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!