The autism diagnosis....

Although we had concerns about our son and his development, you can never prepare yourself for the words "i think you should go ahead and get him assessed". I suppose i knew that something wasnt quite right, and even though we had done our research on autism and he ticked a lot of boxes we so desperately didnt want it to be. I think that was in October. We were told we couldnt get in for a evaluation until june. I thought waiting until june was just going to kill us! Luckily we were put on to a speech pathologist who was qualified to do an autism assessment and managed to squeeze us in, in December. It was the longest, most tormenting couple of months being in limbo... We found ourselves watching and questioning everything our son did, and constantly comparing him to other kids. If he behaved like the other kids we could almost convince ourselves he was 'normal' and mustnt have autism, and then on the other side, would watch him line up his toys, his lack of speech, meltdowns, the fact that he in general would march to his own beat.... We knew. It became a horrible experience being around other kids his own age. I so desperately wanted him to be like them. I found myself getting extremely jealous of the other parents and there typical developing kids and often wondered 'why me, and not them?' I got angry with the other kids and there achievements, I hated parents telling me what fabulous new thing their kid was doing. I hated my friends for having their family around them for help and support when i felt we needed it so much more and our families were so far away. I started to distance myself... I was so sick of comparing my boy, i was so scared of others noticing the differences and wondering what was wrong with him. I constantly felt like we were horrible parents and that everything we were trying was wrong. Why would their kid listen and not run on the road and ours doesnt? Why cant he just hang around us and listen to what we ask of him? Constant questions... We became more and more withdrawn as a family. Going anywhere was just torture. We were either comparing him constantly or chasing him constantly. Leaving the house became harder and harder.

We took him for his first assessment in December. By then i was fearing that we wouldnt get the diagnosis! I thought 'if he doesnt have autism we must just be useless parents'. I wanted to know for sure and move forward. I wanted to be at peace. I wanted an explanation that i could offer to others, to prove we wernt just shit parents. As much as we expected the autism diagnosis, when she confirmed it for us it was still a lot to absorb...We knew what she was going to tell us but it was still a knife to the heart to actually hear the words.. We had so many hopes and dreams for our son and now had to come to terms with the fact that many of them probably wouldnt happen. Elliott had always dreamed of playing footy with Finn. When Finn was born and we learnt that he was a boy, Elliott instantly started to dream! A little off-sider to help and tinker in the shed with him like he had done with his Dad.. They could go diving together, play footy together. Being a female i thought about him having his first girlfriend, getting married, having kids of his own... We wanted him to experience all the joys in life that we had experienced.. Falling in love, meeting your baby for the first time, kicking your first goal in football.
Suddenly we realized that these things might not be on the cards for Finn. They might be, but who knows? We had always considered the fact that he may not choose these things for his life (and that would be fine) but there is a HUGE difference between choosing not to, and not being ABLE.

We couldnt really move forward or access much help until we received the second diagnosis. Though Finn was getting speech and occupational therapies, once a month, for an hour. We had to wait until the end of February. We only told a selective few people, our close family and only a couple of friends. Living in a small town where everyone talks, we wanted to make sure it was a definite before word got out. We also needed to give ourselves time to process and grieve. Elliott didnt like talking about it too much. He didnt want it to be the focus of conversation.. he needed time. Me being a talker, found it therapuetic to talk.. It was constantly on my mind and i really couldnt concentrate on anything but Finn and autism. I read.. I read anything and everything i could find on autism. I read so much that i got to the point of not even being able to process what i was reading. I neglected to pay the kids attention and became frustrated when they wanted something because i thought research was what i NEEDED to be doing. Knowledge is power so they say and i needed to let some light into what was an extremely dark room, and if knowledge was going to help me with that then that's what i did. It seemed to almost backfire, I read so much information that my head was so full and i still had little understanding of the complexities of the disorder. Because its a 'spectrum' no 2 kids are the same so i couldnt find what i was looking for. I couldnt find that bit of information that was going to tell me exactly how it was going to affect Finn and us. Nothing could tell me what was in store for him and what the future would hold.

After we got the second diagnosis and it was concrete- there was no mistake and no going back, i found myself looking at my boy completely differently. People had told me "it will be ok, he's still the same little boy we know and love", but he wasnt! Not at all. I felt like i didnt know him, didnt understand him. He was first and foremost autistic. It was horrible. i felt like he was a stranger to me. It was like this for about a week until one day he did or said something that lit me up and it was a real light bulb moment, i realized he IS still my boy! I do know him! He is first and foremost my son!! It was such a huge release to come to this realization.

Throughout this whole time our daughter, our baby, was growing up before our eyes. We wernt even coming close to giving her the time that she deserved. Not only were we going through our own personal grieving and hurts because of Finn's diagnosis, we still had a full on toddler to deal with! He was running away from us every chance he got, having massive meltdowns numerous times a day, challenged us with every activity. We couldnt change his nappy, feed him, bath him, wash his hair, brush his teeth, leave the house, leave the car, without a fight! Everything was a battle with him and we were physically and mentally exhausted. We couldnt leave him alone with his sister because he would hurt her. We couldnt have a shower or even go to the toilet without worrying he would escape, as he had learned to unlock the front door. He had no sense of danger and would bolt straight on the road, he wouldnt come back if you called him and if you chased him he would run as fast as he could-straight towards the highway!! We had to watch him constantly!!! I started having dreams about him getting hit by cars. I wouldnt take both the kids out on my own (still dont!) with fear that he would run away from me and i wouldnt be able to chase him or catch him in time while holding willow. It was just too unsafe and too scary. Only a very few people understood. I dont know exactly what they thought, we were lazy and couldnt be bothered?  We didnt WANT to go out? (yeah right!!) If youve thought that we choose to stay home because we dont like social outings or cant be bothered, you are seriously mistaken!!!!

The main reason im choosing to share this blog with people we actually know is to give people an insight into what we have been going through. Im sick to death of feeling like im being judged!!! Im sick of hearing about what everyone else does with their 'typically developing' kids and how easy it is. No i can not put my child to sleep under a table (we struggle to get him to sleep at home, thanks!) We can not just go to the pub like others and let him play on the grass with the other kids (there is a road right there if you havnt noticed, and it really isnt enjoyable spending the whole time were out making sure he isnt on it!) I can not take both kids to the shop by myself (again, there is a road, yes he can open the shop door, yes he does, and yes he flee's from me).  Unless there is a fence he cant escape from, going out to 'socialize' really isnt on the cards for us at this point in time. He is getting better, but were not quite there yet. Think im being over the top and paranoid? Then think for a minute what it would be like seeing your kid get hit by a car. It is a HUGE fear of mine and I dont believe an un-just one. As i said, i have nightmares about it, about not being able to get to him in time, seeing his lifeless body laying on the road, hearing the thud, seeing the car connect.
There is no way in hell im going to risk this becoming a reality. He is my baby, he is irreplaceable. So if it means we stay at home more often than we'd like, so be it. He is safe.

Because of all of this going on, and getting accustomed to seclusion, we were both falling into a hole. I, myself was in a very dark place for awhile there. I felt sick all the time, i was anxious, i couldnt eat because i felt sick and i felt dizzy because i wasnt eating. I started to dread leaving the house. I would get dizzy when i was out, in supermarkets, trying to hold conversations with people.. I always felt i was about to pass out.. It was an awful feeling.. Even when i didnt feel dizzy, i felt anxious about feeling dizzy. I got anxious going to shops and places were there were a lot of people fearing that i would feel sick and dizzy and pass out.I had been to the doctor about it a lot. He kept telling me it was stress. Blood tests had come back normal. I felt so horrible i would start to think that maybe there was something physically wrong with me, maybe i had cancer or a tumor? I worried about what would happen if i died? How would Elliott cope with it all on his own?! This would cause me to have panic attacks. My chest would close up and i couldnt breathe. I was so conscious of every restricted breath going in!! Of course this would make me worry more that there was something wrong with me phsically. It was a vicious cycle.
  I told Elliott and my best friend. Luckily they were amazingly supportive and understanding. Poor Elliott. As if he needed something else to worry about. They helped me through it and helped me out the black hole. I cant thank them enough, and i bet the dont even know what theve done...

I think (hope?) having our son diagnosed with autism is one of the biggest and hardest things we will ever have to go through. We are slowly learning about how to help him and are slowly seeing the light at the end of the tunnel, slowly gaining more understanding, slowly learning to breathe again..



  

An introduction

So ive been thinking of starting a blog for a while, and today's the day im putting that plan into action. Im using this as my form of therapy as ive always been a fan of writing as my way of venting built up frustrations  and emotional shit.
To any of my friends or family that may be reading this- this is for ME. i am by no way wanting to upset, stress, alarm or offend anyone. I am also not going to sensor it for the sake of whoever may read it. If i was to do that then there would be no point in doing this in the first place. So i guess this will be like my diary. my diary that ill share with anyone that wants a read or wants some insight into 'a day in the life'. A day in the life would probably bore the majority of people as i am merely a stay at home mum to 2 kids. 1 with Autism. This will probably feature quite heavily in anything that i write as it is enormous in our world. If you dont know what autism is then google it. As my son only got diagnosed 6 months ago i am by no way qualified to give an explanation into the complexities of the disorder. 6 months may seem like a long time but when your talking a life-long disorder that we have to learn about, to help our son navigate his way through this world, the daily challenges of general family life, money, work, a relationship, a baby, therapies for our son, 6 months is nothing. not to mention the fact that were still going through the grieving process of having our first born, only son diagnosed with ASD. Some days i think 'everything happens  for a reason and we'll get through this just fine' and i feel like i have super human powers and can conquer the world and anything it throws at us.. Other days i want to kick autism in the shins for imposing itself on my baby and our lives, these days leave me feeling completely defeated and powerless. Some times i can go through all these feelings a number of times a day.
So you, dear computer screen, will be my vent. when my heads all filled with crap and i cant make sense of any of my thoughts, this is where i will turn (if i can manage to find the time)!