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!

911 - The New House Rule

It's all so funny, now that we have the perspective of time, but at the time, it was extremely scary.  Probably one of the scariest times of my life.

Have you ever worried that you may lose your child or children?  This is one of my deepest rooted fears, one that is guttural. I have gone to many extremes (no not leashing), but matching outfits (stripes or matching tie-dies are the way to go) when we go to amusement parks, Disney, the zoo, basically any public outing where there would be crowds, I would plan ahead and find four matching shirts and dress my kids in them.  Josh would roll his eyes, and even his Mother would comment on how ridiculous the "matchy-matchy" was. I did care, and still do.  It is one way that I can keep my eyes on all of them at once.  And now they are 14, 12, 10 & 8.

When you are the keeper of the herd, anything that can help you keep an eye on them, the better, and anything that stands out in a crowd all the better in my eyes.  I have not lost one yet - in a large crowd setting at least ;-)

Well, we had just started the Autism EIBI/APA therapy in our home.  We had not yet found tutors, so we were starting slow with just me engaging Patrick for about 6 hours a day (at night, after work).  This night we were upstairs in his bedroom "working" and Patrick was working for a bottle of water (yep, it was that easy back then).  It was about 9:00 at night and we were close to wrapping up the evening.  The other three boys were tucked safely in their beds, and Josh was out with the boys playing softball.  (This was before he blamed softball for messing up his baseball throwing arm - sorry Hunnie!).

I sent Patrick downstairs to get his bottle of water while I cleaned up all of our supplies and entered in my last bit of data.  I thought I heard the garage door open, but couldn't be sure as Patrick's bedroom is on the other side of the house from the garage.  Thinking nothing of it, I finished my task, and headed down to get Patrick and bring him back upstairs for the bedtime routine.  As I entered into the Kitchen, there sat Patrick's water bottle and cap, but no Patrick...he was not sitting at the table.  I immediately turned around to check the locks on the front door - all vertical - door was locked.  I rushed over to the back door - locks vertical again - door was locked, checked the garage door - door was down.  My heart began to race, and I began to panic!  I started calling his name and running throughout the house.  I checked the basement, the basement toy room, I ran upstairs, checked all of the boys rooms, under all of the beds, the master bedroom, closets, bathrooms.  By now I was screaming his name and shouting please answer me, you are not in trouble, but Mommy is worried she can't find you. This was the longest minute of my life I swear!

I could not figure out where he could be!  All of the locks were in the correct position (this was before we installed the deadbolts - can you say this happened the next day?)  Patrick had seemingly disappeared out of thin air!  A frustratingly overwhelming sense of loss, panic and FEAR slammed into me that I can't explain.  My heart hurt with an indescribable pain!  I was crying so hard I could barely breathe, let along see.  Jack and Matthew were freaked out!  What an example I was of calm under pressure!  NOT!

I then grabbed a flashlight, the telephone and headed to the front door.  I asked the older boys to stay put, and I headed out the door.  I immediately made the scariest phone call of my life - so far.  I called 911.  By the way, if you know any of the police who work in the 911 call center - make sure you tell them how much you appreciate them!  Go visit them, take them a cake, lunch, what ever!  These folks are WONDERFUL!  I love our Police department.  They have taken such great care of us!

Anyway, the operator answered and I can't even say I was calm, which, at the time, was  pretty rare for me, and explained that my son was missing  I couldn't find him anywhere in our house, and all of the doors were locked from the inside.  I explained he was only four, and he had Autism, and the worst thing, he has a fear flight response.  Which means when he is scared he simply runs away.  And I mean he RUNS!  Remind me to tell you about our Big Boy experience.

The operator calmly began to ask me questions.  What was his name, what was he wearing, where did we live, and then she told me she was dispatching a car to our home and would stay on the line with me until they got there.  Luckily, my neighbors across the street, Neil and Katrina heard me outside and came running to help.  GOD LOVE THEM!  They are the best neighbors you could ever have.  Calm, helpful, resourceful and always, always ready to lend a hand - no matter what!

Then came the patrol cars.  Lights and sirens blazing - and at this time I did even know to tell them not to come with the sirens blaring...this truly scares Patrick.  The officers calmly asked if they could come in and they began to search the house.  The asked me if I had checked upstairs and encouraged me to do so again while they talked with my older sons (who were 6 and 8 at the time).  On my way back down the stairs, I heard Josh's voice, and then the officer's voice saying he was with you?????

I immediately knew what had happened, before even entering into the kitchen.  Josh had taken Patrick with him.  I was instantly angry and relieved at the same time.  I could have strangled Josh (but not with the police standing there)...Everybody laughed, but I was a mess.  This certainly was not funny!  I thought my son was GONE!  Luckily, he was just fine.  I thanked the officers profusely, all while shooting lasers from my eyes at my husband.  I wanted the floor to open up and swallow him.  I felt like an idiot!  I seriously thought he was gone, just simply poofed out of thin air!

Well the Police left (or at least we thought they left), and I was just about ready to unload on Josh, when there was a knock at the garage door - it was the Police - just checking back in to make sure Josh and I were okay, or rather Josh was...and the boys were alright - by the way, they have to do this, to ensure there aren't any domestic issues - they brought stuffed animals for the boys and left us to deal with the fall out.

Josh looked at me and began to laugh.  He thought this was all so funny!  This made me even more furious!  I was balling my fists so hard, my nails cut into my hands.  I was shaking, crying, and I couldn't even talk!  All I could do was stand there and stare at him!  AGGHHHH!

Josh realized at that very moment that I was genuinely terrified!  Regardless of Patrick safely arriving  home, no harm, no foul, his wife was on the edge of losing it, and the target was HIM!  So he tried another approach that always works but is seldom used... he apologized and began explaining.

See Josh left his wallet at home when he changed for the softball game.  He was hungry and wanted to go to McDonald's - his favorite post-game meal - but did have any money.  He came home to get it, and when he saw Patrick sitting at the table drinking his water, he feared Patrick would throw a fit if he left again, so he asked if he wanted to go with him.  Of course, Patrick wanted to go!  He would not pass up a chance to get some apple dippers!  So off they went.  It never even crossed Josh's mind to let me know...And when he drove up to the house and saw the three police cars in the driveway, he instantly knew what had happened.

Well, with that kind of explanation, I had no choice but to cry harder and go in for the hug!  I mean, how could I be angry with him for that?  He was trying to prevent another of Patrick's tantrums!

After I had cried it out, I made Josh promise, and we created a new house rule - that no one would take any of the kids out of the house - or even one of us leave the house - without making the other one aware of it first.  No kidding, it is on the House Rules board that is on the door leading out to our garage.

See, we are far from perfect parents, and I know there are worse things that can happen, and do happen all of the time, but also honest mistakes take place too.  If, at the end of the day, everyone is alive, healthy and mostly happy, that is a GREAT day in our house.  And no, there is no stripped or tie-died shirt that could have prevented what happened that summer night, all those years ago, but you/I just never know what will be waiting at the next corner.  Share your stories with me.  It may help, sharing with you has helped me!  Which is why I love standing here, at the corner of Hope and Love.