My sons Autism diagnosis part 2

So to continue from part one, which can be read here: Autism diagnosis part one.
After the terrible summer I had done lots and lots of research into autism, and I was convinced. It was so obvious now!
Then came Ed starting school. I wasn’t worried. He had loved preschool and had gone straight in without looking back on the first day, so surely he would be the same at school.
Again ha! He was very quiet that morning and as we started to walk to school he started cry and scream. He refused to move.
I got very frustrated as we were going to be late for his first day.
It was awful and I ended up doing half the walk with him clinging on to my leg with me dragging him along the floor. I carried him the rest of the way with him screaming and crying. He was bloomin heavy!
It wasn’t until we got there and calmed down I realised he was terrified. It took everything I had not to just take him home there and then and forget about school!
I tried to explain to his teacher how scared he was but she dismissed it saying that all the children were nervous!
This went on every day for a quite while and he was so scared he refused to walk and I ended up either getting the bus or taking him in his pushchair with his blankie over his head for safety to block out the noise of the traffic.
I had quite a few funny looks and even a few comments but I didn’t care. He was getting to school with a lots less stress
. Then I got called into school to say that after I had dropped him off that morning he had run back out of school and was found by a parent who took him back him. I couldn’t believe it! What if the parent hasn’t found him!! I can’t even think about it.
They also said that he kept leaving the classroom and wandering to school. They decided to get him 1 to 1 support to help him and keep an eye on him. From that day I stayed until the door was locked to make sure he didn’t come back out.
It all calmed down a bit and we plodded on.
We had our 6 monthly appointment with the paediatrician and told her everything that was going on. She said that Ed couldn’t be autistic because he cuddled us and he made eye contact with her, once! She gave him a diagnosis of social communication disorder instead. I wasn’t convinced.
At the next appointment she said that yes it possibly was autism but she didn’t want to diagnose him yet because he was so young. He was 4 and a half at that point.
6 months later we were there again, she was saying the same again, that she didn’t want to rush the diagnosis.
That was until ed pooed and weed on her office floor! After we had cleaned him up and went back into her office she said, actually I think we will push for a diagnosis! Thank you Ed!
We had to get another professional to agree to it as well. So we waited and we waited. We were told that there wasn’t anyone qualified enough to do it.
In the mean time I couldn’t stand to see him struggling so much compared to the other kids. And compare I certainly did. Why was my son doing these things and not anyone else’s?
I completely and utterly blamed myself. I obviously didn’t talk to him enough when he was a baby. I obviously didn’t give him enough stimulaton. It was my stupid body that couldn’t hold on to him any more and that was why he was premature.
I sunk deeper and deeper into depression and self blame and guilt. I spent the days crying and just praying for bedtime so that I could have a break from everything while I slept.
Obviously Ed was picking up on all of it and it was making him more stressed which led to everything being worse, so I blamed myself for that and it became a huge awful vicious circle.
I started to think very seriously that he would be much better off with out me in his life. I wasn’t suicidal as I feel it’s not fair on the people that are left behind, but I thought that if I wasn’t in his life, I couldn’t do any more damage and he would be happier/better without me.
The only thing that stopped me from leaving was that when I thought of never seeing him again, it broke my heart.
I felt selfish for staying just because I wasn’t strong enough to leave! I decided that if I was going to stay then I’d have to be better, fixed.
I went to the doctors and told her everything. She was amazing and put me straight on strong anti depressants and sent me for councelling.
It was a complete turn around for me, but a long process and it helped to see that it wasn’t my fault.
It’s hard to think now that I was ever in that place and it still hurts but I’m so much stronger now and I’m the best mum that Ed has got. I will fight for him and hopefully help others in the same situation along the way.
We finally got His diagnosis in September 2013 when he was 6. It had been a long time coming and it was completely expected but wow it still felt like a kick in the face!
I didn’t realise you could feel so many emotions all at once! There was relief, shock, guilt,fear I think pretty much every emotion there is. It felt so final. Even though there was never any doubt or even hope but that was IT! He had a label. It has meant we can get more support and courses ect which is great. And once the shock wore off everyone was much happier and calmer for it.

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My first blog post

So I thought I’d start a blog for my autism page spectrum pie. To be honest the thought scared the crap of me. The thought of putting our lives out there when I’ve seen other pages taken down and ripped apart by haters and trolls. But then I thought if my blog helps just one person feel like they are not alone, like they aren’t doing the worst job of parenting in the whole world (been there!) Then, well the haters can kiss it! Autism blogs and Facebook pages quite literally saved my sanity when we first started our journey down autism avenue. I will go into it more on a later blog because I think it will be a big one and id rather concentrate on it. So here we go, the beginning of our autism blogging journey, I hope it helps others, I know its definitely going to help me! I blog for therapy, it really helps getting it out of my head. It will be MY journey as a parent of an autistic child, and I’m’m not going to hold back. I think people need to know the reality, that its not all the cute quirkiness, don’t worry there will be lots of that too but that’s the point, autism is never static. It changes day to day, minute by minute. Something that is the latest obsession one day can be the most terrifying thing the next. This is why we need awareness. The more the better! I just hope I can do a good job and not upset too many people 😉

My sons autism diagnosis part 1

So this one is really hard for me to write but it has to be done, for me at least. Talking is therapy you know!
Ive been meaning to write this for a while but I was scared of what emotions it would bring up, the guilt, oh so so much guilt. The grief. And so much more.
Just so we are clear, this is about how I felt, me, not Ed, not anyone else because I dont know how they felt, I can only speak for me.
So here goes. My beautiful boy was born 11 weeks premature at 29 weeks gestation. You can read about it here so I wont go into all the detail again.
But because of that, he had a check up at the hospital every 6 months. To check his health and his development.
Every single time I would get into a panic, what if they found something wrong with my baby!
I think deep down i knew something wasnt right, and now I look back, knowing what I know now, it was obvious, I just didnt want to admit it, even to myself.
So every appointment they would ask questions about his development. Was he doing this? Was he able to do that? And each time I would say yes of course he is!
It was almost as if I gave them the answers that they wanted then it would make it true and they wouldnt be able to say there was anything wrong.
We plodded along with our lives. Ed was a bit late crawling but I kept telling myself that it was because he was premature and had a lot of catching up to do. After all his weight and growth were great so he was just catching up with that first. He was late walking too. But then every child does things differently dont they. We then developed our own language, had our own words for things but it was fine because we knew and that was all that mattered. Then he started preschool and loved it. Again life was quite normal (well there was that time we were late picking him up and he tried to run out of the door to get across the road to our house, and it took 3 staff to calm him down. But it was just Ed, he was just quirky, wasnt he?). Until the day i was called in to the preschool, they told me they thought there may be something wrong with his hearing, because he didnt respond to things and didnt interact with other children. My heart sank. My poor baby. We had his hearing tested and he hated it, he wouldnt do what was asked. I put it down to the lady testing him being horrible (she was!) And the fact that there was dinosaurs but he wasnt allowed to play with them. Anyway they decided that he had glue ear. That explained a lot i thought. His now obvious speech delay, the fact he didnt always respond and the fact he hated loud noises. Time went on and he was referred to a paediatrian. More and more bells went off in my head but i didnt want to think about it so pushed it to the back of my mind. Then came the awful summer. It was the summer between preschool and him starting school. I have no idea what triggered it all, maybe it was the stress of starting school but again he couldnt tell us. We wanted to do some nice things with him so we took him to a big park with a big play area. As soon as we got there he started screaming and screaming. He was clawing and clinging on to me like he was absolutely terrified. We couldnt work out what was wrong, and asked him if he wanted to leave but he said no. It took another 20 minutes to calm him down and then he went off to play as if nothing happened. That was the first time that the word autism flashed in my head. I tried not to think about it (again!) Next we took him to an old train station where they ran steam train rides. Trains were his favourite so he will love it. I couldnt be more wrong. He wouldnr even go near the station, he went rigid and started screaming again. He wanted to go back to the car. He didnt stop until we drove out of the car park. Poor boy was white as a sheet and shaking. By now I was really thinking there was something wrong. I started to do some research. Most of the signs listed for autism matched Ed! I became more and more convinced. I was heart broken but determined to find out as much as I could. We took Ed on holiday, again I thought he would love it. He loved it and hated it in almost equal measure. First there was the lights on the fruit machine. He hated them and ran out of room so he couldnt see them. Then there was the swimming pool. He desperately wanted to but wouldnt get in, more screaming. That night we went to the entertainment where there was a disco. Ed got to the door, took one look and ran away screaming. He hid under a table and wouldnt come out. After about half an hour of sitting with him under the table. He came out and ran over to the door, he took one step in then ran back under the table. 10 minutes later he came out and ran to the door, this time he took two steps in the room then ran back to under the table. This went on, each time him taking another step closer until he reached the dance floor. Then he was off! He loved it, he spent the whole night dancing and didnt want to leave when it was finished. All of the next day he kept asking to go to the dancing. I assumed that night would be easier. Ha! We went through the same thing as the night before with him hiding under the table and taking a step in each time again. He had a lovely time until the entertainment came on, it was an awful clown. He was really horrible and took the mickey out of Ed because had his blankie on his head for ‘safety’. Ed didnt understand that he wasnt allowed on the stage so kept climbing on there too get the balloons. We were told to control our son or leave. Then we were told by a member of staff that another parent had complained about their treatment of Ed and if we had a problem with them to see the management! Well I burst into tears, it had all been too much. I was glad to get home and that was when I put the wheels in motion to find out what was going on with Ed. No more denying it and no more burying my head in the sand!
To be continued…….

Revelations

So yes revelations!
This is quite a scary one for me to write but I’m gonna put on my big girl pants and be a big brave girl!
Deep breath!
I am pretty sure (99.95%) that I have Aspergers!
There I’ve said it out loud (sort of). For anyone that doesn’t know, Aspergers syndrome is a high functioning version of Autism.
Anyway. Ever since we realised that Ed had autism, I’ve been able to understand a lot of his ‘stuff’ because I do it too, especially the obsessions, anyone who knows me well will agree But I thought I don’t fit into the stereo type, I’m nothing like Sheldon Cooper ect.
Then I came across a post by https://www.facebook.com/MuthaLovinAutism?fref=ts , who is an amazing person and is on the spectrum herself and so are her four children. She wrote a blog about her and her daughters autism and how it was different from the boys,
This led me to researching into how autism/aspergers presents very differently in girls than it does in boys. http://muthalovinautism.wordpress.com/2013/09/15/she-is-me-i-am-her-the-female-with-aspergers/ In fact until quite recently it was thought that only boys had autism.
So I’ve been reading as much as I can find on women with aspergers and quite a lot of it described me to a T! It was a bit of a shock to be honest but it also made complete sense.
I also did every quiz I could find and every one of them said I was very likely an aspie ( nickname for aspergers) it’s just an internet quiz I said! Then I found out the questions are the same as the ones they use for diagnosis!
I even did the quiz asking my husband if I did certain things and found out a few things that I do and I don’t even realise, rocking when I’m upset for example, which is a stim (a stim is something autistic people do to soothe themselves). Then I thought well surely everyone must score that high! So I asked a few close friends to take the quizzes and lo and behold Their scores were completely different to mine! In fact none of them were surprised at my high score, it just made sense.
Most of my life I’ve felt different, in fact when I was little I was convinced that my life was a dream and any minute I would wake up in my real life where I belonged. In my adult years I’ve tried to ‘cure’ my self or make my self more like everyone else by taking herbs, medication even spiritual stuff like crystals, healing ect, if I just do this I will be normal. Obviously none of it worked!
I’d have periods where everything was just too much and I’d breakdown so I’ve been on and off anti depressants for years, I’m now thinking that these are meltdowns and it’s ok to feel like it.
It’s been a huge relief to know that things that I’ve hated about myself and berated myself for for years are actually not me being being f*cked up and ‘wrong’ but actually just because my brain is wired differently.
I’ve always been told I was weird but in a good way so this may not be a complete surprise to some.
I have thought about getting an official diagnosis but it’s almost impossible for adult women to get a diagnosis as they’ve learnt to cope and hide it so well over the years. Plus I have a huge fear of doctors ( apart from Doctor Who but that’s another obsession! ) a lot of doctors are still under the impression that it’s very rare for girls to have it ( see above although this is getting better) and it was hard enough getting a diagnosis for Ed let alone a 35 year old who has coped so far. I also don’t think I could handle the process. I could go private but it costs around £400. Plus I would only be getting it to prove it to other people as there is pretty much no doubt in my mind. This isn’t a bad thing, its a good thing! I’m finally a lot more at peace with myself and I’m very proud to have a rainbow brain just like my amazing son! Please don’t feel awkward about it, I certainly don’t and feel free to ask any questions 🙂

My quiz results
Your Aspie score: 145 of 200
Your neurotypical (non-autistic) score: 57 of 200
You are very likely an Aspie
poly12d

a list of female aspie traits
aspie traits (1)

So there you go my name is Hannah and I have Aspergers!