I Can FIND Them!

Sometimes we forget.

 

We forget that even though she isn’t looking at us, or seemingly paying attention, she can still hear us.  And understands fully!

 

I said to the sitter “At bedtime, make sure you put the remotes up high so no one can get them when they go roaming around in the middle of the night.”

“Yeah, like RoseBud!” shouted a child from another room. 

Without skipping a beat or even looking up RoseBud said “I can FIND them!”

It was classic!

We all cracked up!  Too bad I didn’t get it on video when it actually happened – it was completely priceless!

A very close re-enactment:

Emotional Pain vs. Physical Pain

When I was a kid if I stubbed my toe I yelped then cried.  If I had a tummy ache I held my tummy and acted sick.  Headache?  I avoided loud places and went to lay down.  When someone asked what was wrong I could usually say “my toe hurts” or at least point to the ouchy spot.

Last week I had a refresher course in the uniqueness of a child with Autism.

My sweet Rosebud and I have been working specifically on keeping our hands and feet to ourselves among other things.  Last week it was like she had reverted back to the three year old who needed attention and used her hands to get it. Hitting, poking, grabbing people.  Geting in others faces and yelling loudly, spitting, screaching, and laughing at FULL VOLUME.

Thursday she was mildly annoying. 3 minute time outs were down to 28 minutes, including cleanup time.  By Friday the behaviors were obnoxious, plus now she was reverting to wetting her pants every hour.  By Sunday her obnoxious behaviors became downright dangerous (throwing hard objects at people’s heads) and a 3 minute time out stretched to just under 2 hours.  All day long it was wailing and crying from one child or another…and sometimes from myself!

Mommas you have been there, haven’t you?  You do x, y, and z that the ABA Therapist tells you should work.  You get a good measure of success but then something happens.  It all falls apart and you think “What could I be doing wrong? This SHOULD be working! It has been working” and you blame yourself for failure.

I was in a very frail emotional place Saturday night after several hours of being the non-reactive, calm parent.  I locked up everything Rosebud could get into, left her with her older sister, and took the younger 4 children out of the house for a drive in the torrential rain.  Begging God to help somehow, a song came on the radio by Matthew West:

“I know I’m not strong enough to be everything that I’m supposed to be. I give up. I’m not strong enough. Hands of mercy won’t you cover me? Lord right now I’m asking you to be strong enough. I’m not strong enough.
…I can do all things through Christ who gives me strength.  I don’t have to be strong enough.”

Sunday morning there were no clean pants left in the entire house for Rosebud after her three days of incontinence.  I told her to wear an old pair of pajama pants, and went to church.  I left her in the care of a nice lady in childrens church who was given instructions to not let her near enough to her siblings to touch or harrass them, and to take her to the bathroom every 30 minutes just in case.

I went in to worship God.  The pastor spoke about being on fire for the Lord even through our hardest days.  He shared a story about a friend’s faith even though his daughter was medically fragile from birth.  Anothers faith through a separation.  And as the sermon went on I told God that I give up, I’m not strong enough.  But you would never guess what happened next.

Service was over and I went to gather the children.  Rosebud had made it almost all the way through the service staying dry.  Almost.

On the way home I had an “a-ha!” moment.  I asked Rosebud “does it hurt when you pee?” And she got all teary eyed and said “YES!”

Rosebud was suffering from a very real, incredibly painful urinary tract infection.  Because of the way her brain is wired, she could not tell me.  It was real physical pain that brought her good behavior to a screatching halt!  There was a real, definite cause to her seeming “reversion” to when she was younger (incontinence, massive hours of meltdowns, hurting people).

I stopped blaming myself and started begging God to be strong enough for both of us.  I give God the credit for this one folks!  He brought the UTI possibility to my mind.  He loosened her tongue and tears when I asked her if it hurt, so she could give me an accurate answer.

After a trip to urgent care Sunday, her medicines started working and she is just about back to her gregarious, fun-loving self.  She is back to responding well to the ways I’ve learned to encourage proper behavior.  I’ve got my Rosebud back!

Thank you Lord for being strong when I am weak!

Here she is (with her siblings and schoolmates) singing this very same song:

1 in 88

The CDC released the figures of 1 in 88. 

Autism is an epidemic. 

Some agree, some do not. 

I hear this number and automatically think “that seems about right”.   We moms of children on the spectrum generally have, over the years, sought others like ourselves.  I was wondering, does your average Joe/Jane American come in contact with quite as many people on the spectrum?  Do they see Autism as an epidemic too?

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Did you know that the figures released by the CDC say that 1 in 54 boys and 1 in 242 girls are affected with Autism?

Girly Autism is on the rise!  One girl in 242, wow!

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Our girls are so unique, aren’t they?  Many of them do not quite have typical, textbook, classical, “spot it from a mile away” Autism.  Therapists I’ve spoken with tell me it is harder to pinpoint an Autism diagnosis in girls on many occasions.

My own Rosebud was clearly different as a toddler, but because of her social, gregarious nature, I had more than one professional tell me she did not have Autism.  I even had a school psychologist tell me she didn’t have Autism after a few minutes observation.  That same psychologist appologized to me after being with her 1 on 1 for testing.  “Yes, your daughter does have Autism”.

With 1 in 242 girls being diagnosed now, it is important for those of us with children blessed with Girly Autism to communicate with each other.  We may not always agree on things (vaccines, diet, therapy choices, etc.), but we all need to know that there are others out there like us.  Moms in the midst who need social, emotional, and sometimes real practical help from others who have been there!

I encourage my readers to post their favorite blogs, articles, and links in the comments section.  Many of you have passed along GirlyAutism to your friends and for that I thank you!  

Letter Writing

This week Rosebud has been learning to write a friendly letter.  She started off writing repetitive sentences, then her teacher nipped that in the bud.  Did I mention how much I love her school? 

I will you mom
I will you dad
I will you mom give me the let
I will you dad
I have a letter for mom
Dear mom have a letter for you
How I am fine we had a cear
for dad and mom to me and
Wan to the beach play in the water
Wen ad fun to today a time
In the pool take care today.
Fun summer and fun.
Fun g in the water.

It is interesting to read her writing.  Yes.  It is disjointed and odd, but if you read through you get the impression that she wants to play in the water.  So, in her own way, this letter conveys a meaning from her  to me.  Neat!

I think of those of you reading who think “if only my child could communicate like this…”  I understand the roller coaster ride of acceptance, sadness, resignation, joy, and gladness.  The struggle to find peace in letting her just be herself, yet wanting to understand her thoughts and be able to communicate with her and know that she understands you.

I remember the days when all her little friends were chattering away, talking my ear off about bugs, airplanes, lizards, Dora the Explorer and Elmo.  They talked about their new underpants and being big girls and peeing on the potty.  And  wanted to play tea parties and dollies.  I remember well, amd wanted that day to come for my girl too.
Well, patience (which I have very little) was grown in me.  I can proudly say thay at 8 years old Rosebud was finally potty trained!  At 9, she loves tea parties, pushing strollers with dollies, catches lizards like a pro, talks about Dora, and not so much Elmo, but  muppets in general.

And now she can write a “friendly letter”.

I hope this encourages you with your own girly girl…  These children are on their own time table.  You can push them, bit they will only move when they want to.

Sentences from Rosebud

More sentences from Rosebud’s schoolwork (Horizons Spelling, grade 1), showing her unusual language skills at 9 1/2 years old:

I will be queen.

I will be quiet.

I have a question.

I love to write

I will made cent

I love my cent

I will wait

These are fill in the blank sentences:

I am happy when I love my Job.

The little lad Is Clean.

The surprise gift was a present.

The children were joyful because I love joy.

The boy will throw The ball.

Three words were given in the word box.  The instructions were:  Use the words in a sentence.  Draw a picture.

I love my boy

I will nice

I wait toss

(no picture was drawn)

I will be kind

I love joyful

I love lass

(no picture drawn)

and last but not least:

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I love my girl I will be happy I love my present

 

And the last thing on this page was the Bible Verse: Love is patient.  Love is kind.  1 Cor. 13:4  Write the verse.  Write something kind you can do.

I love to my job.  I will be nice to my girl.

Rosebud’s Letter to Mom

Below is a full page hand written letter Rosebud wrote to me on Valentines Day 2012.  She was 9 1/2 years old, and working through her first grade English curriculum at school.

This may look like a bunch of jibberish-like nonsense to some, but to me this is the real Rosebud.  She talks like this a lot.  Her statements are teensy-tiny glimpses of things going on inside her head.  Sometimes I understand, but other times I don’t.  She almost never sticks around to answer any of my questions, so I am usually left guessing as to what she’s actually talking about.

Will she ever write stories that flow and make sense to the casual observer?  I’m not sure.  But I’ll love her just the same.

 

Daer mom I Love You in my home is Peter come to your home yes Ed will love your pet is a cat an come to a school and play a ball is red no I cant a cat can go to schooch yes I can pay in the slend no cat cant play toys no a cat can said I will jion the paper I special a cat come a plcases is done for something is not a book you may mail you note Love mom and dad.

Originally posted on The PB&J Tales:

I stood watching my young children play on the playground from the sidewalk outside the fence.  BubbaBoy had fallen asleep in the van and from my vantage point I could glance over and make sure he was ok.  It was mid-February in sunny Florida, yet the sky was a deep dark grey with clouds of smoke rising from the west.  Ash fell like snowflakes reminding me how lucky we are to be away from the ice and snow of the frigid north.  The forest fire season was just coming upon us yet the smoke was far enough away to let the children play outdoors without fear of asthma attacks.

Rosebud was wandering aimlessly from one play area to another.  Chewing on her fingers, surveying the surroundings, avoiding the other children.  She headed over to the climbing structure that looks like a giant soccer ball made of bungee cords that her…

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