Easter Story by Rosebud the Marvelous

New strides towards higher learning are taking place with my dear Rosebud!  She is now being introduced to advanced first grade English.  Yes, I know she is 9 1/2 and her grade card says she is in 3rd grade but thankfully her teachers work within HER abilities – not a pre-defined path of education.

After reading the Bible’s account of the Easter story from Matthew 28, Mark 16, Luke 24 and John 20, she was given this writing exercise.   The instructions were to “Draw and Write”, and she was given a word box with these words to help her create a story:  Easter, rose, angels, Peter, Jesus, stone, and Mary.

The First Easter

the rose angels

the Easter hit the stone

I Mary Jeus

I give Peter a rose

 

So it’s not Maya Angelou… that’s ok by me!  We’re talking about a child whose only word was “MA!” for years, who had ten barely understandable words when she was 3, who had no clue what you were talking about when you said “what is this?” when pointing to an apple, and said her first sentence just over 4 years ago (“I go outside play green grass?”).

Here she is reading me this same story (apparently she can’t read her own writing!)

On the other side of this paper was the sentence writing activity: “Write a sentence using spelling words”.

The word box contained the words “snail, stop, street” and she wrote:  “I see a snail”

For the words “Snake, slip, snow” she wrote:  “I paly the snow” (I play in the snow).

“stove, smoke, smell” she wrote:  “I smell smoke”

“sky, speak, skip” she wrote:  “I speak mom” (I speak to mom).

“Easter, after” she wrote:  “I live Easter” (I like Easter).

Then we move on to spelling.  I was always the kid in class that got 100% on every spelling test without studying.  It was as easy as breathing to spell all those words in the many books I’d read.   Even now, if you ask me to spell some weird long word I’ve never heard before there is a 90% chance I’d spell it correctly.  But I digress – we’re talking about Rosebud here, the one who says “buh fly” instead of butterfly.  Who can not say school – it’s always sool.  Skunk is snuk.  Proverbs is problems. Elligator?  Yes, that would be the elevator.  So I can only imagine how difficult it would be for her to memorize how to spell butterfly.  Or skunk.  Or elevator.  This was her latest spelling test:

boy

toy

joy

boil

jon (join)

noise

binday (birthday)

buttfly (butterfly)

airport

mialman (mailman)

football

rionbow (rainbow)

thank

four

And a word of praise here for her school:  even though technically she got a 64% on this test, they still work one on one with her to help encourage her and help her do better next time.  The use of the English language is not her strongest area, so they will keep working with her at her level.

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Encouraging Words

Saturday was rough.  Yelling, crying, fighting, messes… and then the children woke up ;o)

Proverbs 15:1  A gentle answer turns anger away.  But mean words stir up anger. (NIrV)

Trying to get 7 children to do their chores on Saturday AFTER watching 3 hours of cartoons – I could have been wiser.  But chores needed to be done and I am the mom (manager, boss, slave-driver depending on which child you ask!).

Rosebud and her little sister were to unload the dishwasher.  They fought as they were attempting to NOT unload it.  “I do the top and you do the bottom OK?” “NO!  Get away from me!” “MOM!!! She’s not helping” “I no like you!” “You a bad girl!” …and then the shrieking began.

Ever feel like a fire fighter?

Small sparks were igniting and I needed to get these two angry girls away from each other before a raging forest fire erupted.  So Rosebud was sent to her room to clean, and Evie was left to unload the dishwasher all by her lonesome.  That just made them both mad, because it’s so NOT FAIR that they had to do EVERYTHING all by themselves. (We’ve all heard this one, right Moms?)

Dishes were done, room was still a mess.  Both girls were going to have to fight it out and clean their room. Their 10 x 10 room with 2 twin beds.  Boxing gloves, please…

About 20 minutes into the “cleaning” session I saw Rosebud running to the pantry.  I stopped to actually listen to their conversation (tuning out is my only sanity saver at times), and what I heard astounded me.

“I sweep under the bed and you clean the floor, OK Evie?  I get the broom, I under the bed and you clean the toys.  I GOT IT! I COMING!!!  I get the trash can for you OK Evie?” Rosebud was yelling in that sing-song-y voice she gets when she is really happy.

I literally did a double-take.

After 20 minutes, I saw this:

I called the girls over and told them how proud I was of their cheerful faces and how they were working together.  They reminded me that they had been learning about being cheerful at school all week.  Then, wonder of all wonders, Rosebud said “Cheerful face is joy in a heart, and good new is helf to bones problems 30:15”  I was amazed.  She quoted the Bible verse that they had learned in school!  Of course it wasn’t word perfect, but she knew what the verse meant.

Proverbs 15:30 A cheerful look brings joy to your heart. And good news gives health to your body. (NIrV)

Restaurant Re-Do

Children playing behind thick glass windows? Almost like watching TV with the MUTE button on!

This morning was free chicken biscuit day at our FAVORITE ChickFilA here in town.  This is a fabulous thing – what a rare treat to take my 7 children to breakfast for free!  They enjoyed their breakfast immensely – several eating just the biscuit, several eating just the chicken, and some too excited about the indoor play-place to even consider eating!  What a great way to start my Friday.  [leftovers for lunch anyone?]

About 45 minutes of blissful peace later everyone got their shoes on and came to the table as we prepared to leave.  I took a moment to get refills on our drinks from the counter that was about 30 feet away.  As I was standing at the counter talking to the cashier I heard screaming and then a crash.  RoseBud was ‘playing’ with LittleTurkey and had grabbed his chair and flipped it backwards (thankfully he stood up before it flipped).  As he was attempting to right the upturned chair RoseBud forcefully pinned it to the floor with her feet.  LittleTurkey was screaming at the top of his almost 4 year old lungs in frustration.  Meanwhile RoseBud was blocking the entrance of the restaurant with her own chair and cackling with giddy delight.  Needless to say we left immediately.

COW KIDZ!

Holy COW!

You can imagine the stares, whispers and everything else that goes along with rowdy kids in a restaurant.  I’m totally unphased by this attention at this point.  I am one person with two arms.  I can not control everything at all times.  My job is to train, and hope this will not happen next time.  My job is to control my response.  My job is to love my children even on their ornery days.

So my apologies go out to all of you at ChickFilA this morning.  You were attempting to enjoy your free chicken biscuit in peace when  an obnoxious set of children started screaming and fighting over a chair.  I will work on this at home and attempt to bring perfectly behaved, quiet, obedient children next week – on FREE Chicken Mini day!   But in case I can’t ‘fix’ her Autism and all the social deficiencies before then, maybe I could bring you some ear-plugs?

Thank you ChickFilA for a fabulous breakfast!

🙂

Honest and sincere questions welcomed!

I just got a very good question from a friend.  She was hoping I wouldn’t get upset by her asking.  I told her that HONEST and SINCERE questions are always welcomed!  I’m still searching for answers too – and I live with people on the spectrum!

How do we really KNOW that all of these characteristics are a true disability? Is it possible that some of this is just an extreme focus on self, for example — focusing too much on what I want, what I like, what annoys me, etc.? For example, can someone on the spectrum be taught that they SHOULD make eye contact no matter how it makes them feel, just because it is the polite thing to do?

I guess what I’m asking is — are people on the spectrum CAPABLE of learning to overcome these socially “different” behaviors? Can they be taught to focus on other people and learn to understand someone else’s perspective, etc?

Now, if you are a momma with a sensitive spirit, please try not to be offended by the question or my response to it!  We all have the right to question and to respond as we feel we know how.

As for that question, my answer would be that I think they can change. To a degree. I think it just takes a loooooonnnnngg time, and lots of practice. And the change has to be initiated from someone outside – not themselves.

JuneBug, for instance, can handle being in a swimming pool and occasionally getting splashed if she is really really working on it. She’s given herself pep talks and gotten her mind in a state of happiness (I get to enjoy the pool if I can tolerate the splashing). A lot of it is selfish motivation still. This is a HUGE change from when she was 3 and got splashed in the face and totally freaked – screaming as if someone cut off her hand, totally unresponsive to the outside world – it was almost like she was having a massive panic attack, with all the physical symptoms. It was really, reallly, really scary because her entire being was focused on that water and she couldn’t snap herself outside of her own brain to even hear or see anything else, even when I was right in her face, hugging her, talking to her. She was rigid and hysterical, almost catatonic.

I find that her mood has a great deal to do with her tolerance levels. When she is in a really, really good mood, she can load the dishwasher while saying to herself “it’s ok if my hands get sticky, because I’ll wash them when I’m done” so that feeling like she is going to explode or throw up is kept at bay. But if she doesn’t have that adrenilin going beforehand, she gets so panicky that it almost makes her sick. I think that is why her anti-depressant works so well to combat the melt-downs.

I think that these kids really can not figure out what other people’s perspectives are. They have to be taught that other people even HAVE a different perspective! That can be taught, but their perceptions are very different than ours. So even if they try, they don’t get it right about 80% of the time.

I don’t know if they will ever think about other people the way we do. Or consider someone else’s perspective.

I know in RoseBud’s case, when I ask her if she thinks it is fun to get hit with a toy she will say no. Then I ask her if NinjaBoy thinks it is fun to get hit with a toy she will say no. But if she has just hit NinjaBoy with a toy and I say “did he like it when you hit him with that toy” she will say YES – because she can’t see his perspective in that moment – she see’s that SHE was having fun, so he must have been having fun too. There is a serious dis-connect there.

But I think talking them through situations like these day after day after day x365 days a year over 20 years or so, they will eventually start to see other people’s perspectives. I don’t think they will ever ‘focus on other people’s perspectives’. They just don’t think that way.

Looking people in the eye is easy for JuneBug if she is in a good mood. It is torture if she isn’t. We used to force her to make eye contact over and over and over, day after day after day. She hated it, but got over her insecurities. That is what it is – when they look into your eyes, they feel like you are looking into their souls – into those inner places that no one wants people to see. That makes them extremely uncomfortable, and the flight or fight sensations take over. I don’t know why they don’t mind it when they are in a good mood. But if you see JuneBug in a bad mood or unhappy you will see that she rarely gives you eye contact.

RoseBud, on the other hand, has to be told to look at your eyes because she is so distractible.

People on the spectrum are so different. Even from one another. Some may have NO sensory issues, some have a few, and some have so many that they can’t function. Some have no clue as to how others feel – even when someone is crying and bleeding. Others can read a few emotions (excited or fuming mad). Still others are really good at reading facial expressions but have no clue why they feel that way – even if they heard the person say “I found a hundred dollars!” and saw them jumping for joy as they were saying it!

I think JuneBug is much better at seeing other people’s perspectives than RoseBud. As she gets older, she learns more and more on her own by watching her friends. She still misunderstands many of the social interactions that occur though.

RoseBud is much less aware of other people’s thoughts and feelings and doesn’t learn just by looking at the world – she has to be taught for the most part.

It’s been a long road of questions for me. Some days I just want to give up. I don’t know all the answers. Discipline is a constant struggle – what do you do when one kid is crying from being hit and the other is oblivious and giddy because she’s having so much fun? I got no end of parenting advice when Julianna was little – just spank her more, don’t let her get away with such and such. I can’t even begin to tell you the damage I caused in her self esteem and our relationship from ‘just spanking her more often’ when there were much bigger issues than her just being a defiant child.

The Lord has been a huge part in JuneBug’s growth. She is a Christian and she can feel the Spirit leading her sometimes. She has a servant’s heart, and that is something I will always be grateful for.  She used to not care a bit for others, but now there will be times when she recognizes and reaches out to a person in need and tries to help them.

Blog readers, please feel free to leave your comments – and remember this is a family friendly site so no objectionable content please!  I love different opinions.  I live in a world with 2 ASD children who have quirks and 5 NT children with just your typical little kid thoughts and behaviors.  I know those few children well, but there are all sorts of other people out there with different perspectives and experiences.  Feel free to agree or disagree as you feel led.

Intuition

Rosalie at the Beach (2)

There are many things I’ve learned from my years raising children on the spectrum.  Right now I would call it an innate, intuitive knowledge.  Seven years ago I would have called it a royal pain in the rear.

Let me explain.  Seven years ago I knew there was something unusual about the extreme reactions my children were giving me to certain stimuli but I didn’t know why.  Therefore, being a typical mom following the ‘rules’ of parenting, I just assumed I wasn’t doing my job well enough.  I spent quite a few years of training the way the ‘experts’ told me to do them and failing miserably to train my children out of their tantrums and misdeeds.  One child, and quite a while later, another child was diagnosed with Autism and I started tailoring my parenting to meet the needs of these children in their own special way.  Those books?  They ended up in the recycle bin.

Want an example?  OK.  Lets talk shoes.  Everyone wears them, right?  Everyone has their own favorites – whether it’s flip flops, stillettos, Nike cross trainers.  But for those who are blessed with super sensitive nerves, skin, hearing, and all sorts of other wonderful blessings (i.e. many folks on the spectrum), shoes may be a serious trigger for panic.  One of my children went through a severe shoe aversion period.  Imagine taking an incredibly sensory overloaded child to the mall to get shoes.  Mistake number one  – but in my defense I had no idea that she was on the spectrum at that point.  Imagine then getting this severely stressed six year old to try on a pair of shoes, then another, and trying desperately to get through a third pair – that lasted all of 15 minutes before the meltdowns escalated to the point of no return.  Pair after pair after pair of shoes were purchased – then immediately rejected because of (to my NT mind) insignificant little details.  One pair was too tight, one pair was touching a part of her foot that she didn’t like, one shoe had a label sewn into the tongue, one had a label sewn into the sole, she HAD to wear *shudder* socks with one pair, the straps on another were itchy.  It got so bad that some weeks the melt-downs lasted for days on end.  The rage, tantrums, screaming, kicking… days on end.

So what did I do, way back then?  I floundered.  Many days I forced her to wear the hated, dreaded, vile, disgusting, hysteria-making shoes – quoting the “I spent good money on these shoes that YOU said you liked!  And now, by golly, you’ll wear them!” – and then bringing down the hammer of discipline when she had the inevitable meltdown.  I then got annoyed, threw the pair of shoes into the goodwill box and made her go barefoot and brought down the hammer of discipline when she had the inevitable meltdown (again).  Um…so much for conventional parenting wisdom…

These lessons were very hard to learn.  For me, the parent who was going insane trying to figure out how to deal with these horrible behaviors, and for her, the child who was spending her energy not flipping out over these daily excruciating sensations.Lesson 1.  Never assume.  Know what you’re dealing with (Autism, sensory issues) and don’t just assume your child is being defiant on purpose.  Lesson 2.  when you figure out what you’re dealing with, preparing and pro-active planning are absolutely essential.  Lesson 3.  if all else fails and there is a meltdown, don’t focus on punishment – focus on teaching ways to deal with the situation better next time.

So, now after all these years, some things have become second nature.  Intuitive.  As natural as breathing.

Transitions need to be clearly defined.  This prepares the child for what is to come giving her power over her future and a sense of security.

Using a timer is an absolute MUST in my family.

I know that I need to give a 5 minute warning, and stick to it.  When the timer rings, I know that I will need to allow the girls time to finish the game they are playing before turning off the computer, or time to finish the game with friends, or time to finish that page they are reading.  To say “timer went ding – get off NOW!” guarantees a meltdown of massive proportion.

Where one child needs solitude in order to regroup and chill out, another needs serious one on one time preferably with deep physical contact.

One child is sound sensitive, so I put her as far away from lip-smacking, soup slurping chatterboxes as possible.  I prepare her for possible noisy places by reminding her to bring headphones or ear plugs.  I instinctively know that after a loud event (such as a car ride with 6 siblings in “YEAH! School’s out!” mode) she will most likely have a headache and I should refrain from talking to her.

I know that time is an issue for these children.  One has a very hard time dealing with concepts of “later” and “soon” or any other non-specific, abstract time concept.  Giving exact times helps prevent perseverance.  One has a very intense need to be exactly on-time.  When she feels that we are ‘late’ for an event or appointment it is overwhelming.

When giving chore assignments, one child has to be as far away from others as possible – including not crossing anyone’s path as she goes back and forth putting things away.  The best of the best situation is to let her do her job when everyone is finished with theirs and playing either in their rooms or outside.  The other one needs constant re-direction.  I have learned to ignore the “it IS clean!” and just simply shove everything into a pile into the middle of the room that is supposedly ‘clean’.  Working one on one with this child is an absolute must, as she is still young and has the attention span of a flea on speed.

In the van, I have become the master at strategically orchestrating entrance and egress.  I know not to put one of my girls in the rear.  Between the motion sickness and noise, the inevitable fight over the loudness of the radio and the force at which the a/c is blowing it simply isn’t worth it!  And when entering and exiting the rear of the van I know that there will be casualties from her rage at having to sit in the back like a ‘little kid’.  I know better than to put the other in the seat next to 1. a loose seat belt, 2. a child, or 3. directly behind the front seat. I know that I need to make her take her shoes off and put them on the floor before we get moving.  Many times over the years I’ve had to pull over to the side of the road to assess injuries after she has used a seat belt buckle as a lasso or a flying shoe has beaned someone upside the head.

Many momma’s have to plan strategically for events, and maybe even for bath time and bedtime, but you should see what we go through to have a decent meal!  I know not to sit child a next to child d and child c must not be across from child a or f.  And heaven forbid child e is near enough for child b to touch her!

I should be a military strategist – or at least a doctorate level educator for all the real world experience I bring to the table…

Emotional Detachment

I am going to quote a book that I’ve been reading:  “Aspergers on the Job” by Rudy Simone.  Ms Simone has been diagnosed with Aspergers Syndrome and writes from both a personal perspective, but also from research from hundreds of people – both employees with AS and their employers, federal and state advocacy and agencies.  I think this book is fabulous and if you have a child/teen/adult that you love that has a high functioning form of Autism or Aspergers – this book definitely belongs on your bookshelf!  Preferably dog eared and falling apart!

A person with Asperger’s Syndrome will often say or do what is logical rather than  what is socially and emotionally expected of them.  If a person is emotionally detached at a time when a more compassionate, emotion-driven response is called for, it can get them a reputation as a cold fish.  And emotional situation would take the AS person into territory where they cannot control or predict the outcome, and many (particularly males, since it is something of a male reaction anyway) will avoid emotional demonstrations or reciprocations of any sort.

Mix: one logical approach to life, one aversion to emotional situations, and add a dash of difficulty expressing yourself; put it in the world to bake for a few years and out comes Mr. Spock.

Yet people with AS can be incredibly compassionate and kind and AS does not preclude empathy (Hesman-Saey 2008).  They will open doors for the elderly, give change to the homeless, rescue wounded animals, give aid to a friend in need.  But there are times when:

  1. Empathy pathways are bypassed, due to a high level of stress or anxiety or feeling ‘attacked.’  If there is any sort of drama going on and the AS person feels like they are being accused or implicated, they may become defensive, angry or shut down.  They might not find the right words, go silent, or stutter if upset.
  2. They feel empathy but don’t know how to go about expressing it.  This is called alexythimia.  It means difficulty identifying and describing emotions, both your own and others’ (Wikipedia 2008).  It is a common component of AS.  Reaching out to a person with alexythimia can make for some awkward moments.  For example, you may be telling them about something awful that happened to you and they will point out something worse that happened to somebody else.  It sounds as if they have no sympathy for you.  In reality they are trying to make you feel better but are going about it rather clumsily.
  3. The situation is something they’ve never experienced first-hand, so they truly do not know what it feels like and cannot imagine.  This is a problem of “theory of mind” – not fully realizing that others have feelings and thoughts different than your own.  If a person with AS has never experienced the death of a loved one, for example, they may really have no idea how that feels and may not be the person to turn to for soft words and kind gestures.

In the section on “What the employee can do:” the author (who herself has Aspergers Syndrome) writes many suggestions that are simple, direct and clearly stated.  Here are just two from the list:

  • Accessing emotions can be learned, especially if one is supported and in a loving environment where it is safe to do so.  Try talking about how you feel with someone you trust.
  • For those with spiritual inclinations, the Buddhist/eastern practice of ‘mindfulness’ to foster empathy and compassion for others has been mentioned as a good technique for those with AS, as is the Christian ‘golden rule’ of doing unto others as you would have done unto you.

The section on “To employers and advocates:” the author also lists many suggestions.  Here are a few:

  • Don’t take it personally if your AS employee says something insensitive.  They are compassionate; they just don’t know how to show it sometimes.
  • If they have been a bit callous, or un-empathetic, take them aside and give them a working example or anecdote they can relate to rather than telling them how they should feel.

So how’s that for some concise, easy to understand info and advice?  If you like these few ideas, please pick up the book Asperger’s on the Job – Must have advice for people with Asperger’s or High Functional Autism and their Employers, Educators, and Advocates by Rudy Simone.