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.

A Beginning...

Well, here I am, standing at the corner of Hope and Love, in Batavia Ohio.  Married, with four boys, working as a full time marketing and communications professional.  I've tried to do this many times before, and can't tell you why I'm actually going through with it now.

It could be the fact that my oldest son is heading to high school in the fall, or that I needed a good thing to do for my Lenten giving back.  I'm not sure, and you probably don't care. 

If you are looking for a blog that will be professionally written, funny and well thought out, this one isn't for you.  What I can promise is a real account of what it is like to be a working mother of four young and highly active boys - one who has a very high functioning form of Autism (PDDNOS - Persuasive Development Disorder Not Otherwise Specified), and a wife, who fails miserably at all of it, but loves them and every moment we share!

I want to thank two young and very valuable friends of mine for providing the inspiration and encouragement that I needed to really begin.  They have no idea what they did or even that they were doing it.  They just asked me a few questions during a meeting, and two hours later, we were still sitting and talking.  They were listening to this crazy 40-something lady telling parenting stories and laughing.  Thanks to you both.  You provided me with two hours of kindness and therapy, which helped me find the courage to begin something I've wanted to do for more than eight years.  Encourage others, friends, families, and individuals with Autism, to do more, to be more.  

So there you have it.  If you've accidentally stumbled across this blog, I hope, and I pray, that this provides you a tiny piece of encouragement, from the corner of Hope and Love.