Thursday, January 28, 2010

Button finds his place


Button started in his new school in September 2007. His class consisted of 4 other boys, all of whom had Autism, his wonderful teacher and 3 or 4 SNAs. They also have a reading teacher. He travelled in and out of school on a bus, with an escort and 2 other children. The bus journey had been my biggest concern - but it turned out to be the highlight of his day! He was as happy as larry on the bus, hopping on without so much as a backward glance at me.

That first day Mr Taz and I collected him, and even though he had been aggressive and unco-operative for Teacher, she still gave him a hug as he was leaving and was very positive in telling us that it was nothing she hadn't seen before, and that we'd get through it. In the car he said "Mummy, I don't go to noisy school any more, I go to Happy School" and that is what we call it to this day. Happy School

The first few months were hard for Button and Teacher. His aggression was very ingrained by now - as far as he was concerned, if he didn't want to do his work, pulling hair or biting should get him out of it. It had worked for him for a long time by now! However, he had met his match with Teacher! She insisted that no matter what the behaviour the task would be completed. Her hair was pulled, she was kicked and bitten but she didn't give in. There would be no reward for bad behaviour.

Even though I wasn't collecting Button from school every day, thanks to his "Book" I knew exactly what he was doing during the day. At the end of every term, his classwork was sent home for me to see, and best of all, Button himself was actually beginning to tell me what he had done that day. He was engaged and excited about school, and the weight of the world had been lifted from my shoulders.

Along with all the usual academic work, Teacher is very insistent that her boys learn important life and social skills. Every day Button has a job to do, some days he sets the table for lunch, or sweeps the floor. But his favourite is to deliver a message to another class. One day I had to collect him early for an OT appointment, and as we were leaving 6 or 7 of the mainstream children said good bye to him by name. I said to Button "everyone knows you", and one little boy overheard me and said "Everybody loves Button! He's so cool!"

And you know what? He is cool!! In Happy School he is respected and loved for who he is. His behaviour is improving every term. And we have gone from every day being a bad day, to maybe 1 or 2 a month. But even when the bad days happen he is cherished and loved. To them he is just Button - his behaviour does not define who he is.

Today Button's book read "Button had a very good day today. He paid very good attention and listened well. In PE he did one full rotation on his bike" Did I mention that they asked me to send in his bike to keep in the hall, so that they could teach him to ride? This is what teaching is all about! This is why when I hear such horror stories among my friends of daily struggles with principals and teachers that I thank the Good Lord (or whatever you believe in) for Happy School.

Wednesday, January 20, 2010

School Days


Shortly after we arrived home with Belle, it was time for Button to start "big school". At this stage he had a "working diagnosis" of autism - basically enough to get him some services, but not all. I enrolled him in our local school, a relatively big, all boys primary. He had and SNA (Special Needs Assistant) in the class with him and was given 5 hours of resource teaching a week.

His first day was absolutely nerve wracking for me. When I met his teacher for the first time, I immediately got the vibe that we were not going to be singing from the same hymn sheet! She was very strict and intimidating, and didn't listen to me at all when I briefly ran through the issues Button had, especially his auditory sensitivity and behaviour.

On picking him up she told me he had not been "too bad", but that he wouldn't do what she asked him! Well, what did she expect? I explained again, that he worked very well for reinforcement, and that all she needed to do was to find something he liked (at this point he loved shape sorters, so anything shape related would engage him!) and tell him "First work, then...."

Her response was "Knowledge should be it's own reward"!

We were very fortunate that his resource teacher was a lovely, calm and capable lady. She took him for the last hour of every day, and he achieved more for her than he ever did for his teacher.
As the days went on, Button's behaviour got worse and worse. His SNA had her hair pulled often, he screamed and screeched his way through the day and threw and ripped his work.

Button's OT and Psychologist had both been in to see the teacher and explain the way to get the best from him. it was important that his behaviour got no reward, and that he knew that he had to finish the task, no matter what he did. I learned later that when he acted up, his SNA would take him out to the yard to have a run around! Teacher also was fond of blowing a WHISTLE at her class of 4 and 5 year olds to keep them in line! Auditory sensitivity obviously didn't mean much to her!

His teacher told me on many occasions that she didn't think Button had autism - that his problems were "behavioural". So she didn't implement any of the strategies suggested to her. I have to say at this point, that I collected Button every day from the Resource room, so rarely spoke to the teacher, and was therefore unaware of how bad the situation was. In hindsight I should have taken him out of there after week 2!

In the Spring of 2007, Button's diagnosis was confirmed, so we could finally look at getting him into a more suitable educational placement. We had heard great things about an Outreach Class in a school about 20 minutes drive away, and were delighted when he was offered a place there. Mr Taz and I went to see the class and were immediately bowled over by the teacher. She was exactly what Button needed, calm, firm and lots of fun! The school Principal was passionate about his little class of ASD kids - he had gone on training courses himself and was so enthusiastic it was infectious. I could imagine Button being very happy there. All we had to do was to get through the rest of the school year.

Thursday, January 14, 2010

My Seven


I was recently "tagged" by a fellow blogger Mommy to Two Boys (see her wonderful blog here) and asked to write 7 things people may not know about me and things I have not blogged about before! Never being one to refuse a challenge I am rising to the bait and putting Button and Belle's story aside for now!

So here goes!

1. I am a Londoner! I was born in Hammersmith, West London and lived there for just under 9 years. Moving to Ireland was quite traumatic for me, I remember clearly feeling like I was never going to fit in. I had a very strong English accent, and was painfully shy. It was a tough time, but something I am delighted my parents decided to do, growing up in Galway was a fabulous experience and I'm sure that I had way more freedom than I would have had in London.

2.I met Mr Taz when we were 20. We were in college together, but didn't meet until the night of our graduation (me from Social Studies and him from Business Studies). I knew from that first meeting that he was someone really special, and I was right! Another of those "meant to be" moments! He's a pretty cool guy, and an absolutely wonderful, hands-on dad!

3. When I was 20, my mother's friend entered me in the Claddagh Princess - a very early stage of the Rose of Tralee! I think I must have been the most reluctant contestant ever! It was an absolute nightmare. Thankfully I didn't win, but I did get a lovely little trophy that my mother still keeps in my old bedroom.

4. I am absolutely terrified of moths. Not quite phobic - but getting there! And following on from that, it pains me to admit - I'm scared of butterflies too! How embarrassing is that? They have a reputation for being pretty and dainty but it's all a conspiracy - they're just moths in brightly coloured jackets! All fluttery and unpredictable! Uuuurgh! My skin is crawling just thinking about them!

5. I have only one regret - and that is that I never learnt to play a musical instrument, particularly the piano. Anytime I go to an event where there is a piano in the room, I get an urge to sit down and play the theme for "The Muppet Show". I have promised myself that at some point in the future I will get lessons and someday, somewhere I fully intend to give in to my urge!

6. I'm still learning to drive. Yes, at nearly 40 years old I haven't yet passed my driving test. It's a bit of an embarrassment, really! People tend to assume that i can drive and invite me to places that I haven't a hope of getting to! I have a lovely little blue car sitting in my drive, and a couple of times a week I do a spin to Tesco, and if there was an emergency I'd be fine to get to doctors or hospital. But I hate it! I am so nervous that I even (I can't believe I'm actually telling you this!) had hypnotherapy to try and relax me! Hill starts freak me out!

7 Before I was a Mommy I worked for a building society, underwriting mortgages! This was back in the day when you could only get a mortgage you could actually afford to pay back! It sounds like a mega-boring job, but I actually really enjoyed it. I have also worked in a factory, testing printed circuit boards (now that WAS boring). But my qualification and experience is all mainly in the child-care area. I worked as a Nanny for a very wealthy Dublin family - and learnt that money is nice, but it certainly doesn't bring you happiness!

So there you go! My seven. Now can I go back to blogging about my kids? It's sooo much easier!

My good blogging friend, Jen (The King and I), has done a blog featuring her "7" too! Anyone else fancy a go? Go on - you know you want to!!!

Tuesday, January 12, 2010

Belle


About a year after we adopted Button, Mr Taz and I put in our application to adopt a second child. We had always planned on having more than one child, and at that time, didn't realise that Button had autism. So alongside all the assessments and therapies that Button was having, we were also being assessed to see if we were suitable parents for another child.

Button and his issues were a major part of the assessment. And to be perfectly honest, I think the talking we did about it then, both with the social worker and between ourselves, is part of the reason we have handled his diagnosis so well. It was like having our own private therapy sessions. We talked through how his delays had affected us as individuals, and as a couple and how we would deal with situations going in to the future. Adding to our family seemed like the natural thing to do, and we decided this time to adopt from Vietnam. The wait was slightly shorter there, and the babies younger. We thought that Button would find it easier to adapt to a small baby than to a toddler.

When Button was 4, we got the phone call to say we had been referred a baby girl. Travelling to Asia can be stressful enough, but travelling with an autistic 4 year old was absolutely terrifying! The journey to Vietnam was uneventful enough and Button coped extremely well with the flights and airports. We were lucky enough to be travelling with a couple of other families who were great with him and very understanding.

The orphanage that Belle was living in was about a 3 hour drive from Hanoi. Luckily, Button loves to go for a drive, so he was very happy sitting in the mini bus, eating his jelly tots. Meeting Belle for the first time was an amazing experience. She was without doubt the most beautiful little girl ever. They placed her in my arms and once again i fell in love. She was amazing.

We had initially thought we would have to be in Vietnam for 2 - 3 weeks, but it turned out to be four. So there we were, cooped up in a small room, in the middle of a heat wave (and believe me, a heat wave in Hanoi is a REAL heat wave!) in a hotel with no swimming pool and nothing to do. Button did not cope well at all. His aggression got worse, he pulled everyone and anyone's hair. He ate hardly anything and was generally absolutely miserable.

We visited Belle in the orphanage 3 more times before we could take her home. The journey home started off well, but on the Amsterdam - Dublin flight all hell broke loose. My only guess is that Button was tired and jet-lagged and couldn't face the idea of getting on another plane. He kicked screamed and shouted for the whole flight. Mr Taz held Belle, while I literally had to sit on Button to try and prevent him from attacking the person in the seat in front of us.

As soon as we landed he stopped. Like someone had just flicked a switch. We arrived out to the small crowd of family and friends, with Mr Taz and I looking shell shocked, and Button happy, smiling and dancing! I swear that to this day they do not believe how bad that flight was!

When I look back to that day, it was one of the happiest and hardest day of my life. Autism was a reality, and it wasn't just going to affect me and Mr Taz, but Belle too. We were all in this together.

Wednesday, January 6, 2010

The Lightbulb Moment


The next year is a bit of a blur. Button's central line (or "Freddie" as we called it) was removed after 6 months and a CT scan of his chest showed that, rather miraculously, there was no damage at all to his lungs. We were told to keep up with his oral meds for another 6 months, just to be on the safe side. But to all intents and purposes, Button was cured of his TB.

He had been put on a special formula called Nutrini, which saw him put on weight and his growth chart showed a dramatic improvement. He went from 12.5 lbs at 13 months to 20lbs at 16 months! All in all, things were looking fantastic for our little man!

Or were they? Just as his health seemed to improve, a whole new set of problems began to rear their ugly heads. No-one expected him to be at the same developmental level as his peers, but as he approached his 2nd birthday, the gap seemed to get wider and wider. He rarely played appropriately with toys, preferring instead to spin wheels on his trucks and press the same buttons on the electronic toys over and over again. He developed the first of his obsessions - balls. We couldn't go into a shop without leaving with a ball. Yet he never kicked, threw or bounced one. Just carried it around with him. He was also becoming quite aggressive.

We had been referred to the early intervention team, and he was getting lots of physiotherapy and a small amount of speech therapy. But it was next to impossible to discern if his delays were due to his physical problems, his institutionalisation or something else. In general, we were all happy with the progress he was making considering all he'd been through. We still thought that with the right therapies, and a lot of patience and time, he would catch up.

My "A-ha" moment came in May 2004, as Button was approaching his 3rd birthday. We were on holidays in France, with my parents and my brother, his wife and their son. We had all rented little holiday homes next to each other on a gorgeous campsite, and were having an absolutely wonderful time. One day, Button was in Nana & Papa's "house", as I went in to get him I was greeted by gales of laughter, and Papa taking photos of Button sitting on the floor with 4 or 5 saucepan lids spinning around him. He was going back and forth making sure none dropped, like a circus performer.

It hit me like the proverbial ton of bricks. We had been to a safari park, a theme park, a zoo, many playgrounds and the beach, and nothing had captured his attention like those saucepan lids! Suddenly, everything began to fall into place -the obsessions, the lack of eye contact, the inappropriate use of language and his aggression. My darling, darling, boy had autism.