Another Year Over

Christmas Eve is such a magical day. The anticipation of Christmas Day and what it will bring is so very exciting for children and adults alike. Sprinkling reindeer dust, leaving out cookies/milk/alcohol/carrots (delete as appropriate!) for Santa and his Reindeer, watching the night sky for a glimpse of his sleigh and snuggling under the duvet knowing that it's finally only one more sleep is just all part and parcel of childhood. But most children with autism don't share the excitement that other kids do. They aren't fussed about going to see Santa, they don't care about presents, in fact the whole day can be very stressful for children with autism. Having too many people around, in their faces, making too much noise, being out of routine - these things can be very overwhelming for a child on the spectrum and meltdowns can occur because of this making the whole day upsetting for everyone involved. L's senses don't ever seem to get too overwhelmed in these circumstances but I was on high alert during the day, making sure I kept a close eye on him and luckily he was fine and coped well during a very busy day. He has been a bit out of sorts the last few days and I think the festivities and him being out of his normal routine is taking its toll a bit so my mum suggested taking him out today while she looked after R, so me and L got the train into town which was an absolute treat for him. We wandered around the toy shop, played on the escalators (a bit of an obsession with L) and had a McDonalds lunch before getting the train back. It was lovely to spend some quality time together.

Things with L are pretty much on an even keel at the minute. With his school place now sorted things are going well and I'm not expecting any surprises. The focus of my worry has now switched to R and waiting to go to her next appointment. I can't shake the horrible anxiety that what we initially thought was a squint in her eye is potentially something a lot more serious. The mere thought of what it could be makes me feel horribly sick to my stomach and I'm trying to stay in a positive frame of mind but the anxiety continually creeps in. It certainly puts autism back in perspective, as upsetting as it was at the time, autism isn't life threatening. I knew there was a chance R would also have autism but it never really entered my mind there may be anything else we would have to deal with.  I feel like I seem to spend my time waiting and worrying about my children and sometimes it is so exhausting. I often wonder what other people worry about, and how lovely it must be to not be stressing over these things. It does grate on me when people complain and moan about the most trivial things. I want to scream at them that they don't know how lucky they are, but I don't of course. Who gets to decide whose problems are worse than someone else's? Unless you have walked in someone else's shoes then you can never know just how they are feeling. Everyone has stress in their lives. But as we come to the end of another year, try and stop and take notice of what you have in
your life, count each and every one of your blessings because you never know when things can
suddenly be turned upside down and how your life can change in an instant. Next time you want to moan, just smile instead. And before you go to bed tonight give your babies a kiss and be thankful you have them because a lot of people would give their right arms to have what you have.

And of course have a lovely 2014!

Good News and Bad

We found out yesterday where L has been given a specialised school place and we were delighted to hear it was where we had asked for. I decided very early on in L's life that I would keep him in mainstream wherever I could. I believe children with autism need to be around their typical peers as much as possible and separating them isn't the answer. Of course autism is a spectrum and there are varying levels of difficulty with it and some children with autism would simply not cope in a mainstream environment. Despite L's lack of social skills he does enjoy being around other children but lacks the instinctive nature or know-how to make friends. We applied for a relatively local mainstream primary school which has an autism unit and L will start there in August next year. School is such a huge part of a child's life and while I'm a little nervous about our decision, I know it's the right one.

My mind has been very preoccupied with other things recently. R has been attending the hospital for a squint in her eyes and at her appointment last week the doctor was concerned there may be more to it and is sending her for further tests. Among other things, they want to check her brain to make sure there is nothing nasty in there. He did say most cases where congenital but as her mum, I now have this horrible black cloud over me where I just need to know she is alright. I remember the worry I felt when I realised L had autism but this is taking things to a whole new level. All of a sudden autism pales massively into significance. The appointment itself was pretty brutal. Two hours where R was very patient and as good as gold, but as she kept trying to grab the torch while her eyes were being checked, it was decided it would be best to clamp her eyes open so the doctor could see them properly. She was swaddled in a blanket and held down on a table while metal clamps were inserted in her eyes. It was over in a couple of minutes but watching her cry when there was nothing I could do was incredibly painful and I cried myself on and off for the rest of the day.

I feel pretty drained at the minute and not quite sure how much more my emotions can take but since Christmas is only a week away I'm holding it together for the sake of an excited 4 year old. R's next appointment is already in for next month and I'm hoping for some good news so I can shift some of this anxiety. My baby girl has to be ok. There is simply no alternative.

What Causes Autism

The subject of what causes autism is a highly controversial one. One thing I have learned on our journey is that everyone and their dog has an opinion on this. But of course opinions are merely that - opinions and not facts. When you realise there is something wrong with your child your first thought goes back to your pregnancy, or at least mine did. Did I do something wrong? Did I take something I shouldn't have? A lot of women don't realise they are pregnant yet in those very first weeks when so many vital things are happening in your embryo's development. Did I take something then? I remember having a rotten cold and taking different painkillers. Was it that? Did they cause my sons brain to develop differently? Your mind goes round in circles as you beat yourself up.  The frustrating truth is, myself along with most parents will never know the cause of their child's autism, because even scientists and medical professionals still can't find a certain cause of it. So it will continue to haunt us unless we ever find out for sure.

The original cause of autism was thought to be down to bad parenting. The phrase 'refrigerator mothers' was made, suggesting mothers who were so cold towards their babies that their brains failed to develop appropriately. Thankfully, that theory was thrown out long ago.  Of course in some cases autism is genetic. If autism is in your family, your chance of having a child with autism will increase. Just the same as us knowing this before we had a second child as our risk was also increased.  But the frightening and controversial topic centres around vaccines and the man in the midst of it all - former Dr Andrew Wakefield. His original study alleged that the MMR vaccine caused intestinal problems which then led on to regressive autism. This study was widely discredited and stripped him of his medical licence - as you will hear many pro-vaccine parents shout at the mere mention of autism and the MMR - but there has been many studies since (which strangely no one hears about) linking infants immature immune systems being overloaded with vaccine ingredients such as mercury, aluminium, MSG, formaldehyde etc and causing irreparable damage. There is a vaccine damaged children fund for families claiming compensation and there has been rulings in courtrooms that children have been left brain damaged and with conditions such as autism following vaccinations. Medical professionals continue to refute these claims but there is a massive community of parents who saw very real changes in their children after being vaccinated.  The medical world says it's merely a coincidence but for me there are too many coincidences. I just want to add here that I'm not saying that I think vaccines caused L's autism, but with so much uncertainty surrounding the subject, I don't think they can be ruled out either. 

It's because of all this that we have declined to vaccinate R and we are 100% confident in our decision. She is 6 months old and has never had a needle anywhere near her. We also opted out of the vitamin K injection at birth. I believe vaccines are safe for most children but I'm pretty sure they are not safe for all. And after doing a lot of research I also don't believe they are even effective. When infections are injected into the body, your immune system doesn't recognise it properly. This was mentioned by the World Health Organisation in their report titled "Immunisation, Vaccines and Biologicals". They reported that children under age 2 do not consistently develop immunity following vaccination" so really many vaccines are completely ineffective. Also, in the book How to raise a healthy child in spite of your Doctor, the author Dr Robert Mendelsohn MD showed that people who received the MMR were 14 times more likely to contract mumps than people who hadn't received the jag. Interesting. To add to this, the makers of the Tripedia vaccine for DTaP (diphtheria, pertussis & tetanus) state some of these reactions to their vaccine:

Sudden Infant Death Syndrome

Anaphylactic Reaction

Autism

Convulsions 

Brain Dysfunction

Nerve Damage

So I'm sure after reading this people will understand why we haven't and will not vaccinate R. My only regret in life is that I didn't do the research prior to L being vaccinated and I will be eternally sorry for that. Maybe it would have made a difference, maybe it wouldn't have. We will never know. But we are choosing to let R build some natural immunity and of course that comes with its own risks but we are happy with our decision and that's all we can ask for right now.

Then there were 2

When you are growing up you have several ideas of how your life will be when you are older. What job you will have; what age you will get married; how many children you will have. For me, I always thought 2 children would be nice. A nice even number. A family of 4. When L came along, I couldn't believe how much hard work a baby actually was. There really was no let up! The sleep deprivation was awful. Most of the time I could actually fall asleep standing up then whenever I actually got the chance to sleep I just could never seem to nod off. I struggled to switch off from L and was forever checking him during the night to make sure he was ok. I remember one night being woken up by the alarm which was connected to L's baby monitor - a monitor that picked up every movement including a heartbeat and sounded an alarm if there was no movement for a period of time. I've never moved so fast as I flew into L's bedroom terrified of what I might find. There he was, tucked up in the very top corner of his cot - too far away from the monitor for it to pick up any motion. I aged ten years that night and the monitors got packed away after that.

When I realised L had autism, it made me question whether or not to have another baby. Life just wasn't simple anymore and we had so many things to consider when it came to expanding our family. If you have a child with autism, any siblings have up to an 18% chance of also being born with the condition. That really scared me and I just didn't know if I could go through it all again. I felt in my mind that L was here, he was my priority and I should dedicate all of my time to him - another child would take me away from him to a degree and he needed me. And if another child was on the spectrum then that would leave me even less time to spend with L. I couldn't do that to him. I also worried if another child was more 'typically developing' how would they feel growing up with a brother with autism? A black and white decision of will we or won't we was suddenly full of doubt and worry. But my gut feeling was I had to focus on L so my mind was made up. L would be an only child and I would devote all of my time to him, raising him to the best of my ability so he could grow into the finest young man possible.

I was happy with my decision and when people asked the inevitable question of whether there would be any more children, I said I didn't think so and left it at that. But over time something just didn't feel right. My family felt incomplete. I remember looking at a holiday picture of the 3 of us and thinking that something or someone was missing. The thought of never carrying another baby or holding my newborn in my arms again made my heart ache and I started to feel really sad about it. My main worry was having two children with autism. I was handling one but could I handle 2?

Then one day, while watching L playing in our back garden I had this light bulb moment. A sibling wouldn't take anything away from L - it would do the complete opposite. A sibling would enhance his life. He needed a sibling. A live-in playmate for him. Someone bonded by blood who would always be in his corner. And if that child had autism? So what. I was already in Holland with one child, so would it be so bad if it was with 2? The more the merrier. I talked it over with S and he agreed. He said one of the nicest things I've ever head him say - that he didn't care if anymore children had autism because L was awesome just as he was. So it was decided. We would have another baby and in May this year little R joined the family. A little sister for L. I'm delighted that I had a change of heart and having R was one of the best decisions I've ever made. She is amazing and fits right in to all of our lives. Finally, our family is complete.

What is autism?

Before autism entered our lives, it's probably fair for me to say my knowledge on the subject spanned as far as the 1980's film Rain Man. Having never encountered it personally, I never had the need or want to know too much about it. Watching Dustin Hoffman memorise a phone book and make Tom Cruise very rich by counting cards in a casino is about all I could say on the topic of asd. But when the realisation set in that L probably had autism, I did what any half decent parent would do - I educated myself as much as I could on the subject. I wanted to become an expert on autism, to know it inside and out to the point I could win an episode of Mastermind hands down. So where do you start when you want to find information on something? Of course the internet was the first port of call. Good old google took me to many sites which made for very upsetting reading. As if my stomach didn't churn with anxiety enough, reading some of the things I did was almost enough to make me climb under my duvet and not get back out. So I went down the book route - and many titles now fill my home - Engaging Autism, Autism and Diet Intervention, Ten things every child with Autism wishes you knew, The Reason I Jump, Early intervention games for children with autism..........you get the picture. Knowledge is power as they say and I wanted to be extremely powerful.

So I soon learned that autism is basically a social communication disorder which is defined by 3 separate impairments (in asd lingo it's known as the triad of impairments). The first impairment centres around speech and language which can typically be a speech delay and problems with both expressive and receptive language. (In layman terms, expressive language is speech and receptive language is what you can understand). As a rule of thumb, people tend to understand a lot more than they can actually say. For me it's a bit like the offside rule. I understand it perfectly in my head but don't try and ask me to actually put it into words. I wouldn't really know where to start. For children with autism the opposite is normally true, they can say a lot more than they actually understand. They can memorise and recite whole songs and films but would struggle to have any form of conversation. They often use echolalia, which means when you speak to them, instead of answering appropriately they simply repeat back what you have said. L still does this sometimes. People with autism take things literally so saying something like "my feet are killing me" may actually terrify them. Of course it's a figure of speech and simply means you have sore feet - not that your feet are actually going to cause your death. Things like sarcasm are lost on them also. So the rule here is if you are speaking to a person with autism say what you mean.

The second impairment involves social and emotional interaction. A child with autism can struggle to interact with their peers and may prefer to be alone. They may be happy to play alongside other children but don't try to actually play with them or make friends. They may be too over friendly with people or can be the opposite and appear very aloof. They can't read body language or understand the 'social rules'. It is often said that children with autism are in a world of their own due to these difficulties.

The third impairment is about imagination and flexibility. A child with autism will have no or very little imaginative play. They may not pretend to talk on a toy phone or play with a tea set or toy kitchen as a typical child would. They like structure and routine and don't like change. I remember one day a few months ago, L and I had been out and were returning home. We live in a new build estate which still has building work going on and on this particular day the entrance to our street was blocked by a huge dumper truck. We had to drive around it and get to our house by a slightly different route. L had been in a lovely mood and we were chatting in the car but the second I drove around that dumper, it all changed. He started screaming "go that way, go that way" over and over. He was hysterical and had a melt down which lasted over an hour. In the end, S had to take him out and drive back in the street the 'right' way. Something which should have been nothing more than a tiny inconvenience turned our whole day upside down and left me a bit shaken up. That is autism for you. Just when sometimes you almost forget it's there, it rears it's ugly head to remind you.

On the plus side, I can't wait to take L to the casino when he is older.

Kidding!!!!!

Welcome to Holland

I touched on the previous post about Welcome to Holland - a popular analogy in the special needs community. When I first read it, I cried my eyes out. I didn't like it. Who wants to go to Holland? No one would chose to go there but when you are taken there unexpectedly, there isn't much you can do about it. People have said to me in the past that they couldn't cope in my situation or they couldn't do it. I say of course you could, there is no choice. It's not like buying a new car and it breaking down. I can't take L back to a garage and say "sorry, there is a problem with this one". He isn't a piece of faulty merchandise that I can return and get a new shiny one in his place. Not that I would want to of course, even if I could. Having additional needs doesn't make me love him any less. It does the complete opposite. I love him even more. I just want to run away with him sometimes. Wrap him in cotton wool and protect him from society and its prejudice and ignorance. His autism is part of him and he wouldn't be who he is without it. A lovely mummy who I met on our journey said once that she wanted to run away and sell coconuts on a beach somewhere. Doesn't sound like a bad idea sometimes. I still sometimes cry when I read Welcome to Holland. It describes what it's like to be mum to a special little person more beautifully than I ever could. It touches me every time I read it. I used to sometimes look at L and wonder what he would be like if he didn't have autism but I don't let my mind wander there anymore. It's painful and pointless and besides, what's so good about Italy anyway?


Here it is:


Welcome to Holland by Emily Perl Kingsley


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."  But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

The Beginning

"We are diagnosing him, but I think you were expecting it"

I nodded and smiled at the speech therapist as she looked back at us with a sympathetic look on her face. Ten minutes later we left, with a few leaflets in hand about "what to expect after diagnosis".

Let's rewind...

When I was pregnant with L,  I had a niggle that something wasn't going to be quite right. I put it down to me being a first time mum and just having typical worries. As the pregnancy progressed my feelings got stronger and I was sure something was going to be wrong when he was born. One morning whilst watching breakfast tv, I saw on the screen a teenage girl who had given birth to a baby with Down Syndrome. She had no idea and had dismissed her 1 in however many chance as most of us do. But as she said that morning "someone is always the one" and in this case it was her. I convinced myself that I would indeed be that one, that my baby would also be born with Down Syndrome. I wondered how my husband and family would react when our baby was born with the condition. He wasn't of course, but it didn't stop me checking him over after his birth - just in case the midwife had missed it. I checked the palm of his hands for a single crease, having googled the signs previously. My baby appeared to be healthy, but I still had this niggle. I didn't tell anyone about these fears and how I was feeling. I could almost picture the looks on peoples faces if I had to say these things out loud, they would surely think I was mad. Again, I just put it down to being a first time mum and that these were worries and fears most mums would have. We left the hospital the following day and I decided to put my fears to one side and enjoy my baby. He was here and he was healthy.

The months passed by quickly in a whirlwind of dirty nappies and sleepless nights. L wasn't much of a sleeper but I suppose most babies aren't. I remember speaking to a friend when L was 5 months old and her saying "he must surely be sleeping at night by now" and me fibbing and saying yes he was because I was too scared to say he wasn't as if it meant I was failing as a parent. My niggles were still there but I knew in time I would see all was well as I watched my baby boy grow and develop. We lived in a flat at this time and were beginning to look ahead and take steps to move to a house. We started talking about what areas we would like to live in, where were the good schools? The niggles continued "L might not go to mainstream school" I told myself. Why did I keep thinking this way?

Around the time of his first birthday, the niggles got stronger. But this time they weren't just niggles, there were signs something wasn't right. Little subtleties that anyone else would miss, but I saw them.  I asked myself if I was looking for things that weren't there. He seemed fine a lot of the time but when he was next to other children his own age I could see differences. Of course everyone will tell you not to compare children, that they are all different but there comes a point when the differences become palpable and you can't deny them any longer. I spoke to L's dad (S) about it but he didn't agree so I turned to google and started to search, trying to find out if the gut feeling I had from even before L was even born was right.

My stomach turned over as I kept coming back to the same thing. The same word kept appearing over and over. I felt physically sick as I read screen after screen describing my little boy. It couldn't be right. I wouldn't believe it. I went to bed and cried myself to sleep. I knew it was true, finally it all made sense, but it was too horrendous to face.

L had autism.

I felt like my life had changed in an instant. I was propelled into a parallel universe where everything appeared to be the same, except it wasn't and it would never be the same again. I desperately wanted to go back to before, to find the door back to my old world, where everything was nice and rosy and special needs children were born to other people. But I couldn't find the door anywhere. It was gone. I was stuck here now, in this new world. In this new life.

The days and weeks that followed were a bit of a blur. I spent hours and hours online, spending every night into the early hours of the morning looking for more information. I went between knowing L had autism to convincing myself he didn't - he was too young, he was just immature, he would get there eventually (wherever 'there' is). I would often cry myself to sleep after reading stories of children locked in their own worlds, who never learn to talk, and who have violent outbursts towards their parents. I would wake in the morning and have those few seconds of bliss where I was unaware then the realisation would hit that it wasn't a nightmare. It was real. I spent many hours on special needs forums, asking other mums if my son had this condition. I was often sent links to a poem called "Welcome to Holland" - an analogy which compares having a healthy child to a fabulous trip to Italy and having a special needs child - where your journey takes an unexpected turn and you end up in Holland. I hated Holland. I didn't want to be there. I wanted to be on the beach in Italy, building sand castles and eating my body weight in gorgeous Italian ice cream. That's where I should be. That's where I was supposed to be. S refused to talk about it, he didn't believe it so I spoke to my mum often about it - she was the only other person who saw what I saw and she probably stopped me from going mad back then.

Many, many appointments ensued. Paediatricians, speech therapists, support workers, all working with L and giving their ten pence worth. And finally, at the ripe old age of 4, L was  diagnosed with autism spectrum disorder. The last 3 years have been emotional to say the least. It's been a long journey and there have been many tears - and I'm sure I will shed many more along the way. But things are different now. The sadness and anxiety from 3 years ago has lifted. My beautiful baby has grown into a beautiful boy who is smart, funny and a joy to be around. Autism is just a little part of him and it's a part of all of us. I'm not the same person I was when he was born. Motherhood changes you anyway, and being a mummy to a special little person changes you even more. L is teaching me more about life than I could ever teach him and I appreciate so much now - I'm learning what life is all about and it's all thanks to him and a little thing called autism.