Never Too Late To Educate...

The sun has set on the Summer and mothers and fathers all over Ireland are breathing a collective sigh of relief that the little monsters, sorry our beloved offspring, have returned to the structure and routine of the school year. Summer holidays, while relieving us of the dreaded school runs, can be a time of stress when you have a bored child bouncing off the walls. Personally I think the holidays are far too long but there is an element of jealousy there when I look at the Gruesome Twosome roll into the kitchen in the afternoon while I've been up since stupid o'clock being subjected to Peppa the Precocious Piggy and other such delights that we're all familiar with. I would gladly buy Dora a sat nav at this stage rather than listen to her singing...



This year is particularly poignant for me as my eldest heads off to spread his wings. As immensely proud of him as I am for nailing the Leaving Certificate and securing his place in Trinity College, its a strange moment to let go after so many years. His bags and belongings have been packed up and I dutifully drove him to Dublin at the weekend to start a new chapter of his life. Thankfully my parents live there so have been able to transition him slowly as he'll go torment them with his bombsite room that smells of cadavers.. why oh why do all teenage boys room smell so bad? Answers on a postcard please and a prize for anyone who can solve this lifelong riddle...

So that leaves two still in the proverbial nest. I'll still be kept busy trying to secure services and resource for the little birdies left in my care. Yani has started the senior cycle now and today we started medication for her ADD. Hopefully it's as successful in helping her concentration as it was with her big brother. She's a very clever and capable girl and its frustrating when her ADD and SPD cause such difficulty for her. She described it quite aptly at her appt with CAPS today as sitting reading the text and willing the words to go in... the information reaches her eyes and seems to bounce back to the page shes reading. Classic problem that many of our children have when it comes to concentrating and taking in the information needed to study. Fingers toes and eyes crossed that the medication filters out the extra stimulus that distract and help with her auditory processing.



Munchkin has had an interesting start to the school year... She's moved up to the number one spot on the waiting list for our local unit but in the meantime she's attending a NT preschool. For the most part its going extremely well and she skips in the door in the mornings with a smile on her face. My heart dropped when called over by the preschool leader last week to say that they were having problems... trying to escape from the playground, stripping, hitting and running around during circle time to name a few. I have a journal in school that they are filling in every behaviour and problem they are encountering with her so that I have a written record to show the SENO when she moves to the unit to make our case for an SNA stronger. Watch this space as they say.

And me? Well I'm heading back to school too as I'm a firm believer that its never too late in life to learn something new. It's only part time but nervously anticipating being a student again. I better go buy myself a lunchbox and get an apple for the teacher while I'm at it :)

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...

It's all starting to make sense now...

February was a tough month for our house. I received the new OT report for Munchkin which showed up areas that she had problems in that I hadn't realised. There were deficits in her gross motor functions that I as her mother, should have noticed already, but hadn't. Then we had the assessments in Solas...

Almost a year ago, Yani was diagnosed with ADD and Clinical Depression and the HSE put her on Prozac. Nothing improved over time and her symptoms of the "traits" of OCD and ODD were getting worse. Every visit with the clinical psychologist there were queries over Aspergers. I didn't buy it but decided that it needed to be ruled out or it would keep popping up like an unwanted guest, demanding that some attention be paid as it wasn't going away. So I took her to Solas to get answers once and for all.

There we met the lovely Marissa who did a full OT assessment on Yani. I must say, it didn't come as a huge surprise to me to find that she actually had very similar results to Munchkin. Gross motor skills were poor, balance and coordination, pen skills and attention. She had problems with auditory and visual processing. I was told that she met the criteria for SPD (Sensory Processing Disorder). After Marissa explained how this effected Yani, it all made sense. The crying, tantrums, temper, and emotional outbursts over simple things that others don't notice suddenly became clear.

What did surprise me was that they didn't believe that she was depressed, rather that her body energy levels were very low and that her "motor" ran on a very sedentary level. Its not that she's lazy, or tired or not bothered, rather that her body works on a different level to others. It really did make a lot of sense and we were relieved to find there were answers at least to some of our questions.

In the psychology assessment, at first I felt once again that I was "looking" for problems until I spelled out that we were there to rule aspergers out, not in. During the assessment process, as Yani answered the psychologists questions, I realised why the HSE psychs kept mentioning aspergers. Certainly there are things that could raise a flag or two, but on the whole I seriously and honestly didn't think we would get a diagnosis. They ran a cognitive test and did the Vineland Assessment. Unfortunately, her school had not returned their assessment forms in time for our appointment, so we couldn't get feedback at the end, however the psychologist did say that she couldn't rule it out at this time. I was told though, that regardless of the outcome of the assessment, my eldest daughter required a host of therapies including emotional regulation therapy, anger management, mind reading skills etc. I guess I'd better start looking for a second job to pay for those as know that the HSE won't be providing them to her! I'm very angry with myself that I let them just stick my little girl on meds and I as her mother didn't persue her problems sooner.

So we wait as the school was closed for half term and when I chased them up when the school opened afterwards, they hadn't done them, despite having had the paperwork for a week before the break. So we sit in a kind of Limbo til we put the pieces into the final jigsaw to get the full picture...