Problems We Faced
A major issue we had was in March of 1996. Our older son Joshua, had a serious but rare condition called Idiopathic Thrombocytopenia Purpura (ITP), after he had a virus. Something went haywire and his body was killing its own platelets (the part that makes it clot) as it fought the virus and he was bleeding under the skin anywhere you touched him. His platelet count was LESS than one percent of what it was supposed to be, and that is not a good thing. He spent two days in the hospital to recieve IV medications that cost $1800 dollars a dose, and was still at risk for stroke or "bleeding out" for almost a year after that because his body had to manufacture more platelets. Thankfully, the medications worked and his blood counts were in the low normal range at the end of a year! After that illness, he began having serious behavior problems and much time was spent tending to him and trying to figure out what was causing his difficulties. He always was a strong-willed and high energy type child. We had laughed because when we moved his daycare teacher gave us the book "How to Raise Your Strong-Willed Child" by Dr. Dobson......now that should tell you something! The behavior we saw after this illness was worse than it ever was and it wasn't funny anymore. He was moody, impulsive and aggressive and the kids at daycare were scared of him. He also has asthma and had been on nebulizer treatments 3-4 times a day, everyday for the past three and a half years. Unfortunately, one of the major side effects of the asthma meds was increased activity and nervousness so we thought that was part of the issue.
So, as you can imagine, squeezing in time to work with Jake in a structured setting was quite difficult. I did work with him in a natural setting for everything we did; from cooking, washing and folding clothes, and playing dress up, to working in the garden. This is exactly what AVT is all about, but the teacher was upset that he didn't get a structured 30-60 minute session each day. At that time, I was working full time as an RN on the evening shift. When I left for work, Jake was walking in the door from school and when I returned at night he was asleep. On his days out of school I worked with him before work, as well as weekends. As any child, Jake had peaks and platuea's in his progress but I felt a great deal of guilt because I had to work to have medical insurance. It was compounded by the fact that we got the impression that Jake's teacher felt we weren't good parents because he wasn't progressing in spoken language the way he was expected to based on his audiogram. If I reported that he talked more around the kids in the neighborhood I felt like they thought I was lying. Now, why would I do that??????
In April of 1997, Jake's progress in speaking had stopped and his auditory skills regressed dramatically. We went in for another audiogram and found that his hearing loss had progressed to profound in the left ear and severe to profound in the right. There was up to a 20dB loss in some of the high frequencies. His hearing aids were re-calibrated and we went on our way. In less than a month, we were back at the audiologist's because he still didn't seem to hear as well as he had before. He had again lost more hearing and his hearing aids were re-calibrated again.
There was a meeting at the end of the school year to talk about his progress that was very enlightening. It was suggested we consider placing him in a more structured setting like an oral deaf school. Because we apparently weren't able to do "what it takes" to have a listening, speaking deaf child since he had progressed only about 4-6 months worth of expressive language in 18 months. It was true that we couldn't give him the undivided attention he needed because we have another son to care for. What did they expect us to do? Give him away, or just ignore him? Here we are with two children, one deaf and the other with obvious behavior issues and we have this unmarried, childless teacher telling us how to raise kids. Hmmm, interesting......
It had never been said out loud but it was implied to us several times that Jake was mis-diagnosed and didn't really have auditory neuropathy. His teacher stated, "He can't be hearing some times and not others because the nerve either works or it doesn't." I'll tell you, that is the last time I ever mentioned a hearing moment to her.
We felt that she thought we were idiots and in denial about Jake being deaf. I was crushed and felt like a total failure as a parent and wound up in a deep depression. I knew that I wasn't the perfect Mom, but I was doing the best I could at that moment in time. After this meeting we decided to start cueing to Jake again. I couldn't cue very fast, no matter how hard I tried because of flexability issues with my hands and I felt that they thought I didn't try hard enough. My husband is one of those people that can't get the phonetic code and rarely cued to Jake and had little patience for doing the detailed and tedious work that had to be done.
Jake was growing up so fast and his hair had came back curly. He was so alert and interested in everything but was falling further behind his peers. The neighbors child was a year younger but much more advanced in language. It was very depressing and sad to me that I could not help my child. Because of all of these issues, I wound up taking a three month medical leave for severe depression. I concentrated on Jake and his language issues and Josh and his behavior issues for that time, ignoring my own needs. I paid for that later on down the road. I started working on a part-time basis when I returned that fall, in order to spend more time with my family, especially Jake. I still feel a tremendous amount of guilt over not being the perfect parent that Jake needed, but that is water under the bridge and I can't change it now. I can't look back, only move forward.
We continued therapy with Jake and he attended the preschool for half a day three days a week with a one hour parent training session once a week. His progress was come and go for a long time. He looks so sweet and innocent in this picture but he was very sensitive to change and the school kept having changes in teachers, assistants and/or speech pathologists. He was acting out at school and getting into trouble. He was strong-willed, to say the least. He figured that if you don't want to do therapy, you get in trouble and go to time out. When he realized that time out was longer if you didn't sit still in the chair, he didn't sit. Many times our sessions with the teacher were wasted because of his behavior. We went through a period of restrained time outs, trying to get it into his head that you are supposed to sit still in the time out chair. I finally realized that he was manipulating us and had to use very strict rules in sessions. We slowly saw an improvement in behavior over the next months. I'd also like to add here that we finally got some answers about our older sons behavior issues that fall. He was tested by a child psychologist and was found to have Attention Deficit Hyperactivity Disorder (ADHD) and Oppositional Defiant Disorder (ODD), which is something you REALLY don't want your child to have. If you read about ODD you can probably imagine what a living hell it was for us, not knowing why he acted like this and feeling like failures as parents. To outsiders that see a child act like that, they think that parent's are lax and don't discipline their kids, they make snide remarks just within earshot, and I was actually told by a complete stranger that I needed to "whip his butt real good and he will stop." Can you believe that? It was upsetting to get a diagnosis but it was also a huge relief to know that he really couldn't control his outbursts without therapy.
I will go back to Jake's issues but I felt that I needed to add the information about Josh to give a true picture of what our life was really like behind closed doors.
In November of 1997, Jake's aided audiogram looked pretty good, but I still wasn't convinced that he could understand speech just because he heard some tone at 25dB. We talked of the cochlear implant at this time, but he still wasn't a candidate because he had a severe to profound loss in his right ear and the guidelines were strict about being profoundly deaf. We met with our audiologist and learned about all the different models available, just in case. We also told her that we were afraid of the implant because of his original diagnosis of auditory neuropathy. The REALLY interesting thing was that we were told that he didn't fit the profile for Auditory Neuropathy because, according to his teacher, he was making progress in language acquisition and was performing better than expected for his audiogram. This upset me to no end because it had only been a few months before this that we were told by another teacher that he wasn't progressing well at all. Besides, we had documentation that he hadn't made a years worth of progress in spoken language in two years time.
Jake continued to make slow progress with expressive language. He could no longer make the b and the p sound. We couldn't figure out why he could still make the s, sh, ch, and k sounds and not the early developing sounds anymore. For months we had tried to get real ear measurements, but he wouldn't cooperate with us. He was a wonderful at testing in the booth but when they tried to put that electrode in his ear he wasn't so nice.
Our audiologist was wonderful and very patient with him during this time. Finally, he was cooperative and we were able to obtain the real ear measurements. We were all quite shocked to learn that he wasn't getting anything but jumble above 1500 hertz so the aids were recalibrated and the volume decreased. This explained why he lost his early developing consonant sounds, P and B. The high frequencies were essentially loud static and drowning out the low frequencies. He started doing somewhat better after that, but we were still stressed out because he wasn't catching up fast enough. We were at our wits end about what to do. But we knew that something had to be done to help our son. We even tried to get him to cue to help get his point across but he only cued the bare essentials. He just kept trying to talk and getting more and more frustrated with us and himself when he wasn't understood.