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.
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