09 April, 2006

"Let There Be Light!" Part II

Well, with the excitement of my birthday and the day without rain (finally) yesterday, I didn't get to sit down and write part two. So without further delay (excuse) here it is.

Realizing that getting into the regional center might take a while and that without a referral or a diagnosis, we would most likely be at the bottom of the list for some time. So my wife and I decided to first go to Connor’s pediatrician to get a referral. My wife made the appointment and I took the necessary time off of work. A few days before the appointment, we sat down and discussed what we would say and how we would approach this. The first thing that we agreed on was that we would not mention to the Doctor that we had suspicions of Autism. We would, instead, present our concerns and see what the Doctor’s opinion was. So, we spent some time writing down our concerns, trying to get them on paper so that we wouldn’t miss anything.

The appointment with Connor’s pediatrician went as we expected it. After presenting our concerns, the Doctor stated that he suspected that Connor may have Autism. He further explained that he could not make an official diagnosis, but would instead refer us to the regional center, where they could get Connor properly evaluated and diagnosed. Everything was happening as we had planned. It felt good to be in some semblance of control.

A few weeks after the appointment with the pediatrician, we had an appointment set up with the intake coordinator for the regional center. My wife and I did not know what to expect from this meeting, so we were a little nervous, to say the least. Fortunately enough, the person we met with was extremely helpful. She explained that, while she could do a preliminary evaluation of Connor to see if he was likely to need their assistance, she could not provide a diagnosis (mirroring what the pediatrician had explained) as that was only available from a psychiatrist. In her initial evaluation of Connor, she commented that there were certainly signs of Autism and that we needed to move forward with an official diagnosis. She did, however, provide us with some unexpected news that put a rush on things. In particular, there were a number of services that would no longer be available to Connor if he became part of the program past his 4th birthday. Being that Connor was only 2 months shy of that date, we needed a diagnosis soon.

The intake coordinator for the regional center also explained that they would only accept a diagnosis of Autism from several sources. The first being one of their own psychiatrists. Unfortunately, the wait time for an appointment with one of the staff psychiatrists was about 3-6 months, putting us past the 4th birthday and limiting the services available to Connor. We both agreed that we didn’t want that. Our next option was to travel to Stanford and have one of their Autism Specialist evaluate Connor. The last option was to have Connor evaluated by a very well respected psychiatrist in San Jose.

After some talking, we decided that our best bet was to set up an appointment with the psychiatrist in San Jose. In hind site, this was one of the smartest decisions we could have made. The appointment was a mere 2 weeks after our meeting with the regional center, so there was little time to slow down and think about things. We, my wife and I, did talk a little about “what it…”. Questions about things like, “What if he determines that Connor isn’t Autistic?” and “What if he determines that Connor is Autistic?” were the only topics we discussed over the two week period.

Now, before I talk about the appointment with the psychiatrist, I need to explain a little about Connor. You see, he is highly intelligent and has an amazing ability to act neurotypical for short periods of time. That has been a mixed blessing, as it frequently leads to people believing that he was misdiagnosed with Autism. It is a blessing and a curse to a certain extent. But talking about that aspect is something I will save for a latter blog entry.

On to the appointment… We had been properly warned that the evaluation would take a good part of the day and that we should expect to be in San Jose for about 6 hours. This meant that Aiden needed to be watched by someone. I am thankful, to this day, to our friend who graciously watched him for us.

The evaluation itself was rather interesting and included an interview with my wife and I, discussing our concerns and our experiences with Connor. There was also some time spent watching Connor doing imaginative play on his own, with his mom and I, and with the psychiatrist. From there we went on to testing for learning delays and disabilities. Finally, after a number of different things, which all are more of a blur at this point, we were done. The psychiatrist came into the room to discuss things with us.

He started off explaining that Connor was rather unique. Specifically, he commented on Connor’s initial appearance of being normal. He went so far as to say that when he first met Connor and was talking with him, he started to form an opinion that he was not Autistic and really didn’t show signs of anything. But that opinion soon changed. As he interacted with Connor more, and observed Connor’s interactions with his mother and I, the Autism started to show. The psychiatrist explained that Connor most certainly met the criteria for Autism, but was also extremely high functioning.

Hearing the diagnosis from the psychiatrist’s mouth sent a feeling of relief through both my wife and I. We looked at each other, relieved that we were not bad parents trying to press the diagnosis of disorder onto our son. We were not bad parents at all. We had been right in our feelings. Unfortunately, after the relief subsided, we both began to gain a feeling of being overwhelmed. Until this point, it was all speculation… Nothing we could do without knowing for sure. Now that we knew, we had so much to do.

As soon as we received a copy of the diagnosis from the psychiatrist, we went straight to the regional center and get started on the paperwork for getting services for Connor. Like a small pebble sized piece of ice rolling down a snow covered hill, this process was beginning to pick up speed and mass… snowballing.

As things progressed through the regional center, we were scheduled to take a mandatory course on ABA offered by them. We were excited about this. We figured that there would be other parents at the course who we could talk with about this… who were in the same situation. Unfortunately, we were somewhat saddened to find that the parents in attendance had very different situations. In fact we were the only parents there dealing with Autism. This started our feelings of being on our own in this adventure. It was tough for a number of weeks. Not only did we feel alone, but we also struggled to understand what exactly it really meant to have Autism. There were so many myths about Autism that we needed to be able to dismiss.

I remember coming home to my wife one evening and seeing her in tears. She was thinking about all the depictions of an Autistic person as being devoid of sympathy and emotion… it hurt her deeply to think that she would never be able to have those great emotions from Connor. I knew that it was not true… but helping her to understand that was tough. I began to really feel the same feelings of being alone in this battle that we had in the ABA class. Adding even more to the isolation was the increasing number of people that didn’t believe that Connor was Autistic. It came to a point that my wife and I, only half jokingly, stated that we would simply carry around a copy of Connor’s diagnosis for everyone to read.

Let me tell you, there is little worse than feeling alone in such a struggle. That feeling being compounded by the distrust of family and friends was truly a low for us.

Over time, we were able to educate our family and friends and they began to accept it, or at least they stopped challenging us on it.

As I look back at the time between when we started to suspect Connor had Autism and where we are today, I see so many places where I would have loved to have been able to read someone’s story about their trials… Just knowing that others went through the same self doubt, the same odd feeling of happiness that there was a diagnosis, and the feeling of being alone would have helped.

That is one of the reasons I started this blog. I hated the feeling of being alone and it is my hope that even if it is but one parent out there who is going through what we went through that, in reading this, knows that they are not crazy for having feelings of self doubt and feelings of happiness. And, most importantly, I can help them in knowing that they are not alone in this.


Anonymous jedi's sis said...

I being one of those famliy members who at first did not understand and accept, now see the journey and the true sacrafices you and Juliann have made for Connor. You two are blessed to have those boys but more important they are blessed to have you. Stay strong for them, and remember your family now understands (most of us), accepts (all of us I think) and is learning with you. Love ya!

04 May, 2006 23:44  

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