Autism Asperger's Digest

I love Autism Asperger's Digest this month.  There are some great articles on "Raising Multiple Children with ASD's."  I haven't even finished reading them all because I like to savor them, like a Swiss chocolate.  If you are new to Autism Spectrum Disorders-and even if you are old-to Autism Spectrum Disorders, I would definitely recommend a subscription.  Totally worth it.  I never throw away my copies because they are so helpful to go back and re-read.  It would be a great gift idea too, with the holidays approaching.

IN THE BEGINNING...

Hunter age 18 months and Sadie age 5

 The following is a short essay I was asked to write for a book coming out about disabilities--(more on that later)

“Just throw the leaves over the fence” I told my husband after he asked what to do with them.  

He and the kids had been raking and playing in the leaves outside for most of the morning while I tended to our newborn baby inside.  In my exasperation, I failed to explain in detail to my husband that what I really meant was to throw the leaves in the dumpster on the other side of the fence. 

 Instead, because of his undiagnosed disability-which would later be classified as an Autism Spectrum Disorder-he took my words literally and dumped the leaves in huge piles lining the other side of the fence; while being completely oblivious to the ominous gray dumpster just several feet behind him. 

 Our entire married life has been filled with these sorts of events but it wasn’t until the birth of our last child that we clued in to Autism as being the culprit.

Our youngest boy was not meeting his developmental milestones.  He did not have eye contact, did not mimic us, had no interest in social games and he preferred to be left alone. Noises and lights bothered him and he began having auditory induced seizures.  By 12 months, when the hand flapping manifested, I knew he was autistic.

Thus began the beginnings of our Autistic life.  I poured over books and did countless hours of internet searching.  I was on a quest to heal my boy.  In time I became fully aware that autism was a spectrum, and that not only did it affect my husband and our  youngest son, but also our other two boys, and eventually eight years later, I would learn our only daughter would be diagnosed as being on the spectrum.

The signs were all there, but denial became a part of our home as well as all of the other steps of the grieving process:  depression, anger, guilt, bargaining, and acceptance.  I revisit each one often and without warning. I don’t think those feelings will ever go away, especially when I am reminded of how different my children are when we go to family functions, schools, church, activities, etc.  It is a slap in the face and it stings. 

During these past few years I have learned and am still learning to take it one day at a time and sometimes I have to dial it back even more and take it hour by hour or minute by minute.  Autism can be cruel and unfair.  Our children are intelligent enough to know they are different than their peers, so as they experience the teenage years, dealing with autism shifts from the physical challenges to more social, hormonal and emotional challenges. 

Our faith plays a big role in how we survive these tough times.  I know there is a purpose for these trials and I also know we are blessed by enduring to the end.

ROPE LADDER FAIL

Above is Big Man Mason-all 190 pounds of him--trying to climb a rope ladder. I always hated those.   Enjoy. :)

GIRL INTERRUPTED by PDD-NOS

School has begun.  Our oldest is a senior and decided to go back to public school after a year of attending an online school last year.  So far, she says she is not used to easy work.  Last year's curriculum online was very intense and busy, busy, busy.  She is sort of bored now, but likes having a routine.  

She is recognizing how her PDD-NOS affects her in everyday life, after being diagnosed last Spring.  So am I.

 Friends?  Not so much.  Just one, and as she sees this friend mature and hold down a job, plus date, plus drive...it sets her apart.  She's just not ready for that--yet-and wants to be like everyone else.
  
As she left for school this morning, I eyed her up and down.  She wore sweatpants that are too short (they're supposed to be for bed or around the house) and a frumpy sweatshirt.  She feels comfortable in them and any source of comfort is something she craves when heading off into the world she's unsure of. 

 She ran a comb through her hair, but has no desire to straighten it, or curl it.  I've done it for her and shown her how, but she doesn't care enough to struggle with it every morning. 

 Last Spring, I took her to get contacts, but after she tried for 3 hours at the optical shop to put them in, we ended up leaving when they closed.  She doesn't want to try again.

 What about make-up?  She says she isn't coordinated enough to put make-up on.  I never really thought about it before, but yes--sometimes with PDD-NOS, fine and gross motor skills are lacking. 

So this morning, as she left, I tried to roll her sweatpants up to just under her knees, like I've see the other girls at school do.  

"It's ok, Mom, my legs are too hairy."  
"Are you sure?" was my reply.
"I don't care how I dress, Mom, because today is Friday.  No one notices me anyway."

I wish people could see her as I see her. She's extremely bright with a great sense of humor. She's beautiful inside and out regardless of the PDD-NOS. 

 But then again, I'm just a mom. 

Our Trip to Paradise

Paradise Lane

Our trip to Mulino, Oregon, outside of Portland, was a success.  This was our first attempt to go together as a family on a vacation that wasn't just an overnight local trip.  We visited my sister Liane and her hubby Paul, and cute little girl Maddy (age 3) and handsome dude, Woody (age 2), who moved there from Salt Lake City last February.

 We followed my mom and dad and another sister Alana, and her four kids (Raine, Aspen, Ethan and Lily) on this journey.

The backyard

Following my dad left me feeling very anxious because of his infamous shortcuts.  Before this trip, we had talked my parents into buying a GPS and getting familiar with it, but apparently my dad just ignored the automated voice and kept driving like he's The Boss.

We drove through desert, hills and valleys and along the Colombia River.  Ryder was so good the entire trip, I almost thought we left him at home.  After 13 hours, we arrived on Paradise Lane, where we would stay for a week.  True to it's title, it was paradise.

The thick, green trees and overgrown canopies were breathtaking. Moss grew everywhere including on the roofs!

My sister, Alana, made miniature fairy houses to hide in the trees for our niece and nephew.  They were so cute and fun to find. (Now the neighbor kids all search for them.)  Wish I took a picture of them.
Enjoy the pics.  Sorry for the bad formatting.  I don't have time to mess around with it right now. :)

---My sister Liane and husband Paul with Maddy.

                                               Liane and Ethan----

----Hunter and Aspen

                                            Their neighbor's tree house--

---Awesome moss, wish my camera could do it justice.

;----Grandpa Myers is in heaven.

                             Ryder looking content or is that sleepy?--

The whole trip when by so fast.  The kids went on free, miniature train rides, where we discovered that wild berries were everywhere.... Yum.  We went a-foraging. 

;---What is this doing here...you might ask? Well, this is my dad's latest hot topic.  If you have a free hour or two, have a seat because he'll tell you all about it.  These medical secrets will redefine aging as we know it.  :)

A neighbor has beautiful property by the river and we were able to picnic there.  ------

My sis and hubby live right next to his brother, on Paradise Lane.
They let the kids ride bikes.  Ryder loved this!  ---

 One day we went to The Enchanted Forest, which in my opinion, for kids on the spectrum...beats Disneyland hands down! The weather is perfect, no long lines, and the staff was so thoughtful.  One staff member gave us all free snow cones because Ryder reminded her of her brother who has autism. Bonus!

---Here is Woody escaping something...

 

                   Once again, I wish my camera could do these pics justice.  I love the rich greenery.---------------

----Bill and Ryder enjoying The Little Old Lady That Lived in the Shoe.

Ryder trying to get into a door that doesn't really open. :) ---

 ----Sadie and Aunt Liane

                      Grandma and Grandpa Myers------

---Look!  A real telephone booth!  Haven't seen one of those in years.












Ryder loves smoke because of its "wispy-ness".

Bill studying the landscape for catching crawdads.       

Big Man Mason

Hunter building a sandcastle

Maddy

Lily and Aspen

Ryder in heaven

Playing

One Giant Stimulating Factor

The Last Bedtime Story-a book review for special kids

 I wanted to share a really cute book that was written by Carol Gray, called The Last Bedtime Story that we read each night.  This is a great concept for a book! 

Have you ever read a story to you child only to end up reading book after book while your eyelids fight to stay open, but your little one requests more and more?

This book is the last book you read to your child, night after night.  For kids who thrive on routine and sameness, this is awesome. Your child will know that after this book is read, it is Zzzzzzzz time. No more requests for more stories.  It takes less than 60 seconds to read, and it has a rhythmic pace to it--like a lullaby. 

The author, Carol Gray is an award-winning teacher, author and speaker who majored in psychology and child development.  Her post graduate work focused on special education, where she would teach social concepts and skills to children.


You can find the book here:  http://store.fhautism.com/p-1245-the-last-bedtime-story-that-we-read-each-night.aspx

THE FINAL COUNTDOWN

It is countdown time.  In less than six days our family will be embarking on a never-before-attempted 9 hour road trip. We are traveling to Portland, Oregon to see my sister and her family who moved there recently. The kids have never traveled in a car for longer than a trip to Yellowstone or Salt Lake City.  We will either have to A) separate kids  B) drug them  C) threaten them with their life, or D) all of the above.   The van will contain 4 sleeping bags, 6 pillows, 4 duffel bags, 2 ipods, 1 ipad,  and a piggy we stole from the shed.  

  

I am most excited to show the kids the ocean. Who cares about Disneyland--a place where they each would have terrific meltdowns because of all of the people and noise-but the ocean is one giant STIM!  They will love it!  We will also be staying in Astoria, where they filled the movie "Goonies", one of my all time favorite shows.   

Wish us luck!  :) 

A RARE RYDER SIGHTING, INDEED

A ONE in a MILLION picture of Ryder!  Look at that eye contact! It's as rare as a genuine pic of Bigfoot or the Loch Ness.

Props go to his DT, Melanie Rede for taking this while they were at the park. Thanks, Melanie!

SHOULD I FILE A FORMAL COMPLAINT LETTER?

Homeschooling is wrapping up.  I hope I can breathe then. 


We have one child not functioning right now.  It's been very difficult and very sad, but we carry on hoping for the next medication to help.  (Believe me, we've tried ALL other avenues.)  We've just received his updated testing results.  We thought we were looking at possibly childhood Bipolar, but it isn't.  Instead there really isn't a name for it; it just fits under PDD-NOS still.  Rigid thinking, inability to disengage in his thought process.  It could be a precursor to OCD.  His anxiety is through the roof, and he has dropped out of everything he once loved such as school, scouts, basketball, church.  Everything. 


 Why don't you just make him go, you ask? We've tried.  He crumbles.  He paces.  He head bangs.  He needs to feel safe.  Somewhere.  The school wanted us to call the police and MAKE him go.  HA!  How hard is it to understand that Mason is NOT doing this because he is manipulating his parents and the system?  He has never been that kind of kid.  He is innocent, I tell you!  Yes, his behavior looks as if he is trying to get out of things that cause him distress, but take a step back and really "see". What is causing this behavior that we haven't seen since he was a toddler?  He is approaching puberty, and I have heard some kids on the spectrum go through puberty early.  He is 5' 9" and weighs 185 at age 11 years old. This kid has always grown fast so I am sure hormones coupled with chemicals going haywire are contributing to these daily meltdowns.  He feels like he is going crazy when his mind gets "stuck". It is so sad to witness.  

What I have learned from all this, is that people don't really care unless it affects them personally.  The school is too worried about their numbers, or they don't get funding.  After 12 years of our kids going to this school, we experienced yet another loss when we had to pull him out of school. 

 Here is an excerpt from a complaint letter I filed:

During the 2011-2012 school year, Mason started to get headaches.  He said he couldn't concentrate in school and couldn't understand the work.  The work was getting more difficult and his anxiety level escalated.  He began missing school days.  We as parents tried many different tactics, from a 'tough love' approach to reducing stressors and we met with his school teacher who did a good job at helping him such as giving him extra time to complete homework, staying after school, etc. 

 According to teaching staff, he appeared at school to be "checked out". The staff wanted to implement a behavior plan, but we wanted to wait. There was a reason behind his so-called behavior  and we needed to get to the bottom of it. We had scheduled many doctor appointments and were waiting to get him in to see his neurologist.  It took some time. 

In the end, Mason was just not able to attend school without a battle every day.  As parents, we knew he was deeply depressed and anxious and this somehow was stemming from difficulty with comprehension due to his PDD-NOS.  His physical complaints were an outward display of the inner turmoil he was experiencing.  He struggles with expression of speech, and couldn't explain and didn't know why he was struggling so.  He just knew he was different than the other students and his previous attempts to fit in, such as using a sense of humor, were not helping anymore.  He was in a downhill spiral and had slipped through the cracks. 

As his mother, I knew eventually his peers would surpass him in development, but had hoped that we could get him through 8th grade at **** with minor issues.  To school staff, it appeared Mason had pulled the wool over his parent's eyes, and he was deliberately being difficult because he wanted to be homeschooled.  While that may appear so; one must take in account that a child with Autism has great difficulty expressing themselves and physical complaints are great indicators that we need to look further into what the problem actually is.  Children with Autism Spectrum Disorders have great difficulty LYING.   They are concrete thinkers. 

Our issues with **** is this:  Making assumptions that a child is manipulating their surroundings/parents/teachers is incorrect. Putting undue pressure on parents to "get the child to school, even if you have to call the police" is inappropriate.  If a child had a brain tumor and required homebound services, would there be such a battle over attendance? Why should it be any different if a child has mental and emotional problems?  We understand **** will not get funding without a 97% attendance average, and staff are in jeopardy of losing their jobs. What about the mental, emotional and physical health of a child?  Shouldn't that come first before they can be educated?

We as parents felt intimidated and pressured to get Mason to school.   He had missed 16 days of school by February 2012.  We had exhausted all available resources and just needed some understanding and patience.  We have been affiliated with **** since 2000, when our oldest child started kindergarten. 

Frustrated, we pulled Mason out of **** in February 2012 to homeschool him and to get him appropriate services so that he can eventually achieve success.

 It would have been helpful if the school could have offered homebound services for Mason.  I did not know such a thing existed until recently.  Now, because we pulled Mason out of school, he has lost his place at ****.  He not only lost his place physically, but emotionally and mentally as well. 

A blind child would have had more accommodations in place than a child with High Functioning Autism. 

The Center for Disease Control recently released the latest facts:  1 in 88 children in the United States are diagnosed with an autism spectrum disorder.  And these stats are 4 years old!

 

PS:

There has been another incidence where we felt intimidated by the dean, ******.  Our youngest child with severe Autism had his name drawn in their lottery for acceptance into the school.  He was six years old  at the time.  The special education teacher and ****** expressed their concerns about our son's severe condition and that, because they are a small school, they do not have the space for him if he were to be disruptive.  He would have to be taken out in the hallway to stay.  They were also concerned that they would have to hire an aide specifically for him and that they needed time to find someone.  They were not very positive, but by law, they have to adhere to the rules, and it was very obvious that they did not want a child with severe Autism to be among them.  We went home to think about it, and in the end, didn't want to cause the school to be burdened with our severely autistic son. 

 So tell me, should I sign this letter to request a formal investigation into the school?  Or should I just leave it and move on? 

I HATE causing waves.  I do not like conflict of ANY kind and I shy away from it.  I don't know what to do. 

FAMILY INTERRUPTED

Life keeps moving along.  There have been a lot of changes with us since I actually blogged on a personal note.  If I were to write everything down it would take way too long so here are some happenings in a nutshell.  Try a coconut shell. :)


1. I'm homeschooling the three oldest kids.  (Long story...)
2. I'm homeschooling.  What?!  I'm really homeschooling?  
3. I don't like it, but the alternative isn't good for our kids.  For right now.  
4. Please don't judge us.  I hate having to explain to people why.  How much time do you have?
5. Wish I had a housekeeper.
6. And a cook.
7. And a third hand and an all-seeing eye. The kids would think that was cool.
8. My brain is fried. (Insert William Shatner's voice here)  "...My....brain....is....(wait for it)...fried." 
9. Our only daughter, age 16,  was diagnosed with PDD-NOS recently. 
10.  Time for lunch.  ...Now where is that cook?


The above photo is a reminder of a time of  bliss before Autism interrupted us.  I wouldn't change it, but sometimes it really does feel like a loss.  I grieve for what could have been on that path.  Now I just don't know what to expect for their future, but I'm trying.  As hard as I can.