Questions, Questions, and More Questions

The list of questions that we have about Autism, Logan's future, our family's future, and so many more things, seems to just continue to grow. With each "answer we get, we end up adding more questions. Here are some of the answers we received.

How severe is his Autism and what is the probability of "recovery?
The first part of this question was fairly easy to determine. When evaluating a child for Autism there is a questionnaire (or several in some cases) that can be completed. There are 3-4 sections: socialization (how well he interacts with those around him), communication - broken into two parts, expressive (how he communicates what he wants or feels) and receptive (how well he understands what is communicated to him), (the next two I'm not sure I remember correctly) verbal communication, and emotional expression. Because he is nonverbal he could not be scored in that section. So with the scores from the other sections he received the highest Moderate range score that you can get before you are classified as severe. Because most Autistic children have some verbal manifestation of the disorder I consider him severe. It is VERY likely that if he were verbal he would get at least 1 point in that section which would put him in the severe category. Some might say, "Why would you want to classify your son as severe?", or even "Why does it matter whether he is considered moderate or severe?". My answer is that it helps others to understand the degree of challenge he has. It also helps us to qualify for more services and seems to get people to work a little harder to help him. It also seems to change the way people react to him and at times they tend to give him a little more latitude for his behaviors. To me it doesn't REALLY matter. Logan is just Logan and we learn each day how to better accept him for who he is.

For the second part of this question - possibility of recovery? ....where do I begin. Some people say, "Once you've met one child with Autism you have met ONE child with Autism. There are numerous characteristics of Autism and many varying degrees of each of these characteristics. There are also just as many combinations of these charateristics. Then you add Logan's hearing loss on top of all of this and......the short answer is no one knows. This is one of the hardest parts of all of this. When we found out about his hearing loss the doctors and therapists were confident that, with enough therapy and time, he would learn to talk and catch up with his peers. This is because most kids with "disabilities" like hearing loss have the same response to therapy (barring any other medical issues). But, since Autism is so individualized in terms of severity of symptoms, (i believe) cause, and age of diagnosis, it is almost impossible for ANYONE to tell us what his true outcome will be. I'll probably have to dedicate an entire post to this topic. There are so many thoughts and emotions tied up in this part of our lives that I could talk about it for a long time.

Where do/did we go from here, now that we have an official diagnosis?
This is another place where things can get complicated. There are just about as many ideas of how to treat and "cure" Autism as there are kids with Autism. I read numerous articles (and continue to research options just about weekly) over the few months before his diagnosis and for the few weeks afterward. The Developmental Pediatrician suggested Applied Behavioral Analysis (ABA) therapy. She also cautioned me on collecting too much information. She said the options and ideas can be very overwhelming. She suggested that David and I discuss each idea and determine what we, as a couple and family, will be able to handle. Some of the treatments out there are just that...out there. I read blogs about some mothers/families spending hours upon hours everyday doing therapy, taking supplements, and conducting various different treatments. Most of these things cost hundreds upon thousands of dollars and insurance does not usually cover them. This is because most treatments have gone through little to no documented research and results are very difficult to analyze due to uncontrollable variables in every situation.

We found a place where we could enroll Logan in ABA therapy for a huge discount. It is a nonprofit foundation specifically for autistic children. We also found out that the school district that we live in offers a PPCD class for kids 3 years old and up. PPCD is basically a special needs pre-K. Since Logan was 4 months away from 3, we started the paperwork and interview process for the school and began the ABA therapy in the meantime. ABA therapy is a one on one therapy that teaches the child a very specific task that is rewarded (in varying degrees depending upon the task and time in therapy). One of the first things Logan learned was to put a block in a bucket. I know, I know it sounds pretty silly. But, once he understood what was expected and that he got to watch a munte of so of his favorite show, he quickly learned that task. The idea is to gradually work them into completing tasks that, once put together in succession, accomplished a much larger goal. Teaching him to teaching him to shape his mouth in a certain way might lead to him learning how to say a certain sound or form a certain word. Teaching him to put his hand on his head might help him learn how to dress himself, etc. We had some reservations about it. We didn't want him to turn into a robot but he seemed to progress in some tasks fairly quickly. I do believe that if we had both the time and money for him to do ABA ful-time he would probably do very well. But, even at $15 and hour, 30-40 hours a week is a lot of money and Logan was usually worn out with 9 hours a week. Not to mention that it really didn't give me any extra time to spend with Ethan. We did ABA until Logan was able to start the PPCD program with the school.

David and I have decided that there seems to be two main differences between ABA and PPCD. One is that ABA is one-on-one the entire therapy session. PPCD is mainly a group setting, with the exception of about 45 minutes of one-on-one. This leads into the other main difference....ABA focuses on accomplishing tasks and learning skills. PPCD has more of a focus on socialization and getting him used to being around other kids and paying attention like he would need to in school. Both have definite pros and cons. But, since PPCD is free and much closer we don't have much of a choice.

Now to address the million dollar question (literally).
It has been estimated that a family with an autistic child will spend need to spend several million dollars over the child's lifetime (above the normal costs incurred by having and raising children). I'm sure that amount would be the same for any family with a special needs child. There are so many things to consider. For at least the first several years there is health insurance, therapy, specialized child care, home and/or car modifications, special toys or learning aids, (in our case) hearing aids, and the list goes on and on. *On a side note....because of a mistake made by someone at the insurance company, they paid for his hearing aids this first time. But, hearing aids usually only last 3-5 years so in a few years we may be looking at spending $3,000-$5,000 on hearing aids, not to mention he will need new earmolds (the part that fits into the ear) about once or twice a year. The earmold cost about $175 each ear.* As our children grow-up we will have to consider making additional home and car modifications (I'll explain more about this later), special schooling, assistive care, potentially group housing, additional medical coverage, etc.

I think this should cover a few of the main questions and concern we have been face with over the last year or so. I know that I am in no way finished expressing the numerous feelings I have had in regards to this "storm of life", but I already am feeling some added peace.