This is us...Be who you are...

Sorry to have had such a lapse in posts.  I have been working through where to take this Blog and the value of our family's experiences...

So I thought I would take the time to encourage you to be who you are.  Just because you have a child with Autism, doesn't mean you need to change the way your family works.  This is one of the major things Josh and I have been in lock step about, with one exception, which I will share a little bit later in this post.

You can't change the fact that Autism has entered into your life, so why not embrace it?  We feel it has been a real blessing to our family.  We have grown so much in our love for each other, and our boys have grown and learned so much!  Valuable lessons that are difficult to teach!  And even better examples to other individuals who simply have no idea.

Our son Matthew (who was de-throned as the baby of the family when Patrick was born) has an incredible reaction to the word retarded.  This is how he sees Patrick's disorder, and feels the word retarded is almost the worst word in the english language.  He will snap your head off - and has.  I have watched it, and have had family witness it too.  It is a wonderful thing to hear your child defend someone who is less fortunate.  I don't want to use the word Proud, but it definitely warms your heart, and my mom peacock feathers just spread out wide and beautiful when I have experienced it!  It is very interesting to see how dated the majority of the American population is in their thoughts regarding Autism and development delay disorders.  So many people put all of this in a bucket called "Retarded."  This is one of the worst of the bad words in our household.  Our kids are not "retarded,"  they have experienced a developmental delay.  Some more severe than others, but ALL are God's creation, His precious blessings, and gifts of grace.  I pray we continue to encourage each other to stay strong and work to educate and change the perception.  Our kids have possibilities, opportunities and capabilities.  (now you can see why Matthew reacts so strongly to this word;-))

Our oldest son Jack has spoken several times to his class mates and his school about Autism and having a brother with Autism.  I have so many nice letters and emails from our friends, parents of kids and teachers who tell me what a nice job he does.  Jack is many things, but my favorite is Big Brother.  Always looking out for his younger siblings, has the patience of Job with his two youngest brothers and is a rock star in their eyes!

And the youngest Peter, is probably Patrick's best friend and best gift.  Peter doesn't let Patrick get away with much, and what a blessing that is!  It is also comforting to know we have three sons who will always be there for Patrick to love, care and watch out for him when Josh and I no longer can...

So why tell you all of this now...because we really are a very normal family, or typical as the PC way to state it these days.  Yes, we have a child on the Spectrum, who has Autism (he is not AUTISTIC! this is another description that drives me CRAZY!  Autistic is not a characterization like blonde, fat, or white.  It is a disorder, so please change the way you characterize this children, and others will follow you!)  We don't run, or hide the fact that we are a family with a child on the spectrum.  And frankly don't understand why people would want to hide it.  Patrick's condition has nothing to do with Josh or I.  We didn't cause it...but we can help him cope and possibly get better.

And he has!  We didn't hide from the diagnosis, as hard as it was.  We embraced it.  And let people know about it.  Josh and I made the decision almost one month into this stage of our lives that we would not hide it from anyone...And this was a battle.  Josh didn't want us to effect the lives of our other three kiddos.  I felt like why shouldn't they know.  They will obviously see the tutors going in and out of our house on a daily basis.  They clearly know something is different with Patrick, so why not teach them about it so they can lead and teach others?  This took a lot of convincing on my part, and finally Josh said okay.  And guess what...our world didn't come to an end!  We didn't lose friends, in fact we gained so many!

What is even more strange is two of my friends from childhood and one of my friends from college all have kids on the spectrum!  Now, if we all can't get together and share, cry, laugh and support each other, then I don't know who should!

I know I am rambling a bit, hopefully you can see past all of it to receive the following message...Embrace who your family is today, tomorrow and forever!  Because this is who the Carroll's are, and I wouldn't do a single thing to change it (okay, maybe lose a few pounds, but that's it).

So to share another quick story, the Christmas after we had our diagnosis, I wanted to send out our family Christmas card.  I bought these horrible red snowflake sweaters for all of us and marched us down to the local photography studio to get the picture taken.  Well, here we are...shell shocked and holding it together with staples and tooth picks.  Don't we look like the happy family...So when things look bad, and you need a little pick me up, just think of the Carroll Family Christmas card and smile.  It could be worse, you could be wearing matching red snowflake sweaters ;-)  And yes, Josh won the card battle, but this photo still hangs on our wall!  A reminder that with a little Hope, a dash Faith, and a whole lot of LOVE, we can get through anything...

Come and visit us.  We're all waiting at the corner of Hope and Love.  See you soon!

Treatments

I have received many comments from friends and people who I have never met who have thanked me for beginning this blog.  Please pass the thanks onto God.  He was the one who planted the idea eight years ago, and has wacked me over the head several times since until I finally found the courage to trust in Him and do it!  I hope what I am saying helps you in some way.  Even if you laugh, or cry in relief because you may feel the same, or if I have upset you.  It is a start of a greater understanding of this condition called Autism which I have, at times, in a very weak moment, have called a curse.

I've been doing more research lately to better understand the available resources and tools that are now on the market since the introduction of the iPad (which by the way is AWESOME for our kiddos with Autism).  And I thought I should at least share our family's thoughts on treatments.

If you have been reading my posts, you know that we selected a route of treatment via therapy called Early Intense Behavior Intervention (EIBI)  it is a modified version of Applied Behavior Analysis or better known as ABA.  What I wanted to explain is if you are a parent or a parent of a parent of or love someone with Autism you need to know and understand there is no miracle tablet, solution or shot (and I work in the pharmaceutical industry) that will cure your child.  We will live with, and our children will live with Autism for the remainder of their lives.

Does this mean we don't have options, NO!  We do!  We have options to help them learn to communicate, learn to cope, learn to make friends, learn to discern when someone is lying, learn humor, the opportunity to learn everything our typical kiddos learn.  It just takes some time, and understanding, and patience, and a well oiled machine of parents, teachers, brothers, sisters, grandparents, aunts, uncles, cousins and friends to work together.  So, here is what I have to say, please be vocal about whatever treatment option you and your family decide to take.  But do your research first.  And, more importantly, understand your child's condition first.  He/she may not be as clear cut, they may have other diagnosis.  We are blessed in that our son Patrick is as clear as a diagnosis on the spectrum can be.  He only has PDDNOS.  Persuasive Development Disorder, Not Otherwise Specified.  PDDNOS in itself is a mixed bag simply because Patrick displays strong behaviors prevalent in Autism (stims, loves anything that spins, perservation, sensory issues, etc.) but he also has a few things that make him unique for Autism - he has a sense of humor and really understand humor and scarcasism.  He is fairly clear cut (if even this is clear cut).  Why do I say this?  Well he doesn't have siliac disease, or any other disorder or syndrome that we have found to date.

Why is this important to understand, because some of the more known therapies are geared towards these other issues, and really have no known/proven "cure" for Autism.  You may notice a difference in your child's behaviors lets say, if you remove all dairy from their diet for a while...but then the behaviors could return.

What I suggest, is you discuss everything with your child's development pediatrician before trying anything.  And by all means, record the data!  Don't remove things from your child in a global fashion.  Gradually remove, or add them back one at a time and record the data.  (what was removed or added, when, and for how long.  How did your child react, did you notice anything different or improved?)  I say this because at one time, we noticed Patrick had temper tantrums.  And I'm not kidding!  I'm talking about full blown throw himself on the floor, kick and scream tantrums!  

Okay a quick side bar...I'll tell you about the Bob Evans incident...This is one for the books!  You all know how much I love Josh, well it happened after mass one Sunday, fairly early in our EIBI treatments.  It became a weekly treat for our family (yep all 6 of us, and sometimes Grandma would join us if she was down for the weekend visiting) to go to Bob Evans for breakfast after mass.  We had 6 people so the hostess always sat us in one of those giant booths.  Well, this particular Sunday, we were seated at a round table...well this was a trigger for Patrick...he, at the time, didn't cope well with changes, and basically had a full blown tantrum right there in the middle of Bob Evans!

He flopped down behind my chair and began to cry, kick and scream.  And I couldn't get up because he was almost under my chair.  So while I am trying to sign and get Patrick's attention, Josh springs up out of his chair to attend to Patrick.  I turn around to check on the other boys since, I assumed, Josh was getting him, and I hear this little old lady sitting at the table next to us say to my husband..."Um, can't you get your child under control...he is really bothering all of us..."  Well before I could even process a quick response, Josh turns and looks at this 80+ year old senior and firmly states..."Our son has Autism...Deal With IT!"  And picks Patrick up and sits him in his chair and sits down next to me.

You know the scene in the Movie Jerry McGuire where Jerry comes back at the end of the movie and enters into the house where all of the divorce support group ladies are dishing, and Jerry says hello and begins to apologize and declare his love?  And she says..."you had me at hello..."  Well if Josh didn't have me before (and we all know he did) He DEFINITELY had me at "Our son has Autism...Deal With IT!"

So know, there are many different tactics, but no solutions at this time.  It is frustrating...we all feel that way at one time or 1,000.  If you feel like this, it is okay!  I understand!  And I hope you find a physician who also understands your desire for the c-word.  Unfortunately, we don't have a miracle cure at this time, but there is always hope.  There are so many different "treatments" out there, and some people swear by them.  What I hope to encourage people is to ask questions, lots of questions before going into the treatment.  Please!  Do your research!!!!

And, if you find yourself in a situation like our Bob Evans situation, I pray you will be polite and have the courage to stand up and let people know.  (they actually make small business card size cards just for these kinds of situations.)  You should never judge a book by its cover, or as I tell my boys, don't judge, because you don't know what it's like to walk in their shoes.

Sorry to have kept you waiting so long!  The next post is just around the corner of Hope and Love.  See you soon!

40 Hours a Week - Reaching Maximum Potential by Age 6

We are two sessions down and at the start of the third.  In between the last session, I was busy trying to find as many resources as possible, which meant extensive SHOPPING!  And no, not for shoes, or cute outfits, but for sorting baskets, +Rubbermaid shelving units, drawers, puzzles, anything that was colored, or bounced, squeaked, had some kind of texture, FLASH CARDS, bubbles, +Play-doh, Markers, +Crayons, Coloring books, anything that could be manipulated - love the wooden toys for this.  the Pizza making kits (the +Melissa and Doug line of wooden toys are my favorites), sandwich making kits, vegetables, fast food, plastic grocery food, I filled up his closet with these kinds of items.  Had them all organized.  It was great, because it was also around back to school time, so I got scissors, colored paperclips, glue sticks, recipe cards/note cards, all at great prices!  I used +Glad storage containers to keep things organized, and plastic zip freezer bags work well too! As I mentioned in previous posts, I hit the dollar store and "kitted" up as many things as I could think of - Feature/Function/Class things.  The party store is a great area to stock up on things like kazoo lips, sunglasses (the larger and the sillier the better for Patrick - in multiples of colors)  all of these things can be used to sort items.  Separate/sort the things the are alike (this is where you can shake it up a bit - start simple - two different colors of the same object - then as they begin to succeed, do different objects of the same color - then do same objects of different colors, and you can see it will go on and on).

So we felt we were ready to take the next step which was to find out how - logistically - we were going to pull off 40+ hours of intensive 1-on-1 training with our son, when both of us work full time at really demanding jobs, plus have three other children (fairly young ages too) and a house and family who wanted to see us, not to mention live our lives and have any time left over for each other - forget laundry or dishes, or toilets (I live with five males...).  Because this is what it was going to take for us, and for the other families in our training group.  40+ hours a week - not including the once a quarter visits to "clinic" for three hours a session three days a quarter.  I was sure there was a magic time turner (you know the one Hermione wears in one of the +Harry Potter Movies) somewhere Dr. Kim was going to tell us about that would allow us to turn back time so we could find these hours in our week... Without which we would not be able to do this, and Patrick would suffer.

See, if you haven't guessed already, I'm a fairly self motivated individual, who loves a great challenge - strategically for my brands and clients, or in life, so God definitely knew what he was doing when he blessed us with Patrick, and connected us with this EIBI/ABA program.  He plopped down a big fat 40-hour goal that I had to achieve - I had to.  Ultimately we are working towards our Vision where Patrick's Autism/PDDNOS would not interfere with his daily life, right, what a BHAG (Big Harry Audacious Goal)!  And that's saying something!  Real Pressure anyone?  Because I was feeling it!

The key to accomplishing the 40+ hours was to hire tutors.  So not only were we parents of a child on the spectrum, but now, we were understanding why we developed the vision, mission and goals, and why it was called a business plan.  However, we were just getting into the planning part.  I was totally overwhelmed!  I had NO idea how I was going to meet the 40+ hour goal, not to mention recruit (had no idea where to start!), security clear, train, let alone afford a staff of tutors to help us with Patrick.  When/Where was this going to take place?  We had some significant obstacles to overcome, and I needed to cry!  And this was more than the simple I'm sad cry, this was a full out, full blown jag!  I felt utterly hopeless, with no road map to guide me home.  How was I going to do this?  Josh had basically checked out at this point.  He was running financial models in his head and had slotted it impossible.  (remember how much I love my husband, but this was the truth, and I also promised you real, truth).  I, however, feeling very overwhelmed, lacking a clearly defined path and how to manual (which by the way would be a GREAT IDEA - just give me a shout out when you create it).  Oh, by the way, don't forget we had basically two years to make a significant impact in Patrick's life (or at least we were lead to believe that.  We know differently now).

So with 40 hours a week, every week, 52 weeks a year 104 weeks in the two years we had to do it in, every minute counted!  AND, I literally  had no idea how to start.  Do you ever feel that way?  The pressure is on, and you need to reach DEEP down inside yourself, and you know it, but you are almost paralyzed with a complete sense of overwhelming that you can't even provide the most simplest solution or answer the most basic of question like - where's the milk?  That was me.  Pathetic, I know, but I was totally in the weeds, completely incapable of seeing the trees, let alone the forest.

So I stopped.  I stopped it all.  I sat back, took a deep breath, and began to road map - or build my brand and obstacle course.  I had my goals clearly outlined, now I needed to define my objectives first, and that started with logistics.  How and where would I find tutors?  - Well, Craig's list was pretty popular at the time, why not use this free service and advertise for positions?  So I did, I began what ended up being almost a quarterly endeavor.  Advertising for tutors.  At one time we had almost 15 different tutors working with Patrick!

Okay, so now that I had some responses to my ads, where should I interview them?  Was this going to be a security risk for my family?  I couldn't interview them at work, and I thought they needed to see the environment they would be working in.  So I interviewed them at our house.  We ended up receiving primarily Psychology majors and graduate students, a few ABA trained tutors as well, and some Child Focus employees who were loyal beyond belief and stuck with us through the tick and thin of it all.

Finger printing & Background checks - YES!  Definitely, DO THEM!  I asked for copies of drivers licences, and had them go to the local police department to be finger printed and have a background check.  If they were going to be working with  my son, and with my other children in the house, they were going to be cleared!  Another possibility is to work with your local Catholic church to have you teams fingerprinted there and go through the Archdiocese program, then request copies of the documentation of course completion and results.  DO NOT HIRE UNTIL THIS IS DONE and YOU HAVE THE RESULTS!  PLEASE!

Wages - this is a difficult question,  how much to pay your tutor?  Should it be based upon experience?  Great question?  One I asked myself.  And where we weighed out on it was no.  They have no experience with our son, and every child on the spectrum is different, so they all started at an hourly rate of $10.00!  YIKES!  Quick math says $400 a week, which means $1,600 a month!  That was more than our house payment!  And this was not the clinical fees. So when I say its a BIG investment, it is BIG, but it is also EXTREMELY worth EVERY penny!

We had help, we didn't have a waiver, but we had help from family who were amazing!  We wouldn't have been able to it without them.  Between Tutor salaries, Clinic bills, we were spending almost $3,000 in cash every month.  That was about half my monthly salary at the time!  And we were living paycheck to paycheck before this, with all four kids in daycare...  But we had made the decision to do it, and we were committed, so we would find it, and cut back as much as possible, wherever possible to make it work.  And God has always provided for us, and he continues to do so!

Training - well, I was just trained, so it was still fresh in my mind, but how to train the trainers?  I was by no means an expert, but it needed to be done.  So I broke down his programs, made copies of all of this course descriptions and we had training sessions.

This is when Josh came up with the idea to ask our daycare if they would allow us some room in their facility where Patrick could go during the day with his tutor(s) and work...And next time, I'll tell the very dramatic story of daycare neglect, and how we learned our first lesson of advocacy, the hard way.  Until next time, I'll be waiting for you at the corner of Hope and Love.

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!

Resources

I wanted to share some additional Autism resources with you that I have found helpful through the years.  There are so many resources out there now, than when we first started.  Take advantage of them, before you go out and buy (which is what we did).  Sure it might have been easier in the short term, but we could have saved some serious dollars if these things were available eight years ago!

I'll continue to craft a resource post - or at least attempt to - about once a week.  Please follow me to ensure you are receiving the posts.

+PECS
The+ PECS [Picture Exchange Communication System] is a teaching protocol is based on +B.F. Skinner’s book, Verbal Behavior, such that functional verbal operants are systematically taught using prompting and reinforcement strategies that will lead to independent communication. Verbal prompts are not used, thus building immediate initiation and avoiding prompt dependency. (SOURCE:  http://www.pecsusa.com/pecs.php) 

PECS (Picture Exchange Communication System) is a wonderful system to aid in communication - no matter where you are in the process.

Here are a few links for photo sources for your PECS.  (this is what our photos/clip art, etc are called for our daily schedules/paint sticks).  We started using the PECS system before Patrick was diagnosed.  We created a binder with each page organized into Themes, and on the cover was the day's schedule.

Patrick also had two times per day he could select a free choice activity, from our pre-determined acceptable activities;-)

      +AUTISM RESOURCES                                                                              

   PECS                                                                                                                                                    

+PECS Resource Flash Cards & Downloads
http://www.childrenwithspecialneeds.com/index.php/downloads.html

+SEN Teacher
http://www.senteacher.org/Print/Other/

+Practical Autism Resources
http://www.practicalautismresources.com/printables

+Grocery
http://www.grocerypecs.com/

+Toy
http://www.toypecs.com/

+Do 2 Learn
http://www.dotolearn.com/

+Kid Access
http://www.kidaccess.com/html/products/standard/main.html

+The Internet Picture Dictionary - This site has resources in multiple languages, plus activity sheets and flash cards.
http://www.pdictionary.com/

+SET
http://www.setbc.org/pictureset/category.aspx?id=4

+Slater Software - A REALLY great resource for picture schedules, social stories, customizable journals & stories!
http://www.slatersoftware.com/document.html

+Touch-and-Go
https://sites.google.com/site/touchandgo2010/file-cabinet

+Pinterest - Visual Supports, Scheds, PECS - What a wonderful resource!  Printable visual schedules PECS downloadables plus loads of creative applications!
https://pinterest.com/pediastaff/visual-supports-scheds-pecs/


   Social Stories                                                                                                                                       

The Gray Center & Carol Gray - Carol trademarked Social Stories.  She is an expert, and her stories are a great place to start when looking to modify behaviors, develop new skills, etc.  Using her guidelines, we have several stories we wrote in the early days, and even more as of recently that are Patrick-specific and have been a tremendous help.  I use a combination of real pictures, illustrations and free clip art to help illustrate his stories.  
http://www.thegraycenter.org/social-stories

Kids Can Dream - Really cute website, with loads of example stories to share
http://kidscandream.webs.com/page12.htm

kcmom4sons

kimberly.carroll

Finding the Courage to Forge Ahead

I was sitting in Mass this morning, listing to our Priest's, Father Del's Homily - which was very great!  He was talking about lent, and life, and our approach to it all.  The basic message, as I understood it, was that oftentimes, when we find ourselves on the top of the world, we just want to stay there, change nothing, do nothing, just enjoy it a while and simply be.  This is exactly where we were after our family was complete with the birth of our fourth son Peter.  We lived in "happy town" (thanks P.M.) and we were loving life!  But just as quickly, our world came to a crashing halt with Patrick's diagnosis.  We need to figure out how we were going to move forward with our lives, how we were going to approach our life now, how/if we were going to tell our other kids, and how we were going to tell them.

This is the only place where Josh and I differed.  We are usually always on the same page regarding the major decisions in our lives, and this caught us off guard a bit.  I wanted to plaster it and shout it from the roof tops!  This is who we are - take us or leave us - I really didn't care - and still don't.  Just wait until I tell you about our Christmas Photo this first  year.  To come in a future post.

Josh, wanted to take a softer, more quieter approach.  And I am not sure if this is the difference between Men and Women, or just us two, but I didn't want to be quiet about it at all.  I didn't want to be in your face with it either.  I  just wanted to be.  There was nothing we did to cause Patrick's Autism, and there was nothing we could do to "cure" it.  This is what today's Homily message resonated with me the most about.  Here was a crucial point of how we were going to deal with our lives moving forward.  Both of us knew we didn't want to put our heads in the sand and ignore it.  However, we had three other kids to raise too, and we didn't want to become so consumed in one kid, that the other three boys were left to fend for them selves.  Did we have the courage to really embrace the diagnosis and develop a family approach to being a family, and coping as a family, or would we hide and work around Patrick's disorder...Would we have the courage to forge ahead?

Looking back Josh and I actually had this discussion.  I cried my way through it, and he spoke very passionately about how we needed to be a "normal" (yep he said the "n" word!) family.  I remember thinking, we are normal, we aren't different, we simply can't let Patrick not be "normal".  This is a really critical point in our early lives.  We made the conscious decision to be "normal".  This meant we would not live two separate lives - one with Patrick, and one without Patrick, so he could be more comfortable.  We were going to have to make him comfortable, or teach him coping skills - so he would be comfortable with all of us together.  Josh and I would simply not have it any other way.

Do you know the song by +The Clash - Should I stay or Should I go?  Well this was not an option for us.  We would go, and continue to go.  Patrick and the folks we would visit, would simply have to cope, and we would need a TON of Patience!  It was hard, REALLY, REALLY hard!  For our child, who needed structure, a set schedule, to have defined variables on picture schedules, and understand what would happen, and when I would happen was critical.  Well, we threw that right out the window!  It would not work for our family.  I KNOW!  Some of you are probably pulling your hair out now thinking what a disservice we did for our son.  But this decision, like the dead bolts on our doors, was one we made for our family.  And it has worked!  I encourage you to take a look at your family, how you want it to be and the needs of all of your children before forging ahead.  This decision was the biggest to date for us.  But when we actually found the courage to face our real lives, and embrace who we were and are, with all of our faults and challenges, we began to go back to that happy place.

Our boys have been the biggest blessings in our lives - besides each other.  They amaze, frustrate, us daily.  Between Josh and I, we think - at times - we are not a good DNA combination (that's both typical and non typical sons).  But all joking aside - Its a good thing to celebrate and reflect on the decisions we've made.  God has had an awful lot of fun watching us to date, but I also think he is smiling down at us for finding our courage, and moving forward.  The journey is not an easy one, and there are days we remind each other to take the next step, but we are in it together, and we have all of our family and friends.

So, it was with this courage, feeling up and armed with our Vision, Mission and Goals for Patrick's EIBI therapy, we entered into this program, and walked into the very next down.

Will you share your thoughts on your journey with me?  If you want to talk, I'll meet 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.

Autism Awareness

Thank you +@ www.bit.ly/aFundTherapy for this fun quote and banner for Autism Awareness!  I just thought I would share with you all.  I'll write a "real" post later this evening.  Enjoy!


Autism
There's no "typical".  No portrait to paint.
No two who are alike.
Like snowflakes, they resemble, yet remain unique.
Therein lies the challenge,
for parents, patients and physicians.

Our First Assignment

So we were in!  I can't begin to describe how hopeful we were to be in this program!  I really didn't even know how valuable this program was going to be back then, but we were IN!  And at the time, that is all that really mattered.

It must seem like we are desperate people, or rather I am.  Well, I was!  Imagine - and I know some of you may be currently feeling like I was, or may have felt like I did - finding out that your child or husband, parent or loved one, had a serious condition where there was no known cure.  A condition where they could potentially not be able to complete school, live on their own, marry, have children, a career of their own?  Yep, this is where I had headed.  And, to be honest, where Josh had headed too.  We had basically accepted that Patrick would be with us forever, we would never be empty nesters, never be able to travel the world, and do things retired people do together.  I am sure this sounds fairly selfish, but we had never planned for our lives to be like this.  And I promise you, as I sit here writing this, I have tears streaming down my face.  Not that we are not thrilled with where we are, and would never, and I do mean NEVER, change a single thing in our lives, but occasionally we do wish and wonder if.  We have never lost our hope that things may eventually turn out the way you hope it will.

Do you remember all of the hopes, and dreams you had for your child/children, when you were expecting them?  How many future Doctor, Lawyer, baseball player, fireman, nurse, teacher, president bibs, onesies have been purchased over the years that expressed just that, your desires for your child to be all that he/she can be, or even more truthful, that you want them to be.

Well, it is hard, when reality smacks you right in the face, and you realize that this may not be the case with your child.  And, there would be a possibility that our youngest Peter - newly arrived on the scene could also have Autism (he doesn't by the way, he comes by his silly, wonderfullness all on his own with nothing to blame:-) ).  So a few boo hoos are warranted.  The hardest thing for us was we only had each other to talk about things to.  I know family, you will say you were there, and you were, we know, we would not have been able to do it without you!  But sometimes you need someone who truly understands where you are, what you are feeling, and where you hope to go.  Someone who just listens, and doesn't try to find a solution for you.

All during these first several months, (heck we are still doing this) of our diagnosis, we were gathering and processing information, working our jobs, caring for our four children, trying to maintain our marriage and friendships, let alone hobbies, interests, house work, laundry, day to day stuff, and we were just about to pile on a whole lot more with the +EIBI program.  I literally had NO IDEA what we were getting into.

I also want to make it VERY CLEAR, the EIBI program was the best thing that ever happened to our family and especially to Patrick.  We are eternally grateful to Dr. Kim and the long list of Tudors who worked with Patrick, and us every day straight for six years.

Well we went to our first meeting with Dr. Kim.  And there were three other families there with us.  This was the first time we actually met other families of children on the spectrum.  It was amazing!  It was so interesting to hear about their challenges, and a relief at the same time to know it could be worse than it was for us...

Dr. Kim began to explain what the EIBI program was all about.  It was essentially behavior modification, with STRICTLY POSITIVE Reinforcement.  We were going to help shape Patrick's behavior into a ore typical behavior through small rewards when he does something correct.  Can you say Pavlov's Dogs?  I laugh now, but it began sort of like that.  We were going to teach Patrick a conditional response for doing something he should have learned.  Eventually it would be a series of tasks, but for starter we would be helping him understand features, functions and classes (color, animal, reptile; room, kitchen, cook and eat in it).

Basically we learned in this first class that Patrick had skipped over the cognitive phase of his development.   Translation, what most of us learned through observation and association, he couldn't learn.  For example, he didn't know what a cabinet was.  One day he looked at me and said " goahgagob," or something roughly like that, while pointing at the cabinet.  I said, "yes, that is a cabinet."  Where most of us learned while observing the conversation of the people in our house and when they would say it's in the cabinet and we watched the other person go to the cabinet, we knew what it was.  Patrick did not have this ability.  He was not able to process just verbal instructions.  (hence the +Velcro and pictures).

SUNSHINE SOLUTIONS RESOURCE CORNER:
+Google images is a great place to start for your picture schedules of objects and activities.  Just google what you are looking for, click on the images tab and go to town.  I actually purchased a laminating machine to help make these things more durable.  I will try harder to work more of these kinds of ideas into my posts.  Also, go online and look for a resource for +Velcro (hoops and loops) dots.  These are so much easier to work with.  I purchased bulk rolls of both and am still using them today.  For conversations or daily activities, you can use a paint stick (FREE!).  I also covered the front of a 3" binder with Velcro stripes.  There I could lay out  Patrick's entire morning or afternoon schedule so he had it at a glance.  These activities (games, blocks, etc) are also very valuable to use when they learn to read.  More on this to come!  I promise!

Our first assignment at the end of this class, (I have left a ton out due to the proprietary  nature of the program, but look it up! or send me an email and I will forward to you the contact information of the program.)  was to go home and create a vision, mission and goals for Patrick's EIBI program.  Why you ask?  Well, we were encouraged to treat this program like a home business (and it really was, with employees, benefits and the whole nine yards!).

NOOOO  Problem!  I did this kind of thing for a living.  I created brands, set up companies and their outward face to the world.  I could definitely do this!  For the first time in months, I was in my comfort zone.  Here is what I came up with:

VISION:
To help Patrick achieve and maintain a main-stream/"normal" status.

MISSION:
To guide Patrick's development through application of the EIBI training to where his PDDNOS diagnosis had little to no effect on his daily life.

GOALS:

1.  To ensure all tutor sand parents are consistently adhering to +TKOC EIBI's programming.
2. Communicate & Apply teachings to all members of Patrick's multi-disciplinary team.
3. Provide a structured, patient and loving environment - a place where Patrick wants to be.
4. Achieve 40 hours of tutoring 52 weeks of the year.
1. NO EXCUSES!  Patrick will only get out of this what we put into this.  Remember, this is our opportunity to help him achieve the vision!  

(see, I told you I was in mission mode!)  I promise, this is exactly as it appears in his Business Binder!  I  just pulled out his master program binder, and this is the first page in the book. I'll try to add some photos of Patrick at the time we began this program.  He had such a sweet face, and looks like a baby!

Well, our first assignment was done.  I felt like it was the start to a great business plan.  I can't wait to tell you what happened next!  Join me on my next mission.  Lets meet at the corner of Hope and Love!

Mission Mode...On Steroids

Do you remember how you felt when you were waiting to hear from your college of choice, or even where we live, when you hear what Catholic High School you were accepted to?  You would go to the mailbox every day just praying there would be a really thick envelope inside the mailbox?  (I know, I'm dating myself, I think they send some of those things via email these days).  We updated our voice mail system to an electronic one so I could check it during the day, just in case Dr. Kim called...I was really out of control!  But this is the kind of anticipation, desperation, craze we were feeling in the Carroll household waiting to hear if Patrick was accepted into the EIBI program.

I had built this program into the end-all-be-all, it was going to be the answer to all of our problems and help Patrick recover.  I was convinced!  This was what we wanted, and when I am in mission-mode - watch out!  And when my kids are involved, I haven't lost yet!  Call me Mother Bear, or B%#@h, but when I'm on a mission, all I can see is the goal ahead.  And the mission was to make Patrick be all that he can be!  (notice I did not say help him to be all that he can be, but Make, and that should tell you a TON about my mindset at the time.)

Everything I had read - and I consumed vast amounts of books - I have an entire library about Autism - Amazon rivaled our grocery bills at times.  When I wasn't taking kids to their sports, I was reading, researching, taking notes, highlighting things, ordering in more things to digest and consume.  I wanted to know as much as possible about what we could do to help Patrick.  I can't even say help his symptoms at this stage of our learning curve.

Everything I read said we were fighting against time (remember beat-the-clock?)  I was desperate because the time frame - according to all of the experts - was six years.  We had until six years of age for Patrick to potentially reach his full potential.   Never mind that I have three other kids who were in their various stages of development and learning.  Right?  I mean some people go to school for years beyond the typical High School, Bachelor's degree right.  WHAT WAS I THINKING?  We only had until he was six years old to reach his full potential.  We didn't have ANY time to waste!  Where was that phone call from Dr. Kim?

I was so desperate, I even asked our Pediatrician, our Speech Therapist and our Occupational Therapist to call in to see if they had any pull to get Patrick into the program. 

But as you know, you may have seen, or you may feel currently, when it comes to your kids, logic often times flies right out the window.  I really think this is God's way of having some fun with us during our stressful times.  Because when I look back at my desperation, I actually roll my eyes!  Why Josh didn't bonk me over the head and commit me, is still a wonder!

Okay, so here is what I promised you in my third post...here is the rest of the story... sort of.  (That's for you L.W. ;-)  )

Patrick got into the program!  Our Prayers had been answered!  We got in!  Now we would see some significant progress, and sit back and let the doctor's and experts work their magic!        We began a five year segment of our journey, that at times was the most difficult, the most exhausting, the most expensive, stressful years of our lives.

So I began to fill out all of the paperwork, first words, first steps, first gesture.  His behaviors, situations, likes and dislikes, make copies of all of the paperwork, assessments to date, asked the dynamic duo to fill out additional forms to take with us to the first meeting.  Which by the way was a series of meetings several hours long.  And I'll tell you more tomorrow.  Will you wait for me at the Corner of Hope and Love?

ZZZZZZzzzzzzzzz

Oh, I think I forgot to mention, that Patrick isn't sleeping...he is up jumping at night, hopping around his room and making this really strange mouth noise.  I'm not even sure if I can put it into characters, the sound he makes.  He actually sounds and kind of looks like Daffy Duck on the looney tunes cartoons - bouncing around like a hyper-crazed, sugar-rushing junkie!  And I am not exaggerating in the slightest!  He not only does this all night long, but all day long too!  When is he going to recharge his battery?  When will we be able to get some sleep??!!!  When will he sleep?

I had actually thought I was over the sleepless nights.  Peter was well beyond the two am feedings, weren't we in the home stretch of parenting babies?  We no longer had to carry a diaper bag or rolling suit case with all of their stuff, why couldn't we sleep peacefully?  It just wasn't in the cards for us...we were way ahead of the Zombie trend, we were now the walking dead!  I used to be a sound, hard, deep sleeper, but that is no longer true.  I couldn't relax to get into that wonderful REM stage.  So long dreams.

What were we going to do?  Would Patrick finally venture outside of his room?  Would he go outside the house at night?  We didn't have an alarm system, we had deadbolts.  Who was going to watch him while we sleep?  Would he disturb the other boys at night?  I could go on and on with the questions and concerns we had.  What to do?  It seems like a simple solution right, craft your plan.

So out we went to Home Depot and we purchased the standard brass door knobs, you know the ones, the basic round knobs.  We also purchased the safety guard to go over Patrick's bedroom knob.   I installed them (Josh is not handy with a tool belt, and please don't even get him near a utility knife!) and just in the nick of time, because he literally the next night, not only defeated the safety door knob...he ventured outside of his bedroom.

He would bounce down the stairs making his funny mouth noises, he would bounce around the family room, then would find the refrigerator, get the gallon milk jug out and drag it upstairs and wake me up!  One night, he had some trouble, and ended up dragging a leaking jug up the stairs into our bedroom...that was a MESS!  Who can sleep after that?  He didn't mean to, it was an accident, all he wanted was a sippy cup of milk...I was reaching the end of my rope!

For those who know our family, you know that Josh has inherited a bad habit.  This is just about the only thing I wish I could change about him.  Other than sleeping on the couch, and his obsession with McDonald's, he is virtually the ideal husband - for me.  (I know, you can gag later), but I am serious!  Yes, we have our arguments, but we basically complete each other.  He is the yang to my yin.  Where he zigs, I zag, when one is in a bad place, the other isn't.  This is just how we roll, and fortunately for our kids, this is a good thing, and his sleeping on the couch was a good thing too.

So, the couch became the norm for Josh.  Now we had both floors covered.  I would attempt to sleep upstairs and Josh would have the first floor covered.  If Patrick watched TV, got out the milk, or our worst fears, attempted to go outside, we would be there to redirect.  I can tell you we went through so many different scenarios before coming up with this plan.  We would add another key lock at the top of the door (but what about the other boys, if there was a fire, how would they be able to get out?)  What about those split doors.  You know the ones where the bottom stays shut and the top can stay open?  That wouldn't look too good on the front of our house, and our neighborhood association wouldn't approve it anyway.

After about a month of this arrangement, and Patrick consistently getting up and staying up all night, we began to Google and found a natural herbal supplement for sleep.  Now I know what some of you may be thinking...they are going to drug their toddler?  Please, don't judge!  We were going on basically about two hours of sleep between Josh and I for almost a year, and it couldn't continue.  Our other boys needed us too!

So I asked our pediatrician about Melatonin and she said we could try it.  I became the Nurse Ratched of our house.  See Patrick couldn't take the medicine because he had swallowing issues.  Well, he also has some serious food issues, but that will need to wait for another post.  I found the lowest strength of Melatonin 3mg at our grocery store, (Spring Valley, Nature's Bounty, and many more sell this supplement) and crushed a tablet between two teaspoons and would mix it into a single serve cup of applesauce.  We called it Patrick's sleepy snack.  IF you decide to try this, please look into it first, and check with your physician before doing or giving your child anything!  I have heard of some kids having the exact opposite effect.  They become even more awake!

This was not the case with Patrick.  It worked like a dream.  Patrick would go to bed at eight or nine and would sleep through the night until about 6:30 am.  It was AMAZING!  We could go back to regular nights, sleeping - I may even be able to dream again.  It is important to note, this did work for a while.  We also mixed in jumping on a trampoline during the day - since he loved to jump, and this exercise also helped him to regulate his sleeping habits.  He, existed for almost two years on about three hours of sleep.  And now, almost six years later, we can hear him sometimes shooting hoops at 3 am in his bedroom - that he now shares with his brother Peter, but he doesn't roam any more, and other than the occasional night when Peter falls asleep first (he snores, and it drives Patrick NUTS!), his sleeping troubles - and Josh and my sleepless nights - are pretty much gone.

We did eventually install key-dead bolts, and I hung the key to each door on a small hook above the door.  That way our two older boys could reach the key and Patrick and Peter could not.  We also purchased a fire ladder and taught the boys how to use it so just in case, we had an emergency action plan and a back-up to that emergency plan.

Thanks again for following me!  I really hope this helps.  Tomorrow, I'll begin to share our EIBI experience and how "Dr. Kim" was not only Patrick's saving grace, she was our Gift from God.  More to follow, as we cruise on down to the corner of Hope and Love.

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.

The rest of the story...

As I promised yesterday, here is, as Paul Harvey would say, "The rest of the story".

Months passed since we had that wonderful appointment with our pediatrician which told us what we wanted to hear, Patrick did not have Autism.  My Mom had asked if any of our boys would be able to go for a quick, long weekend to Hilton Head with her.  Due to sports schedules, Patrick was the only one who could go, so we said sure!

At the time, Josh was working for my Mom's company and when Monday rolled around, she and Patrick returned from their weekend in the sun and the exchange was planned at the office. I again, receive a call mid-day from Josh, only this time, I am back at work, and Josh really does not sound good.

He tells me that something is definitely wrong with Patrick.  When I asked why, he proceeded to tell me that when he returned from lunch, Nanna and Patrick were back and playing in my Mom's office.  When Josh came in to say Hi to his little Diddy, Patrick freaked out and ran behind the door scared.

I really thought this behavior was strange, but more concerning was the fact that my rock was  showing signs of REAL concern...did we miss something a few months back...and of course, my reaction was to cry.  For the hurt my husband was feeling, and the worry that we thought we had overcome.

Again, we developed an action plan.  I made arrangements to leave work early that day so I would be home when Josh and Patrick came home.  You know the Steve Martin movie, Cheaper by the Dozen, when the find their son on the train, and the Mom sees him for the first time since he went missing, and she claps her hands and the son goes running tearfully into her arms?  Well, this was the scene that was running through my head.  This was exactly how Patrick, my loving almost three-year-old was going to react after not seeing his Mommy for three days.  I couldn't wait, the anticipation was growing and I could not wait to yet again, prove everyone wrong.  There was NO WAY there was anything wrong with Patrick, he was perfect!

Yes, he still carried the gallon jug of milk throughout the house when he wanted us to pour him a cup, and of course he LOVED the teletubbies, and his obsession with tags was so darling!  Of course, he really didn't talk that much because with two older brothers the ages of 6 and 4, who needed to?

Well, in through the door walked my husband, followed by Patrick, and, yep, I go down on one knee, with a big smile and say "Hi Patrick!"  and you know what he did...
he turned right back out the garage door and ran down the drive way crying!!!!  I burst into tears and both Josh and I ran after him.  We ultimately got him back into the house and comfortable again, but I felt like my entire world had shattered to a million pieces!  And Josh looked like somebody just burned down the last McDonald's restaurant!  (stay tuned for more about Josh and his love of McDonald's)

Without saying a word, be both hugged each other, and then, I went into, what Josh affectionately calls "mission mode."  I called my pediatrician's emergency after hours hot line and left a calm message that said we needed a referral immediately to our Children's Hospital for an Autism assessment.  Also in the meantime, I needed a referral - also to our Children's Hospital for speech and occupational therapy, STAT!

Have I mentioned before how much I love our Pediatrician?  She was and is AMAZING.  She  called me right back and we talked.  She faxed over all of our referrals that night.  So now, all we needed to do was wait....and wait...and wait...and Google...and wait...

As some of you may already know and understand, I sincerely believe that the word wait is one of the most disgusting four-letter-words there is!   And yes, I mean right up there with the F-Bomb!

And wait we did.  For 14 months.  During which time, I kept Googling all that I could find about signs, symptoms, cures, early treatments.  I was able to get Patrick into see a Speech Therapist, as well as an Occupational Therapist.    I was so excited!  Finally some real professionals to work with Patrick and help us understand what our options were.

Erin and Karen, our dynamic duo, my sanity, our saving Grace!  Every Monday I would race home, get the four boys and we all would head on over to Children's and Patrick would work with Erin and Karen, and I would sit there and cry...

I know...here she goes again...I promise I wasn't always and am not always a blubbering idiot.  But these early sessions were eye opening, and gut wrenching!  Patrick didn't cooperate, he couldn't calm down, he would scream and flop on the floor, and I thought these poor ladies would run for the hills!  One of them would ultimately look over at me, pass me the box of tissues and tell me that he was actually doing well, and that we were so lucky.

Through these sessions, I began to learn how we could help Patrick.  I began to learn sign language, and began to make picture schedules with paint sticks and velcro became our new best friend.

Well, our assessment day had arrived.  Patrick was now almost five.  Josh and I both took the day off of work, and headed down with Patrick to Children's.  Our appointment was going to last about three hours.  We meet with the team that will perform the tests, and away we go.

The first session was with Josh and me where we answered questions about Patrick and his life.  Little did I know this would be the first of many times, we would be required to remember the exact age he spoke his first words, what they were, when he took his first step, when we began to notice his development delay, and on, and on...

Next it was Patrick's turn.  Patrick and I head into a room with a lady, and Josh stays in the observation room with the other team.  The lady asks Patrick to play with her.  She has a toy bus with the Little People.  Patrick doesn't play with the Little People, he just picks up the bus and starts spinning the wheels.  The lady writes something down.

Then, get this, she asks Patrick to "imagine that an alien from outer space has landed and wants to learn how to brush his teeth.  She needs Patrick to teach him how to brush his teeth."  I'm thinking to myself, yea right, he's 3.5 years old, and doesn't even know what an alien is (yep, I just said my teletubby loving child has no idea what an alien is!) let alone how to instruct him how to brush his teeth - do alien's even have teeth, or hands to use a tooth brush?

Patrick just stares at her...and I begin to compensate, and make excuses, and the lady just looks at me and asks me to be quiet.  So I sit there, clearly put out, and wait to see what is going to come next.  And, she pulls out this shiny spinning top and starts to spin it.  Patrick's head bows and he is fixated!  My heart skips a beat...

Patrick's part is done now, and we get about a thirty minute break before we all meet again and we find out, what we are now beginning to see...

The three of us go back into the "team room" and wait for the "team" to reassemble.  In walks the three Doctors and the lady.  We make room, and I sit on the floor with Patrick.  The head physician looks at Josh and I and hands us this over sized manila envelope.  She then says the worst four words I have ever heard..."Your son has Autism."  when she then promptly follows with "we'll see you in six months." and they all get up and leave us......

"Wait!" I yell, "what did you say?" as I scramble up off of the floor and head out the door.  She turns to me and said, "we said you son has Autism, and you will need to come back to see us in about six months."  All the information you need you can find in your packet.

Now despite all of my tears and raging emotions, I actually had a tough time processing those four little words.  How could this be?  I had a normal pregnancy, just like all of my others.  Neither Josh nor I had a family history of neurological disorders.  Josh graduated with honors from Notre Dame, I made it through The Ohio State University..... we were "normal."

However it was very real.  We had our verdict.  The diagnosis was clear.  Patrick had Autism.  The bottom just fell out of our world!  There really was something wrong with our beautiful, blue-eyed boy!

Here are a few photos of Patrick at the time.  So Sweet!!!

This is where I leave you for tonight.  I'm headed out to a very special Valentine's dinner with my handsome hubbie!

More tomorrow, from the corner of Hope and Love...Happy Valentine's Day everyone!

A Little About Us

I just learned a big lesson - Save and save often!  I just completed my second post and during editing, lost the entire thing...AGGHH

Before I begin please let me say it is not my intent to hurt anyone's feelings or to offend anyone in anyway with my words.  I apologize if I do.  I simply want to help and feel called to help those who are effected by Autism.

Let me begin to describe how our journey began.  As I've mentioned before, Josh and I are parents of four young and very active boys.  Jack is 14, Matthew 12, Patrick 10 and Peter brings up the rear at age 8.  We are celebrating the even years.  Josh and I could probably write a book about planning a family.  Each son is almost exactly spaced two years apart.  Two born in August and two in September.  Family planning is where the book would end, because our parenting is not exactly...textbook.

We had just celebrated the baptism of Peter - I was still home on maternity leave - and Josh calls me from work.  He had just received a call from his Dad, which was unusual during the day, and needed to tell me about it.  You know how you get this feeling that you know something is going to be bad.  My heart immediately lept into my throat and my stomach began twisting and turning.

Josh began to describe the call he had with his Dad, John.  John told him about a conversation he and his wife Bev heard between both of our Mothers during the party the day before.  Our Mom's were talking about Patrick and how they thought he may have, or at the very least might be showing signs of Autism, but neither one knew how to approach Josh nor I on the subject.

Side Bar:  Please if you are a Grandparent, Aunt, Uncle, Best friend, or sibling, PLEASE, PLEASE, PLEASE just tell the parents.  (as kids we are raised to talk to our parents about anything - no matter what), so I encourage everyone to remember this.  We may be your kids, but you can tell us anything!  This is what I am so passionate about and hope to ultimately encourage others to do...talk about it.

I will never forget that day.  It still brings tears to my eyes just remembering it, but if we don't share, how will others know?

So, Josh and I did, what we always do, we developed an action plan.  We have never been hand wringers - as much as I live my life by emotions - you will become to learn, that I am a crier.  I pretty much cry at everything - joy, fear, anger, hope, celebrations, Mass, all pretty much bring tears to my eyes.  We wanted to know, so we called our pediatrician, and then began to Google.

Patrick couldn't have Autism.  Weren't those the kids who wore helmets and banged their heads against the wall?  (please, again, I do not mean to offend, but to explain my grossly inaccurate perception of the condition)  I looked up and took the crash course on Autism that Google and the authors of Wikipedia provided.  I was convinced, Patrick did not have Autism.  He talked (briefly), he laughed, he interacted with us (in the immediate house hold), yes, he did hide under the table during Peter's baptism party, but wasn't that normal?...

Well the day arrived, the three of us sat in the pediatrician's exam room waiting.   You know the one, the room that is lined with zoo animal wall paper, walls covered with children's pencil drawings hanging next to the inspirational Successories wall art about Team Work.  I'm busy preparing my list of Patrick's developmental milestones ready to prove to the Doctor that Patrick doesn't and couldn't have Autism and Josh, the rock, is silently worrying.

We walk through our concerns, she answers questions about how many words does he know, does he gesture, can he walk.  He's passing with flying colors.  Then, its Patrick's turn to demonstrate his tricks and skills.  All of a sudden Patrick becomes extremely interested in the commercial wall art, and begins to identify all of the letters in the words Team Work.  That was it!  He passed the test, he didn't have Autism!  The Doctor didn't see it, and we never did.  What a relief!  We immediately went home and called our parents letting them know Patrick was fine, all was good, he didn't have Autism!

Well, as you know, we were wrong.  But more about that next time.  From the intersection of Hope and Love.