Tuesday, June 22, 2010

And in The Blue Corner...



Its been another busy month filled with twists and turns along the way. We finally had the verdict from our private assessment done back in February after a drawn out standoff between myself and the HSE to get access to Yanis records. Despite many many promises to provide Solas with information, the letter just wasn't forthcoming. It wasn't from the lack of phoning and contacting them that it took so long but rather a stubborn reluctance for some reason to provide anything in writing to me. Several months of fighting for the information and a stand off in the GPs reception taking witnesses details and copies of correspondence between CAPS (Child & Adolescent Psychiatry Services) and our GP were furnished to shut me up. It takes a lot for me to "lose it" but after being lied to and told that letters had been sent to me which obviously hadn't, I arrived in person to get copies of the letters from CAPS. After they looked in the file, it was apparent that the letters didn't actually exist! To gain access to the files myself, I would have to apply under the Freedom of Information Act and pay for the privilege. Hence the drive to the GPs surgery and my demands that they furnish me with what they had on file and the subsequent standoff! It was a revelation to read that back in Feb 09 they queried atypical autism and ocd to be further assessed but then sat back and did nothing, happy to leave her on medication and take it no further. I now understood why they were so reluctant to let me have the correspondence! I would have taken her for assessment privately a lot sooner had they not sat on this information. They did however, at every meeting we had, raise the subject of AS so I eventually took the bull by the horns and had her assessed myself...

After thorough assessment back in February, we finally got answers to Yanis behaviour and issues. A full Occupational Assessment showed that she has SPD (Sensory Processing Disorder) which when explained to us made so much sense as to why she would be oversensitive to some visual and auditory stimuli. It made sense now why she got so upset if The Elder Lemon would forget to take his ADHD meds and be tapping and clicking and unable to prevent himself doing so... So now I have one who moves and taps uncontrollably at times, and one that cannot tolerate the sound or sight of him doing so... ummm interesting times lol. Certain sounds such as eating noises would be so distressing and distracting for Yani over the years meant that we no longer eat as a family as it really wasn't worth the tears and tantrums that ensued. We used to joke that she would never find someone to marry when shes older as even the sounds of people breathing bother her at times! (This one I can relate to... I could never sleep facing my ex as I would be tempted to put a pillow over his face if he breathed on me hehe) Anyway before I digress, this was one issue that was highlighted and made sense to us. It was also brought to our attention that she has some gross motor difficulties and needs OT to deal with that. I better not joke that she runs like Borat any longer...





With regard to Aspergers Syndrome, the psych assessment showed that she had some features of AS but not enough to warrant a diagnosis so we can put that behind us now and stop wondering if that was a possibility. I now had something to bring back to the team in at CAPS when we met. They had pulled out the big guns and I was now to meet with the head psychiatrist for the South East region. Apologies were issued and verbal admissions made that she should have not been left that long without further investigation. We had another very lengthy meeting where the top man himself spent time with Yani and came back to me with the diagnosis of ADHD Inattentive Type also known as ADD. Some of her symptoms of ADD may be related to her SPD and lethargy but you don't get resource hours in school for SPD so an official diagnosis is being made and letters written for the school so that Yani may get resource for the senior cycle. Meds are also being discussed and will be started during the summer. He also has referred Yani for a full speech and language assessment as feels that she may have a pragmatic language disorder so that requires further investigation. I finally have the HSE sitting up and paying attention that we will fight hard to get what services she needs to make the most of the rest of her schooling. Its just a shame we've had to fight this hard!

So I have that part of the battle sorted.. I thought that I had all the fights done for the coming school year for both Yani and Munchkin, but of course life isn't like that when you've got a SENO that used to steal the jumpers from the makeshift goalposts as a child, but that's another blog post...

14 comments:

Jean said...

Wow....tricky few months indeed! it sounds like you're on the right road now tho xxx

Petunia said...

Thanks Jeanie, now just have to build up some energy again and tackle the school situation for Munchkin xx

Looking for Blue Sky said...

If only Weetabix and vitamins were enough to get us primed for battle every morning. Wishing you all the very best in your battles with the HSE and DOE. It's great to read about your strategies and how you got on, so we can all copy. Wish we didn't have to though.

Andra said...

Talk about uphill battle, at least now thanks to your perserverance Yani will get some intervention for the rest of her schooling. Now steady yourself for the next battle! Good luck xxx

noel said...

great blog Blondie

Smileyfreak said...

This is the first time that I've read your blog,may I say that you should be very proud of yourself and all you have achieved for your children :) Good job!

Petunia said...

@ Candi, theres a lot to be said for the power of Weetabix and Vitamins, but would need a big box to knock some sense into some "professionals"...

@ Andra, thanks chick, its great to have the backup of our group giving me a push when the uphills become difficult

@ Noel, cheers big ears :)

@ Smileyfreak, thanks for your comment and lovely to have a new reader :)


I'm editing the original post as ommited some info from the meeting with the big wig...

KWombles said...

Sounds like it was a rough go to get to the answers you needed. I hope it's smoother from here out.

We're all a bit like that here; each of our tics and stims driving one of the others batty. And often it's me being oversensitive to the noises. If only noise canceling headphones really canceled the noise! :-)

Katy said...

Right behind you all the way((HUGS))

jazzygal said...

Good for you standing up to GP. That's awful that they did nothing.
You're a great mum and you WILL keep going. You just need a little breather to get going again.

You know...I've always hated eating noises! And I sleep with ear plugs, to block out snoring mainly bot also loud breathing too!

xx Jazzy

Jen said...

You know if all this was in a book people would think it was the greatest work of fiction ever and laugh at even the possibility of it being real. It is UNreal that this has been this way for you and Yani. I am glad you finally have answers though. Jen xx

Casdok said...

As if life isnt stressful enough for us with out these kids of battles!

coolkid said...

god hun, what a lot to deal with hun, sounds exhausting and im angry with you

thanks god they are doing something now

xxx

Saplings Rathfarnham said...

You know the autism spectrum isn't that hard really. What is hard is all the different agencies and departments acting out of their own self interest without any regard to the long term stress and outcomes of their behaviour.
Someone once told me the actions of these agencies so richly funded to support us, could be associated with "psychological dissonance" and that "Dissonance can also lead to confirmation bias, the denial of disconfirming evidence, and other ego defense mechanisms."

The fecking feckers xx

Post a Comment

Google analytics