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.

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.