steps forward!

Being honest, it has taken me a very long time to come to terms with how much my life is different from the way I had planned it. I am not working, am a full time mummy and basically have become a therapist to my son. Its not that I am upset about the changes, it is just not where I thought that my life would head. Autism has changed our lives. It means that things that most kids his age can cope with or like, i have to understand that he may just not be interested, does not have the comprehension or understanding to cope with it or may just send him into a meltdown or freak him out.

This week however has been a great week as Jellybean has taken some great steps forward. Mostly, Jellybean ignores other children when it comes to play. He may laugh or look at what they are doing but generally does not try to join in or follow in their game until quite recently but this week has been big for him. He actually initiated play!!!! He cannot say PLAY but he gave his sister a PLAY compic and after I told her what it was ( I am having to teach her compic so that he can talk to her too) they went off the the bedroom giggling to play a game of hiding. They closed the curtains and doors till it was really dark and were hiding. Music to my ears!!! My kids playing together!!! Woo HOO!!!!!

He has also made a step forward with his school friends. He actually got excited when they arrived at school wanting to say hello to them and smiling so big. It was AWESOME. He wanted to see them which is something he would never normally care about. Even his school teacher has said to me that he doesnt really acknowledge other children with play activites, that he prefers to just do his own thing. Me...super excited but I did think...mmmm I wonder if his teacher will tell me to watch/stop this behaviour as it may be distracting and sure enough that afternoon at pick up that is what she said. Thankfully though she said just not to let it be a pattern for him having to say hello and goodbye to everyone, to mix it up so that he doesnt get stuck on having to say hello and goodbye to everyone. I think she did realise that it was a step forward for him.

But, their rule at school is to have a goodbye routine and it is expected that Jellybean say hello and goodbye to everyone individually...so it is pretty obvious that once he got the hang of that, that he would try and generalise that skill to say hello and goodbye to other mums and kids when he could!!

Also after a false start last week and me actually turning up to swimming lessons for jellybean a week early...we started swimming lessons again!!!

HE DID BRILLIANTLY!!!

It only took him a few minutes to settle in and feel comfortable and to stop looking over at me and pointing at me to come in/over to him. He liked his teacher almost straight away and he laughed and smiled the whole lesson. She was awesome with him, so at ease with him, talking in short sentences and praising him when he did great following of instructions. He was also happy to say goodbye to her even saying "Bye Lou"...I think the only words he said during the whole class but thats a start. he was happy in the water, happy to have Lou hold him and take him away from me to swim, happy to go underwater and even laid on his back to count to ten and practice floating. FABULOUS!!

Jellybean used to love swimming but when the ear problems and autism problems set in, it was just so hard...So so so very excited that he likes it again. Babygirl loves swimming and she swims with her daddy on Saturdays. If Jellybean likes swimming again, it means another place we can go as a family and both kids will like it!!

lesson learnt...

Needing to have a bit of a vent today.

Jellybean goes to a great school, he is making lots of progress there which is awesome but they are so GODDAM FRUSTRATING!!!!!

It is like a closed shop. I have no idea what they are doing really or how they are doing it. You basically have to trust them with your child. It is a strange environment. All the parents chat all the time about the fact that we dont know what we are doing and we are not told how to do it "their" way. Like we all somehow missed the training courses but they assume we know what we are doing. We are very quickly told off when we do something they are not happy with but we aren't often told how to do it the right way.

I am fudging my way through a few things namely to try and get him independence on going into class. I have no idea what prompts I should be using or shouldn't be using but they are not telling me what to do so i am trying my best. One of the parents was trying hard with their child today and I said to her what I did with Jellybean and it worked well for her child and she was more independant. The parent was really happy with how it went and we both went away happy.

At pickup it was written in RED pen that i was to focus on my child only and the staff will deal with the other children in the class....well if thats the case HELP HER!!!! Every day we all are totally confused and I try and help her and get told off...grrrrrr. I know its not my place to interfere in the schooling of other children, it is not something I really want to do either. It was just a conversation with a little bit of pointing, not intentional to affect how they are working with the child but as we were outside the class the teacher overheard us and said that because she knew what was going on then she had to tell me not to do it. oh well, learnt my lesson. Will not be doing that again!!!

I just found an awesome swim school (hopefully)

Today one of my friends took her son (Peanut) get assessed for autism and she has just messaged me to tell me that he met the criteria and is autistic or auesome as she said.

It really has bought up some memories and feelings about our diagnosis day as she has been heading towards theirs.

When Jellybean was diagnosed, I did not know any other parents with an autistic child, had not met another autistic child (or so I thought ) and was really and truly lost. I remember not knowing what to do next and really not knowing who to talk to. All of my friends have "normal" children and I really wanted to talk to people who had already been through all this and could tell me what to do. Unfortunately I did not have that support and my husband and I had to fumble our way through and make decisions hoping that they were the right ones to make and the right ones for Jellybean.

I generally am one of these people that dont like making decisions and hate change....prob am somewhere on the spectrum too lol.... but I am really happy with were we are now with a great school, support network of other parents and great therapists. I am really happy that Peanuts mum has that support group too, that she has people to ask for advice and to listen that have been through it all before. I am really happy that Peanut will finally get the help and support he needs and think he will do just amazingly!

On a positive note, i have managed to find a swimming school for Jellybean. He is downright dangerous around water, he just pindrops down and comes up laughing despite the fact he was drowning. So, anyways I have been wanting to get him into swimming lessons but havent been happy with everywhere I looked at. Whilst talking to mums at school, one mentioned this program and we start Friday. When I said he was non verbal, they said no problems we will get out the visual supports and compic!!!! Dont even have to make them myself  (insert happy dancing me).

                                                Jellybean at his first ever swimming lesson

We took him from the time he was really little and started lessons at 6months. At 2years when he had lots of ear infections and needed grommets we had to stop as he would not wear earplugs (damn sensory issues!!!!) but once they had fallen out after a year it had been way too long and he could not cope with indoor pools and freaked out. So hoping that he is okay on Friday...stay tuned :-

I hate autism but I love you.

At school last week, one of the kids in Jellybeans class walked right up to him and gave him a two handed shove straight in the chest before we had gone into class. Jellybean went flying across the pavement with a big suprised look on his face. He did not retaliate but looked very surprised and confused.

The first thing that i have to say is that I dont blame him or him mum for his actions. This boy was having a bad day and struggles to express himself and instead lashes out. He is learning and his mum is trying so hard and honestly I am not upset.

I realise that all autistic children have issues and to quote something I read this week "autism makes as much sense as a screen door on a submarine". It is so true, Autism to me does not make sense, i hate autism but I love Jellybean. 

But I am torn because autism is a part of him, his personality, his quirkiness and no matter what I will love him just the way he is...but it makes my sons life hard. As a parent I think you just want your child to be happy and life not to be hard. Jellybean is a really happy kid. He has a gorgeous smile that shows off his big eyes and dimples. But, he struggles. He is frustrated. He gets annoyed that we cant understand him, he gets upset that he cannot tell me what he wants, that the world keeps changing and why cant he just be in control and do what he wants when he wants to. I truly just want life to be easier for him, for him to not be anxious and confused by the world. 

When he was little, he struggled with crowds and shops. he hated all the lights and noise and people. Even now he likes to hide in the pram with the hood down and I think pretend he is not there when things get too overwhelming. He has had major tantrums and meltdowns in shopping centres, parties, carparks and various other public places and when i was struggling to control him and the embarrassment was setting in with everyone looking at us I would say i love you and will always love you no matter what. Somehow it made me feel better. It didnt stop the starers and the tut tutters getting to me but it made me feel like my son is the most important person in this situation and my goal was to make him feel better not all the starers and the tut tutters.

So, anyway this incident at school made me think about my little guy and appreciate the fact that he is so gentle. He does not push, kick, slap or scratch. He does not attack smaller children in fact is supremely gentle with them. I worry though that it will be a problem in mainstream school as if someone asks for something of his, he just gives it over. Babygirl has realised this and is taking advantage of him which I just cringe at. I am trying to teach her sharing, turn taking and all that but it is hard work and Jellybean unfortunately takes the brunt of it.

Other people crying really upsets him also. Yesterday after school he cried uncontrollably for almost an hour. And no it wasn't a tantrum. The crying was different. Nothing i did could calm him. He didnt want to be cuddled, did not want to eat or drink or watch his favourite dvd. A dvd always calms him and yet he was so overcome that even that did not work. I asked at school adn they said that one child has been really upset in class and I think that is having an effect on Jellybean and he does not know what to do about it. Hopefully he can learn how to cope with it and school can give us some strategies.

I would love to see inside his little brain to see if the noise of someone crying sounds like a freight train going through his little head. I would love to know what he is thinking!!!