Second Training Session

In we went, to our second +EIBI training session armed with our vision, mission and goals.  I felt so encouraged, we were going to do great in this course.  I knew it!  A positive attitude means everything, and I was headed into the lion's den without armor, or anything.  I had no idea what was going to come our way, but I had the right approach.  I was sure of it...I was desperate!

The first thing we learned, was that we were not going to get a grade on our homework assignment.  We weren't even going to get to read to the class what our EIBI business statements were!  I am so glad I didn't create the power point presentation I was thinking of for this session!  I could feel my disappointment coming on.  I was confident about our business plan, or at least the only part that had been developed to date, and I wanted to compare.  And I wouldn't get a chance to...But I had to remain positive, and focused!

We then were told that in order to achieve a desired behavior - in anything that Patrick would do - we needed to create a positive reward system.  Which meant we need to remove anything that he loved from his life for the next two weeks!  AHHHHHH, not sure how this is going to work.  That meant hiding his main lovie (stuffed animal +Gund Lion blanket (this is the BEST thing.  Think of a flat pillow pet with a stuffed animal head, and the softest most snugglie material and you've got it!  - by the way, if you EVER find one of these, please email me immediately.  Our lion is getting very well loved, and we have no replacement for it, and it goes with him everywhere!)

We had to hide his Teletubbies dolls, all of his DVD's and Video's (no +Barney, +Teletubbies, +Dora), up in the closet went his +Fisher Price Bus, all of the electronic +Leap Frog Toys, pretty much everything Patrick has ever had an interest in, or played with would need to be put away.  I remember looking at Josh and thinking this could not happen!  How would/could we do this? Patrick was going to freak out!  He loved watching TV!  He would jump and watch for hours.  He would constantly recite the scripts from the videos he watched, he was a walking archive of +Dora stories, and +Teletubbie scripts, what would he do?  What would we do???

Well Dr. Kim had loads of things for us to begin doing with Patrick.  She asked us to begin with +Floortime play (+Dr. Greenspan's book - +Floortime, is highly recommended).  We would begin to teach Patrick how to play - the "normal/typical" way.  We would work on appropriate use of +Little People, and how to play with matchbox cars.  The list of possibilities was endless, and only limited to our creative minds.  I knew I couldn't do this.  I needed a list, some idea starters, how do you teach a child to play?  My sense of disappointment was growing and a close second was my sense of frustration.  I was beginning to understand, this program was not a cookie cutter program with clearly defined steps we could follow.  We were going to have to work, and work hard!  How could I/we take this on?  How could we not?!

So, of course, my eyes welled up, and I bowed my head and tried to calm down.  Well, this was simply not a good strategy.  Josh was getting frustrated with me, and Dr. Kim was moving on to the next area.  CRUD!  I really needed to pull it together!  But I was completely overwhelmed - maybe Patrick got his +Autism from me???

Somehow I managed to take a deep breath, and began to refocus on the class.  Dr. Kim was talking about neutral expressions.  And how we always needed to walk around with our neutral expression at the ready.  Neutral expression?!?!?  How could I especially, always have a neutral expression?  I wore my emotions like my favorite pair of boots, and still do!  How would I be able to maintain a neutral expression, void of emotions.  AND to add icing to this rotten cake, I had to be able to maintain a neutral tone!

My sense of failure was mounting exponentially!  There was absolutely no way would I be able to have a neutral expression and TONE!  I can't even hear my tone (and yes, this is one of my biggest faults!)  How could this emotional, tone deaf mother be able to control her emotions and work with her son to achieve those business goals attain the Mission?  I have no idea!  And to be honest, I still have absolutely no idea!  I fail miserably numerous times a day.  But that's where Patience comes into play.  If there is one thing, and there are many, but the one thing I have learned in working with Patrick is patience.  (but only with him;-)).

Neutral means you can't laugh when they do that funny thing that is so cute, but you know they shouldn't be doing it.  Neutral means when they are trowing a massive tantrum in the middle of +Target and everyone is looking at you like you just beat him over the head with a frying pan, and all you really want to do is haul his fanny up out of the shopping cart and get him to the car! (yep, been there, done that!)  Neutral, with Patrick, is not allowing him to have even the slightest indication (we are talking the size of molecules here) that he has done something bad, or that angers, disappoints, frustrates, hurts, etc.  Now, lets remember he is between the ages of three and four...which means at least in my household, he was headed for the Terrible Twos a year or two late.

My frustration was quickly replaced with a very lengthy list of Hows
How do we discipline?
How do we celebrate?
How do we correct?
How do we teach?
How do we play?
How do we parent?
How do we not be inconsistent with our other Kids?................................................................
and the list goes on and on.

Now, I'll use my Dad's favorite expression, "Don't feel like the Lone Ranger," but at this point in the training, we really did.  We had no idea how to begin and I knew Josh was relying on me to get things under control and clarified.

This class was also where we learned how to teach skills, how to assess and establish learning goals based on the "skills" Dr. Kim and I would determine he needed to learn.  We learned how to do an initial trail, and how to break skills down into easily mastered sections which would ultimately roll up into one mastered skill.  Breaking things down would also be another challenge, that I would eventually over come, but it took a lot of practice!!  And Patience.

Early on we had:  how to play, feature/function and class, sorting, matching, potty training (and we did this in 48 hours!  no kidding!).  I'll review his list of early programs and try to provide a list of necessary resources for each one.  At least the resources we used.

We also reviewed a list of positive reward items for Patrick.  This began with food for us, since we were going to remove all of his favorite toys in the beginning, and then eventually we would be allowed to bring them back in a measured approach.  For us, this was a great way to remove the +Teletubbies from our lives (but I am also sad that Peter didn't get to experience the Tubbies like our other three boys did!  And here come the tears...Looking back, we would never know the impact of our approach on our other kids.  Would Peter be severely hindered if he didn't get to watch +Teletubbies?  I feel like the tootsie roll commercial - How many licks does it take to get to the center of a +Tootsie Roll +Tootsie Pop...The world may never know (as a side bar, Patrick just completed a science experiment in school last week - he is in the 4th grade now - and he says it takes 400 licks - check it out)

Positive Reward items for us in the beginning were:
Small snack pack bags of +Oreo cookies (he would receive a half of one of the small cookies)
+Fruit Loops(R) Cereal (he would receive 2 loops)
Pretzel knots - small - (he would receive one knot)
Bubbles
Echo Microphone
Pink Lips Kazoos
These were his positive reinforcements.  We would use these as his motivation to do good work.  After he did good work, he would get to have his reward.  We however learned that he needed to select his reward item before doing his work, because Patrick loved to change his mind, and it would ultimately lead to a power struggle and tantrum.

Next post, I'll try to explain how we set up his therapy room, and my 911 phone call.  Can't wait to see you at the Corner of Hope and Love!

Beginning Resource Ideas

First of all, THANK YOU, than you, thank you to all of my family and friends who have referred the blog to your friends and family.  I am overwhelmed by the positive feedback and response.  I never thought people would be interested in what I had to say or what we were going through.  Honestly, is our family's desire to help those living with +Autism and those loving people on the Spectrum in any way we can.  There is HOPE, you just have to find it.  So if you have some ideas and thoughts, please forward your comments to me, I'll give you the shout out credit!

I thought I would take a quick break from the details and offer a few quick tips for those who are wracking their brains or looking for a fresh approach to help their kiddos!  We ended up setting up a therapy room for Patrick and his tutors to work in.  This way he was able to have a more concentrated learning experience, and the rest of the family could go on with  "daily life" as much as we could;-)  Here is a start, I'll work these kinds of posts in through out the next several weeks ahead.  Why?  Because, I was completely overwhelmed when we began the EIBI program.  I really didn't know when or where to start.  I kept asking Dr. Kim what to do or where to go buy this stuff.  Didn't someone make an +EIBI Resource kit for families like ours?  What  great idea!  I'm working on it...

Here are a few simple/logical approaches to begin thinking about if you are waiting for your appointment, of if you are in the beginning states of an +EIBI or +ABA type program.  Families, this is also a wonderful way to support your loved ones.  This would have been a wonderful gift for us.  But frankly, I was not smart enough to think to even ask for it, so now you can benefit from my experience.  Pass it on!

Local Dollar Store - I have shopped them all and they are such a wonderful and inexpensive resource.  I would buy my plastic animals here - sea animals, jungle animals, dogs, insects, etc. Another great find here are everyday items - combs, tooth brushes, personal care items, party toys are also great for those personal rewards (play versus eating rewards)  I bought the echo microphones, light and sounds whirling toy, shooting tops, etc at these stores.  You can buy multiple so your tutors can play too!  I purchased my sorting baskets here too.  Also a great place to stock up on hand sanitizer and bleach wipes!

Flash Cards - you can make your own!  This is where digital cameras are brilliant!  I would use label templates like +Avery Name Badge Template, 8 per sheet is a good place to start.  I created so many flash cards - and once I get my website going, I will post all of the card sets I created  so you can download and use for FREE!  I am big on FREE!  So I'm happy to share.  Stay tuned, I'm working on my website now and hope to begin to have some things up for you shortly.  The +Avery website has a wonderful variety of templates to adapt to your hearts desire!

Free Resources - Please respect all copy right laws.  These are some great resources for feature function and class, sorting, I like to use +Eric Carle books, I've used them for colors, numbers, beginning reading - word matching, animals, foods, etc.

Clip Art & Photo Image Resources FREE
+Office:  http://office.microsoft.com/en-us/images/

Animal Clip Art:
+Open Clip Art:  http://openclipart.org/tags/animal


Sensory Bean Box & Eric Carle Books
Here is a great idea that Patrick loved.  It combined multiple learning activities and gave him some sensory input at the same time.  I really love +Eric Carle books.  They are simply beautiful!  You can use any board book, but I loved these best, and so did Patrick!  This activity helps you mix up some of the learning activities to keep them fresh and fun.  Patrick had about 10 books that we would mix it up within each of his tutoring sessions - to eliminate   memorization and to keep it fresh and fun for him.  I've kept our +Eric Carle library and I can't wait to use it with my grandchildren!

Possible uses:

1. Sensory - ran hands through the beans
2. Matching - colors, animals, fruits, numbers, etc - depending on the book

Materials needed:

1. Small Plastic Shoe Box with Tight Fitting Lid
2. One to Two Bags of Dried Beans - I used Kidney
3. Board Books - I loved Eric Carle's books.  The stories, and illustrations are amazing.  The Very Hungry Caterpillar was a great one to teach fruits!  Loads of repetition!
4. Velcro dots (both sides hooks and loops)
5. Clip Art images that match the book photos/illustrations - Here is a link to a downloadable PDF of the illustrations in his book +The Very Hungry Caterpillar http://www.eric-carle.com/ColoringSheet.jpg
6. Clip Art images of Brown Bear Animals can be found on his website here:  http://www.eric-carle.com/BrownBear-colors.pdf;  http://www.eric-carle.com/BabyBear-friends.pdf
7. I created small 1-1/2" squares out of the images, colors, etc. laminated the squares, cut them out and then would attach to the back a hook Velcro dot, and then where I wanted the square to be placed in the book, I would attach a loop Velcro dot.
8. After the books are complete with all of your matches, remove the squares and bury them in the bean box.  Mix them all up, and then have your child find the square and then match and attach the squares to their matching animal, fruit, color, number, etc.

Will you meet me at the Corner of Hope and Love tomorrow?  I'll share about our second training meeting, how we began to recruit our tutors.

Lessons to learn, and miles to go

Please let me begin with a huge, heartfelt Thank You for the shares, comments, encouragement, likes and views!  I really appreciate it, and I hope this helps you or someone who reads it.  We've spent the past eight years of our lives, and will spend the remaining years of our lives, living, and loving our child, who happens to have Autism.

My last post was a little bleak, and from how we remember it, it was exactly how we felt.  I don't even remember how we got home from the hospital, or really what happened over the next few days.  All I know is, we were lost...

I don't remember telling our parents, I don't remember sitting for long periods and crying (I know, you're surprised...)  I don't remember Josh being particularly quiet or depressed, but I do remember that we were different.  And it seems like such a long time ago, but for all that I don't remember, I do remember looking at my five men, my Josh, Jack, Matthew, Patrick and Peter, and feeling this overwhelming sense of Love, Gratitude, and Hope.  I remember sitting in bed a few nights after the diagnosis and talking with Josh - this, by the way, is the only time where Josh and I catch up.  It can be for five minutes or, if I can stay awake, for an hour, but this is the time where we take for us.  Pathetic, I know, but we've been sharing like this for, well, forever.

I looked at Josh and said, "what are we going to do?"  and my husband, the love of my life, looked at me with tears in his eyes and said, "We are going to raise our family, because we are blessed.  God gave us these children, he could have given any of them to another family, but he gave them to us.  Patrick could be another's, but he is ours.  We will figure it out, we will find a way."

Have I told you how much I Love Josh?

Well, from that moment forward, we began to form our action plan.  And we lived, we loved and we laughed and yes, we cried.  It was not going to be easy, but nothing worth doing, ever is.

We had so many unanswered questions - how do we explain this to our kids, do we?  We knew we didn't want their lives taken away from them or over shadowed by their brother's needs.  So that went to the top of the list.  We are a "normal" family (I know, I said the n-word, and those of you who have heard me speak will feed back my own dynamite...all together now, "there is no normal" we are all different, we are all special).  This is one of my many mantras in life.  The sooner you embrace your special-ness, the happier you will be, I PROMISE!

Well, when Monday rolled around, we went to school, work, therapy, and I shared Patrick's new diagnosis with my dynamic duo, and together, we all began to form a plan.  I was off and running.  We were going to do something, and I knew it was going to be GREAT!  I was introduced to this amazing lady named Dr. Brown at the Kelly O'Leary Center for Autism, and she gave me a long list of contacts and an even better group of power points.  Now this was a language I could understand!   HA!  Manila envelope...PLEASE!

Dr. Brown explained that the hospital was starting a new program called Early Intensive Behavior Intervention (EIBI), and gave me the name of the physician to contact.  So I called her, Dr. Kimberly Kroeger-Geoppinger, PsyD.  I left her this pathetic voice mail, basically begging her to take Patrick into her program.  He was almost four and I was told the cut off age for enrollment was three.  I was, in a word, DESPERATE!

Everything I had read on Google said time was critical, the earlier you begin interventions, the greater the potential the child would live a "normal," or as I soon learned, "typical" life.  Great, now, not only am I feeling desperate, but we will be playing beat the clock with Patrick's development.......AND, not to mention that we were still living with velcro and picture schedules, and I was learning sign language to help Patrick to visually process what we were verbally saying to him. (a quick side bar, and this is pretty funny.   As I began to use sign language with Patrick - especially when he would tantrum - Josh and our combined families would look at me funny.  Finally Josh said to me one day, you do know he is not deaf right?  He has Autism.  And as I sat there speechless, wanting to use a few choice four letter words with him, I realized that I had left him out of the action plan.  I was gong through the motions with everything else, the other boys, Josh, the house, my job, and I forgot to really explain, and develop the plan with JOSH.  I was in full-blown MISSION Mode.  I forgot that we had just begun our race...and was sprinting...and we still had the entire marathon ahead of US, not just me, I was not alone in this, not that I ever thought I was, I had Josh, and together, we can do ANYTHING!)

So I sat down with Josh and explained what I had learned to date, and had planned with our therapy team.  That signing helped Patrick understand what I was telling him.  It gave him something to focus on other than my face, and it helped him process my words.  Just like with the picture schedules and paint sticks, these all helped him understand what we were saying, and more importantly, what we meant.

I have had this same conversation with both of our Mothers, other family members and friends.  Autism is such a confusing disorder, and people really don't understand, or really how to react.  We have found, most of the time, that Patrick's Autism is the Big Harry Audacious White Elephant in the room.  People just don't know what to say, or how to act, so they just avoid it.  Again, I go back to the thing my parent's always told me, "You can tell us ANYTHING!  No matter what!"  That is really how we feel about our lives and about our journey with Patrick's Autism.  You can ask us ANYTHING!  No Matter What!  All that we ask, is that you don't judge or criticize until you've spent a week walking in our shoes, and living our lives.

Patience is a good lesson, and one we continually receive a refresher course in.  With Patrick, with our other kiddos, family and friends.  Unless you've lived it, daily like we have for 10 years, it really is hard to understand, or to comprehend.  The pressure, the panic, the sense of hopelessness.  It is all very, very hard.  But nothing good in life is ever easy, and let me tell you, how good it is!  The joy when I come home from work every day, and Patrick and his brothers are there, waiting at the garage door to ask me how my day was, and give me a good squeeze, or when Patrick and Peter climb in bed between Josh and I for a quick family snuggle.

Fortified with God, Josh and a good healthy dose of Patience, and humor we begin to pray that we hear back from the Dr. and Patrick can get into this program.  Many, many more miles, tears, tissues and love to come from the intersection of Hope and Love.