but...sometimes Autism Rocks!!!!

I want to apologise for my last blog. I know it was all true and written from the heart, but it was a bit depressing. I'm a really optimistic person, to a fault sometimes. My brother once told me that if he lost a leg, I'd say "Ah well, at least you've still got the other one!". It's not that I'm unsympathetic, I just can't help myself! Things can always be worse!

So I've decided to rectify the situation. Because, yes, sometimes autism sucks, but often it ROCKS!
I've been thinking a lot of the positive things that autism brings to our lives, and here's what I've come up with:

Button will never be embarrassed or think it's not cool to give me kisses and hugs. He could not care less about what others think of him, so shows no reluctance to throw his arms around me and kiss me as only he can! Usually by pressing his forehead into my face!

I will never have to worry about him keeping up with the latest trends. No peer pressure for my little man!

He doesn't want the latest game console or gadget (though he does love his/my iTouch). He is completely happy with his baby toys. If it makes a noise or flashes a light, Button is entranced. I stopped buying him the things I thought he should like years ago. This year Santa brought him squirty bath toys! Big success!

Every small achievement is significant and cause for celebration. We rejoice in him and never put too much pressure on him. His happiness is our ultimate goal.

He sees the good in everybody. He is not cynical or jaded or critical of others. To Button the world is full of good people.

He still thinks that Mr Taz and I are absolutely hilarious! We don't get the rolling of the eyes and the "Oh Muuuuuuuum!" that so many of my friends with children of the same age experience.

He has made me a better person. 'Nuff said on that really! No need to explain, you all know what I mean.

So you see, even though we have our down days and times when life seems unbelievably unfair, we also have so much to be grateful for. Time to count our blessings, I think! Oh, I can't believe I nearly forgot the most important one.....we get to skip the queues in Disneyland!!!!

Sometimes Autism sucks!

Recently we decided that Button would not be making his First Communion this year (or any other year, in all probability). It wasn't exactly a tough decision, but it did open up a bit of a Pandora's Box of emotions that I had thought had been firmly laid to rest.

As I have mentioned before, I am not particularly religious. I believe in a higher power, but I'm not a huge fan of organised religion. I think if you're a good person and treat others with respect and dignity, well, that should be enough for anyone's God. But Communion is more than a religious event. it's what 8 year old boys like Button should be doing! A rite of passage, that was part of my vision for the future for him in the days, months and years before he came home. I have very happy memories of my communion day, and quite simply I wanted the same for him.

In the run up to a child's First Communion, there are 5 or 6 special masses arranged where the children all sit together and do the readings and prayers of the faithful. Two weeks ago we went off to mass, fully prepared with his favourite small toys, sweets and the promise of the iTouch for being quiet. It was a disaster. He was poking the lady beside us, shouting and trying to escape from his seat. After about 10 minutes (that felt like 10 hours) we decided enough was enough and made a hasty retreat to the car, with Button kicking and hitting various members of the congregation as he made his way up the aisle.

As I sat in the car waiting for Mr Taz and Belle, I just knew that Button was not ready for this. He simply cannot cope with crowds, and having to sit still for any length of time. And suddenly I was sobbing, as it hit me just how much his autism affects him and us as a family.

We go through our daily life thinking that Button is doing great (which he is), basking in the lovely comments that have been coming home in his Book recently and loving his funny, quirky nature. We live in a little autism bubble. This is our world and we know no different. As Belle grows up, we're getting glimpses of the "other world", but for the main part we potter along thinking everything is going to plan.

Then Wham! one day something hits you, and you realise that you're not as ahead of the game as you think you are. The difference between Button and his peers is remarkable. I watched those little boys and girls sitting quietly with just the odd giggle and murmur of chat. Their hands piously joined in complete innocence and joy, fully aware of the importance of the day they were preparing for, and my heart broke.

I'm generally a very optimistic, positive person. but that day I grieved for all the things Button will never enjoy. Birthday parties, trips to museums, pantomimes, playing football on the street with his mates, these things that you dream about and imagine your little boy doing. They are not part of his life, and in all probability never will be. It sucks.

He is the happiest, most innocent little soul I have ever known. He doesn't care one bit about those things. And 99% of the time, neither do I. I am not at all bothered about the actual communion, it's just a very stark reminder that life with Button is always going to be different from how we had pictured it to be.

The not-so-invisible Woman!

I'm not the kind of gal who likes to be the centre of attention. I'm very happy to let others take centre stage and just enjoy their reflected glory. But I've discovered in the past few years that I tend to attract a bit of attention when I go out with my children.

All adoptive families have numerous stories about things that people have said to them about their children. It's all part of the territory. We cannot chose who we share the information that Button and Belle are adopted with. It's as plain as the nose on your face! Or in our case, as plain as two very cute, non Caucasian noses! But for some reason this seems to give people the idea that they have a right to ask us the most personal and intrusive questions imaginable.

Most people mean well, and I always assume that they are asking me questions because of a genuine interest. Often people will tell me that their sister /friend/neighbour/second cousin twice removed, has adopted or is in the process, and I'm always happy to talk about it in general. But I will not share my kid's personal stories with anyone other than my kids! Their stories are theirs alone, to share with whom they choose, when they decide.

I have had some great comments though! Like the lady who asked me if Button's "other mother" was young. Because, she thought, he looks like he had a young mother! As opposed to the knackered, worn out one he's been lumbered with, I guess! And the very enthusiastic young woman who came running up to me squealing "Oooooooh! He's gorgeous! What is he?" Ummm, a baby?

Only one time have I ever been offended, and that was by a mature lady who pointed accusingly at Belle and said "That's not your baby"! When I said she was, her response was "well her Daddy must be Chinese so!". Her face when I told her that he was, in fact, from Westmeath, was a picture. You've got to take your pleasure where you can in this life!

My children know where they were born, and that we adopted them. They know what their names were before they became Button and Belle, and they know that they grew in another lady's tummy and that she loved them very much. Surely this is enough for other people to know too?

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.

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.

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!!!

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.