Our Journey So Far

This is Isaac, my beautiful precious little man. Isaac turns 7 this month. Isaac has autism (and several other co-morbid diagnosis which I won't bore you with).

Isaac was born 18 April 2007 on his Uncle's 33rd Birhtday, I was absolutely determined that he would not share a birthday with anyone but he clearly had other ideas and made his entrance into the world rather dramatically on that day.

Whilst I was pregnant with Isaac I worried how I would manage another child, we already had 3 children and if I'm honest, having a 4th was not on our agend, once this initial shock wore off we actually became quite excited about his arrival.  I joked throughout my pregnancy that we would be so laid back with this baby that we would would not even realise we had him, after all, there is no shock in the world like having your first child, all the rosy ideas you had about how perfect life as a parent would be soon disappeared as you walked around in a sleep deprived haze. Having a second child was as much of a shock, I thought I knew what I was doing and then quickly realised that juggling the demands of a newborn baby with the demands of a 3 year old who decided that sharing his parents was not something he was keen on was no easy task.  By the time we decided to have number 3 I had resigned myself to the fact that I clearly knew nothing about babies except that they had their own agendas and would not willingly fit into any routine that you had planned for them! Thankfully, Alice (baby no 3) was a chilled out, happy baby who just slotted perfectly into place, hence my misconception that things would be the same with Isaac when he arrived.

Even as a very tiny baby I remember having a nag in my mind that something wasn't quite right, I mentioned to my health visitor when Isaac was 2 weeks old that he didn't look at me when I fed him, infact he would actively move his eyes away when I looked at him. At his 6 week check I mentioned that he seemed very unsettled and cried a lot, however, I wasn't concerned as I knew from having Megan that some babies did cry.  The difference here was that Megan cried until she was picked up and if we did go out and she was in the pram she would eventually settle with the motion of the pram and sleep. Isaac on the other hand just cried, he cried if he was in his chair, he cried in his pram, he cried in his car seat, he just cried, nothing it seemed would settle him.Eventually he settled into some sort of routine and although he still cried alot, once he learnt to sit up he seemed happier.  He wasn't interested in his toys, they seemed to make him very agitated, he would sit for ages twisting his little hands in circles in front of his face watching them as they went round and round. He did smile, and when he smiled I was amazed by how stunningly beautiful he was, with his light blond hair and huge bright blue eyes. Those smiles though were not for me, they were at objects, rarely people. Isaac didn't babble as such, there was no 'ma ma ma ma' or 'da da da da' instead he mimicked what I said, for example, when I changed his nappy I would repeatedly say 'IsaacIsaacIsaac' and he would repaeat similar back to me.

When I took him for his 8-10 month development check I mentioned these things and also the fact that he was not attempting to get around either by commando crawling or proper crawling, he didn't roll over either, I was told not to worry about it. Isaac crawled the week before his first birthday but by 18 months was showing no signs or walking.  We were referred to the community paediatrician and Isaac was diagnosed with having hypermobile joints, this was the reason that his motor skills were delayed.  6 months later at a review it was noted that Isaac had a much larger than average head circumference, when he was born his head size was average, now it was above the 98 centile, we later discovered that this can be a feature of autism.  At that visit I mentioned that Isaac seemed generally very clumsy, he would trip over nothing and walk into things. When he fell over he had difficulty getting himself back up off the floor and woudl either crawl over to something to pull himself up on, if there was nothing available he would roll on to his tummy, get on all fours and then walk his hands up his legs until he reached a standing position, this is called the Gowers manoeuver and is an indicator of Muscular dystrophy, Isaac was tested for Muscular dystrophy, I felt numb, I didn't really know much about it except that it was life limiting and I couldn't even think about my precious boy having something so devestating. I prayed and cried "Please God, anything but that, not my baby, not my precious boy." My prayer was answered and thankfully the tests all came back negative. 

As time went on Isaac didn't seem to be developing in the the way his older brother and sisters had, he didn't play, he loved his trains, he loved them a lot, infact they were all he was interested in, but he didnt play with them, he lined them up, always in the same order and if one was moved he would get cross, and by cross what I mean is that he would throw every single one of them around in temper. He would watch the same epidsode of Mickey mouse clubhouse over and over and over again and get upset if we put another episode on for him then he would walk around the house reciting the script from the episode word for word. He walked on his toes, he flapped his hands, he licked people and objects and was obsessive about his routine. Nothing, and I mean nothing could change without his having a huge tantrum that would last well over and hour, which is pretty exhausting. When he was having one of his tantrums he would seem to develop a super human strength, he could lift and throw things that would be impossible for a 2 1/2 year old.  Potty training was out of the question,if I even tried to put a pair of pants on him he would scream like I was killing him, he pulled and scratched at his skin where they touched and trying to get him to sit on a potty or the toilet was like mission impossible.

All these concerns I metioned at his next review, that was the first time the word autsim was mentioned. Isaac was apparently showing some autistic traits and the paediatrician referred us to the early years support team so that further investigations could be carried out. At that point, my only knowledge of autsim was having watched rainman (not a lot then) and that was not my son. As I sat in the consulting room I politely agreed with the paediatrician but decided he was clearly wrong. I went home from that appointment and spent hours which turned into days on the internet, researching and reading so that I could prove he was wrong, turned out that the more I read, the more I could see Isaac.  I joined an ASD forum and posted numerous questions about him, all came back with the same answer which all pointed to him having autism. It suddlenly hit my, my precious boy could have autsim. I was absolutely devestated and terrified, what would life hold for him?

Then followed 18 months of appointments and assessments, meetings where everybody sat round a table discussing our little boy as though we weren't sat there. During that time opinions changed, he could have autism, he doesn't have autism, all manner of explanations were given for his difficulties. He is the youngest of 4 he hasn't had enough attention, He is the oldest of 4 he has too much attention, he is babied too much. All toddlers go through this phase (funny that because none of my others did), I think you are seeing things that are not there, boys are different to girls (No Really!!!). I think the most upsetting one for me was when I was told to go and see my GP and sort my own mental health out! At this point I didn't know what to think, was it me? Was I imagining it all? Was it my fault for those early months of pregnacy worrying about whether I would manage another child? Was this all in my head?  Speaking to other parents I realised that many of them had been put through this too and I decided from that point that whilst I still had breath in my body I would fight for my little man. I became more assertive, aked more questions, stopped agreeing with what everybody else said and started to demand answers, I was actually fighting to get a diagnosis for Isaac.

That diagnosis arrived a week before he turned 4, no frills, no breaking it gently to me. After a lengthy appointment at our home the paediatrician turned to me and said that it was quite clear that Isaacs difficulties fell within the autistic spectrum, however he was quite complex because he had several other things going on. He also has motor planning problems, hyper mobility, sensory processing disorder and emand avoidanc characteristics. I was actually relieved and oddly very pleased, I phoned Phil and was literally celebrating as I told him that our son had autism, it was very surreal, I mean who is happy about that? That feeling of elation lasted all of 2 days until the official letter arrived through the post and I saw the words in black and white, those words floored me, I felt like I had been hit by a steam train, I cried like my heart would break, infact my heart was broken. For a long time I couldnt look back at pictures of Isaac as a baby, he looked so perfect, so, normal for want of a better word.

Eventually I stopped feeling sorry for myself and realised that he was perfect, he was still my Isaac, my beautiful little man. 

Three years down the line and it has been a huge roller coaster of emotions, the highs have been amazing and the lows have been lower than I ever thought possible but we have learnt so much.  We have learnt that life takes a different pace now, there are days when it feels as though we are travelling at 100 mph and other times when it is so frustratingly slow, we have learnt that what seem like small steps are actually huge milestones.  I can still remember the very first time he waved and said goodbye to another child, yes I cried but they were tears of sheer joy at what he had achieved, I honestly can't remember at what age my other children did this, not because it's not important but because it is something that they just did, it's not that we took it for granted it is that we never realised how amazing it was. We started to look at the positives and not just the negatives and we found out that the positives and the achievements outweighed the hard bits.

So here we are today, there are still days when it hits me all over agan and I cry like my heart will break all over again but then I pick myself up and realise how incredibly blessed I am to have a happy, healthy, stunningly beautiful little boy.  Isaac now attends a special school for children with autism (I will write another post about that journey soon) and I now see his future filled with hope, it is no longer something I dread or worry about (well most of the time anyway), he is flourinshing there, he is loving school for the first time and he doesn't have to fit in there, he can be exactly who he is and that is Isaac.