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.

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.