the concepts of acceptable and accurate eye contact, tone of voice, proximity of body, stance, posture–push it all back, and try to focus on what someone is saying with all the do’s and dont’s hammering in our mind. We come out of a conversation exhausted, questioning if we “acted” the socially acceptable way, wondering if we have offended, contradicted, hurt, or embarrassed others or ourselves. We learn that people aren’t as open or trusting as we are. That others hold back and filter their thoughts. We learn that our brains are different. We learn to survive means we must pretend.

6) We seek refuge at home or at a safe place. The days we know we don’t have to be anywhere, talk to anyone, answer any calls, or leave the house, are the days we take a deep breath and relax. If one person will be visiting, we perceive the visit as a threat; knowing logically the threat isn’t real, doesn’t relieve a drop of the anxiety. We have feelings of dread about even one event on the calendar. Even something as simple as a self-imposed obligation, such as leaving the house to walk the dog, can cause extreme anxiety. It’s more than going out into society; it’s all the steps that are involved in leaving–all the rules, routines, and norms. Choices can be overwhelming: what to wear, to shower or not, what to eat, what time to be back, how to organize time, how to act outside the house…all these thoughts can pop up. Sensory processing can go into overload; the shirt might be scratchy, the bra pokey, the shoes too tight. Even the steps to getting ready can seem boggled with choices–should I brush my teeth or shower first, should I finish that email, should I call her back now or when I return, should I go at all? Maybe staying home feels better, but by adulthood we know it is socially “healthier” to get out of the house, to interact, to take in fresh air, to exercise, to share. But going out doesn’t feel healthy to us, because it doesn’t feel safe. For those of us that have tried CBT (Cognitive Behavior Therapy), we try to tell ourselves all the “right” words, to convince ourselves our thought patterns are simply wired incorrectly, to reassure our self we are safe…the problem then becomes this other layer of rules we should apply, that of the cognitive-behavior set of rules. So even the supposed therapeutic self-talk becomes yet another set of hoops to jump through before stepping foot out of the house. To curl up on the couch with a clean pet, a cotton blanket, a warm cup of tea, and a movie or good book may become our refuge. At least for the moment, we can stop the thoughts associated with having to make decisions and having to face the world. A simple task has simple rules.

7) We are sensitive. We are sensitive when we sleep, maybe needing a certain mattress, pillow, and earplugs, and particularly comfortable clothing. Some need long-sleeves, some short. Temperature needs to be just so. No air blowing from the heater vent, no traffic noise, no noise period. We are sensitive even in our dream state, perhaps having intense and colorful dreams, anxiety-ridden dreams, or maybe precognitive dreams. Our sensitivity might expand to being highly-intuitive of others’ feelings, which is a paradox, considering the limitations of our social communication skills. We seek out information in written or verbally spoken form, sometimes over-thinking something someone said and reliving the ways we ought to have responded. We take criticism to heart, not necessarily longing for perfection, but for the opportunity to be understood and accepted. It seems we have inferiority complexes, but with careful analysis, we don’t feel inferior, but rather unseen, unheard, and misunderstood. Definitely misunderstood. At one point or another, we question if in fact we are genetic hybrids, mutations, aliens, or displaced spirits–as we simply feel like we’ve landed on the wrong planet. We are highly susceptible to outsiders’ view points and opinions. If someone tells us this or that, we may adapt our view of life to this or that, continually in search of the “right” and “correct” way. We may jump from one religious realm to another, in search of the “right” path or may run away from aspects of religion because of all the questions that arise in theorizing. As we grow older, we understand more of how our minds work, which makes living sometimes even more difficult; because now we can step outside ourselves and see what we are doing, know how we our feeling, yet still recognize our limitations. We work hard and produce a lot in a small amount of time. When others question our works, we may become hurt, as our work we perceive as an extension of ourselves. Isn’t everything an extension of ourselves–at least our perception and illusion of reality? Sometimes we stop sharing our work in hopes of avoiding opinions, criticism, and judgment. We dislike words and events that hurt others and hurt animals. We may have collected insects, saved a fallen bird, or rescued pets. We have a huge compassion for suffering, as we have experienced deep levels of suffering. We are very sensitive to substances, such as foods, caffeine, alcohol, medications, environmental toxins, and perfumes; a little amount of one substance can have extreme effects on our emotional and/or physical state.

We are ourselves and we aren’t ourselves. Between imitating others and copying the ways of the world, and trying to be honest, and having no choice but to be “real,” we find ourselves trapped between pretending to be normal and showing all our cards. It’s a difficult state. Sometimes we don’t realize when we are imitating someone else or taking on their interests, or when we are suppressing our true wishes in order to avoid ridicule. We have an odd sense of self. We know we are an individual with unique traits and attributes, with uniques feelings, desires, passions, goals, and interests, but at the same time we recognize we so desperately want to fit in that we might have adapted or conformed many aspects about ourselves. Some of us might reject societal norms and expectations all together, embracing their oddities and individuality, only to find themselves extremely isolated. There is an in between place where an aspie girl can be herself and fit in, but finding that place and staying in that place takes a lot of work and processing. Some of us have a hard time recognizing facial features and memorize people by their clothes, tone of voice and hairstyle. Some of us have a hard time understanding what we physically look like. We might switch our preference in hairstyles, clothes, interests, and hobbies frequently, as we attempt to manage to keep up with our changing sense of self and our place. We can gain the ability to love ourselves, accept ourselves, and be happy with our lives, but this usually takes much inner-work and self-analysis. Part of self-acceptance comes with the recognition that everyone is unique, everyone has challenges, and everyone is struggling to find this invented norm. When we recognize there are no rules, and no guide map to life, we may be able to breathe easier, and finally explore what makes us happy.

9) Feelings and other people’s actions are confusing. Others’ feelings and our own feelings are confusing to the extent there are no set rules to feelings. We think logically, and even though we are (despite what others think) sensitive, compassionate, intuitive, and understanding, many emotions remain illogical and unpredictable. We may expect that by acting a certain way we can achieve a certain result, but in dealing with emotions, we find the intended results don’t manifest. We speak frankly and literally. In our youth, jokes go over our heads; we are the last to laugh, if we laugh at all, and sometimes ourselves the subject of the joke. We are confused when others make fun of us, ostracize us, decide they don’t want to be our friend, shun us, belittle us, trick us, and especially betray us. We may have trouble identifying feelings unless they are extremes. We might have trouble with the emotion of hate and dislike. We may hold grudges and feel pain from a situation years later, but at the same time find it easier to forgive than hold a grudge. We might feel sorry for someone who has persecuted or hurt us. Personal feelings of anger, outrage, deep love, fear, giddiness, and anticipation seem to be easier to identify than emotions of joy, satisfaction, calmness, and serenity. Sometimes situations, conversations, or events are perceived as black or white, one way or another, and the middle spectrum is overlooked or misunderstood. A small fight might signal the end of a relationship and collapse of one’s world, where a small compliment might boost us into a state of bliss.

10) We have difficulty with executive functioning. The way we process the world is different. Tasks that others take for granted, can cause us extreme hardship. Learning to drive a car, to tuck in the sheets of a bed, to even round the corner of a hallway, can be troublesome. Our spacial awareness and depth-awareness seems off. Some will never drive on a freeway, never parallel park, and/or never drive. Others will panic following directions while driving. New places offer their own set of challenges. Elevators, turning on and off faucets, unlocking doors, finding our car in a parking lot, (even our keys in our purse), and managing computers, electronic devices, or anything that requires a reasonable amount of steps, dexterity, or know-how can rouse in us a sense of panic. While we might be grand organizers, as organizing brings us a sense of comfort, the thought of repairing, fixing, or locating something causes distress. Doing the bills, cleaning the house, sorting through school papers, scheduling appointments, keeping track of times on the calendar, and preparing for a party can cause anxiety. Tasks may be avoided. Cleaning may seem insurmountable. Where to begin? How long should I do something? Is this the right way? Are all questions that might come to mind. Sometimes we step outside of ourselves and imagine a stranger entering our home, and question what they would do if they were in our shoes. We reach out to others’ rules of what is right, even in isolation, even to do the simplest of things. Sometimes we reorganize in an attempt to make things right or to make things easier. Only life doesn’t seem to get easier. Some of us are affected in the way we calculate numbers or in reading. We may have dyslexia or other learning disabilities. We may solve problems and sort out situations much differently than most others. We like to categorize in our mind and find patterns, and when ideas don’t fit, we don’t know where to put them. Putting on shoes, zipping or buttoning clothes, carrying or packing groceries, all of these actions can pose trouble. We might leave the house with mismatched socks, our shirt buttoned incorrectly, and our sweater inside out. We find the simple act of going grocery shopping hard: getting dressed, making a list, leaving the house, driving to the store, and choosing objects on the shelves is overwhelming