03 January, 2010

There and Back Again

The immortal tale of Bilbo Baggins, a hobbit from Bag End, is a staple of every fantasy enthusiast. For those not so familiar with the genre, I am referring to the book "The Hobbit" by J. R. R. Tolkien. In the story, the main character, Bilbo, sets off to find the treasures guarded by the dragon Smaug. Through the journey, Bilbo develops from a young and foolish young hobbit into a mature and well developed adventurer who values the wisdom of experience over the fleeting wealth of a treasure. As if to emphasize the lesson learned by Bilbo, the alternate title of he book "The Hobbit" is "There and Back Again"... seemingly emphasizing the importance of the journey more than any treasure.

Like the famous literary piece, the every day challenges we struggle to face are most frequently about gaining wisdom from the journey... not about reaching a destination. For our family, we recently came to the conclusion of one journey, or so we think, and have already started to tread down the path of the next. The journey we just completed is the rocky road of pharmaceuticals for the treatment of some challenges associated with Autism. Let me take a few moments to talk about how we (my wife and I) came to the decision to explore the use of medications, what our experiences have been, and where we are today.

First, I must say that the idea of using medications to treat symptoms of Autism was something that I was never sold on. I have always believed that the quirks of an Autistic should be accepted for what they are and that treating Autism as a disease that needs to be eradicated is a disgusting... even destructive thought. In truth, my belief in this is unchanged. What I will concede, however, is that some medications can assist an autistic to better control their own actions, ultimately helping them to achieve more.

The idea of using medications initially came from helping our other son, Aiden, deal with a few problems he was experiencing. In particular he had developed rather severe depression, including thoughts of suicide. The medications prescribed for Aiden helped tremendously in controlling the depression and also in allowing him to achieve more in school. My wife and I began to consider if this patch would prove as beneficial to Connor. So we brought him in to see the psychiatrist. Our primary concern was Connor's anxiety. At times, his anxiety over classwork, homework, sleeping, and just about anything else, were completely debilitating for him. Seeking to gain some control over this, we started Connor on an anti-anxiety medication. Unfortunately, a side effect of that medication was irritability... so we started him on a medication to counter the irritation.

Thus began the downward spiral of medications - side effects - more medications. At one point, we were up to 6 different medications, and we still were not seeing the desired results. In fact things appeared to be getting worse for Connor. We got to the point where we realized that we were adding medications for the sole purpose of treating side effects of medications that were added to treat other side effects. Things were so convoluted that we had lost site of what we originally started this to achieve. This all came to an end in October when my wife and I decided that we had had enough. After discussing our course of action with the psychiatrist, we began the process of discontinuing all of Connor's medications.

By the end of November, Connor was completely off of all medications. What we found, over the next 3-4 weeks was that there were some definite issues that we knew could be addressed with pharmaceuticals. We made some decisions on what were acceptable side effects and ultimately we readjusted our expectations, based off of the wisdom we gained through the journey. So, now we are back to utilizing 2 medications to help Connor control his anxiety and concentration.

Note: I have intentionally not mentioned specific medications. If utilizing medications to address specific issues is something of interest to you, then you need to speak with a psychiatrist about the right medications to use.

So, now as the magical medicinal journey has come to a close, another adventure is starting. In late November, Connor decided that he would really like to have a dog. With one canine in the home already, I was concerned with the idea. I did not want for our house to have just another pet who will become attached to my wife or I. So I set about researching a type of dog that would be particularly helpful to someone special, like Connor. Our first thought was a border collie, as their intelligence and natural herding instinct would make them a natural fit. I wanted more, however, out of another dog than just a special breed. There needed to be training.

As I researched training, I came across the idea of an Autism Service Dog. There are several schools that train the very special canine companions, each with a hefty price tag for the dog and the training. My wife and I soon realized that with out tight budget we could never afford the type of companion Connor deserved. It was then that I discovered a very special organization called 4 Paws for Ability. Instead of leaving the family to pay the cost, this organization utilizes donations to their 501 c3 charity to cover the cost of raising and training an Autism Service Dog (along with other types of service dogs). The donations are generated by the hard work of the family requesting the service animal through local fund raising activities.

I was impressed, from everything I read on the www site (http://www.4pawsforability.org) this was not like the other training schools, who were obviously in it for a profit. After a lot of thinking, I downloaded the application and began filling it out. The 2nd week of December, we submitted the completed application to them via mail and began the painful wait. On January 1st, the wait came to an end when I received a telephone call from Karen, the Executive Director of 4 Paws for Ability. After a few questions, she stated that they would most certainly be willing and able to provide Connor with an Autism Service Dog. With that, our new adventure began.

We are currently awaiting a packet of information from the organization that will provide us everything we need to know about the fund raising activities. Once we have that in hand, we will start to raise the $13,000 necessary to train Connor's dog.

As this next installment in our life continues, I will be sure to update the blog to let everyone know where we are in the process. For now, however, I need some sleep.


17 February, 2009

Autism: Deal With It! 2007-2008 Cliff Notes

"It was the best of times, it was the worst of times..."

It's the night before the test on A Tale of Two Cities and the opening line of the book is as far as you have gotten? Time for Cliff Notes! Ah yes, the beautiful yellow pamphlets that manage to turn a 400 page novel into 25 pages of story line.

It is in that time saving venue that I bring you the Cliff Notes (note: this is not a product of the Cliff Notes brand) version of what has happened between June of 2007 and now.

My wife was correct in her belief that Connor would eventually outgrow the fear of diseases and stop the spitting. +1 Point for her!

There have been several actions that Connor has started and stopped over the time period, but nothing of special note.

One dramatic change is that Connor and Aiden are now both taking medications to help with their anxiety issues. I will talk more about this item in a future blog post, as there is lots to say on this point.

As for me, in September of 2007 I changed jobs from being the Telecommunications guy to the manager of Security and Emergency Preparedness for my hospital. Look for a future blog post on this and how the changes have impacted me.

Lastly, if you have ever wondered about me (well, even if you have not wondered you are about to find out) and what types of things I obsess over, then let me tell you... my number one perseveration is the natural phenomenon called the tornado. Yes, those whirling winds that reach from the clouds down to the earth are ever present in my thoughts. Did I mention that there was a tornado last week about 60 miles south of where I live. Ok, so it was an EF0, but that is pretty much what we get in lovely California.

Thus ends the Cliff Notes, you are now ready to take the test! Oh, did I mention that the teacher knows everything that is included in the Cliff Notes and none of that is covered by the test? Oops!

13 February, 2009

The Return of the... blog?

It has been far (dare I say far, far) too long since I last wrote something for the Autism: Deal With It! blog. Rest assured that the lack of updates did not stem from some unfortunate event, like my running out of things to say. No, I still have a great number of things to write about. In fact I have about close to 10 different blog entries saved a drafts in my word processor, just waiting for me to finish them. Unfortunately, the problem I have run into with each and every one of them is... well... I don't know!

Without delving into some really boring self exploration or defaulting to an excuse of "writer's block" I am forced to simply leave it with... "sorry for not writing sooner."

This is really intended to be a quick little entry to announce that I am going to, once again, get back into blogging. So, stay tuned!

06 June, 2007

What’s good for the (Spruce) Goose isn’t good for the Connor

At an early age he was reclusive and had a strong fear of germs. This strong fear developed into one of the most well known cases of Mysophobia. He is Howard Hughes, inventor, aviator, billionaire, and quite possibly Autistic.

The world renowned aviator and inventor of the Spruce Goose became so encompassed by his phobia of germs that in his later years, he would seldom leave his room which he deemed as clean. When he did leave, he wore gloves on his hands and facial tissue boxes on his feet. His servers were provided with complex instructions on how to prepare his food without a (perceived) possibility of contamination.

“Will I get sick if my straw touches the table and then I drink through it?” he asked his mother for the third time since sitting down to eat. Unfortunately, this “he” I is not Howard Hughes, not Michael Jackson (another famous person with Mysophobia), nor is it Tony Shalhoub’s character Adrian Monk (from the hit series “Monk”). It was, in fact, my 7 year old Autistic son Connor.

I wish I could say that Connor’s concerns over his straw touching the table was as simple as a child being conscious of cleanliness, but it is merely the tip of a much larger iceberg. My only hope is that we are able to slow the engines and turn the rudder hard enough before this iceberg has the same tragic impact on Connor as another did on the Titanic.

Warning: Some may find the next section to be disturbing or disgusting. I know I do. So if you are easily offended, be forewarned.

I imagine that it might be helpful at this point for me to describe all of the new (having started within the last 2 months) actions Connor has started to do that are signs of Mysophobia. The most pronounced is his spitting. While spitting may seem to be the vilest and dirtiest thing possible, Connor perceives it as a way to rid his mouth of germs. It is not that he spits like a grand champion expectorator, in fact the spit just sort of dribbles out of his mouth, only to be wiped onto his shirt. In a matter of minutes, Connor can completely drench his shirt with his own saliva. Besides the wet shirts, this has caused a rather ill effect on Connor’s health, as the acids in his saliva have created sores under his lower lip.

When ever we have asked Connor about the spitting, he tells us that his mouth touched something, such as a garbage can, the floor, his feet, etc… and he is concerned that if he swallows he will get sick. I could probably understand wanting to spit if my mouth touched the floor or a garbage can. But for Connor, these things never really occurred. If we point out to him that they incident he described never occurred, he simply replies with a question of what would happen if he did do it.

Other signs of his developing Mysophobia can be seen in his recent obsession with using utensils to eat his food. While on the face of it, Connor using utensils is a good thing, it has gone to an extreme in which he refuses to eat common finger foods such as chicken nuggets without the use of utensils. When asked why, he states that his hands might be dirty from touching his pants or the table.

Connor has also become gradually more and more obsessed with washing his hands. At first, I linked this behavior to his love for water and water associated play, but in looking at the frequency and manner in which he washes his hands, it is clearly associated with his feeling dirty or germ laden.

My wife and I have a difference of opinion on the severity of this problem. I believe that this is the start of a rather debilitating downward spiral while she feels that this is simple another passing obsession of Connor’s. It is my hope that I will be shown to be wrong. For the second time since Connor’s diagnosis, we are going to look to an outside source for help in dealing with a behavior (the first was with his eating habits). I will post updates about our progress.

05 June, 2007

Oh my!

Has it really been since February? Oh my!

Well, a lot has happened since February, including a trip to Walt Disney World, a swimming pool, fear of the color blue, and germs. There is so much I have to say!

Over the next week, I will work on putting together a couple of entries about each of these items, so be ready for an onslot of posts.