The same topic cropped up at two of these appointments, and that is of the lack of choice of who we get to see, and the difficulties imposed if you attempt to be transferred to another specialist.
After many, many years of seeing these specialists, I now know the ones worth their salt. The ones that work for the children that they are assigned, and not just sit there like automated robots, ticking boxes, not listening to you, and who seem to be as enthusiastic as a person waiting in the dentist chair.
We saw a pediatrician for J, and she told me she is scaling her work load back quite dramatically, as she is going to take on more of the paperwork side rather than the front line work. I did tell her how much people like her were needed in this line of work, as she has been the only one I have ever fully trusted with her opinion, advice, recommendations, and attitude. It took us three pediatricians until we were recommended her, and it took a few words from me, via telephone to the pediatric offices, to secure an initial appointment with her in the first place. The day we met her was like a breath of fresh air. She fully 'got' J, she totally respected him, and she spoke with passion and a wealth of knowledge - she later told me she has been working with children with autism for over 25 years, and this shows.
Then earlier this week I took my youngest son W to see a speech therapist. W, as I have blogged here (click to open in a new window) before about, has Nystagmus, which causes him to have a severe vision impairment.
We had seen a speech therapist before, via the NHS, and this woman told me that he didn't need any input from their service for a year or so - I later found out that the funding and resources for SALT (speech and language therapy) in my area is chronically poor, and that this therapist has no choice but to push back nearly a third of those needing immediate help, as they just cannot facilitate us all.
The therapist we saw this week was one recommended via W and O's (my middle son) independent (fee paying) school. This is not done under the NHS, and it means I meet the costs myself.
I am thankful I did, as after an incredibly intense and thorough assessment , it appears that W doesn't have a speech delay because of his eyes, rather it's an oral motor delay -something to do with limited movement of his tongue, and also a break in the line of what he hears, to what he speaks.
I was devastated that I had missed this, as I have become such an advocate for my children, and to not realize that he had limited tongue movement made me feel inadequate as a parent.
This could be totally unconnected to his Nystagmus, but as the Nystagmus specialist said last year, he believes that W doesn't have 'classic' congenital, idiopathic Nystagmus, but that there is something else, and that the nystagmus is just a part of it, not the main problem. He also said he doesn't believe that J and O's disabilities are connected and that it is just the way it is.
It has made me question as to whether there is a complete break in the pathways between the ears/eyes/brain/mouth, and that is why he is having difficulties with speech.
Now when I say W has a speech delay, it is not the same as J's, not the same at all. J has no interest in communicating unless it is a request for food, drink, an item, or to tell me he is unhappy about something. His words have become clearer over time, but the will to talk is not there, and that means no conversations, no chit chats, no interest in my day, no interest in telling me his day - although I don't believe he has the capability to tell me these things, as the level of his learning difficulties would suggest this isn't possible.
W wants to talk, and does so. He asks questions, mainly "why?" at the moment, to every single thing!
He can answer questions, tell you what he's done at kindergarten (Kindy as we call it), wants to chat to people, and basically has the skills expected of a neuro typical child. I don't believe he has any form of autism or Aspergers, and so his speech delay is one of the will being there, it's just the way is struggling. He tries so hard. And he gets so frustrated. It breaks my heart at times, which is why I decided enough was enough, and that if the NHS couldn't provide the help he so desperately needs, I will pay for it myself, and forgo more little luxuries to pay for this. Don't gain the impression I am rich. The boys school fees are no where near what you have seen published by tabloid papers such as the Daily Mail. For us, cutting back a lot on simple things such as haircuts (I do my own and the boys), not going out to eat, not buying non essential items, and being a savvy shopper, I can afford to pay for them.
So it has clicked with me ; why should we put up with poor specialists and poor treatment? Who says that the pediatrician you are assigned is the only one you can see? If you don't gel with them, or they just seem inadequate in their skills, contact your local pediatric office and get a new one. Don't settle for somebody that has no interest in your child, and merely mutters a few words, ticks a few boxes, and sends you on your way for another six months.
If you clicked the link above to see my previous posts about W and his Nystagmus ( this is the link again - here ), you will read about the pediatrician he first saw that was more concerned about his bowel movements than that of his vision loss!!)
The basis of the NHS is fantastic. Most of the front line workers are passionate and caring (bar some of course who I have mentioned). It is certain management areas and the government that is letting the rest down. Underfunding the most desperately needs resources, but pouring cash into areas such as cosmetic surgery that is not life or death, rather an 18 year old girl who wants bigger breasts.
When you read about the elderly being left in hospital corridors for hours/days, young adults with learning difficulties, who live in special accommodation, starved to death because no one bothered to bring them food and help feed them (this is via agencies that are paid to visit and help them!), people dying in their bed on a ward, and not being discovered for 24-48 hours - it is bad! It is poor. It is disgusting. Priorities of those in power are skewed, and it has to stop, and it must change.
But as I digressed slightly there on my soap box, the point I was trying to make was ; I have decided to withdraw W from the NHS pediatric system, and have found a private pediatric Dr who was recommended by several parents, and other specialists. Yes I will have to pay for his service, but if it means W is treated with respect, understanding, and thought, then it is worth it for me.
We are due to meet with the Nystagmus specialist again in a few weeks, and I am hoping he will look further into W and what he believes he might have. At present I am thinking ocular albinism, but that's just me and my Google head doing lots of reading and research - this specialist has taken up a five year stay, to research Nystagmus, and he has been published several times (I have read some of his papers), so I trust he will do his best by W and if it's something else W has got, I am positive he will find it.
I must just add that even though I am keen to delve into whether I am to blame, and that I am carrying a genetic disorder, it doesn't change anything about my boys. What it will do is give power and choice to them when they start a family. I am not a label fanatic, more that we are still waiting for the genetic tests to come back from the major study we were asked to join (three years ago), and that is all. You can read more about this from my previous posts, here, here, and here (I do like my links!)
Finally, as a witty ending to my mini moan, I created this little ecard which I think is fairly apt for most of us special mums (and dads too, but 'dad' doesn't rhyme!).....
