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????
Tuesday 31 July 2012
Monday 30 July 2012
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.
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.
Wednesday 25 July 2012
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.
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.
Introducing Jellybean and BabyGirl
Jellybean is my amazing son. he just turned four last month. he is tall with lots of hair that just goes everywhere and amazing eyelashes that any girl would dream of having. He is cheeky and happy and autistic. My baby girl is two very soon, and i will probobly have to stop calling her baby girl as she is getting so big. She is a beautiful little miss with a sweet smile, a fabulous appetite and an eagerness to learn everything she can :)
I adore my children and am so proud to be their mummy but I decided whilst reading a friends blog that this is something i want to do for me. to tell our journey with autism and how our lives are changed. Maybe I will get something out of writing this, to see later on just how far we have come.
The turning point i think was my sons 4th birthday party. Gees did i contemplate whether to do a party or not. Most often in partys my son plays by himself away from everyone, does not open presents, runs and hides and covers his ears when anyone sings happy birthday and basically does not cope all that well with masses of people around. But, i decided that, you know what we will try again....he did AMAZING!!!!
he smiled and smiled and smiled. and you know what I smiled and smiled too. He smiled during happy birthday song, he smiled when he opened up presents, he smiled and ran around soaking in everything. And for the first time in a long time I breathed.
Someone said to me shortly after my son was diagnosed that one day i would breathe again. when the paediatrician sat in front of us and said ...it is in our opinion that your son is moderately autistic, I literally stopped. It was as though my whole world changed, my dreams of his future and ours changed in that moment. I thought every thought i think that most parents think at diagnosis...will he live on his own? will he ever care enough about other people? be happy? get a job? get married? tell me that he loves me? what will happen to him if something happens to me? I am pretty sure that through my tears I asked the paediatrician, His answer to my questions is something i have hung on to. He said that he didnt know and could not tell me but no matter what the diagnosis whether it be mild, moderate or severe you just cannot tell how well they might do in therapy and just how far they can get. So I listened and the intervention journey started.
I adore my children and am so proud to be their mummy but I decided whilst reading a friends blog that this is something i want to do for me. to tell our journey with autism and how our lives are changed. Maybe I will get something out of writing this, to see later on just how far we have come.
The turning point i think was my sons 4th birthday party. Gees did i contemplate whether to do a party or not. Most often in partys my son plays by himself away from everyone, does not open presents, runs and hides and covers his ears when anyone sings happy birthday and basically does not cope all that well with masses of people around. But, i decided that, you know what we will try again....he did AMAZING!!!!
he smiled and smiled and smiled. and you know what I smiled and smiled too. He smiled during happy birthday song, he smiled when he opened up presents, he smiled and ran around soaking in everything. And for the first time in a long time I breathed.
Someone said to me shortly after my son was diagnosed that one day i would breathe again. when the paediatrician sat in front of us and said ...it is in our opinion that your son is moderately autistic, I literally stopped. It was as though my whole world changed, my dreams of his future and ours changed in that moment. I thought every thought i think that most parents think at diagnosis...will he live on his own? will he ever care enough about other people? be happy? get a job? get married? tell me that he loves me? what will happen to him if something happens to me? I am pretty sure that through my tears I asked the paediatrician, His answer to my questions is something i have hung on to. He said that he didnt know and could not tell me but no matter what the diagnosis whether it be mild, moderate or severe you just cannot tell how well they might do in therapy and just how far they can get. So I listened and the intervention journey started.
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