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!!!

when the alarms go off...

Each week I take my daughter to playgroup as she is a social little butterfly. She laughs along and plays with the other kids, talking away naming everything she can see. A typical little girl doing normal play things. I love watching her play and wondering just how she can figure out all those nonverbal cues and start to play a game without any words, to just know what to do. All of these things are a huge struggle for my boy.

Jellybean does not acknowledge other kids much at all but he is getting better. we are working on his play skills with repetitive play activities to teach him how to play with toys and what to do with them. It is slow going. His last psych report said he was at a play level of 9-12months old :(

Anyhow, today at playgroup there was a new mum with her just turned two son and watching him every alarm bell went off in my head. He reminded me of Jellybean and how he behaved when things were just too overwhelming and it just broke my heart. I honestly truly did not know what to do. I heard her use all the excuses under the sun that I used to use...hes tired...its just that its a new place...etc but I could see in her face that she was overwhelmed and struggling. She left early dragging her screaming son out but she did say she would be back next week....

I have mentioned something to someone before and the defences of the mum went up so quickly and defensively that i backed down...so now once bitten twice shy....

I know that when Jellybean was little my defences went up when anyone mentioned that ghastly AUTISM word. I felt like they were screaming it at me...but in the end i was glad that someone planted that seed of doubt in my already doubting head and we got his diagnosis early.

Now i have to decide what to do..do i say something or not????

why cant he just talk!!!!

Jellybean is what they call "non verbal". I have lost count how many times i have just sat there and prayed to whomever would listen that he could just talk.  I have sworn out loud, silently and screamed so loudly "why cant you just talk" so many times that i am suprised that the neighbours haven't said something. I must say though that it is one of the most frustrating aspects of his autism for the both of us.

When he was 18months old he could only say a couple of words. Seeya was he first real word and most of the words he could say were nouns/labels for things. He could not say mum, kinda said dad but it wasnt really clear. One day at birthday party I was talking to a friend of a friend who just happened to be a speech therapist about Jellybean. She was the first person to say...wait hang on a minute, he should be saying more than he is, that doesnt seem right and agreed to see him for some therapy.

I have to say that he made a little progress...although slowly. It was hard work. I lost count how many times I had to model a word and break it down. I must have played with a ball and said it hundreds of times before magically he said the word ball....and i just about let out the biggest OH MY GOD YES IT IS A BALL!!! Unfortunately though a trend would start. He would gain a word, say it pretty consistently for sometimes days or weeks and then it would vanish as if by magic never to be heard again for months, sometimes a year before I could teach him that word again and some I still have not heard again :( .

By the time he was 2.5years old we had about 40 words, mainly again nouns but he was starting to put some words together and we were getting sentences like oh no it dark and go car. I though wow we are getting somewhere. We were still looking towards his diagnosis, still on the public waitlist for his assessment but we were gettign some language and I was over the moon..

It took only a few weeks for the language to all go. He had what they call a regression.

Again words we worked so hard to teach him...gone.

And then we were left with just NO. his only clear word.

By this stage he had started therapy, not ABA but what they call TEACH at an early intervention centre. Everyone said, when he gets into therapy, you will see so much improvement, he will come so far. Everyone said, he is still so little...its great you got him in so early. But...he got worse.

He did three terms at this early intervention centre and by the end when i pulled him out the only thing he said to me was BAAAAA and GAAAA  and NOOOOO. He would not wear shoes, could not sit and pay attention to a task at all, still could not talk, still had not the best eye contact.

This i have to say was the most depressing moment of my life. I was at absolutely rock bottom. At 3 and a half years old after two whole years of therapy he was actually worse than when we started. I could see him falling more and more and more behind neurotypical kids his age. I lost friends, I was socially isolating myself as my sons behaviour was stopping our life. It was too hard to take him out, too hard to keep him home. I just did not know where to go, what to do next. COMPLETELY LOST.

When we started ABA we started to get some language and I think the first time he said mum again I just about fell over. Everytime he says it, its like music to my ears. To all those parents who I hear say how their kids just say mum this mum that all day and how annoying it is...you just dont know how lucky you are. It is an honour to be someones mum and to have them say it to you is unbelievable. Earlier this year, Jellybean learned how to say dad again. it was around 18months since he had said it to my husband and i saw tears in my hubbys eyes. I do get lost in my own world too much and forget that it is just as hard for him too.

This weekend was hard. Jellybean woke up screaming and he could not tell me what was wrong. It is hard to get language out of him without prompting normally but when he is upset, i get nothing. All i want is my son to tell me what is wrong so i can fix it. As a parent, when they are hurt, you hurt too and all i wanted was for him to tell me what I could do and all he did was hug me for dear life and cry.

Your son needs a haircut

Jellybean goes to a special school for autistic kids. There are only four kids in his class, with a teacher and two aides. It is an amazing school. They do ABA (applied behavioural analysis) and I will be forever grateful for a mum I met one day at a playgroup who told me about this school.

Despite the fact that Babygirl normally slept in the morning, I took them both out one day to a playconnect playgroup. A playgroup for parents of kids with autism to meet. There was a mum there with her daughter. She was the same age as Jellybean, ready to start kindy the next year. I started talking to her about where to go because honestly I was completely and utterly lost. Jellybean is was nonverbal (not counting a few approximation words) oh and he could most definately say no!!, and this autism thing was only quite new. here i was though having to make decisions on schooling - ed support, mainstream, special school!!!

She told me she had enrolled her daughter in this school and maybe I should one day go check it out. After I left the playgroup, I thought about it for a while and finally decided to go have a look. I had a chat with this lady who runs it whom i must say is one of the most abrupt women i have ever met but I really liked the school and I applied to go. thankfully he was accepted and we have not looked back.

ABA worked!!!!! He started to approximate language, to know shapes, colours, verbs, nouns. All the things I had been struggling to teach him for almost two years and finally he was getting it. I am not saying that ABA is the only way, but its the way that has worked for my son. When he was first diagnosed an autism advisor came out to my house (babygirl was only 4months old) I was hormonal and sleep deprived. I did not know what to do so I put him in EI at the autism association. There was some good points by which his turntaking and sharing skills improved but everyting else went downhill. The boy whom i had worked so hard to get 40-50 single words out of was now completely nonverbal and his behaviour was appalling. I kept asking for help there but wasnt getting anywhere. Seeing his school was the nudge I desperately needed to get him out and in different therapy.

We have a communication book at school as the teachers dont have a lot of time to tell us about their day or any issues. Today I got a note...Could you please get Jellybean a haircut as he is stimming off his fringe and it is affecting his attention in class.

WHAT!!! I literally laughed out loud. Okay, another thing that parents of neurotypical kids probobly dont have to worry about. never even occured to me that it could be a stim :-)
I knew his hair was long and needed a haircut but okay, guess i will get it done today!

Okay, deep breath and off to get a haircut.....I HATE HATE HATE getting haircuts with jellybean. Jellybean HATES HATES HATES it too. It is awful, he is literally petrified, he screams NO NO NO NO at me, clings on for dear life and just sobs and sobs and sobs. He cant wear the aprons, he cant tolerate the hair falling on him either so it is just a painful experience for everyone involved. I have tried distractions with DVD, toys, singing. I have been to specialised kids hairdressers where he got to sit on a car or motorbike. Same ending though....tears, tears and more tears.

Today I walked into a little hairdresser salon near my mums house. When the hairdresser heard me say that he is autistic and heard him scream, she pretty much stopped what she was doing and came over to us. She was so wonderful. She tried distraction and talked to him calmly forever saying he was just like her son. i was thinking, great another person who thinks their kid is like mine just because he hates haircuts but no, she has a nine year old autistic son who hates haircuts too and all of jellybeans behaviours reminded her of her son when he was little. I had little old ladies offering him sweets and showing him toys, telling him he was so handsome and brave. It was just so wonderful that I have tears just thinking about how lovely and compassionate all the lovely ladies in the salon today were. I walked out with him still crying saying thankyou to the five beautiful women who made me feel warm and fuzzy inside. There are some truly lovely, compassionate people out there and I and grateful to meet some of them today.