Better than The Brady Bunch :)

Many of my blog readers will be sick of reading how important it is to have friends that "get it" and have heard me wax lyrical on many occasions about the friends I have made on Facebook over the last year and half, but once again I'm going to tell you why this is so meaningful.

Last weekend, two girls who I now consider close friends even though we only met a year ago, came to stay for a night with their three gorgeous sons. We had discussed this visit on our Facebook pages and pretty soon, another two mums decided to pack up their kids and head for the coast on an hour and half road trip to come have a picnic with us on the beach. We all met at my house on the Saturday at lunchtime so we could go to the beach together and off we headed, armed with blankets, towels, food and high expectations of having a great afternoon in good company. The sun smiled on us and when we arrived we parked ourselves close to the waters edge, ready to run as needed. Between us we had 9 children, 2 auties, 4 aspies, 1 under assessment, 1 with dyspraxia and a toddler. Add in copious amounts of ADHD and we were ready for a fun day out...



Before long one mum was shouting for assistance to come take her phone out of her pocket as she was wading out to retrieve her young man who looked for all intents and purposes, determined to head towards Wales without a backward glance. As she managed to drag him back to land he managed to slip out of his shorts, preferring to turn the local beach into a nudist one hehe. We all enjoyed seeing the looks of excitement on our little ones faces as they paddled, crawled, rolled in the sand and did what they do best, be kids. We attracted some looks on the beach but as we are all seasoned elephant hide wearers, none of us were bothered by the attention. At times it was poignant for me to see Munchkin want to play with a little group of girls, but lacking the social skills necessary for her to join in. Despite having a vast vocabulary and excellent speech, she still falters when it comes to joining in with NT kids as she struggles conversationally.



After we had had enough of eating sand sandwiches and the beach in general, we all headed back to my house to let the kids continue to play alongside each other while the mothers were able to chat and relax a little with the front gates firmly closed. It was a very enjoyable afternoon and when the ladies from the Midlands left that evening, there were four nudies jumping on the trampoline until it was time to come in and get ready for bed. Amazingly, all four kiddies settled well that night and us mums sat chatting in the kitchen until the wee hours.



The next morning, all four kids were in fabulous form and we decided to take them to the local play centre where they burnt off some of the copious amounts of energy they store in such small bodies! Afterwards it was off to MaccyDees to meet up with another lovely FB family who were visiting the area and more laughing and chatting over our fast food before the gang all headed back to their own homes. On Sunday night, I sat and realised how quiet the house was now and how I missed the company of the girls and their wonderful kiddies.



Most people would think that having that many kids with special needs in your home would be stressful, but it was quite the opposite in fact. Not having to explain why your child likes to do naked acrobatics or why the ice pop is the wrong colour/shape/brand is very liberating. Not having to explain your childs behaviour or worry that people will think its poor parenting to allow drawing on a brown wall (well it did look like a giant chalkboard!) is so refreshing. It was also lovely to see the "friendships" between the children evolve. Whoever says that all aspies or auties are not interested in having friends is talking through their posteriors... I saw lots of bonding and even if they didn't communicate like NT kids, they were certainly enjoying each others company!

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...