Kindergarten’s Getting the Green Light

After another grueling IEP meeting with our district I think the phrase our administrator used was, “It’s with great pleasure that we extend an invitation for Aiden to attend a general ed kindergarten class for the 2008-2009 school year.”

The room cheered and my eyes filled up with tears.  Two years ago, after our diagnosis of Autism we said, “What do we have to do to make sure our son catches up and attends a general ed kindergarten?”  Exactly what we had done.  Two years of jumping through state and medical professional bull shit and red tape, fighting and arguing with a school district to take us seriously, therapist after therapist until we got just the right one, worrying and crying over how it’s all going to get done and paid for.  FINALLY – Some fantastic relief and great celebration for ALL OF OUR HARD WORK!  Especially, Aiden!

Now I believe we have inherited a whole new slew of worries but, we’re going to first bask in the joy and celebrate this great accomplishment.

Outgrowing ABA Therapy

 In the past six months we’ve noticed a big change in Yester’s behavioral program.  In July last year, I had voiced concerns about where Yester’s program was NOT going.  It wasn’t moving fast enough and it certainly wasn’t moving with the age appropriate behavior Yester was beginning to demonstrate.  In turn, Yester is staging a protest with his behavior because he’s bored and unmotivated by the rewards (new or old) that we’ve tried to introduce.  That’s when I knew, things with the program weren’t going well.

I called a team meeting and we discussed the changes I’d like to see happen.  At the end of the meeting I summarized the urgency by saying, “We need to put some life back into Yester’s ABA Program”.

Two months have gone by and no changes.  Now, in all fairness to this agency, I have to mention that we met one more time during those two months to communicate the exact details of the changes that were to be made.  However, as of yesterday, we are still looking for a new tutor and re-vamping his behavioral program.  Ugghhhhhh!

I wondered… is it possible that Yester has just outgrown his ABA therapy program?

I posed this question on an autism parents forum I visit often.  I was surprised to hear from parents that said, “Leaving ABA therapy was the best thing we had ever done!”  Some had realized the same as us – their kids had outgrown ABA therapy.  They went on to mention in their answer that they felt like their child was engaging in correct responses to social behavior and everday tasks because of pride – not because of rewards.  They had gotten to a point where an autistic child was intuitive enough to know that a feeling of pride and love is a reward.  This idea I understood.

The Agency

Understanding that communication is key when dealing with any agency – I still couldn’t wrap my head around the fact that Yester was pushing them!  In my own way, I was under the impression that agencies that serve the autism community are intrusted with the knowledge to effect change.  Placing one program in motion – in hopes we discover a new skill is what most of us are looking for.  We should feel a sense of accomplishment with each therapy we choose.  Point A is here. Point B is here.  By this calender month, we’d like to have your child HERE….at Point J.  Clearly, a progressive program strategy.

Our program felt more like.  Point A is here.  Yester is at Point H.  So, we’ll start at Point F. 

HUH?

That’s only two points away.  I’m screaming in my mind….”LET’S MOVE ALONG PEOPLE!”  My son should not be pushing you!  You should be challenging him!  No wonder he’s bored!  What an innaccurate picture of his behavior during sessions knowing how he feels.  He must have meant it when he said, “Tutor, you’re boring!”

Tod and I agreed.  If after communicating to this agency that Yester needed a program that challenged his ability to acclimate programs quickly – we find that they cannot.  Then, I believe we will need to think about the fact that Yester is ready for something different. 

Changing the Names to Protect the Innocent

After leaving behind our first blog with over 2,000 hits it pains me to see the few that have visited the new site.  I have been able to follow up with some who have questioned the names and people mentioned in this blog.  If you know us, if you’ve heard of us, most likely you know our true identity.

A year ago, when Autism Everyday was created, we vowed to keep our sons identity a secret as he grew older and started to enter a more public domain and community.

 For his protection, Autism Everyday and it’s family Tomara (aka Tomorrow), Tod (aka Today) and little Yester (aka Yesterday) were born.

The facts and events are true and inspiring but the names have been changed to protect the innocent. 

Enjoy!

(Bung…Bung)  chime from Law and Order

A Real New Yorker!

                

Our  trip to New York couldn’t have been more fun!  I’ve been wanting to go to New York my whole life!  It was on the list – you know – the list.  The list we all have that says everything we want to do or see before we die – the list!  New York was right before Walt Disney World and right below working in Public Relations.

Arriving in November is like no other to a California native.  We don’t really have a “Fall” season here in CA.  New York was full of warm hues of burgundy’s and rustic oranges. Bright yellow’s and scarlet reds I had never seen on a bushes and trees before.  It’s not like there’s one specific area where you can view all of Fall in one look.  These colors are EVERYWHERE!

 Yester’s first flying experience was just that – an experience.  He actually did better than I thought.  We thought flying at night would satisfy his expectations that the airplane would be taking him to outer space.  So, we booked the red eye.  No sooner were we up in the air did Yester yell on the plane, “OK….time to go down now!”  We quietly explained that it was time to sleep and when we woke up, we would be closer to New York.  Notice I said, “Closer”.  We were still trying to figure out how switching planes in Michigan was going to go over.  By the time we were up in the air again and landing in New York, Yester was a real pro.  We ditched the car seat on the second flight because truthfully, no one else was using them and lugging it around was proving to be a real pain in the ass! 

We were excited to stay with friends and enjoyed their hospitality and the historic charm of the town they lived in.  I will go on record and say that “Endicot, NY has the best apple cider money can buy.”  The day we left for the city was an exciting one.  I couldn’t wait to see the skyline of Manhattan I had only seen in the movies.  I was nervous and anxious to see how Yester was going to react to the hustle and bustle of the city.

When I first walked out of the glass doors from the subway tunnels and on to a busy street of Manhattan I didn’t quite feel the excitement I thought I would.  Maybe because the door we exited from led to an area of New York that resembled Downtown Los Angeles.  I mean I knew we were “in” New York but, I just didn’t feel it.  We hopped on to another subway and exited the steps to another area of Manhattan.  As I walked up the steps I could see tall buildings with striped awnings at the base.  To my left was a large area of trees with those beautiful fall colors I swooned over.  The street was busy with yellow taxi cabs everywhere and a man with a shiny silver cart was quickly handing out warm and nutty smelling bags of  roasted peanuts to the crowd that surrounded him.  My eyes got watery and my heart was racing with excitement.  I looked at Tod, and I said, “Now I’m in New York!”

The view of Central Park was surreal and a must see for Yester.  It was a perfect scene  In my mind I was skimming through my roll a deck of favorite movie scenes where New York was just a sofa length away.  That day, we had visited the Metropolitan Museum of Art, Beleveder Castle, St.Patrick’s Cathedral, Trump Tower,  42nd Street Theatres, Time Square, FAO Schwartz toy store, Rockefeller Center, and rows and rows of retail store display windows. Our evening couldn’t have been complete without at least 2 bags of roasted peanuts off the street. We had a full first day!

From tunnel entrance to street exits - Yester did great!  Our friends had commented that even their 6-year-old wouldn’t have done as well as Yester was doing.  We took a break from the city by viewing Lady Liberty from New Jersey.  The locals say she’s easier to gawk at from across the Hudson River – they were right.  She wasn’t as large as I thought she’d be but sitting at the base of the Manhattan skyline doesn’t really do her justice.  Taking pictures from the docks of the Port Authority and old shipping docks was teasing me enough to want to get back into the city.  Towards the end of the afternoon on our second day, Yester was wanting to stand on the subway instead of relaxing in his stroller.  Boy did we put some miles on that plastic stroller with all of the walking we were doing.  New York certainly doesn’t have a shortage of stairs or walking.  On the subway, Yester would warn us, “Our stop is next!”  He was becoming a real New Yorker. 

The subway we were on that day ended in a place that any of us had been to since before 9/11 – The World Trade Center.  Sunlight shined through the tunnel and into the windows of our subway.  A sight you would have never experienced 7 years ago.  We walked up the stairs of the newly rebuilt ground zero.  When we got to the top we turned around to view the building debris and construction site of what was the Twin Towers.  Chain link fences, stacks of metal beams, and piles of rubble at the base of their tractors were spread over what seemed to be three blocks of street.  You can’t imagine how massive these buildings were until you stand across the street and look at the scale and length of the area they covered. 

We walked across to the other side of the street where we checked in for our tour of Ground Zero and the World Trade Center.  We wanted to hear the story of survivors first hand of what we were watching on our television sets that day.  We also wanted to hear their opinions and facts about the recovery right now.  Our tour guides painted a gross picture of the day’s events but explained it with such pride and sorrow.  We were honored to have been in their presence and so grateful of their courage then and now.

Our trip to the city ended with a huge shopping spree of souvenirs for everyone back home and as many last minute pictures my digital camera’s memory chip would hold.  One last look at the bright red and yellow lights coming from the top of the Empire State Building was all I needed to declare my trip to New York over.  We had a fantastic and memorable time that made a huge impression on Yester, our memories, and our hearts.

Keep Moving Forward

In celebration of Disney’s newest movie, Meet the Robinson’s, I thought I’d dedicate this post to Yester’s new favorite movie and what I think to be the pivotal phrase for our current situation. 

In the last week or so, I’ve noticed Yester putting together some fantastic phrases, not to mention, his ability to express his opinions about a particular situation.  Case in point, “Mom, I don’t like school any more.  Miss Jessica makes me angry.  I want to hit her, I don’t like her anymore.”  Besides the obvious behavioral concerns and wanting to understand what about school and Miss Jessica he doesnt’ like, I wonder how much of that phrase alone places him on the scale of still being behind in Expressive Language? 

How is it my son can put together a phrase like that and still not be able to answer “why” questions.  “Yester? Why do you take a bath?”  My son should be able to tell me, “because I’m dirty.”  Perhaps, I’m misconstruing Expressive Language with Cognition in understanding what’s being asked.  Some of his therapist have expressed that “Why” questions are advanced for a four-year-old and that this doesn’t usually come into play until the later part of age 4.  I have friends with children Yester’s age and they answer “why” questions on a daily basis.  Now, some of them struggle with their time frame of reference. Like, yesterday could really mean 2 weeks ago but, they’re answering none the less.

“Keeping Moving Forward” the new Disney movie announces.  I want to but, I’m still hung up on feeling like a year behind one day and totally caught up the next.  Perhaps, I’m being reminded of the struggle that is Autism; the uncertainty that comes with flourishing in one area and still progressing in another.  My hope was for Yester to be totally caught up by Kindergarten, I wonder how far away we are from that happening?  Keep moving forward makes me believe that we may have to hold Yester back one year from starting Kindergarten just to move him forward in his “keeping up” with his peers.   

I’ll have the usual… 10 boxes and a pack of tape, please.

I don’t know if there is a record to break or award to be given for the most moves in a 2 year period but, if there were, I think I deserve it!  September was full of packing up boxes, yet again, and moving to a new place.  This has been twice in a 2 year period where my landlord has decided to sell the property they’re renting to me.  Luckily, we were able to find an apartment, where we can stay as long as we like, and in the same school district where Yester’s services and school placement wouldn’t have to change.  The move went surprisingly well and we ALL adjusted quickly.  Yester was actually excited to move to the “New House”.  Probably because that’s where all the toys went.  My neighbors???  Huh…. 4 totally hot firemen!! I couldn’t have asked for a better place.  I think Tod’s words were, “Whoa, ok….take it easy!”  We laughed a lot about it the first 2 days we were there.

So now, the next move is projected for 6 months from now.  I’m tellin you…….a moving award is in order!  We leave for New York in 24 days and when we get back, we’ll know for sure if we’ll be making New York our final destination.  We’re excited about going on a much needed vacation and our first as a family. Yester thinks he’s going to outer space.  I think I’ll let him continue to think that if it means smooth flying for all of us.  A lay over in Michigan is in order and naturally I thought of Stephanie and Kristin.  One day, our paths will cross ladies.  There’s way too many of these close call visits.

Life is also moving…..Moving right along.  It’ll be almost a year since I lost my best friend to her own stupidity and that of her manipulative boyfriend and that has me thinking a lot about her lately.  I’m finally working in my career field and using my degree.  I love my job and everything about it.  It has now become the MAJOR dissapointment factor in leaving for New York next year.  But, one step at a time.  Yester is moving right along himself in public pre-school!  Full sentences and conversations! He’s a different kid and I couldn’t be happier about his progress.  I think his greatest strengths have become his ability to successfully initiate and communicate a request so elliquently.  (Grabs my chin to look at him) “Mom, I have an idea. Come on.  Let’s go. Follow Me.”    His imagination in play.  (pointing his Harry Potter wand at you) “Swish and Flick!  You’re frozen!  Look Mom, I froze daddy!”  And I’d have to say, Yester’s understanding of consequences.  (A conversation between Todd and I) “Todd, that is so stupid! Why would I pay that bill first!”  (Now Yester who overheard us), “Uh-oh mom, what did you say that word for? Time out?!”

Yeah, things are moving right along…….LITERALLY!!

First Day of School….Here We Come!

  

I remember when Yester was first diagnosed.  I wondered, what kind of school placement I’d see him in.  Would he be in a special day class?  Was he destin to always be with lower functioning Autistic children?  Towards the end of his last school placement I became more and more concerned.  The thought of no summer school placement scared the hell out of me!  I will absolutely be ready for next years IEP on summer school placement. We walked into a bright and lively classroom but still full of students Yester had never met.  He had left all of his other friends behind when he moved on.  He noticed the alphabet carpet right away and chose the letter “C” to sit on.  As each kid came in he waited with anticipation to see which letter they were going to sit on.  He made sure he yelled out to all the other kids.  “Look mom, she sat on letter F.”  I am truly convinced that I might be witnessing some form of hyperlexia.  We’ve shown Yester the alphabet but, we’ve never shown him how to draw it or build them.  I thought you readers might enjoy a picture of what I’m talking about up top.All the kids filtered in and the teacher began to go around the circle and ask the kids their names.  She got to Yester, “Hello, what’s your name?”  With conviction and as we had practiced in our ABA therapy many times,  “My name is Yester.”  I stood back, grinning, with the bigger side of my smile on the inside.  I was so proud of how far we’ve come  since December of 2005.  She gave Yester a name tag and pinned it to his shirt.  He looked down at it and said, “Awesome!”  All the other parents laughed and looked at him with that, “Ahhh…he’s so cute!”

Transitioning was difficult the first day….to be expected.  A little bit of stimmy behavior had been reported….also to be expected.  Overall, I think Yester had a great first day.  He even helped the teacher finish the story about the “Hungry Catapillar”.  His teacher has already started joking with him saying,  “Yester are you ready for kindergarten?  Do I need to walk you over there right now?  You already know all this stuff!”  I could be concerned about the curriculum, knowing Yester has already spent a year in pre-K vs. the kids in his class now who most likely, have never been in pre-K but, I’m not.  I love that the curriculm will be an alternative focus at best.

 Tod and I have had many discussions about Yester’s academic skills; something we’re not worried about.  However, the social skills are this years educational focus.  Social thinking and guessing, oberservation, eye contact, and reading facial ques.  Sequencing, relationship categories, and moving into more thoughtful concepts.  All of these things will give Yester the social building blocks he needs to deal with these typical children.  The other special needs children included a child with some sort of Down Syndrome or Fragile X and a child with a helmet.  The rest were mixed into the group and I couldn’t have told you who they were.  It’s a great placement and really great step forward towards mainstreaming.

I will FOREVER preach that Yester is my “POSTER CHILD” for early intervention! 

Sensory Input Gone Wild

In an ABA session last week, Yester’s case manager calls me to tell me about an innapropriate incident during his session. First, let me start by explaining that Yester enjoy’s squeezing your skinny.  You know, those cute little fat rolls under our rib cages or that lucious extra swaying skin under your arm.  Somtimes, it’s that vuluptious amount of skin where your 16 year old body used to have thighs.  Yester’s teacher made an executive decision that this was our “skinny” not our fat!The sensation of squeezing or his skin on your skin is soothing and comforting to him.  Well, quite frankly….he enjoys it.  Mostly, these squishy sessions are reserved for the females only. Yester’s newest tutor to our team, Amber, is a female.  Very different from the two male tutors he currently has.  He liked her immediately!So, that brings us to last weeks incident.  Yester told his “new” tutor that he wanted to work for squishy and his case manager, unfamiliar with how often he’s been seeking out this behavior, allowed him to work for “squishy”.  BIG MISTAKE!!

The phone call I received placed her on the other end of what was a very concerned tone, as she explained what happened. ”Yester had worked for “squishy” and then he went from squeezing to thrusting his hips onto Amber’s leg.”  Like one of those little, yip yip, annoying chihuahua’s dogs. 

I was mortified and embarassed to say the least.  She went on to say that my three-year-old son had a small irrection and that he had “pee’d” his pants after she sternly said, “No, Yester.  I don’t like that!”  Now, before I lose it, a million thoughts entered my mind and questions?

Ohhhhhhhhhh………… the questions I had!! 

Concerned? to say the least! 

Frightened? You bet your Ass! 

Confused?  Like no other.

She assured me that parts of what happened were completely normal.  I told her, “Sure, I’ve seen the morning wood fairy work her magic on my boy but, seek this stimulus out?  I don’t believe that for one moment.” 

I felt for a moment that maybe Tod and I were to blame.  Had he seen mommy and daddy doing the horizontal mambo and we didn’t notice?  I don’t think so.  Everytime I’ve been up late watching HBO, he’s been in bed.  Right?  I’m pretty confident on the answer’s to these questions.

I truly had no idea.  Of course, the worst came to mind too.  I had to think.  “No, I’ve never left him with anyone un supervised that was just him and another person alone.”  So, what gives.  Perhaps, the sensory seeking has just reached an all time high.  I don’t think he realizes his behavior is innappropriate.  All he knows, is he likes the way it feels.

So the concensus was, teaching him that “squishy” behavior is innappropriate and when someone says, “stop that” he needs to respond in a socially appropriate manner. If this behavior continues, his ABA team will have to start taking data on it.  Yester’s case manager seemed to think that Yester might be acting out because of how much time I’ve been spending away from home (I recently signed on to do some consulting jobs on the side).   Personally, I think it’s sesory input gone wild!  My solution:  I bought a ball made out of synthetic material that feels like Lycra, filled with some sort of small granules that feels like you’re squishing someone’s skin.  My thought, was if he likes the input, give him something that is more appropriate to “squish” and give him parameters and rules as to when and where that behavior is more appropriate.

I really hope I’m doing the right things and asking the right questions.

Leaving Behind 4,702 Hits!

I have to say that leaving behind those stats, after only having them for a short time really bums me out.  Luckily, i know only the great survive.  So here I am, trucking along and feeling fabulous. 

Yester’s time away from school really hasn’t been as horrible as I thought it would be.  I was really feeling guilty for not having him in some sort of school program.  But like I always say, “Everything happens for a reason.”.   I was $200 away from placing Yester in a private pre-school until our district called and said they were recommending Yester participate in their summer maintenance program.  3 hours a day, 4 days a week, 1:1 time with a speech pathologist, behavioral therapist, and occupational therapist.  On top of that, the district has sent approval for 8 sessions of make-up time of OT for the entire summer.

YIPPEE!  This was defitnely good news.

GOD! This Feels Good!!

Do you have any idea how long I’ve needed to vent?  I feel like a 40-year-old virgin!  Let’s start briefly with a couple of answers to some of your questions.

 Have I seen this blog before?

Probably yes.   If you’re a blogger.  The names have been changed to protect the innocent but, I am still the sassy and straight forward soul I’ve always been and soooooo grateful to wordpress for their amazing ability to Import and Export blogs from ALL places.  So forgive me for the puns in advance and I hope you enjoy trying to figure out the name changes.

Why the move?

First of all, I had spent months feeling like there were people reading my blog that quite frankly, just don’t deserve to know how we’re doing.  Like a soap opera, the drama of my (now) ex-best friend who used to be Yester’s Godmother of all things, was killed off!  I don’t mean really dead, I mean, us writers wroter her right out of our lives!  We’ll call it “death by a loser boyfriend.”

Some have said I was hasty.  Others have said, we’re all better off without her.  I say, you’d better put your money where your mouth is.  If you say you have character and that you stand for something then, you had better mean it! 

 For me, it was the mere fact that my best friend was dating and sleeping with a married man.  I’m sorry, that’s not fair.  A soon to be divorced man with a three year old child.  She was, as any BAD soap opera, the other woman.  That’s not judgement, that’s a fact.  To make matters worse, after all of our discretion and very blunt disregard for her choice in a mate she got her self pregnant, moved in to his home, had an abortion, lied to me and her family about it, and proclaims to love him, assures us he is the man of her dreams, and that she will marry and have children with him.

That’s odd….didn’t she just pregnant with HIS child? Oh wait, he’s not divorced yet so she and the baby can’t exist. Got it….Now, I’m following along.

 Can you hear the sarcasm in my tone?  You should be able to….I am laying it on pretty thick!

Tod and I agreed.  No friend of ours lies, cheats, and is reckless with their life if they expect to remain friends with us and a role-model for our son.  I may sound as if, I’m angry, bitter, and upset but believe me when I tell you this was NO easy task.  Walking away from my best friend was the hardest thing I’ve ever had to do.  She broke my heart with her lies, deceit, and betrayal but more importantly apart of me died when I realized she was never my friend.  I had to accept that I couldn’t count on her anymore and that she was really never the friend I thought she was.

I’ve come to believe that “most people ignore good advice to do emotional things.”  And with that, I accepted that she wasn’t going to fight for our friendship.  Everyday I live with the guilt of how I could’ve dealt with the situation differently or the fact that I burned a bridge between us and really left her no road back.  However, I’m haunted by the uncertainty of not knowing that it would have made any difference.

Learning that me and my family weren’t worth fighting for stings like no wound I’ve ever felt before.  Her stupidity and choice to be with someone who we believed should have treated her better has become our own stupidity.

After six months of grieving her as if she was dead, I’ve been making great attempts to move forward with my life.  That included any ideas or thoughts I had of her.  This also meant I needed piece of mind knowing she had no idea what was going on with Yester.  My hurt feelings and bruised ego believed she didn’t deserve to know anything about him and I still stand by that decision.

What should we expect now?

Expect a no holds bar attitude.  For months my blog has been vague at best.  I try not to get wrapped up in the details and I’ve made plans to put away the “whoa’s me” card.  No one wants to hear the rantings of an insecure and feel sorry for me cry for help.  Just say it! I need help or I need advice!  Don’t hide behind feelings….they have no merrit.  They’re unpredictable and they make us react in an emotional way instead of a level headed, responsible, and character driven way.

I’m relieved and happy to move forward!! Ciao!