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...

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

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 :)

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

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!)

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...

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...