Since Monday things have been busy for us, but relatively calm for Elias. He has been a great and playful spirit this week after bouncing back from not feeling so good last week. Whatever the issue was seems to have dissipated. On Tuesday Elias had one of those days where he just wanted to be held ALL day long. If you put him down, which is necessary unfortunately when you are alone with him when you have to leave the room, he would cry and fuss. This was a bit out of character for him. He normally likes a little bit of holding time and then is squirming to get down. Whatever the reason on this particular day it was nice. Wednesday he back to normal, so who knows. That is the way Elias is, just when you figure him out he switches up on you :)
The reason we have been so busy this week centers around the whole hearing issue again. We will be so glad when we are done with this, it is getting a might ridiculous. We are still trying to get the ABR testing done, but no one wants to seem to do it and we do not know why. I received a phone call from Elias surgeon last Thursday afternoon. He has been helping us on the hospital end of coordinating audiology and the O.R. He gave me a direct phone number to the ENT we have been trying to get into see. He explained that he spoke with someone there and they said that the ENT would actually do the ABR during the visit. Sounded wonderful to me, but of course nothing is that easy. I called immediately and was shuffled from person to person and ultimately spoke with the ENT nurse practitioner. She tried to tell me that they do not do the testing during appointments because the duration is too long and he is the only ENT for pediatrics. I explained our problems and the run around we have been getting and added how the State is really becoming aggressive about ensuring this is done timely. She did at least feel bad about all we have been through trying to get this done and asked if she could call me back on Tuesday, after she spoke with some people. I reluctantly agreed. Tuesday came and went, no phone call which seems to be typically this days. So I called Wednesday morning first thing. She apologized and informed me that the audiologist there told her that we needed to go to a Hearing & Speech Center. She had spoken with the audiologist there and they agreed the equipment they have there is better suited for Elias. :SIGH: I politely informed the nurse that we were initially referred to them in December and they informed us that they had the same equipment and were reluctant to take Elias because of his trach and the fact that they lack medical personnel or emergency protocols. With that said, I wanted to know what was so different this time around? I also told her I did not understand why the hospital was shunning their responsibility by law according to the state. She had no response, but then she backtracked and told me if doing the test during a surgery was what we wanted then they would attempt to accommodate. I was tired of playing the game at that point and told her I would discuss this with my wife and get back to her. So, apparently somewhere down the line between our surgeon seemingly working it out and today the position of the hospital is to now pass the buck to someone else and no one can really give us a clear explanation as to why. I have contacted my point person overseeing the case at the state to inform her of the latest in this ongoing episode and asked her what direction or step to pursue next.
I wish I could say that is all with this issue, but it is not. The other aspect to this problem is with Infant & Toddlers providing the proper intervention services. The nurse that directs Elias case has from the beginning shown no interest in providing hearing impaired services despite our voicing concern that it is a distinct possibility. All we get are excuses that usually circle around to ending with, "it is not age appropriate." I have the same point person at the state assisting us with this as well. She has now had several phone conversations with the team. She was able to at least get the Hearing teacher to come out, but was not satisfied with the results and lack of services recommended. So again she spoke with individuals and it appeared on Tuesday, after I received an email, that she had finally made progress. We were told the nurse was to contact us to add the hearing teacher services to the Individual Family Service Plan (IFSP). The nurse came out yesterday for a meeting, but what she was offering did not quite match up to what I had been told. When I expressed that sentiment to her she seemed confused and mumbled her line about being age appropriate. She asked me to explain what issues I was concerned with. I pulled out a hand out I received from the hearing teacher when she visited a few weeks ago. There was a brief paragraph entitled "Windows of Opportunity" I would like to share a brief segment, which I had highlighted and showed the nurse.
"....The early years are a critical time for learning language. Getting help for your child as early as possible maximizes his or her window of opportunity to learn language. Research has shown that children who begin receiving appropriate help before 6 months of age are more likely to learn language at a pace comparable to that of children whose hearing is normal. So take advantage of the service systems that exist to help your child and you."
(taken from the US Department of Education material entitled "Opening Doors: Technology & Communication Options for Children With Hearing Loss)
After reading this to her I expanded by stating, " My concern is that you have from the beginning, including today, sited age appropriation as an excuse. I do not understand why we would not proceed with services based on the worst case scenario given our difficulties in obtaining the proper testing for a confirmed diagnosis. At that time we can adjust services to better fit his needs if the prognosis is better than we predicted. The state agrees that the services should have been started from the time we entered the program. This is why she has been in direct contact with you and the team, but somewhere along the line we all seem to have different ideas on what should be happening in terms of interventions. This segment I read more than qualifies the need for intervention. We have lost almost 5 months of service Elias could have benefited greatly if would have had them. We did express our concerns and the need for additional service, but they were ignored or pushed to the side and now Elias potentially has missed out on this window of opportunity without a valid reason." Her response was simply a stare and asked me what I expected. I told her to pretend for a moment this was the first time we ever met and we knew for 100% and had a diagnosis of Elias being profoundly deaf, what services for language enrichment would you be recommending? She had no response! She did not know, but refused to admit that when I confronted her with that. He job is to provide guidance towards identifying services a child needs when they enter the program. She obviously missed this very important item despite us continually expressing it as a concern. Unfortunately, the way the meeting ended was not with a service to accommodate Elias. There was an action plan for the Hearing teacher to contact me within one week to discuss why we would not proceed as if he is profoundly deaf and give strong evidence if she disagreed with that proceeding without a definitive diagnosis. This was extremely frustrating and disappointing considering what our expectations were lead to believe going into this meeting. It is so mind boggling why everything has to be a battle with so much time and energy wasted. We just want what Elias needs to help him, but we are getting tired of playing so nice when we are being told over and over he should be getting more.