Awkward Encounters

I saw this and thought 'Oh how I relate!'  I think that many people do this on and off the spectrum, but I know that I personally take it to another level.

Being able to converse in a social situation is not natural to me.  For some people, it can be, but it depends on the person and the situation.  I have 'faces' I put on for specific places and people.  There are different rules for how one behaves at work, or at a casual lunch with friends, for instance.  These rules are not instinctual for me, so I have to cognitively list them, which in some ways very much feels as if I am putting on an act.  It's not natural, or intuitive. 

I explain it sort of like this.  In my head is a big, big rolodex full of pictures that represent different social situations.  When I go to an IEP meeting, I find the card that has the appropriate way to behave and look in that situation, for example.  I overlay this with other clues that I can roll around and access by proxy of each other to come up with the proper things to say, wear and so on.  I mentally have to prep myself.  I pick what to wear, what might need to be said, and get a feeling of what to expect.  If the situation is new, I might try to do some research beforehand to acclimate myself.  If I don't have that sort of time I might try to quickly access the closest 'card' that I have currently on file in my head (experience) and apply the rules from that one. 

So, for most people I'm sure that I seem like I am 'normal'. My hair is nice, my make up is on, and my clothes are arranged well in moments where appearance counts.  I think that often times I may even seem to be more on top of things and together than others.  It wasn't by accident, or due to me wanting to upstage.  I'm most certainly not more together than the average mom, because I have some super power.  It's because having all my ducks in a row, lots of prep and lots of order is the only thing that allows me to do what I do.  This is my way of coping.

So, imagine what happens when I am minding my own business in a public place and I see someone I know.  The routine is different and the context is off. This person is not supposed to be here in this environment! My brain scrambles to make sense, and in this moment I flee.  It's not that I don't want to have smalltalk, because I dread the drudgery.  The person I see may well be someone I like and want to talk to, but they don't belong here and I can't find my script.  I know that if they try to talk to me there is a 50% chance I'll go mute and be unable to talk.  The other 50% is okay, if my brain can align itself quickly enough to access the proper 'card' for this person.  Words in social situations aren't free flowing.  They are (unless I'm totally comfortable with the other person) hard to come by and rely heavily on pre-written scripts.  So, I will, if I think I might get away with it hide, or at the least pretend I don't see them so at least they have to be the ones to take the lead in the conversation.  I'll dive around corners and grocery store aisles in my attempts to not have to converse. I know that I have been caught trying to avoid people in these sorts of situations and it hurt the other person's feelings.  I never meant to and I hope that if this ever happens to you that maybe you'll give the other person the benefit of the doubt that maybe they are struggling with a social issue and not take it personally.

What The R Word Means To Me & My Family

Today is the official pledge day for Spread The Word To End The Word so I thought I'd like to do an entry about the R word and what it means to me, and my family.

As most of my readers know, I have two sons on the spectrum.  Only one has an additional diagnosis of a cognitive delay. When Beans got this diagnosis at age two I assumed he may eventually grow out of it, or things might change.  The developmental pediatrician didn't really explain to me what this meant, other then he was delayed in all areas.  I didn't think too much about it at the time.  I accepted him as he was, autism and all.  Not a big deal.

Then one day about a year or so ago, I happened to be waiting with my kids in our regular pediatricians office.  It was a lengthy kind wait. My eyes drifted over to Beans chart on the counter.  It was considerably bigger than the other two kid's charts.  I couldn't help but wonder what was inside.  I assumed nothing of all that much interest.  I decided to peek.  I came across the developmental pediatrician's report. I quickly began scanning it with my eyes.  I quickly felt my stomach drop as I saw the words 'mentally retarded',  'challenged', 'significant' and 'functioning' peppered though out the report. I could hear the doctor's voice coming down the hall, so I only got a small sampling of words before quickly shutting the folder before she entered the room.  This was not the report the dev, pediatrician had sent me.  It was not it at ALL.  I knew my son was delayed.  I knew that he seemed different then all of the other kids with autism I've met, but I had not thought that he was tagged as with an intellectual disability.

That night, I told my husband about it.  He was nonplussed.  He said he understood that the the day we had left the office 5 years ago.  I guess the doctor had probably said it, gently, between the lines. Cushioning the truth the way many NTs like to have it.  I was not able to infer this truth. I was not in denial, but I was not fully aware of our circumstances, either.  It didn't really change much for me after the initial realization.  Beans is still Beans.

I know that when most people use the R word they are usually doing it in a way that is making fun of themselves.  I used to be one of those people. (Not proud of that, but there ya go.) I know that most decent people would never call a disabled person like Beans a derogatory name.  I know most people aren't that awful.  I also know that the language we use reflects on the people that hold certain labels and statuses in our society.  Think about it this way. Think about every time you might be tempted to use the R word.  Maybe you made a mistake and said "I'm so R worded."  Or maybe something looked funny, or didn't work, or was wrong, or was defective.  The R word = those things, and my son has an intellectual disability that technically means the R word.  What if your name was replaced with the R word.  What if when people saw something nonsensical they said "That's so ______"  (fill in the blank with your name.)  What would the public's perception of people named _____ be?  Would who you are be affected by this?  Would you like to be equated with all these 'bad' things?  What if people said to you, "but I didn't say YOU were dumb.  I said the X was dumb.  Why do you take things so personally?"  You would probably know that they DID say you were dm,b, bad, wrong whatever indirectly by using your name, who you are to describe something unwanted, or bad.  This is what this sort of language feels like to those that are intellectually disabled, and the people that love them.  This is why it's harmful.

I want to leave you with a short video that I took of my son last night.  I was playing one of his favorite games with him, peek a boo.  He just loves this game and could play forever.  His smile and laugh is incredible.  Think of this face every time you think of using the R word.  Think of who you are hurting with your language. He is none of those negative things. He is beautiful.



*Sorry for the poor quality of the video.  It's a new camera and I was just trying it out. 

Sensory Solutions Part 2- Visual

In this entry I will cover visual processing issues that those with Sensory Processing Disorder might face and some solutions to those problems. 

 Most autistics are hypersensitive to visual input.  Too much color and clutter can result in overstimulation.  When this happens to me personally, I feel dizzy and disoriented.  I can't focus on anything.  My brain can't process individual objects in an overstimulated state.  If you were to ask me to find a specific object it would be difficult.

To help prevent visual overstimulation:
*Use subtle shades of color to paint, particularly in rooms like bedrooms, and classrooms.  I particularly like bold colors, but I like it to be 'clean' colors with no interference of clutter on the walls or lots of other things to compete in the environment.  Of course, this is just my own opinion.

*Limit things hung on the walls.  Don't hang up wall to wall posters in a classroom for kids with ASD.  Limit pictures, and shelves.

* Avoid excess clutter.  This includes nick-nacs and other decorations.  I like things to be well organized, labeled and hidden if possible.  Having shelves with doors is a good example of hiding clutter. 

* Incandescent lights are a must for some on the spectrum.  The flicker of florescent can be too much.

*Strong sunglasses is also a must for some on the spectrum.  My older son's eye doctor said that his eyes are physically unable to handle sunlight the same as others. He requires glasses, so the doctor recommended prescription sunglasses for times when he is outdoors for any length in time.   This is also something my husband requires.  Unless it is dark outside he absolutely has to have sunglasses on. Even inside of stores, or cloudy days.

*Hats can also be of some help to minimize light and overstimulation in environments where there is a lot of movement.

*Minimize movement.  I personally get very overstimulated if there is a lot of movement going on around me. My kids running back and forth in a room, or lots of people around me at a busy store is just too much.  Realize that this takes it's toll on Spectrumites and take into consideration that environments with lots of moving people will need to be limited in duration if you don't want a sensory induced meldtdown.

* Provide sectioned areas for school children if they need it.  As a child I love, love, loved the little partitions we made during state assessments for our desks.  They were just pieces of white card stock folded into sections so that it stood up on your desk like a cubicle.  They were designed to keep your eyes to yourself during testing times, but they were delightful in keeping my area simple and pleasant visually.

*If sensory overstimulation is suspected, have a quiet dark area for the person to relax.  For an adult this may be their room, or any area free of others.  For a child, a little pop tent with blankets is a good example of a good destressing area. Something to block out light and a busy environment is necessary for visual overstimulation.  My son often prefers just hiding under a blanket with his DS. 

Strategies to help Understimulation:

Sometimes, a person on the spectrum may be hypo-sensitive to sights.  I have often noticed that the more profoundly autistic people are the ones that have hypo-sensitive sensory systems, but this can vary from individual to individual, as well as be different on different days for the same person!

When someone needs more visual stimuli they may seek out lots of colorful toys, and wall hangings, ect...  They may wave their hands and fingers in front of their face. Finger flicking in front of the eyes is very common.  My son will seek out quick moving cartoons, like Spongebob.

Ways to help might include:

* Toys that light up.

  *Colorful environments, walls, blankets, posters, lots of colorful toys
and picture books

* Bright quick paced computer games and cartoons

*puzzles, Where's Waldo type of books, and memory games



It is also important to make sure to get regular check ups at the eye doctor.  Many kids with developmental disabilities are far sighted, meaning they can't see up close as well.  This will also contribute to the visual stims that many will do.  The eye doctor can check this even in nonverbal children using lenses and light from a small hand-held instrument, our optometrists can see how a child’s eyes respond to particular targets and test for nearsightedness, farsightedness and astigmatism.  You can sometimes see that a baby, or child is farsighted due to one eye that 'pulls in' when they try to focus.  This is myopia, or lazy eye.  My youngest son is myopic.  This is also something to rule out when a child will not sit still or appear to attend when doing work that requires close up focus, like learning letters, numbers, and later reading and math.

Path To Grieving

I've thought about this post for a long time,  I've started it, and deleted it several times, and may several more until I feel comfortable enough to post it, if I ever do.  There's nothing comfortable about death, and if you're on the spectrum, I find this is especially true.  The words that I write here I could never ever speak out loud.  The discomfort involved would be too great.  They'd never leave my mouth.  The air would travel up my chest, to my throat and get stuck in one big bubble of sadness and awkwardness.  I would feel equally uncomfortable if anyone tried to talk about their feelings with me.  It would be intolerable.  I always slink through February 17th in hopes that my husband (who has a long history of not remembering important dates)  does not remember what today is.  If he does, he will get all emotional, want to share that with me, and I can't.  I couldn't then and I can't now.

Today, 7 years ago, I gave birth to a daughter named Brenna Hope that was stillborn.  She had a rare condition called Anencephaly .  It is basically a birth defect where the spinal cord never fully forms, so the baby never grows the entire brain, or cap of the skull.  The baby is alive and kicking while still inside the womb, but cannot survive once born.

I remember the doctor's visit all too well. It was after the sonogram was taken, twice.  No one would say much during the sono and the doctor called me after the second one for an appt that was out of the usual schedule.  It was an odd situation, as my doctor had a stutter, and it was a pretty severe one, at that.  The more nervous he was, the worse his stutter... So picture me in his office as he has to tell me and my husband that our baby (at 7 months gestation) will not live.  I never thought the sentence would be able to leave his lips, as I sat there in agony trying to guess his next word he was trying so desperately to get out.  I just wanted to know what was going on with my baby.  The room starting spinning, and I began to get dizzy.  I couldn't hear the words after I heard 'no brain' .  My boys were beginning to act up, (as ASD kids do) so I took them out to the car while my husband talked to the doctor.  I didn't want to be in that room anymore.  I didn't want to talk to anyone. 

 My husband and I made the decision to carry on with the prenancy until I went into labor, which happened at 34 wks .   We were prepared for her arrival. I bought a few outfits.  One for the hospital, one for pictures (which were graciously taken for free by the hospital's photography) and one for burial.  Bonnets were a must to cover the disfigurement.  My mother in law made her a quilt to be buried in, as well as an identical one for us to keep. We had a coffin made for her.

We had a viewing and a small graveside service.  I appreciated everyone's thoughts and efforts in attending. The make up artist who donated his time to make my angel look presentable, the mortician who lowered his costs to accommodate our budget.  It was all very thoughtful.

I did not cry.  Not until I got home. I did not want my husband's hugs.  I wanted him to stop crying. I wanted him to leave me alone.  I wanted the pain to go away.  If you've never lost a child, then you cannot fathom this kind of pain.  It is unlike any ever felt.  I had no way to process it.  It was stuck inside me, swelling without any idea of how to release it.  I thought my husband was being too dramatic, as his grieving began the moment the doctor uttered the words 'is not compatible with life'.  I did not. Logically, I processed it.  Intellectually, I knew.  I never was in denial.  I joined the only on-line group I could find for this kind of birth defect.  I could not connect in any way emotionally with these mothers.  So, I carried this pain with me.  There was no way of getting rid of it, of releasing it, or of easing it.  I had no intention of going to candle light vigils for lost children.  It was not going to bring mine back.  It was just a display of emotion to me, and that I found un-useful.  I wished that I knew of my AS, back then. I would have understood why I grieve differently. I'd have been more compassionate and supportive of my husband's need for grieving and affection during this time.  Maybe, I would have been more prepared for the delayed wall of utter sadness, despair, and agony that awaited me not long after the burial. 

I wonder what kind of cake I'd be baking today, if things turned out differently?  Would I be wrapping barbies, or legos? Would she have a party with friends over?  Maybe, she'd be like the majority of us in or family and be on the spectrum.  Or, the harder questions.. Would I have had enough time for her?  Beans was a baby when she was born, so there was no way for me to know that he was profoundly autistic. 

I've heard people call autism a 'tragedy' right there in front of their living, breathing wonderful little children.  I tell you I know for certain that autism is no tragedy.  I know tragedy.  I have a keepsake box clothes, plaster footprints, and a picture on my nightstand of what I would call a tragedy.

The old saying, 'time heals' is truthful.  Every year it does indeed get easier. I am able to share this with a wider audience than those closest to me for the first time.  Even though it is in writing.  It's not been easy, but I have learned and gained perspective in life.  Children are gifts, even in the difficult moments I remember to be thankful, more patient, more compassionate, more playful. I know how precious they really are and how each moment is to be cherished. 

Letting Go Of Pain From The Past With Compassion

The other day  I ran across this this article about dysfunctional families.  It took me aback a little bit.  I held the words in my mind processing it for days now.  This is how my mind works.  I mull things over adding bits and pieces of information and understanding, until I build a better understanding of a new concept.  This process can take days, or it can take years. 

As a child, I was always acutely aware of my mother's sensitive feelings. I wanted to make her happy, and proud of me.  When I had class parties I'd always pick out the candies and treats she'd like best, before eating any myself.  I'd burst in the door with excitement presenting the treats I'd gathered for her.  I'd do the same at gift shops at class field trips. I'd use most of the money I'd been given to buy her something before I would myself.  Sometimes, I'd not buy myself anything at all.  While the other kids were busy thinking about what they wanted to buy, or what would make them happy I was busy trying to make my mother happy.  This is as one might have surmised by now, an endless task, as well as not my responsibility.  It's unfortunately one in which I've carried with me as one of those painful lessons you learn as a child.  I never learned to look after myself first.  Of course, there are positives to this, in that I am a generous person and will share anything I have with anyone in need.  I can and do get taken advantage of, as well.  I attracted people that were abusive to me and I accepted their abuse as just the way it is in grade school, all along until adulthood.

My father is likely on the spectrum himself, and was emotionally unavailable, as well as physically due to working long hours.  When he was around, he expected order, and quiet.  He never gave compliments and always let you know in a harshly critical manner when you were wrong.  I stayed away from him as much as possible, because we didn't get along.  I got no support from him and my ability to out-argue him relentlessly got me labeled a troublemaker.


As you might imagine, my father was completely unable to handle my mother's wildly swinging emotions and need for empathy.  He is simply unable to do so and she is unable to regulate herself.  I firmly believe she has Borderline Personality Disorder.  The two together is a recipe for disaster.  I became the person that things hinged on.  If things were good, I was good.  If things were bad, I was bad.  I was/am the scapegoat in the family.  My mother's mental health declined year after year.  By the time I was in my adolescence she was pretty neurotic.  With me about to leave the home, and my brother most of the way grown she wasn't as needed anymore.  She saw things that weren't there and accused me of doing things I never did.  If I got a new friend, a boyfriend, or even an interest that took my time away from her... she'd come up with something that I had done or they'd done to keep me away from them.  Even going so far as to admitting me mental hospitals, so she could get pity from family.  She believed that I summoned evil spirits to terrorize her and so many other things that were equally as crazy.  Child Protective Services tried to remove me from the home at age 17.  My mother said I was responsible for that, too and refused to speak to me for quite awhile after that. 

I was tragically scarred by these experiences.  As an adult now, I am putting things into perspective, allowing healing and new growth.  One of those processes is understanding what on earth made my mother behave the way she did/does.  As a mother myself, I can't fathom treating my kids that way.  I have asked this question many times over, and the answer I believe is in this quote:

“When another person makes you suffer, it is because he suffers deeply within himself, and his suffering is spilling over.” Thich Nhat Hanh"

 

I know my mother suffers.  She suffers greatly.  She can't help, but to let it pour over onto others, infecting them with her pain.  The last two years we are not on speaking terms at all.  Her pain of feeling abandoned by me was more than she could handle.  A conversation couldn't go by where out of the blue I'd be told how all of my struggles with my ASD kids are my own fault for moving away from her.  She won't visit me, because I made my own bed, so now I can lie in it, as far as she's concerned.  Or if I'd be asking for advice about my daughter she'd drop in that as long as she doesn't grow up to be ungrateful and mean spirited as me, then I'll have escaped the real pain of motherhood that she has endured.  I finally could take it no more.  I told her to get help to manage her pain, or leave me alone.  She chose leaving me alone.  That was painful.  It was awful for me, and I am still gathering up coping skills to help me deal with it.  I don't think anyone ever really gets over something like that.  So, if anything I have derived some comfort in knowing that it's not me, or about me.  She just can't contain her massive amount of pain and agony. This may be an important part for me to move forward, and letting myself feel worthy of love, life and joy.