I've spent so much time talking about the details that i haven't spent much time talking about Logan himself. He.......(very long pause)......is such a joy in our life. He makes us laugh by just giggling at nothing or sqealing with delight at something he just watched on t.v. So many autisitc children are mad or show no emotion. Logan is usually pretty happy. He smiles, though not always at the appropriate time. He laughs, though we don't always know what he thinks is funny. He loves to play tickle games, though you have to play the way he wants to and only when he wants to play. He started giving random little hugs several months ago that melt your heart. Ethan our 5 year old tries to engage Logan in certain games. Even though Logan doesn't always want or know how to play, he has learned to tolerate Ethan's prodding without hitting or kicking. And, I think he secretly enjoys Ethan wanting to involve him.
He does through tantrums of varying degrees. Some of his tantrums are just fussing or screaming when he gets frustrated. At other times I have to hold him in a bearhug to keep him from breaking furniture of hurting someone else in the room. I know that these severe tantrums are not intended to really hurt anyone. He just doesn't know a better outlet for his cooped up frustration.
SELF-injurious behavior is common for autisitc people. This can include but is definately not limited to hitting, biting, scratching, head banging, poking, cutting, and hair pulling. Logan didn't start any of these type of behaviors until about November or December of last year (2009). We're not sure if it was a coincidence that it started about the time he started ABA therapy or if this is just what the typically progression of the disorder would be for him. His main injurious behavior is banging or hitting his head. He will bang his head on just about any hard surface he can find - floors, walls, counters, t.v. screens, chairs, etc. How hard he hits his head or how frequently depends on the day. I haven't really been able to pinpoint a specific trigger other than an increase of his frustration. Sometimes he will just walk up to the t.v. and tap his head on it. He does have a very high need for sensory input. To get this input he has a lot of "stimming" behaviors.
The main school of thought on "stimming" is that it helps the person calm themselves and helps them to make sense of other things that are going on around them. Logan has a lot of stims. This is just some of them and some of these help him to get some of the sensory input that he needs like deep pressure on the joints. Logan stims by: jumping in place, non stop, for extended periods of time, spinning around in and office chair, slapping the sides of his head with his hands, grinding his teath, gritting his teeth and humming so that is vibrates through his teeth and mouth, screeching at the top of his lungs, clapping, stomping his feet, slamming his the back of his heels against the floor, watching a ball bounce, watching someone's pant legs move when they walk, watching things fall or splash into water, watching objects bounce or slide across the t.v. screen, slapping hard objects with his hands, and chewing on pacifiers (I've tried several other objects designed to be chewed on and no others work, only the pacifier). I'm sure there are other things too but I can't think of them right now.
One of the other characteristics of autism that Logan has is taste and texture aversions. His diet is pretty self-limited. He likes several different kinds of crackers (Ritz, Cheez-its, Golfish, graham crackers), fruit snacks (but only certain brands - I think because some are harder to chew than others), taco meat from a local fast-food mexican restaurant, kool-aid, diet soda, spaghetti-o's, bananas, grapes, mandarin oranges, canned peaches, popscicles, cupcake icing, a couple of different kinds of chips, pizza, and sometimes meatloaf or hotdogs. Most of these things he likes in waves. He'll eat a lot of one thing for several days in a row and then unpredictably with refuse to eat it for a while and switch to another one of "his foods". We have a lot of trial and error at our house, especially when it comes to food. For some kids, typical and autistic, you can bargain with them, "If you eat a bite of these green beans, then you can have a 1-2 of these fruit snacks". Unfortunately, Logan doesn't understand this concept and will just leave the table throwing a tantrum because he can't eat what he wants. I have tried to force him to eat a food i think he might like but then he'll start gagging. I don't want mealtime to be a constant battle so I don't force the issue. If he won't eat something I just try to find something that he will eat.
Logan loves to watch t.v. He has a couple of shows that he always watches. One is Mickey Mouse Clubhouse and the other is Wipeout. Wipeout is a show that only aired for about a year but he loves it. People try to complete this onsticle course, most of which is over water. Logan loves to see them 'Wipeout' and splash into the water. He also likes watching a couple of other cartoons (like Handy Manny, Max & Ruby, The Backyardigans, and the music videos from Imagination Movers and Happy Monster Band).
Logan also loves to bounce and swing. We have a trampoline in the backyard. He loves to sit in the center and let other people bounce around him. He also loves to be pushed in the swings at the park. He will sit in a swing for hours if we let him. We even got him a hammock to lay in so we can swing him in the house.
Wel, I think that's all for now. I need to get some sleep. I'll try to continue again soon.
Thursday, May 6, 2010
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.
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.
Wednesday, May 5, 2010
A Beginning of Sorts
I have thought about starting this blog for some time now. I seem to be a "major event journal writer", meaning I mainly start writing in my journal when a major event happens. I find it very "cleansing" to write my feelings down on paper, especially when I am flooded with so many during major, life events. I have several small journals chronicling things like my teenage years, break-ups of long term relationships, my marriage to my husband, challenges with infertility, my mother's severe car accident, etc. I now find myself with the journal writing itch. Hopefully, by putting my thoughts and feelings down on paper I will be better able to understand them and deal with them. I doubt anyone will even read this but it helps me and maybe later will help me recognise the progress that Logan and our family makes over time.
This first entry will probably be a little lengthy and may have to come in parts but I have to start somewhere.
My husband and I met through a singles ward at church. He had been married previously and has 3 children from his previous marriage. Andrew is 15 now, Kaitlyn 13, and Matthew is 11. (When Logan was 5 weeks old, David's niece (Brieanna) came to live with us full time. She is 12 right now.) We dated for only about 3 months before we got engaged and then were married on November 10, 2001, in the Dallas Texas Temple. We were married for about 3 1/2 years before we were blessed with our first baby, Ethan, who was born May 11, 2005. We had to go through a few months of fertility treatments before we got pregnant with Ethan. So, when we decided to have a second child we tried for a few months and then had our first appointment to see the specialist again. We were waiting until after a family reunion to start the treatments, but when we got home from the reunion I got what I thought was a stomach bug. Little did I know until a day or so later that it was actually very early morning sickness.
My pregnancy with Logan was fairly uneventful. I did have a "false labor" 2 days before Logan was actually born but I think that was just because I was so anxious to have him that I didn't want to admit that it wasn't the real thing. Delivery was also uneventful and was about the same length as Ethan's. Logan was born February 19, 2007. Logan had a bout of low blood sugar at birth but after some monitoring got better without any treatment. I had a mild case of Post-Pardum Depression for which I took medication. Life progressed and Logan hit most of his milestones either on time or early. Thinking back on him as a baby, I can recognise some things that were probably early warning signs. But, no one wants to think that there is something wrong with their baby and many of them could be explained away. Things that I am now remembering from that time were: babbling early on but progressing into just sounds, limited eye contact, resistant (at times) to affection, did not usually smile back in response to our smiles, etc. I didn't really see much of a problem until about 15 months.
At Logan's 15 month appointment, his doctor had me complete a "Milestones Questionnaire". I began to realize that Logan had not achieved several of the expected milestones. He did not produce word or letter sounds or say any word approximations. He did not want to make eye contact. He didn't play with toys appropriately. He could not perform many of the fine motor skills he should have mastered already. He couldn't/wouldn't point to things he wanted or wave Bye-Bye. I started to get worried. The doctor said that since he had not mastered these skills and then lost them (which happens often in Autistic children) and that his major motor skills seemed on track, that he could just be a late bloomer. We discussed it and decided to wait 3-4 months and see if he was progressing any. I waited about 2 months. I decided that I couldn't stand the constant scrutiny that I was putting him under and the constant stress that David and I were under always wondering. So, back to the doctor we went. He agreed that further testing was needed. He gave me a list of about 5 different appointments (with various different specialists) that I would need to have completed. The first step was to get him seen by an ENT to get his hearing tested. They tried to perform a booth type hearing test and the results were inconclusive because Logan would not cooperate. We then had to have a sedated hearing test called an ABR. Will we waited to have to test we saw a Pediatric Neurologist who said he didn't see anything alarming and to come back and see him if the hearing test was normal. We also started ECI (Early Childhood Intervention) which began providing therapy for him twice a week. We finally had the ABR done around the middle of December 2008. The result was that Logan has bilateral, moderate to severe hearing loss.
David and I were actually a little relieved. An otherwise healthy child, or even those with slight delays, with hearing loss, can usually catch up to their peers after intensive speech therapy. We started the process to begin specialized speech therapy for children with hearing loss, as well as, ordered hearing aids. After a battle with the insurance, Logan received his hearing aids and started therapy within a week of his second birthday.
I have to add that Logan also started a few behaviors that were "puzzling" us and that were explained away, several times, due to his hearing loss. These included repetitive behaviors like arm swinging and jumping in place for extended periods of time, laughing for no apparent reason, wanting to watch the same show (Mickey Mouse Clubhouse) non-stop. He also would do this thing, we later had labeled as "stimming" or self-stimulation, where he would make a hard "O" shape with his mouth while standing on his toes and making jerky finger and arm movements on either side of his head. We were told that he did these things in an attempt to make up for the lack of auditory stimulation that he was receiving.
Therapy continued. We battled with him to keep his hearing aids in his ears and out of his mouth. After about 3 months, he had gotten drastically more accustomed to wearing his hearing aids. But, he had not improved in his "speech". And, in fact, he started have problems during speech therapy. He would get soooo frustrated and throw tantrums almost every session. They decided to add Occupational Therapy to help him get some of his sensory needs addressed. After only a couple of dual therapy sessions we changed speech therapists and slightly modified our method of speech therapy. After a few weeks more, the therapists and audiologist recommended that we have a meeting to discuss Logan's progress (or lack there of).
During our joint meeting I could tell that the therapists were really holding back their opinion on the ultimate problem. After "skirting around" the issue I finally said I WANTED their opinion. Of course they can't give an official diagnosis but they were able to base their opinion on years of experience. I finally just restated what they were trying to tell me....."So, you all feel there is something else going on besides his hearing loss", a series of nods followed, "and you feel, based on your experience, that it is Autism", another series of nods from them and a big sigh from me. I had to pause for a little bit and try to get my emotions under control. I had already managed to cry at several of Logan's previous therapy sessions so I didn't want to waste more time by crying in front of his therapists again. They referred me to a couple of different places. One of which was a Developmental Pediatrician. I called for an appointment and was told that the wait was about 3-4 months. What?!?!?! After several deep breaths and PAGES of paperwork we finally were able to be seen on October 1, 2009.
The doctor was really kind and was great with Logan. She asked numerous questions about his birth, growth and development as an infant and about his progress up to that point. After about an hour she concluded that Logan does have Autism.
I feel it important to explain a few things. At this point David and I were again slightly relieved to have a diagnosis. To many this might seems strange. I mean our child was just diagnosed with a neurological disorder that he will have for the rest of his life, and we were relieved.??? It's not the fact that he has this disorder, it was more that we finally had a REAL diagnosis and had a direction to go in as far as treatment and therapy. Also, prior to this official diagnosis, we had several months of sessions with therapists who hinted at this diagnosis and his regular pediatrician who insisted that we continue to push for more. I think of it like the story of the "Boiled Frog". If you throw a frog into a pot of boiling water, he will instantly jump out. If you put him in a pot of cold water and slowly heat the water to boiling he eventually gets cooked. This official realization came after a time of little hints and many discussions between me, Logan's therapists and doctors, David, and the rest of our family.
OK, so we have a diagnosis or dual diagnosis. How severe is it? With therapy/treatment what is the prognosis? What do we do from here? How will this affect the rest of the family? How will his hearing loss effect his ability to progress? How much will all of this cost? Will insurance cover everything that we need? How will this impact our future as a couple? We had so many months to think about all of this that the list of questions we had come up with seemed to be endless. I need to get to bed, so the answers we got (both good and bad) will have to wait for my next post.
This first entry will probably be a little lengthy and may have to come in parts but I have to start somewhere.
My husband and I met through a singles ward at church. He had been married previously and has 3 children from his previous marriage. Andrew is 15 now, Kaitlyn 13, and Matthew is 11. (When Logan was 5 weeks old, David's niece (Brieanna) came to live with us full time. She is 12 right now.) We dated for only about 3 months before we got engaged and then were married on November 10, 2001, in the Dallas Texas Temple. We were married for about 3 1/2 years before we were blessed with our first baby, Ethan, who was born May 11, 2005. We had to go through a few months of fertility treatments before we got pregnant with Ethan. So, when we decided to have a second child we tried for a few months and then had our first appointment to see the specialist again. We were waiting until after a family reunion to start the treatments, but when we got home from the reunion I got what I thought was a stomach bug. Little did I know until a day or so later that it was actually very early morning sickness.
My pregnancy with Logan was fairly uneventful. I did have a "false labor" 2 days before Logan was actually born but I think that was just because I was so anxious to have him that I didn't want to admit that it wasn't the real thing. Delivery was also uneventful and was about the same length as Ethan's. Logan was born February 19, 2007. Logan had a bout of low blood sugar at birth but after some monitoring got better without any treatment. I had a mild case of Post-Pardum Depression for which I took medication. Life progressed and Logan hit most of his milestones either on time or early. Thinking back on him as a baby, I can recognise some things that were probably early warning signs. But, no one wants to think that there is something wrong with their baby and many of them could be explained away. Things that I am now remembering from that time were: babbling early on but progressing into just sounds, limited eye contact, resistant (at times) to affection, did not usually smile back in response to our smiles, etc. I didn't really see much of a problem until about 15 months.
At Logan's 15 month appointment, his doctor had me complete a "Milestones Questionnaire". I began to realize that Logan had not achieved several of the expected milestones. He did not produce word or letter sounds or say any word approximations. He did not want to make eye contact. He didn't play with toys appropriately. He could not perform many of the fine motor skills he should have mastered already. He couldn't/wouldn't point to things he wanted or wave Bye-Bye. I started to get worried. The doctor said that since he had not mastered these skills and then lost them (which happens often in Autistic children) and that his major motor skills seemed on track, that he could just be a late bloomer. We discussed it and decided to wait 3-4 months and see if he was progressing any. I waited about 2 months. I decided that I couldn't stand the constant scrutiny that I was putting him under and the constant stress that David and I were under always wondering. So, back to the doctor we went. He agreed that further testing was needed. He gave me a list of about 5 different appointments (with various different specialists) that I would need to have completed. The first step was to get him seen by an ENT to get his hearing tested. They tried to perform a booth type hearing test and the results were inconclusive because Logan would not cooperate. We then had to have a sedated hearing test called an ABR. Will we waited to have to test we saw a Pediatric Neurologist who said he didn't see anything alarming and to come back and see him if the hearing test was normal. We also started ECI (Early Childhood Intervention) which began providing therapy for him twice a week. We finally had the ABR done around the middle of December 2008. The result was that Logan has bilateral, moderate to severe hearing loss.
David and I were actually a little relieved. An otherwise healthy child, or even those with slight delays, with hearing loss, can usually catch up to their peers after intensive speech therapy. We started the process to begin specialized speech therapy for children with hearing loss, as well as, ordered hearing aids. After a battle with the insurance, Logan received his hearing aids and started therapy within a week of his second birthday.
I have to add that Logan also started a few behaviors that were "puzzling" us and that were explained away, several times, due to his hearing loss. These included repetitive behaviors like arm swinging and jumping in place for extended periods of time, laughing for no apparent reason, wanting to watch the same show (Mickey Mouse Clubhouse) non-stop. He also would do this thing, we later had labeled as "stimming" or self-stimulation, where he would make a hard "O" shape with his mouth while standing on his toes and making jerky finger and arm movements on either side of his head. We were told that he did these things in an attempt to make up for the lack of auditory stimulation that he was receiving.
Therapy continued. We battled with him to keep his hearing aids in his ears and out of his mouth. After about 3 months, he had gotten drastically more accustomed to wearing his hearing aids. But, he had not improved in his "speech". And, in fact, he started have problems during speech therapy. He would get soooo frustrated and throw tantrums almost every session. They decided to add Occupational Therapy to help him get some of his sensory needs addressed. After only a couple of dual therapy sessions we changed speech therapists and slightly modified our method of speech therapy. After a few weeks more, the therapists and audiologist recommended that we have a meeting to discuss Logan's progress (or lack there of).
During our joint meeting I could tell that the therapists were really holding back their opinion on the ultimate problem. After "skirting around" the issue I finally said I WANTED their opinion. Of course they can't give an official diagnosis but they were able to base their opinion on years of experience. I finally just restated what they were trying to tell me....."So, you all feel there is something else going on besides his hearing loss", a series of nods followed, "and you feel, based on your experience, that it is Autism", another series of nods from them and a big sigh from me. I had to pause for a little bit and try to get my emotions under control. I had already managed to cry at several of Logan's previous therapy sessions so I didn't want to waste more time by crying in front of his therapists again. They referred me to a couple of different places. One of which was a Developmental Pediatrician. I called for an appointment and was told that the wait was about 3-4 months. What?!?!?! After several deep breaths and PAGES of paperwork we finally were able to be seen on October 1, 2009.
The doctor was really kind and was great with Logan. She asked numerous questions about his birth, growth and development as an infant and about his progress up to that point. After about an hour she concluded that Logan does have Autism.
I feel it important to explain a few things. At this point David and I were again slightly relieved to have a diagnosis. To many this might seems strange. I mean our child was just diagnosed with a neurological disorder that he will have for the rest of his life, and we were relieved.??? It's not the fact that he has this disorder, it was more that we finally had a REAL diagnosis and had a direction to go in as far as treatment and therapy. Also, prior to this official diagnosis, we had several months of sessions with therapists who hinted at this diagnosis and his regular pediatrician who insisted that we continue to push for more. I think of it like the story of the "Boiled Frog". If you throw a frog into a pot of boiling water, he will instantly jump out. If you put him in a pot of cold water and slowly heat the water to boiling he eventually gets cooked. This official realization came after a time of little hints and many discussions between me, Logan's therapists and doctors, David, and the rest of our family.
OK, so we have a diagnosis or dual diagnosis. How severe is it? With therapy/treatment what is the prognosis? What do we do from here? How will this affect the rest of the family? How will his hearing loss effect his ability to progress? How much will all of this cost? Will insurance cover everything that we need? How will this impact our future as a couple? We had so many months to think about all of this that the list of questions we had come up with seemed to be endless. I need to get to bed, so the answers we got (both good and bad) will have to wait for my next post.
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