Monday, September 13, 2010

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 :)

Tuesday, August 10, 2010

Pack Up Your Worries.....

Did you ever feel like just running away... just packing a case and leaving all your troubles behind? Well I finally did it. After a chat with Mum and saying how much I needed a holiday but couldn't afford to take one, she told me I couldn't afford not to. If I were to crack under the pressure I wouldn't be any good to anyone. That's all the arm twisting I needed to promptly organise to send Munchkin to her father for a week and fill the fridge and presses with food for the Gruesome Twosome. It something I think every parent dreams of but seldom plucks up the courage (or stupidity) to do. I'm not going to bore you with the details of the pressures leading up to my bolt for freedom but suffice to say I was bowing under the considerable pressure. So off I went armed with sun lotion, mental bubblegum books that required no effort to read and most certainly didn't contain the "A" word, and the perfect travel companion whom for the purpose of this blog shall be called Vixen :)

Vixen (yummy mummy to a couple of Aspie/Auties), and myself jetted off on a whim to Tunisia where once there, we quickly settled into our new surroundings. We had decided to go all inclusive as neither of us had the energy or decisiveness after a stressful year to even make decisions such as where to eat or what to do. When you've spent all year making difficult decisions, and being the primary carer for your children, sometimes you just don't have any head space left for the mundane choices. Its astonishing though when you are so used to "doing" all the time, how slowly time actually passes as several times over the week we felt as if we were in a time warp!

We discovered our Inner Auties on holidays and on one of the last nights, had a discussion over our dinner at how comfortable it had been NOT to feel the pressure to talk, or feel the need to explain that you weren't in a bad mood, or upset, you just didn't want to open your mouth and fill the silence. That's not to say that we didn't communicate during our time away, just communicated in grunts or nods if it was the wrong side of noon... Sometimes silence is indeed golden. It was amusing to note that we sat at the same table in the dining room each night, varied our food only a little and lounged on the side of the pool in the one spot all week....

At the resort, the majority of people spoke French as a first language. Vixen has no French and I have some so it was interesting trying to communicate with others. Essentially, Vixen was the non verbal one and I was the newly verbal with my Pigeon French. It struck us that this must be how our kiddies feel when in social situations and finding it difficult. I really had to struggle to listen and found that I could comprehend far more than I could verbalise. Vixen laughed at the fact that even if she said "I don't understand", someone would speak slower and say the exact same phrase as if that would make the difference, again and again.....

At the markets, we were hassled beyond belief by the traders and locals attempting to catch our attention, talk to us, get our business and we learned extremely fast that the best and most effective way of ignoring them was to avoid all eye contact (sounding familiar?) It was actually liberating to not feel the pressure of social niceties and allow yourself to be "rude" and totally blank these strangers who wanted to invade our personal space. I found a new appreciation of why and how our kids sometimes blank us or appear not to see or hear us. Its not "rudeness" as if that was the case we'd have spent our time just saying bog off. It was easier and far more effective to just ignore completely!

All in all, I think we learned a lot from our holiday. Not only did we get to relax and recharge the batteries, we discovered a little what it feels like to be inside our children's heads even if just briefly, and I must say, I liked it :)

Tuesday, June 29, 2010

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!

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...

Thursday, May 27, 2010

Jump? Sure... How High?

Gosh its been a while since I blogged last... I've been busy training for the circus you see. Laugh as you might, I think I may have qualified as an acrobat since we last met... And who has taught me such a skill? Well I'm learning this art courtesy of our very own health service providers, the HSE and the Department of Education and Science have thrown in a few lessons along the way. They are equal opportunity trainers, but if I'm honest, I think they favour our group at times as seem to focus on training us at every opportunity...

I first started jumping through hoops before I even met "The Professionals" at the HSE and the DOES, but the hoops I thought were difficult to navigate and jump through were only training hoops. A straight run and with a little effort you jumped right through. Inconvenient but not unsurpassable. Since those days though, the HSE and DOES have introduced me to a whole new level of hoops and obstacles to navigate on my path to get my children the services they need and are actually entitled to! When you have filled in the gazillionth form, and bought your own photocopier as have that many forms/reports/letters to post out what seems like on a weekly basis, and think you have things under control, another hoop appears...

Unfortunately, like circus lions, I have discovered that if I want to get to where I need to go, I need to play the game and when the Ringmaster says "jump" its better to ask "how high" than resist. As a wise woman once said, you catch more flies with honey than vinegar. She also told me that the "squeaky wheel is the one that gets oiled." When you are tired doing mental acrobatics, sometimes you need to step back, gather your energy along with your thoughts, and when you are ready, take another bash at it.

Whether is a refused DCA application and appeal, a request for reports, applying for Home Tuition, an SNA review or the fight for Speech and Language Therapy, or Occupational Therapy, you need to find the best way to approach the hoop to make it through. Sometimes you will need the support of others to help you along and give you a "boost up" when you feel you have no energy left to jump. Others who have navigated the course can be valuable allies as even thought the route may change from time to time, they will have information and advice how to handle your particular situation.

I think what I'm trying to say is "don't give up". The reason these hoops and obstacles are placed in our way is, in my opinion, to make it more difficult for parents in the hope that some will not pursue it further. A shameful way for the Government to save money at the expense of our children. What they don't bank on is us all coming together and in a show of strength helping each other navigate. When your child is diagnosed, you are not given information on what your entitlements are or what you can apply for. If you know any parent in this situation, please tell them, show them and guide them towards the information they need.

Right I'm off to sew some ostrich plumes to a leotard and post my CV to Duffys Circus...

Tuesday, April 27, 2010

Mother of an Adult.. A New Era has begun...

Ok, who decided that at the age of eighteen you become an "adult"... seriously, who actually thinks that eighteen year olds are mature enough to be able to vote, drink, get married etc... I really think that this needs to be reviewed.

Years ago, if you were of my parents generation, you were handed the key of the door as such on your eighteenth birthday and you went on your merry way. Moved out, got employment and probably settled down in your early twenties with the person you would spend the rest of your adult life with, raising your children and setting down roots (I paint such a pretty picture ;) But nowadays, it is more common that your "child" lives at home until their late twenties and continues their education well into their early twenties. Perhaps if they are lucky enough, they travel the World before settling down.

My eldest turned eighteen last week and the thought terrifies me. He is now classed as an "adult" and apart from the obvious benefits being cut, there really is no difference to when he was fourteen in my opinion. I still cook his dinner, do his washing and do a taxi service for him. He still attends school and will sit his Leaving Certificate in a few weeks time. I have the summer to prepare him for moving out as we have no university where we live and he'll have to live in Dublin when he goes to college. I have to let go of the reigns and let him figure things out for himself... He'll be responsible for feeding himself, making sure he takes his meds and generally keeping himself safe. No wonder I'm terrified! Yani has told me she's NEVER leaving home and thats a whole other issue to deal with...

It got me thinking to what the future holds for Munchkin and I hold the hopes that in fifteen years time I'll be having the same worries about her going to college and taking care of herself. That's the long term aim but who knows what her capabilities will be at that time. I think of friends whose children have more needs than Munchkin and wonder how they deal with their worries for the future and know how lucky I am to have my first in the starting blocks preparing for uni. I shouldn't think too far into the future as still have to secure a place for Munchkin in the ASD unit to give her the best chance at mainstreaming and inclusion so to think fifteen years forward is silly but unavoidable at times. After all, it doesn't seem that long ago that my manchild was a little boy...

Tuesday, April 13, 2010

My Child is not a Stereotype...

Its Autism Awareness Month, and I've realised lately how my own perceptions of ASD have changed over the years, and how easy it is to mentally file things into stereotypical files in our heads. For many years, I would have been the one who conjured up an image of Rainman when the word autism was mentioned and even though I have an autistic relative, I'm ashamed to admit I knew remarkably little about the disorder. Back in 2004 this all changed when a very lovely little boy came into my life and taught me there was so much more to ASD than I had imagined. While I worked with him, my attitudes and preconceptions changed and I fell in love with this child. It broke my heart when the family left Ireland and I knew that I would no longer see him but was very grateful for the lessons I learned during the few years I spent with him.

While working and training in ABA/VB I met a lot of parents and children, but not being a parent of a special needs child myself, it was difficult to truely understand what life was like for them. Yes, I spent five days a week working with kids on the spectrum, but its NOT the same as being their parent. Most of the children I met were nonverbal and would have had challenging behaviour at times so when I got pregnant with Munchkin and at 33 weeks pregnancy realised that autism could possibly be on the cards with my little girl, I panicked. I vividly recall saying to a friend that I could handle any disability that was dealt up to me, (I had refused prenatal testing for Down Syndrome even though I was classed as an "older" mother at 37). Anything that was, EXCEPT autism! I cried and hoped and wished that it wouldn't be the case. Looking back now, I realise how unfounded those fears were but thats with the wisdom of hindsight (why can't you buy that stuff by the crate eh?) As educated in autism as I thought I was, I still had a long way to go understanding this complex and huge spectrum!

Three and a half years on and a hell of an emotional rollercoaster later, I'm still playing mental pingpong at times, making me realise that I STILL have a lot to learn about ASD. Because Munchkin has progressed so much, I often kid myself that I can't see her aspergers anymore. I question my own sanity and her diagnosis on the good days, then get a dose of reality when I see it again. We have adjusted our lives, our homes and everything we do and LIVE verbal behaviour so much that we don't chart data, or click mands, it just comes second nature to all living in the house. I hear a lot from people who don't meet us often, that how could she have aspergers, "sure she can talk can't she?" Its not until they try to have a conversation with my gorgeous girlie that they realise there is a difference between talking and being conversational...

People tell me how lucky I am that she has come so far and I agree, but there has to be a flip side to this too and I think its the constant questioning in my own mind (and in many around me!) I do accept her aspergers and love her unconditionally, quirks and all. I am so greatful for the progress she's made and exceptionally proud of her, however instead of getting a pat on the back or a well done, you quite often get the original diagnosis questioned instead. You automatically defend as know that yes, she's doing great, but have you LOOKED at the sheer volume of intervention she's had, how hard she's had to learn what she knows and how the struggle you've had to get here, so you start pointing out the quirks, which almost feels like you are betraying your child! I was asked recently about "recovering" and "curing" my child and would I remove the autism if I could. My personal opinion is that if I removed all traces of Munchkins autism, I would be removing her personality as its as much a part of her as the colour of her eyes. Now ask me again, would I like to make life easier for her by teaching her skills to help her? Hell yeah, of course I would.

How can I do this I wonder... well raising awareness of autism as a huge spectrum is a start. Channel 4 are showing a very good documentary which started last night called "Young, Autistic & Stagestruck" which follows 9 autistic adolescents who are all effected by autism in varying degrees and personally I found it enlightening (review here). For once I saw a program that didn't just focus on nonverbal asd, but also on aspergers, and much as I hate the term "high-functioning" autistics. I finally could imagine what Munchkin could be like when she's older and am looking forward to the rest of the series. I thought the show would make me feel sad, but I was pleasantly surprised how the makers are shooting it with empathy and sensitivity and think its a good start to stop stereotyping our kids.

Finally to dispel a myth about aspergers, I'll answer some other questions to save you asking if you meet me... no, my daughter isn't gifted, she won't be the next Bill Gates, she cant do any tricks and we have no plans to go to Vegas to count cards ok? :P

Tuesday, April 6, 2010

The Power of Reinforcement

I've struggled lately to blog, really struggled trying to think of something to write about and the realisation hit me that this was because I had started to write for the reader, rather than for myself. When I first started blogging, I found it cathartic to be open about my feelings and talk about our journey, however, lately I have found that as I'm not "anonymous" anymore, and several people know me in person, or through my family, I'm more aware of what I put to paper. This in itself has made me cautious and I've lost the groove as such. In other words... I no longer found it reinforcing.

All autie and aspie parents will know the value of a good reinforcer. A good one can help turn a reluctant learner into an active participant in a task. We learn very early on that what we would previously have thought of as "bribery and corruption" had another name when applied using the principals of ABA (Applied Behaviour Analysis).

In short, a reinforcer is an item or activity that can be used as a reward for attempting a task that will ensure that the child will attempt that task again, (or in jargon - Reinforcement is a term for the delivery of a stimulus, (immediately or shortly) after a response, that results in an increase in the future rate or probability of that response). Its something that happens to us all everyday of our lives, but we never really put a name on it. People who dislike their jobs, but who smile when they reach payday, parents who hate cooking, but who love to sit around the table with their family watching them enjoy the food they've prepared (well ok, maybe not in this house, but I do believe it happens in some houses :) The donkey who follows the carrot dangling before him... ok I'm going to far now... but you get the idea!

When you are faced with a diagnosis, words such as ABA, PECS, Lamh, Intraverbals, Mands, Echoics etc... all seem like a foreign language, and many parents are daunted by the thoughts of what they'll have to learn to help their child. Some parents might prefer to take the ostrich approach for a while, afraid of starting something they feel they themselves might not understand. The jargon and lingo are rattling around like a foreign language inside their heads and it is easy to forget when talking to the parent of a newly diagnosed autie or aspie that they don't understand the language yet. There is a fantastic introductory course in ABA detailed on the IAA blog here that if you can get to, please do. Having someone translate the jargon will help you realise that it's not an impossible task, and in fact is quite logical and makes a huge amount of sense. If your child is non verbal, there is a two day PECS course which you can read about here, and if your child is already using PECS, perhaps you might like to look at this post about the Grace App for the iPhone and gladly throw the dreaded laminater in the bin...

(right, blog post done... now for that chocolate I promised myself :)

Tuesday, March 23, 2010

Happiness is.....

The lovely Jen from The King & I has tagged me on her blog for a Happiness Award which I get if I tell you all ten things that make me happy everyday. Before you laugh, its harder than you think! I seem to have spent so much time moaning lately its great to have the chance to reflect on the things that make me happy...

1. The Elder Lemon... My firstborn and only son. He gets up every morning without me having to call him and gets ready for school. When I appear in the kitchen, he always greets me with a smile and a hug.

2. Yani... My middle child and eldest daughter. She has a smile that can light up a room and everyday I look at her and am astonished how I managed to end up with such a stunning daughter. Not only is she gorgeous, but she is also smart (even if she doesn't believe that, I know she can do anything if she applies herself).

3. Munchkin... the baby in the family but the one who we all revolve around. She has the most amazing smile and eyes you can drown in!

4. Knowing I'm doing everything possible for my kids to reach their full potential and seeing them strive to get where they want to be. Imagining The Elder Lemon walking through the arch at Trinity in September with his future lying ahead of him. There was a time I thought I'd have failed him and he might not get there so imagining this scene makes me smile.

5. Listening to Munchkins little voice, regardless of the time of day or night. I don't think I could ever tire of hearing her talk. Her laugh is infectious and sense of humour developing daily and this is one of the things that makes me happiest.

6. My Facebook family. Without whom I'd no doubt be in a padded cell by now! You all make me laugh every day and keep me sane :) You "get" me!

7. My home. Well it is my castle...

8. The smell of freshly cut grass (especially when its mine and I know it doesn't need doing again for another week lol).

9. Tea! I could give Jeanie from Planet Outreach-ASD a run for her crown with the amount of cups I drink every day :) It has to be sipped (well guzzled!) from my favourite mug which is a hideous floral pattern but it just tastes nicer from a bone china mug!

10. Last but not least, hugs and kisses I don't have to ask for. There was a time where Munchkin had to be bribed and coerced to give a non committal hug and kisses were out of the question as she was unable to purse her lips and has oral sensory problems. I get an unsolicited kiss every morning from her and then she'll rest her hand on my face for a while. I love that moment and it makes my heart swell and almost burst every time she does it!

There, I did it! I now have to tag some others to follow suit and even though I'd like to tag everyone, will keep it to a few.

Hammie @ Hammiesblog
Jazzy @ Jazzygal
Claire @ AJ - My Superhero
Andra @ The Perfect Storm
Patsyperdu @ The Odd Adventures of Dr. Destructo
Mandie @ The Fabulous Mr Luca
Lisa @ Autimom & The Butterfly

Friday, March 19, 2010

If you're happy and you know it flap your hands :)

We are finally on the mend in the house after a few weeks of coughs and colds which turned into bronchiolitis which meant antibiotics and the new challenge of Munchkin accepting a Ventolin paediatric mask. We got through it and this week, once she wasn't at risk of coughing up a lung she went back to school.

She was so delighted to be back at her school that the only words that could describe her was she was "happy flappy" as she was like a little bird waiting to take off with excitement. She's always flapped but not so much when she's concentrating on a task. I've noticed her doing it a lot more lately, usually the left hand flapping from the wrist when she's happy or excited about something, and both if she's REALLY happy. Its a little like the movie Happy Feet but with Munchkin its happy hands!

We had plenty of the double handed flapping at a recent visit to the cinema. I had prepared well and purchased the tickets a day in advance to reduce queueing but decided on the day to see how obliging our local Cineplex would be on producing the IAA card. There wasn't very many people there so I approached a manager behind the counter and politely asked would it be possible for Munchkin and I to sit at the back in the posh seats so that Munchkin wouldn't annoy the people sitting around us during the movie by kicking the seats, jumping up and down etc... I was told I could sit there but would have to pay the €20 per seat charge. It was at this point I flashed her IAA card FBI style at her and said that's a shame, the cinemas in DUBLIN acknowledge this card... I don't think she'd ever seen one before but before we knew it, we had been escorted to the VIP area personally by an usher! I have to say it was such a wonderful experience because of this. Munchkin was able to jump up and down, stretch, lie down and even watched part of the movie upside down as decided to lie on the seat with her legs on the back and her head hanging off the edge. But we made it through the entire movie and she ate her body weight in popcorn! She hasn't talked about going to the cinema but I know it must have been eventful for her as over two weeks later in the back of the car she starts singing "Let's all go to the lobby.. let's all go to the lobby" (funny how the advertising spiel before the movie can make such a lasting impression!)

Friday, March 5, 2010

What happened my Picket Fence??

Oh dear God... the grass is growing... Why does this not make me happy? Spring is finally here and the days are getting longer, the weather is improving and the daffodils in the garden are starting to bud. But the grass.... why does it have to grow?? I love the smell of freshly cut grass but I'm just so tired already, and now I know that soon enough I'm going to have to add it to my list of "things that need doing"

You see, I'm a single mum with a couple of ex husbands behind me, so I have to do everything. I can deal with all the autism related stuff, I can run a home program, organise tutors, work, pay the bills, make the appointments and cope with all of that without cracking up. Its just how it is now. All decisions are down to me and in some ways that's actually better, as I don't have to run everything by another person and butt heads on whats best for the kids. My exes know that I only have the kids best interests at heart and will always put their needs before my own.

Lately though, I'm finding myself resentful that my life didn't turn out quite as I expected it. I think we all have this image in our heads when we were younger of what our "grown up" lives would be like. I rushed headlong into marriage to get started on this portrait but it wasn't to be. OK, put yourself back together, you have two kids now that need you so just pull it together and provide for them. We muddled along quite nicely and became the Three Musketeers. I was hesitant to change the dynamics of our family unit but then found myself in another relationship and we plodded along nicely for the best part of 5 years, but that wasn't to be either and we amicably went our separate ways, but not until I had uprooted my family and moved us to the countryside (and the half acre of grass that just keeps growing!!).

Loneliness set in and there is nothing worse than being lonely while surrounded by people.It was then I met my second husband. It was a whirlwind romance and I got caught up in the momentum and we quickly married despite there being indications that all was not quite right. The person I thought I married didn't turn out to be the person I ended up with. But I was pregnant on Munchkin at this time so we tried to make things work. Despite 5 months of counselling, our communication difficulties were too difficult to overcome and we separated.

So that was it... back to the Three Musketeers but now we were Four. I can't regret any of my life as it gave me three wonderful (even if they are challenging!) kids. I can't help feel that someone snuck in and stole my picket fence though. I really wish that I didn't have to make all the decisions, that it would have been nice to have someone to talk things through with, to make plans with and share the worries with. Someone who would have been my partner and companion as we got old together and laughed at how the grand kids were karma for the way our kids were as teenagers. But that's not possible now. I chose my path in life and I just have to accept it which I do for the most part. Its just when the grass starts growing it reminds me that its just another thing to do... I'll put it on the list after I put the bins out...

Wednesday, March 3, 2010

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...

Sunday, February 21, 2010

The Importance of Understanding

I got a full nights sleep!!!  Its amazing how much better and brighter the day is when you get a straight eight hours sleep with no interruptions, no little feet dancing in the bed, no elbows or extra limbs (you know our kiddies grow an extra set of legs and arms when the lights go out... well it feels that way when you are getting the autie or aspie version of Riverdance on your back or head during the wee hours!)

I had become increasingly frustrated lately as every time Munchkin slept in her dads house, he would report that she had no problems sleeping and made me question even more my own parenting skills.  I wondered it if was the double bed she gets to sleep in that helped her settle well there. Or the fact that he marches her up mountains and they are constantly on the go when she's there so was tired out.  I racked my brains and though that if I did the same, she may sleep here.  I dragged her to the beach, the forest, marathon trampoline sessions or if it rained, the bed in the spare room had its strength seriously tested.  But no, like every other night, she resisted sleep til gone midnight.  Things marginally improved after I was given a prescription for Melatonin from the paediatrician during her review and I could get her to bed 9.30ish each night but she never stayed asleep.

It was only after her recent OT assessment that it was explained to me that Munchkin wasn't actually kicking me or hitting me but sensory seeking by pressing her feet and limbs up against me.  Its very common with kids with proprioceptive problems.  She constantly seeks input to gauge her position by pressing up against me over and over during the night. Once I knew why she did this, it actually didn't bother me as much anymore.  Its amazing what a dash of understanding can add to the mix!  She used to only sleep as a baby if my arm was across her chest (not my hand, just my forearm) and the OT recommended that I use a weighted blanket in the report I received the other day.  It was only then that things fell into place regarding her sleeping pattern at her dads.  While explaining the report to him, he informed me that he uses two duvets and a blanket at his house as he didn't want her to be cold and he couldn't afford to use the heating.  She was getting the equivalent of a weighted blanket while there!  With this new information, I set to work that night.  I got a heavier duvet and stuffed it into her single cover. I put a bed rail up, as the OT explained that even though she doesn't fall out of bed, she would be subconsciously checking her proximity to the edge.  I put her to bed and waited for the magic to happen....

3am and there is screeching at the stairgate in her room... I go to the room to see that she has stripped off earlier in the night as dirtied her nappy and got back into bed.  She's then wet the bed so that was the end of that attempt!  I had thought we'd got past the stripping off in bed stage but will have to break out the Houdini suits again.

Last night we tried again.  On of the facebook mums suggested a duvet under her also so I set up the bed.  One duvet under her, a feather and down pillow and a doubled up duvet on top of her. She's in her Houdini suit so we're good to go.  4 mg Melatonin and some milk and lets see what happened.  I sneaked back up ten minutes later to check on her and.......

She may be holding onto the wall and rail but she looks so snug in her cocoon!  And yes, amazingly, she stayed there all night :D   I have fingers, toes and eyes crossed that it continues to work as I feel like a different person today.  If not, I may have to reconsider the duct tape and staples solution... (relax, I'm only joking so take your finger off the speed dial to the social workers hehe)

Sunday, February 7, 2010

Look, I DO fit in :)

A few days ago, myself and the tutor lauged so much as Munchkin squeezed herself into a canvas shopping bag.  It never ceases to amaze me where she'll manage to make herself fit.  From a very early age, she would climb into strange places.  You would find her sitting in a toybox or drawer looking at her toys rather than take them out to play.

When we visited a friends house, she would open the dresser and pull out all the contents from the bottom shelf and then slide into the press and happily lie there for a while while I had a coffee.  My friend kindly removed all breakables from this dresser as it became a weekly event!  In my mothers house, there is a press in the kitchen which she likes to sit in with the doors closed over at times.

I never paid much heed to this little quirk of hers until talking to the Occupational Therapist.  It seems that she gets some needs met on a sensory level by doing this.  A lot of children on the autism spectrum have proprioceptive difficulties.  Hammie described this in a post on the IAA blog here as "The sense of knowing where you are in relation to the Earth" and gives a very simple example of if we close our eyes, we can still touch our nose with our finger.  I still remember seeing Munchkin tryin to eat chips with her eyes shut one day and more that a few nearly went up a nostril!

As part of her OT program, I do deep pressure and massage with her.  One of her favourite things is to be rolled up in the duvet and squashed.  She loves lying on a beanbag and being squashed with the other beanbag.  She loves the pressure that is exerted on her little body and recently squeezed herself into a pillowcase so that her big sister could swing her gently while in her "cocoon".  As she gets bigger we'll have to either get a body sock or a single duvet cover at the very least!

I find that she has difficulty realising what size she is in relation to items also and will get quite frustrated at times that she can't fit into the toy car/bed/box she's playing with.  As small as she is, there are certain limitations as to what she can actually fit into!  It doesn't stop her trying however hehe...

I'll leave you with one of my favoure photos I took when I found that she had emptied the toys out of her shelving unit to use as a ladder to climb into and have some chill out time....

*edited to add video under strict instructions of the Queen of  Blog, Hammie!

Wednesday, January 27, 2010

What's Sleep Got To Do With It??

"When I was a child I used to hate going to bed... Now I cherish every hour of sleep!"

I saw this posted up on Facebook earlier and I couldn't help but physically nod in agreement as I read it.  Sleep... its something we all need in order to survive and keep our mental faculties intact.  Unfortunately Munchkin doesn't realise that!  She's never been a great sleeper from the start, often waking three or four times a night and ending up in bed beside me, as it would be the only way I could get one eye shut if not two.  In the early days, while she was still a baby, I accepted that there would be some degree of sleep deprivation involved as with all babies... (you can spot a sleep deprived mother a mile off, with the telltale black bags, and I'm not talking Prada dahling!) Thats what babies do... they eat, poop, sleep and cry and repeat this cycle over and over.  Usually though, sometime midway throughout their first year of life, they will eventually settle into a sleep pattern, waking less and ending up sleeping their 12-13 hours straight through to morning by about a year...

Unfortunately, with Munchkin, and with many other children I know on the spectrum, sleep deprivation is more common than sleep.  For some reason, our kiddies need so much less sleep than other kids their age.  I occasionally get lulled into a false sense of security when my pixie decides to toe the line and give me a night or two in a row, making me believe that perhaps the torture of the night time waking is actually ending.... But no!  Bam, we're back at square one :(  I do hold onto some hope though... Her older sister woke every night until she was over 4 so maybe, just maybe....

The effects of this broken sleep don't appear evident in Munchkin, who can happily run around, and laugh and smile etc as if she's had a 12 hour marathon kip.  Nothing seems to knock her off kilter.  She does her puzzles, plays with the toys, does her tablework without fuss and stays in relatively good form during her sessions in school and with tutors.  So why is there a problem I hear you ask....

I guess the problem lies with me...  I struggle to function to the best of my abilities when I'm tired.  Standards slip when it comes to everything as I wouldn't necessarily have the energy to give things my best focus.  Just the other day, after a 5am rising with madam, I had to go to work which I found very stressful as the child I work with was extremely frustrated with not being mobile, so took it out on my hands using her nails.  I then had to go collect Munchkin from school and go to the local book shop to get some stationary and books that Yani needed for school.  We went up to the top floor to buy the books and then came downstairs to look at the puzzles for madam.  Being tired, I looked at a box and when I looked down... she was gone!  Oh no, where is she... theres a door that opens out onto the street... panic.... I start shouting her name over and over hoping she's going to answer me.  Next thing, a counter staff girl shouted over "I think she just went up in the lift"!  Great!!  I run up the stairs and find her on the upper level.  I got angry, really angry...  Not with her, but with myself for letting my guard down and letting her give me the slip!  Even if I'm exhausted, I cannot let the guard down!

Time for action... I can no longer function as a law abiding, kind, happy, intellegent, useful member of society without my 8 hours a night. I have discovered the frightening "Sleep Deprived Driving" which means I can be often seen having a catnap at the side of the road when can drive no further... When I was younger, they used to joke that if sleeping was an Olympic Event, I'd bring the gold home for Ireland every time.  I LOVED my sleep.I had it down to a fine art, and could sleep standing upright on the 75 bus to work every morning.  Gawd, I miss those days!  So whats my plan of action....

I have in my possession now, the holy scroll (well GMS prescription for Melatonin liquid)  I have previously bought Melatonin over the internet and given it in small doses but that obviously didn't have the desired effect.  The paediatrician gave me clear instructions and the dose she recommended is far greater that the amount I had been giving her.  So fingers crossed everyone... If it does the job you will probably hear the squeals of delight coming from me in the morning :)

Watch this space.... but if you hear snoring, wake me at your own peril hehe...

Wednesday, January 20, 2010

7 things about me...

Everyone has done their list of seven things that you may not know about them and I have really enjoyed reading all the facts. To be honest, I was very surprised by some of the things I read and completely bowled over by the situations some of the girls had to endure over the years. Some of the stories made me laugh out loud and my nasal passages had tea spurt out on occasion... I do feel though, that reading the girls blog posts has made me think about my own life and how little I have done in comparison. I had my children quite young so never travelled, I certainly never carved out a career for myself, however, I have three very big achievements that call me Mam/Mum/Mummy/Mom/Hey you..... I will endeavour to follow suit and tell you 7 things about myself though as the others have all done so.

1. I have been married twice. My first marriage was when I was 23 years old and to a Londoner. We had two children and our marriage only lasted 16 months, however we had been together for a few years before we wed. My second husband I met on the Internet and we had a whirlwind relationship and married 21 months after we met. This union only lasted 18 months. Today would have been our 4th wedding anniversary but as I never get to the second, I have no idea what it should be.. paper/rock.... scissors?? Contrary to popular opinion, I do NOT have a patio, even if I joke about it regularly ;)

2. I am originally from Dublin, lived in Dundrum for the first 32 years of my life before moving to the country. I was asked recently by Hammie, how come I have a strong Wexford accent.... I still haven't managed to find an audio clip of what a Wexford accent is to play to her, but no.. I don't have the accent! When I lived in Dublin, I had a wall at the front of my house where the local teenagers congregated all day and for much of the night. They drove me insane as used to play football using the trees in front of my living room window as goalposts. After a few years of asking them not to play there, and begging them to stop walking on my wall as it was getting loose and the brickwork was wobbly, I snapped. I took a sledgehammer to the wall in front of them earning the nickname "Psycho Bitch from Nr. 1"....

3. I worked in administration for a chemical engineering company for the best part of twelve years while living in Dublin. I hated my job but every time I quit, they offered it back to me with higher wages, more holidays and flexible hours! I kept going back but eventually went part time for them to work around the children's needs. I also did painting and decorating at weekends when The Gruesome Twosome were at their fathers house. I used to take in foreign students all summer to compensate for working less in the office, along with childminding and would do data input at night to make ends meet. During school term, I would work in the office in the mornings and do afterschool care. I loved being there to collect the kids from school, but it was hard.

4. I was relentlessly bullied for the first three years of secondary school. I hated going and became withdrawn. My mother used to have to chase me down the road in the mornings to beg me to brush my hair and make an effort with my appearance. I had buck teeth and braces. To this day, I still have a massive inferiority complex and struggle with my demons. Even when meeting up with people I consider friends, I get very nervous, although on the outside I try hard to appear confident and intelligent. I always feel as if I'm playing at life, that it's not real, and some day my "fraud" will be found out. Silly I know, and a demon I'm trying hard to slay...

5. I only started driving when I was 25. My father and mother bought me my first little car, a Ford Fiesta and I loved it. Overconfidence led me to attempt to drive to Arklow four weeks after I got it and I crashed, totalling the car with Yani in the back seat. No one was badly hurt but my bonnet ended up where my windscreen should have been and I was badly shaken. I still get nervous now when driving a route that's not familiar to me and I won't drive in the City. I do however, suffer road rage and after someone tailgated me for a few miles once, got out of the car at the traffic lights, opened the boot and roared at him "would you like to get IN"...

6. I have been a "Gold Member" in WeightWatchers three times. In total, I have lost 10 stone over the years (not all in one go!) and put it all back on each time. I swing from a size 8-18 like a yoyo. I developed an eating disorder in my late twenties and used to eat laxatives as if they were sweets. I went to the doctor for help after a particularly embarrassing event which I won't go into detail about here...

7. Last but not least, I am terrified of wasps and bees. When I was younger, I got stung and had a bad allergic reaction to it. I have been known to get out of a car because of a wasp flying in... This also extends to a fear of all flying insects, including mosquitoes. I tortured my partner and the older two on holidays in Turkey once as wouldn't let them open the windows in the apartment and we had no aircon... I didn't trust the plug in devices, the sprays, or the electronic mosquito repellent I had brought... so we sweltered for two weeks!

Thursday, January 14, 2010

The end of a chapter...

I'm quite sad tonight... Today, Munchkins tutor broke the news to me that she was leaving in a few weeks time as has been offered a teaching job in her home county and would be starting after the half term. I know how much she is going to be missed, not only by Munchkin, but by our entire family.

When you take on a home tutor, you are not just employing someone to work some hours with your child. They have to be someone you are comfortable sharing your home with as they become an integral part of your extended family. Ursula quickly put all of us at our ease and there were never moments of awkwardness or feeling as if we had to get out of the way while she worked. I think if I was to describe her with two words, it would be "human dynamo!"

Having a tutor that you trust and know cares about your child and not just the paycheck is something more valuable than gold dust. Watching the two of them work together has been amazing and I'm grateful for the months of work she has done with Munchkin. The transformation in that time has been incredible. I know that a huge amount of work and teaching was done before Ursula joined us, but I had burnt out to a degree, and it was lovely to let someone else "take over" and push the program forward. She has a fantastic manner when it comes to teaching and Munchkin responds brilliantly with her and has blossomed and thrived. The children she will be teaching when she goes to her new position will love her as much as my little madam does. I know that I will smile and remember her when my minx comes out with a little Tipperary accent at times, as she has picked up the accent when it comes to a few of the words she says...

I'm happy that Ursula has found a great job and can move back close to her family, and even though I'm sad she's leaving, I know that the foundations she set while she was here are going to stand to good stead and has given Munchkin a great boost, so I'm not worried for the future.

Wednesday, January 6, 2010

There's no metaphor like a snow metaphor....

I'm snowed in again and starting to feel the frustration at not being able to do everyday tasks like shopping... I know if I could just get to the main road, that there is a remote chance the council have it gritted and I could get into town to restock the cupboards!

As I was lying awake in the small hours, it occurred to me how the situation could be applied to the communication difficulties our children have. We are happy and comfortable in our warm house on the top of the hill. Everything we need is to hand, there is food in the fridge, and some oil in the tank so we are pretty self sufficient. The views are spectacular and apart from a little cabin fever, we are ticking along nicely. However, when the food runs out and the heating isn't working, we are going to find we need to reconnect with the outside world... Herein lies the problem. We know what we need but there is a huge obstacle in the way. Knowing where you need to go, or what you want is one thing, but getting it is another.

Whereas some people are equipped with a 4x4 jeep or snow chains, our children have the equivalent of a Mini with slightly balding tyres so the trip down the snow covered ice impacted hill is a more daunting prospect. Not impossible, but is going to take a lot more planning and a generous dollop of caution. With love and intervention, we throw a bit of sand down so the tyres can take hold and get them moving. A bit more sand, help with the steering and the occasional push and the main road is in sight...

At times we question whether its fair or not to force our kids out of the house and into the snow to get them where they need to go. Jeanie from PlanetOutreach-ASD wrote a thought provoking post on this recently and combined with the comments on the blog, it made for great reading. The general consensus is that while it seems a little unfair at the time, as our kids get older, we want them to reach the gritted road and what lies beyond. Whether they need us to steer the Mini and throw sand under the wheel for as long as it takes, or they manage to get their own 4x4 is fine by us.

Saturday, January 2, 2010

Poetry amongst the dust bunnies....

I've been confined to the house since New Year due to lack of gritting on the roads here around me so cabin fever set in and I did what I haven't done in over a year... I had a good clear out of the bits of paper, junk and clutter that seems to magically accumulate over time. I am fascinated how much we hold onto in the chance that someday, we might just use it. Today I was ruthless and decided that the binmen will earn their wages well when they can get the lorry back up the ice impacted hill I live on.

For hours, I sorted and created piles of stuff for binning or recycling (or just putting back where it belonged!) I'm ashamed to say that my inner sloth must have been residing in the utility as there was paperwork dated 07 and clothes that Munchkin couldn't possibly squeeze into pushed into bags which I had intended "putting away later"... Its cathartic when you finish and see the results of your efforts. Where others had to entertain bored children, I found a little silver lining to our ASD cloud... I was free to attack the clutter and Munchkin played happily by herself in her playroom (I now have to do a clear up job in there, but hey, the kitchen and utility look GREAT!)

While clearing a shelf in the kitchen, I came across a poem that had been copied and given to me just after Munchkin was diagnosed, and I smiled as I read the words printed in front of me. It was written by R.S. Thomas and would like to share it with you here.

Children's Song

We live in our own world,
A world that is too small
For you to stoop and enter
Even on hands and knees,
The adult subterfuge.
And though you probe and pry
With analytic eye,
And eavesdrop all our talk
With an amused look,
You cannot find the centre
Where we dance, where we play,
Where life is still asleep
Under the closed flower,
Under the smooth shell
Of eggs in the cupped nest
That mock the faded blue
Of your remoter heaven.

I just love the way he portrays the innocence of children, untarnished by the world. I like to believe that its not a world children are trapped in, rather a pure beautiful place that they can seek sanctuary in, as all children do before the harsh realities of growing up change that world to an adult world, with cynicism, responsibilities and stress.

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