Day #52 – Halloween Weight

I have always considered Halloween to be the beginning of the holiday season.  It seems from this point until January 2 life gains a little more weight, literally and metaphorically.  Weight on my hips (I have an unhealthy relationship with mini Twix bars) and the weight of stress, worry, anxiety, and confusion for families who live life on the spectrum.

Holidays are a funny time for parents and children.  This whole Santa Claus thing cracks me up a bit.  364 days a year we tell our children to stay away from strangers…then Christmas arrives.  The day when we ask our child(ren) to sit on the lap of a stranger…and not just any stranger.  A bearded, red-suited, chunky man…seriously, how weird is that?

Halloween presents some challenges for all children and I suspect when many people read this they will nod their heads in agreement.  It may be an equalizing holiday.  Equalizing in the sense that even children not on the spectrum because more ‘like’ children on the spectrum…too much sugar, too many parties, too many noises, too many funny ‘feels.’  Halloween is not fun for everyone.  Halloween can be tough stuff…

When you have a child on the spectrum it’s nearly impossible to just go and buy a costume.  For Tucker, this was certainly the case in his younger years.  We had to choose costumes that…

weren’t too tight
weren’t too loose
weren’t too itchy
weren’t too smelly
weren’t too bright
weren’t too heavy
weren’t too light
weren’t too anything.  So what do you do?

Get creative…well, really – get normal.

Shorts, jersey = football player
Pants, khaki shirt, whip = Indiana Jones

My personal favorite was Kindergarten.  The weight of anxiety came over me.  How do I send this child to school with some sort of real costume, but help him deal with it all?  Not only his own sensory stuff…everything that was ‘out of order’ in his life.

The costumes.
The loud parties.
The ‘parade’ with all the people, the smells, the colors, the noise.
The food.
The choices.
The ‘appropriateness’ of trick or treating.
Strangers.
Doors.
New places, new faces.
The unknown….so, so, so much unknown.

Minimize.  Minimize his own sensory stuff so that he  can deal with his surroundings.  So, he went as Shaggy – green shirt, khaki pants, and a painted mystery machine hanging over his shoulder.

August_October 07 082

If that isn’t the cutest boy ever!!  Whew…what a doll he was (I meant is). Yes, he’s missing his clothes…well….because this is how he resides in our house most of the time.  Clothing is not his friend (see Day #237 – Nudist Colony).

So, on this holiday – be patient and be kind and be thoughtful and spread love to all children. Happy Halloween!

Special-Needs-Halloween

Day #51 – Goosfraba

Goosfraba may have originally been a word that the Inuit people used to calm their children, it became ‘immortalized’ when Jack Nicholson used it in Anger Management.  Today’s post?  It’s all about Goosfraba.

A piece of the vestibular system that causes us problems is that many children on the spectrum (including Tucker) face poor muscle  tone  and/or coordination.  I already commented on how we worked with a physical therapist to help him manage this difficulty (see Day #27 – The Balancing Act:  Celebrating Physical Therapists).  Still, the chaos that often ensues from the lack of coordination is frustrating – not only for him, but for me.

I am constantly reminding myself that if I am frustrated or having difficulty I must be extra patient.  If I am frustrated – imagine how he feels.  I have to put on an extra special calm face and use an extra special calm voice.

My mom raised me on the philosophy that if there was something in your house that you did not want to break…well, you should not have it in your home (if you had children).  Thank goodness she did.  Little did she know that her grandson would prove this theory – and not because he was ‘naughty,’ simply because he is Tucker.  Look at the list below.

  • Grasping items tightly
  • Bumps into things
  • Knocks Over Things
  • Is Clumsy

Between my own research and growing up the way I did I understood not to be angry when something would break.  I still don’t.  Why?  Because accidents happen.  On a chilly morning early last spring he came inside and was very upset.

“Mom, I broke the birdbath outside.”

“Okay, how did that happen?”

“Well, there was ice on the top, but the water was bubbly underneath and I wanted to see what would happen if I broke the ice.”

“Yes.  I can see how that would spark your imagination”

“It did – it just looked really cool.  So I picked up a rock.  I guess I threw it too hard into the water because when I did it just broke in half.”

“Bet you won’t do that again.”

“No way.  I’m sorry”

The tears began. Yes – that is truly how the conversation went.  When I went outside I realized he had used a big, big rock to break the ice.  He was 11 – he really should know better.

Goosfraba.

Deep breath – he can’t recognize the heaviness of an object.

Goosfraba.

Deep breath – he is unable to ‘think through’ the situation.

Goosfraba.

Deep breath – he can’t recognize how tightly he grasps and throws.

Goosfraba.

Deep breath – he is unsure of his movement.

Goosfraba.

Deep breath – I break stuff too, he didn’t do it on purpose.

“Tucker, did you pick up that rock and think ‘I am going to smash this birdbath to ruin mom’s day?’”

“Of course not.”

“Right.  You didn’t do it on purpose.  It’s called an accident.  The most important thing is that you told me that you made that mistake right away and that you won’t do that again.  Okay?”

“Okay.”

End of conversation.  If I would have yelled, screamed, and /or berated him I would break him down.  I wouldn’t solve anything.  One of the things you learn very early on with a child on the spectrum is that sharp reactions will NEVER help.

NEVER.

EVER.

NEVER EVER.

So…be calm – and trust me, dealing with vestibular types of issues will test your patience.

Again and again and again.

goosfraba

 

Checklist (from   http://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html)):

__ has a limp, “floppy” body

__ frequently slumps, lies down, and/or leans head on hand or arm while working at his/her desk

__ difficulty simultaneously lifting head, arms, and legs off the floor while lying on stomach (“superman” position)

__ often sits in a “W sit” position on the floor to stabilize body

__ fatigues easily!

_x_ compensates for “looseness” by grasping objects tightly

_x_ difficulty turning doorknobs, handles, opening and closing items

_x_ difficulty catching him/her self if falling

_x_ difficulty getting dressed and doing fasteners, zippers, and buttons

__ may have never crawled as a baby

_x_ has poor body awareness; bumps into things, knocks things over, trips, and/or appears clumsy

___ poor gross motor skills; jumping, catching a ball, jumping jacks, climbing a ladder etc.

_x_ poor fine motor skills; difficulty using “tools”, such as pencils, silverware, combs, scissors etc.

_x_ may appear ambidextrous, frequently switching hands for coloring, cutting, writing etc.; does not have an established hand preference/dominance by 4 or 5 years old

_x_ has difficulty licking an ice cream cone

_x_ seems to be unsure about how to move body during movement, for example, stepping over something

_x_ difficulty learning exercise or dance steps

Day #50 – Overcoming Fear to Trust

While I already wrote about Tucker’s struggle with his vestibular system (Day #18 – The Turtle and The Hare, Part I),  there will be much more writing in the coming months.  Peruse the list below and it is obvious that we struggle with being hyper-vestibular.  Tucker still moves a lot (constantly, really) – but he certainly does not take chances.  At this point in his life, we are challenged by nearly ever factor listed.

When a child is experiencing ‘over’ response to their vestibular system, they simply prefer sedentary activities because movement can (and does) overwhelm them.  The child is experiencing an overload of the vestibular system, therefore they avoid movement and unstable surfaces.  Does your child struggle with car sickness?  If so, they most likely have been inundated by their vestibular system.

Too much movement to concentrate.

An example…

Escalators.  

images-2

Tucker was three and we were in Younkers.  It was his first time on an escalator – and at this point, I didn’t know anything was unique about my sweet boy.

We walk up to the escalator.  When we arrive at the base of it, I simply tell him to step with me.

He won’t.

Again, I tell him to just step on.

He won’t…not like he’s just a stubborn toddler.

He WILL NOT do it.

He is screaming.

The line of people are piling behind us.  I’m sweating.  I’m stressed.

Internal thoughts:

Why he just won’t step onto the *#&^ escalator!  I mean seriously…what is the big deal?!?!  Get on the *$^# escalator!  

The people.  The people are….

waiting

watching

looking

sighing

I’m sweating. I’m stressed.

Finally, I pick him up.  He screams ALL THE WAY up the escalator.  We get to the top, I sit away from the elevator and hold him tightly until he calms.  We shop.  Then head back to the escalator.

He screams ALL THE WAY down the escalator.

At the time I just thought it was this weird ‘thing’ that he had…now I get it.  Look at the list below…

  • his feet are off the ground
  • there is a chance of falling
  • he has no control over the movement
  • he is fearful of going up/down stairs
  • the movement is rapid
  • he has to balance on the step

Jeepers – no wonder this was awful.  Yep, it all makes sense. He still pauses and hesitates at escalators, he still waits for to quietly say ‘step.’  He still takes a couple extra seconds.  He still prefers to stand on the same ‘step’ with me.  He still stares at me instead of looking up or down.

The challenge of helping Tucker rev up his vestibular system is that first we have to conquer fear and develop trust.  Once you have Tucker’s trust, there is no turning back.  At the same time, the minute you break that trust?  You have lost him, for good.

How did we get there?  Love, patience, and practice…

Checklist (from:  http://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html):

_x_avoids/dislikes playground equipment; i.e., swings, ladders, slides, or merry-go-rounds

_x_ prefers sedentary tasks, moves slowly and cautiously, avoids taking risks, and may appear “wimpy”

_x_ avoids/dislikes elevators and escalators; may prefer sitting while they are on them or, actually get motion sickness from them

_x_ may physically cling to an adult they trust

_x_ may appear terrified of falling even when there is no real risk of it

_x_ afraid of heights, even the height of a curb or step

_x_ fearful of feet leaving the ground

_x_ fearful of going up or down stairs or walking on uneven surfaces

_x_ afraid of being tipped upside down, sideways or backwards; will strongly resist getting hair washed over the sink

__ startles if someone else moves them; i.e., pushing his/her chair closer to the table

_x_ as an infant, may never have liked baby swings or jumpers

_x_ may be fearful of, and have difficulty riding a bike, jumping, hopping, or balancing on one foot (especially if eyes are closed)

__ may have disliked being placed on stomach as an infant

_x_ loses balance easily and may appear clumsy

_x_ fearful of activities which require good balance

_x_ avoids rapid or rotating movements

 

Day #49 – Give Them Recess!!!

On day seven I wrote about the vestibular sense (Day 7 – Seven Senses?!?!)  What is life like for children (and adults) who are Hypo-Vestibular?  Well –  it’s like an eternal life as a toddler.  Always moving, always, always moving.  The more intense the movement, the better.  Sitting, twirling, spinning – these children have trouble sitting still and paying attention.  It seems obvious that children who seek vestibular fulfillment are often misdiagnosed (or correctly diagnosed) with ADD/ADHD. This was almost Tucker…but in my gut, I knew that wasn’t right.

People often ask me if I think Autism is truly ‘on the rise,’ if the ‘parameters of diagnosis’ have relaxed, or if we are more aware and able to identify/diagnose.  That is a hefty topic for another post – what I do know is that many of the ways schools have changed have not done our children good.

Recess and PE have always existed for a reason.  Honestly, I wasn’t a fan of recess and PE gave me serious anxiety (I was slow, uncoordinated, and generally terrified of anything that required me to have any athletic prowess…oh, wait – did I saw ‘was’?  I meant am.)  Some schools are taking out PE and Recess time in exchange for more time to meet core standards. The very nature of ‘school’ is to sit still, to stand quietly in line, to pay attention – often, this is just impossible.  In fact, our children are being asked to sit more than ever.

Some believe there is a correlation to the absence of PE/Recess and the increase of ADD/ADHD.  See the graph below?  Not good news for Iowa – this is State-based Prevalence Data of ADHD Diagnosis (2011-2012): Children CURRENTLY diagnosed with ADHD (Centers for Disease Control). For more information read:  http://www.washingtonpost.com/blogs/answer-sheet/wp/2014/07/08/why-so-many-kids-cant-sit-still-in-school-today/

map-current-adhd-2011-550px

Children need movement.  Children who are hypo-vestibular?  They NEED movement.  A horrible irony takes place with many of these children. They wiggle, they move, they can’t sit still.  They are constantly being told to stop wiggling, to not move, and to sit still.  Then, they have to focus SO hard on being ‘good’ that there isn’t enough energy left to get their work done.

While Tucker didn’t crave intense movement, he craved constant movement (Day #40 – Rock-A-Bye).  He still has troubles being ‘still.’  He’s constantly throwing a football, dancing around, shaking his legs…

A well-meaning teacher was trying to meet standards and she held Tucker in from recess to finish his work.  He hadn’t finished his work because he was concentrating on sitting still.  The cycle continued for the rest of the day – bad day for Tucker, bad day for Teach.  The one thing NOT to take away from these children?  Movement.  Please, find another way to wield power…taking away movement will NOT help.

Give them movement, see what could happen.  Just consider this image.

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How could you do this at home?

  • Get upside down.
  • Swing.
  • Roll.
  • Spin.
  • Do cartwheels.
  • Have a dance party – hey, even I like that!

How could you do this at school?  Well, I ended up buying Tucker one of these…

38410_image

(Bought from:  http://www.physioroom.com/product/Gymnic_Disc_39_o_39_Sit_Wobble_Cushion_Junior_/2029/38410.html?currency_view=USD&gclid=CjwKEAjw2reiBRCaobK3udOj-Q4SJACXWyYm_41raQO4BF1nuKdl4WJjlyHUr9FuOSnYDkKXtVXmDBoCeRzw_wcB)

A Wobble Cushion.

I simply asked his teacher to give it a try-the cushion worked.  I worked with the school staff and asked that if he was having troubles focusing, controlling himself, and interfering with classmates to let him walk down the hall.  He was (and is) a rule follower, so all we had to do was give him parameters.

It worked. His need for movement was allowed, his learning was enhanced.

Win for him. Win for his teacher.  Win for me.

Checklist (from:  http://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html):

_x_ in constant motion, can’t seem to sit still

_x_ craves fast, spinning, and/or intense movement experiences

__ loves being tossed in the air

__ could spin for hours and never appear to be dizzy

__ loves the fast, intense, and/or scary rides at amusement parks

_x_ always jumping on furniture, trampolines, spinning in a swivel chair, or getting into upside down positions

__ loves to swing as high as possible and for long periods of time

__ is a “thrill-seeker”; dangerous at times

__ always running, jumping, hopping etc. instead of walking

_x_ rocks body, shakes leg, or head while sitting

__ likes sudden or quick movements, such as, going over a big bump in the car or on a bike

Day #48 – Over and Under

It’s time to get a bit scientific.  I’m not a scientist -so this has been a VERY steep learning curve.  My goal is to explain  all of this sensory business.   It’s time to write more about diagnosis and provide some symptom specific lists.  Remember when I talked with the OT for nearly two hours on the phone (see Day 4 – Round Up to the Test)?  Well, I’m pretty sure she had a list from http://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html.  That is why the conversation lasted so long.

I’m using that same list in the coming days.  First, I’ll explain the concept, tell a short story about how Tucker fits each troubled area, and then check off his ‘symptoms’ – or at least the symptoms that he began with.

Sensory stuff is cool and crazy.  The deal is this, we ALL have sensory issues.  Tucker often argues that everyone is on the spectrum -but that he just needs a little extra help and love.  There is truth in what he says.  Do you hate how yogurt feels in your mouth?  Mashed potatoes?  Do you hate the feel of jeans and strongly dislike elastic at the bottom of your sweatpants?  Does going into Best Buy nearly put you into a full-blown anxiety attack because of the lights, noise, people, and smells? Do you hate tags on your shirts?

Yes?  Well then – you are experiencing sensory difficulties.  Most of us can continue to live and process information, folks on the spectrum cannot.  They need extra help and love.

To help explain this phenomenon, first I have to explain terminology.  Lots of researchers, advocates, moms, dads, teachers, and therapists use different terms to refer to the same idea.  Generally we refer to sense difficulty as being:

Hypo

A hyposensitive child may constantly fidget and touch things in an effort to send more information to a sensory starved brain.  On the other hand, s/he might also be lethargic and slow because the brain has filtered out too much information and doesn’t react to the environment “at the correct speed.” (http://www.behavioradvisor.com/SID.html)

Hyper

A hypersensitive child might have an emotional meltdown when entering the cafeteria due to the sensory overload of sight, sound, and smell (and fear of being touched/bumped).  This wild response (as with withdrawal in some situations) is an attempt to shut out the high load of incoming stimuli. (http://www.behavioradvisor.com/SID.html)

During the next couple of months I will explain each of the following senses in more ‘hyper/hypo’ detail:

  • Vestibular:  equilibrium, gravitational changes, movement experiences, and position in space
  • Proprioception:  body position, weight, pressure, stretch, movement, and changes in position in space
  • Auditory:  hearing difficulty without designation of hearing loss
  • Touch: activation of senses by nerve endings includes skin, tongue, throat, mucosa
  • Oral/Taste:  the ability to detect taste of substances
  • Olfactory:  the ability to smell
  • Visual:  the ability to focus and detect images
  • Interoceptive:  our body’s ability to (or not) regulate internal functions

I will also provide information about:

  • Auditory-Language Dysfunction
  • Social, Emotional, Play and Self Regulation Dysfunction

Before delving further, we also need to understand the ‘Five Caveats’ to Sensory Dysfunction.  In Carol Kranowitz’s groundbreaking book, The Out of Sync Child, she put forth:

  1. The child with sensory dysfunction does not necessarily exhibit every characteristic. Thus, the child with vestibular dysfunction may have poor balance but good muscle tone.
  2. Sometimes the child will show characteristics of a dysfunction one day but not the next. Inconsistency is a hallmark of every neurological dysfunction.
  3. The child may exhibit characteristics of a particular dysfunction yet not have that dysfunction. For example, the child who typically withdraws from being touched may seem to be hypersensitive to tactile stimulation but may, instead, have an emotional problem.
  4. The child may be both hypersensitive and hyposensitive. For instance, the child may be extremely sensitive to light touch, jerking away from a soft pat on the shoulder, while being rather indifferent to the deep pain of an inoculation.
  5. Everyone has some sensory integration problems now and then, because no one is well-regulated all the time. All kinds of stimuli can temporarily disrupt normal functioning of the brain, either by overloading it with, or by depriving it of, sensory stimulation. (http://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html.)

It’s time to really get started.  Tomorrow?  An introduction to the vestibular sense.

Day #47 – Nervous Nellie

Last Sunday our church had a hayrack ride and bonfire gathering.  Classic ‘rural’ community fun.  It was wonderful.  Estelle was SO excited – she couldn’t stop talking about it all day.  When we left our friends’ farm that night she proclaimed it as one of the ‘best nights ever!’

Tucker, well…Tucker.

Children who are on the spectrum are often overly cautious (once they get out of that ‘run in front of cars’ phase).  I have to believe that this is part of their careful calculation and observation of the world. Now, I get there are many children who are nervous or frightened about new situations…but this is an entirely different deal.

Here were some questions throughout the day (I’m not joking, not one bit):

1.  What if I fall off the hayrack?  You won’t fall off the hayrack, it is enclosed.

2.  What if it is too bouncy?  It will be bouncy.  You will sit on a hay bail and that will cushion any impact of bouncing that will occur.

3.  What if the hay is itchy? It will be.  I’ll remember to take a blanket for you to sit on.

4.  What is someone is allergic to the hay?  Most likely, they would know if they are allergic and will either take an allergy pill or would simply not go on the hayrack ride.

5.  What is someone doesn’t know?  I’ll take my cell phone so we can call for help for that person.

6.  What if exhaust from the truck get blown at us?  The wagon will probably be pulled by a tractor.  Tractors don’t have exhaust in the back (then, showed a picture of a tractor and where the exhaust is located).

7.  What time would we need to leave here?  4:30.

8.  What will there be to drink?  I’m sure hot chocolate, but we can take our own drinks along.

9.  What will there be to eat?  Will I miss supper?  No, there will be hot dogs and chili and s’mores.

10.  Will the hot dogs be boiled or grilled?  I bet grilled over a fire.  We’ll grill our own and avoid the grill marks as much as possible.

11.  Will there be enough food for everyone?  Yes, Micki is a great planner – I’m sure she has it all figured out.

12.  Micki who?  Micki from church, the hayrack ride is at her farm.

Oh.

It’s 4:15, I give him the 15 minute warning.  He responds with, “Oh mom…I just don’t know yet…(in a voice that is full of worry).”

It’s 4:25, I give him the 5 minute warning.  He responds with, “Mom…I’m so afraid I’ll fall out and be hurt.”

I say my ‘old line’ – ‘Tucker,  I will be there with you.  I will not leave your side.’

It’s 4:30, I tell him it’s time to go if he’s going.  He responds with, “Okay…I do love s’mores.”

We get to the hayrack ride.  He walks slowly.  Micki walks out of the house and says, “Hi Tucker, I’m so glad you came tonight.” (Bless her heart and soul – she doesn’t have ANY idea of how much that put him at ease.)  He looks at me and smiles and says, “Oh, Micki from church!”  (I’m not sure who he was expecting…but it’s one of those moments you wonder what in the world your child was/is thinking.)

He relaxes….until he gets in the wagon.  Then this happens….

photo (24)

 

 

My man-sized child grabs onto my hand (that’s my hand in the middle).  He clasps it with both of his.  He looks in my eyes with tears in his.  I say, “I have you.  I will not let go until you do.”

He replies, “I won’t let go.”

I say, “Okay.”

And that’s how we rode…for half of the hayride.  Hand in hand with my 7th grade boy. Hand in hand because I knew that it would always be him and me, advocating together.  I knew it on the day he was tested (see Day 5- The Two Way Window) and I knew it more than ever in this moment.

BTW – he didn’t fall out, there were enough hot dogs, and the s’mores were awesome.

He’s still not sure about next year…but I have 358 more days to talk him into it…

Day #46 – Resources & Gifts

Even if your child is not on the spectrum, check out this website.

http://www.nationalautismresources.com/

The site is a Godsend for families affected by Autism.  I used to go to this website and create a wishlist of things that I knew would help Tucker.  If you know a family, ask them.

Ask what they need.  
Ask them what they struggle with.

Go to this website and see if there is anything that appears that it could ‘help.’  Surprise them with a gift, odds are – they’ve been thinking about buying it for quite some time. 

Examples?

Weighted blankets – they help to calm the overactive nerves of children.  It’s quite simple, actually.  Think about winter – when you climb into bed and have layers of blankets.  Doesn’t that feel good?  Why?  Because of the weight…the weight on top of you makes you feel calm and safe. 

Visual timers and schedules – while I was lucky enough to have a background in education and have some time as a teacher – many parents do not.  These are resources that can make their lives incredibly easier.  Actually, those timers?  Those are helpful to anyone with toddlers – it’s just most children grow out of the difficulty of transition times – children with Autism do not.

Day #45 – Love, Simply

Friday, oh Friday how I love thee.  So, it seems most fitting to begin the weekend writing about love.

I’ve always been a lover of love.  Having Tucker made me even MORE of a lover of love.

Some simple rules.

1.  Love that child.  Love them like CRAZY.  I often tell people who ask me for advice, “Love them right through it.”  Trust me, I know it’s hard.

In the moment that you have repeated yourself 15 times.

In the moment that they continue to argue about something you know is right.

In the moment that others are staring.

In all moments…the most frustrating moments.  Love them through it.  Love will take you (and the child) to the other side of the ‘moment’ – frustration won’t.  Anger breeds anger.  Frustration breeds frustration.  Irritation breeds irritation.  Just love them right through it.

2. Love yourself.  Seriously – this business of parenting is exhausting.  Add some ‘special’ stuff to that business…and it’s soul draining.  One of the first things that my husband said to me was…’You never stop parenting.  Those of us with NT children get a break – you never get a break.  Ever.   Even if Tucker is sleeping or occupied you’re thinking about the next challenge.  Dealing with the next thing that could set him oof.  Making special appointments.  Taking stock in his progress.  Figuring out how to do more for him.”

He’s right – but I didn’t recognize it – because Tucker was my first child.

Take advantage of resources.  If you have a friend or grandparent that can care for your child for one night (or weekend) a month,take it!  YOU NEED A BREAK.

Be sure to choose someone who knows the bedtime rules, that knows about scheduling, that knows about food/drink issues, someone who ‘gets’ your child. YOU NEED A BREAK.

I get it, it’s difficult to take a break, because a change in schedule may ultimately take a week to recover from.  YOU NEED A BREAK.

So, find someone you trust – create a relationship and then take a break. YOU NEED A BREAK.

You have to take care of yourself – if you begin to lose yourself you aren’t doing anyone any good. Not your child, your partner, you other children, your friends, your co-workers.  Just love yourself enough to know…YOU NEED A BREAK.

3.  Love the journey.  It is special and unique and it is your own.  No one else has one like yours.  Your story is your own to tell – tell it in whatever form you can.  Love the difficult moments, love the moments that you celebrate .  Love it all…it’s yours and yours alone.

Above all?  Love is the thing that will keep you moving forward.  The type of love you have for your child on the spectrum is unique.  We take HUGE pleasure in small (but huge) battles.

A positive note from school – CELEBRATE!!!

A compliment from a stranger – CELEBRATE!!!

A great ‘play’ in a game – CELEBRATE!!!

Let’s be honest here, your child not having a meltdown because something is different?  CELEBRATE!!!!!

This thing has no doubt pulled you in all directions.  It has probably almost broken your spirit – it’s been ugly, there have been tears, you have had stress unlike any other, you have screamed, you have cried alone, you have snapped.

But, you know what?

You are still here…and so is this child.  Your record for getting through those bad days is currently at 100%.

Just keep on loving them (and yourself) through it…

Day #44 – Word Girl

I decided to write this blog for several reasons.  My husband convinced me that I had the right ‘voice’ to be a teacher and an advocate for Tucker and so many others like Tucker. So, far I’m averaging around 150 views a day – I’m so grateful.

Two weeks ago, I had a stark reminder of why I chose to begin writing and not wait around for a publisher to think my thoughts and ideas were worthy. It was also at this moment that I thought about those 150 readers – and what if those 150 readers shared with another 150 and another 150 and so on.  But, this explosion in readership wouldn’t be (it never has been) about me.  It would be about this comment…

A friend said to me, “So, what is Tucker’s prognosis?  Like will he be in a home someday or continue to live with you?”

Internal Words:

WHAT!?!?!

Are you freakin kidding me?  Did you really just ask that?  You know Tucker.  You know his capabilities.

What in the world?

Seriously.

AND…even if would live in the type of ‘home’ you are referring to, so be it.  If that it what is healthy and best for him – then that is the way it would be.

AND…even if he continued to live with us, so be it.  If that is what is healthy and best for him – then that is the way it would be.

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External Words:

His prognosis is excellent.  He will live like any other person his age.  He will go to college and have a career (If the Vikings don’t call – I suspect he’ll be an Engineer or a Judge 😉 ). He will have a home.  He may or may not get married and have children.  He will be able to do all the things that your son can do.

THIS.

This is the very reason I had to start writing.  Education.  Part of what makes ‘our’ form of autism so difficult is that it is a strange dichotomy.  On one side, he does have special privileges at school to help him learn and function.  On the other side, he receives grades that are quite comparable to his peers.  He is different, yet the same.

One of the first people who I was introduced to after Tucker’s diagnosis was Temple Grandin.  Do you know her?  I often feel like she is the best friend that I never met.

Temple is an amazing woman (http://www.templegrandin.com).  She was diagnosed with Autism at age two.  What is her story?  It seems her mother thought she could accomplish anything, sound familiar?  She became an advocate for the livestock industry studying the behavior of cattle – how they reacted to ranchers and their surroundings.  She used all of that information and being able to consider the ‘sensory’ environment to revolutionize corrals.

Take 20 minutes in the next couple of weeks and learn how having a brain affected by autism affects your view of the world.  She’s speaking for so many…Tucker included.

Will Tucker, one day earn his Ph.D.?

Will he become a nationally renowned speaker, researcher, and advocate in something he’s passionate about?

Maybe not…but maybe he will.

#43 -Tape Recorder

Another reason that I am A OKAY with ‘peer troubles’ (See Day #42 – Trouble with Peers) is that Tucker’s outright exposure to others can be damaging – even though social contact is where he needs the most practice.  Again, the Autism irony thing.  I say ‘peer troubles’ lightly – because they aren’t really ‘troubles.’

Tucker gets along really well with adults and is often awkward around his peers because of his manner of speaking. People often say to me, “He sounds so grown-up.” Yes, he sure does – but not for the reasons one may think.

He was very slow to acquire enough language to have conversations. Trust me, it wasn’t for lack of conversation in his home-his mother is a speech teacher for goodness sake! He was read to every morning and every night. He was encouraged to share his opinions, to talk. He just didn’t feel the need. He knew the words – but part of his difficulty was (and continues to be) putting words together in the right order to create new, original thoughts.  He knows what he wants to say – but it’s all jumbled.  It’s like trying to create a sentence out of words in a word cloud.  ARRRRRGGGHHH!!!!!

autismoutreachwordcloud

 

So, what do some children do? Well, they memorize. I used to refer to Tucker as my tape recorder (albeit not in front of him). He talks like I do. He found a way to memorize the words, phrases, and verbal intonations I use in any given situation.  I also worked with him, tirelessly and patiently.  When he responded with something inappropriate I would simply respond, “Tucker, this would work better in that situation.”  No matter how embarrassing it was [what he said].  I never attacked or shamed or embaraased him, he simply needed him to learn.

Then, in ‘like’ situations – he replays what he knows is appropriate to say.  Some children on the spectrum are almost hyper fluent – they speak in a peculiar manner using words that are too advanced or sentences that seem like they came out of a medical research journal.

For example, last fall he had some boys over for an XBox tournament. As we were taking them home he said, “So, guys. How did you like tonight? Is there anything I could do to improve your experience? Is there is anything you would change?”

I looked in the rearview mirror…the other boys just looked at him, mouths open, heads cocked to one side, wide eyes.  I helped him reframe the questions to a 6th grade level. “Did you have fun?” “The next time you come over do want something different to eat?” “Are there other friends we could invite?”

This is the very reason that we’re okay he’s not invited to many homes, situations, or experiences.  It is easy for us to control the words/phrases that he memorizes from our home.  It’s not easy for us to control what other 7th grade boys and their families may say or do.

So, when you are around Tucker (or children like him) PLEASE be careful with your tone and language choices.  Not only does he sometimes struggle to understand what you are saying (Day 17 – Say What You Mean, Mean What You Say) he will ‘replay’ whatever you say at another time in a like situation.