So I completed the SCQ and another test for Autism, GARS. It wont be a diagnosis but it will be another report that will help to secure his place for preschool next year. It will also be a great back up when I meet the developmental delay psychiatrist next week whose diagnosis will be recognised by the school!!
Tuesday, May 5, 2009
Each Report Counts
Well I went back to meet J's early Intervention Psychologist as I wasn't happy with the result of his first social and communication questionnaire. Basically we were not tuned to J the way that we are now.
Monday, April 27, 2009
J's New Beginning
So I have been away for a while. Coming up to 35 weeks pregnant has taken its tolls but mom has been a busy beaver.
Following on from my last post, I have taken it upon myself to take matters into my own hands with regard to J. I could not rest easy with the 2012 date before Autism Services could see him so I rang them directly myself and spoke to a lovely woman. I absolutely spilled my guts about how J was struggling socially and how his sensory issues had him a nervous wreck. Our biggest worry however was and still is, his communication. Although he never stops babbling and speaking and he knows the name of everything, his receptive communication is so delayed and we just cannot seem to engage him in conversation. He just doesnt understand!! He gets lost in echolalia. A misunderstanding can lead to the most incredible meltdowns. J will be 4 in 2 weeks time and he still cannot understand questions like "So, what will we do today?" and he cannot follow more than one direction. All I was looking for in that phonecall was direction...someone to say it was going to be ok. That was when she told us that although she could do nothing about the waiting list, the results of his psychological assessment were enough for him to qualify for a place in an ASD pre-school as part of a mainstream school. He has a working diagnosis for ASD. I couldnt believe my ears. From working as an Special Needs Assistant myself with the Department of Education for 5 years, I knew the system and I knew that this would be perfect for our little man. " At last", I thought.
So we were faced with another dilemma.......places available. I rang every school out there with an Autistic unit but all I could do was put his name on waiting lists. It was like one step forward, 2 steps back (I know youre all singing Paula Abduls song in your head now...lol!)
I still however felt we were making progress. He continued going to his playschool which was great for him socially but everyday when I collected him I was faced with the reality of sensory overload. It would hit him after sitting in quietness 10 minutes after collecting him. We would get home and he would spin and rock and scream and cry most days. Then there were the day where he would sit in silence staring at the tv, absolutely zoned out. No speech, no eye contact...nothing!! The playschool was too much and we decided to reduce his time there to 3 days a week.
Then it came....the phonecall!! He had gotten a place in a brand new ASD preschool and they wanted to meet us the following Tuesday. I rang my husband and we literally squealed in excitement. This was it.....a new start for J.
However, I will never forget and will always appreciate the time, love and dedication that came from his playschool. The ladies working there gave so much to J and went out of their way to educate themselves about ASD. It was a very emotional day when we had to say goodbye. The lady running that playschool was a privilege to work with and I hope her services will still be there when it comes to our new baby needing a place. She was also wonderful all those years ago with our eldest son. I will forever be grateful and J will miss her dearly!!
So where are we now??? People ask me the whole time about how the school is suiting him and I tell each one of them "we have a whole new boy". The difference in him is not just noticeable...its dramatic. He is in a sparkly new classroom with his teacher, 2 SNAs and only 3 other children. Everything is specific to his needs and he is thriving. He even has the most adorable little school tracksuit to wear. They just "get him"!! Any parent with a child on the spectrum can understand what I mean by this. There hasnt been any miracle cure but when I collect him now he is so relaxed and content. He is finally taken the first step in completely the right direction. I just feel that now everything is going to be just fine.
However in the background, I am still digging my heals in with regards to finding out exactly where on the spectrum he is. I lodged a formal complaint with the HSE with regards to the date we were given for his diagnostic assessment and the Complaints Officer, Assessment of Need Officer and Liaison Officer I am going to work with all seem wonderful. I couldnt fault them. We'll just have to see how it goes over the next couple of months.
I have also reconnected with Js early intervention psychologist who has agreed to let us complete another Social Communication Questionnaire (SCQ) with a more focused approach. This is the part of his psychological assessment that parents contribute to. I just feel I didnt give an honest account when I completed it nearly a year ago. I never realised the implications....I never wanted to admit how delayed he was socially and communicatively. I have learned recently that this SCQ was the only documentation that contradicted all that every therapist he had met with were saying about his development. I cant help but feel I am partly responsible for Autism Services not taking his case seriously.
We applied for a Domiciliary Care Allowance (DCA) in February as recommended by our AOM Officer and met with the HSE South's chief Medical Officer. He was baffled as to why we had to wait so long. He decided to do his own assessment and testing with J from which he diagnosed ASD. We were granted the DCA but unfortunately his diagnosis wouldnt be recognised by the school. We are very aware that the school only have a working diagnosis to work from and are terrified he will lose his place in the pre-school.
What a gentleman that doctor who is the Chief Medical Officer turned out to be. Off his own back he met with a colleague, discussed our case and manages to get us an appointment with somebody who's diagnosis will be considered. He is based in Waterford Regional Hospital and he is the head Child and Adolescent Psychiatrist! HALLELUIA!! Appointments with this man are like gold dust and J was referred to him. We are due to meet him mid May. We just cant believe it!!! Somebody is really looking out for us!!! We are getting somewhere.
So thats the story so far. J is also thriving in Occupational Therapy and has just finished his first block of Speech an Language Therapy. As parents we have to FIGHT FIGHT FIGHT for our kids. The HSE will never do all that is needed unless they are tormented and made aware of each and every case.
I have a beautiful, friendly, happy little boy who is bursting with personality and has so much potential. He is as bright as a button and I will not rest until he gets everything he deserves. I really hope as soon as I have has our baby and I am well again I can help, educate and encourage parents out there who are going through the same process. Awareness is everything.
Autism and all areas of the spectrum need not be the end of the world. J has made me a better person. As a family unit nothing can get in our way....heres to our wonderful future
Saturday, March 14, 2009
The Toddler Years
Looking back I dont know how hubby and I managed. We were quite literally raising a ball of fire. Nobody seemed to know what to do with him. He would cry and kick and scream all day every day. We couldnt do the things that so many families would do without stress. We just got on with it to be honest, we knew him to be no different. Thankfully he now would sleep all night, that was our saving grace. From 7pm every night.....silence!!
Then the vomiting started, with almost every tantrum he would puke at will, adding more and more stress to the situation. I got so so cross with him, that what was made me snap and I was just feeding into the behaviour with my reaction. I just felt like a hopeless, useless mother. I could never understand where I went wrong and why everything was such a struggle all of the time. At this stage he was only 2. Every house we went to I had to leave because of his screaming. Nobody could understand and all hubby and I got was the old Irish "ah sure God love him!!" It drove us nuts. Nobody ever offered to help. In fact looking back we were corrected for how we dealt with his behaviour and that hurt as we were just doing our best.
One day things were so bad I just dropped him to my mothers and went into the playschool where my eldest had gone and I literally begged the teacher there to take him for a day and see if mixing with peers would help. She was very sympathetic and offered me 2 days a week for him. It was exactly what I needed. I think she realised she had taken on a lot as after the first few days she met with me and said "what are we going to do with all this screaming??" I just didnt know what to say.
A developmental check up with the district nurse lead him to speech therapy as he had a good bit of vocabulary but no conversation. The speech therapist foend him to be moderately to severely delayed in his communication. She was the one that raised concerns about his behaviour and immediately referred him to an early intervention psychologist.
September 2008, 4 years after I found out I was pregnant, J had a full psychological assessment that showed that he was in the high risk category for as Autistic Spectrum Disorder.
Hubby and I cried and cried. I am crying writing this as even the memory of that emotional breakthrough day overwhelms me. His report recommended further assessments from speech theraoy, occupational therapy, early intervention andautism services. He was given a full Assessment of Need by the HSE which determined that our boy indeed had a disability.
The Assessment showed the nature of J's disability as follows
Then the vomiting started, with almost every tantrum he would puke at will, adding more and more stress to the situation. I got so so cross with him, that what was made me snap and I was just feeding into the behaviour with my reaction. I just felt like a hopeless, useless mother. I could never understand where I went wrong and why everything was such a struggle all of the time. At this stage he was only 2. Every house we went to I had to leave because of his screaming. Nobody could understand and all hubby and I got was the old Irish "ah sure God love him!!" It drove us nuts. Nobody ever offered to help. In fact looking back we were corrected for how we dealt with his behaviour and that hurt as we were just doing our best.
One day things were so bad I just dropped him to my mothers and went into the playschool where my eldest had gone and I literally begged the teacher there to take him for a day and see if mixing with peers would help. She was very sympathetic and offered me 2 days a week for him. It was exactly what I needed. I think she realised she had taken on a lot as after the first few days she met with me and said "what are we going to do with all this screaming??" I just didnt know what to say.
A developmental check up with the district nurse lead him to speech therapy as he had a good bit of vocabulary but no conversation. The speech therapist foend him to be moderately to severely delayed in his communication. She was the one that raised concerns about his behaviour and immediately referred him to an early intervention psychologist.
September 2008, 4 years after I found out I was pregnant, J had a full psychological assessment that showed that he was in the high risk category for as Autistic Spectrum Disorder.
Hubby and I cried and cried. I am crying writing this as even the memory of that emotional breakthrough day overwhelms me. His report recommended further assessments from speech theraoy, occupational therapy, early intervention andautism services. He was given a full Assessment of Need by the HSE which determined that our boy indeed had a disability.
The Assessment showed the nature of J's disability as follows
- Severe receptive-expressive language delay and delays in other ares of pre-verbal skills
- J presents with some delay in gross motor, visuo-motor, sensory, social and communication skills
- J presents with difficulties in the following areas : socialisation, communication and sensory and ritualistic/restrictive behaviours. In addition, his psychological assessment has revealed that J is currently under performing in his adaptive behaviour functioning. J is also presenting with significant receptive/expressive language delay
At last we had answers, are hard as they were to swallow. It was devastating! Especially since his service statement gave a date of 2012 before Autism Services can see him. The Irish Health Service is a joke.
Our Beautiful "Roll of Butter"
So after a very well planned and relaxed labour, our little boy was born weighing and impressive 9lb 6 ozs at only 38 weeks gestation. He was huge!!! I will always remember my hubby staring down in complete awe at his son, instant love. Baby J was born and I now had my 2 beautiful boys. We absolutely adored him. I found the bonding process very difficult in the beginning, I don't think I ever let anybody know that at the time. It still baffles me as to why it took me so long to get that bond as he is my heart and soul and everything I live for. However we played and cared for him and he was a wonderful addition to our little family.
Baby J cried and screamed and cried for all of his first year. He cried as if he was in agony and we tried putting it down to his formula which was changed so many times I cannot remember. In the end I had to wean him before 16 weeks as he vomited everything else up. IT was one of the most stressful times in my life. He never seemed to smile for anyone only his dad and I. As he reached 6 months,there was no babbling or interaction. He didnt point at objects in wonder as my first son had. All he wanted to do was eat and play alone. we did everything to settle him at night and after a year he started to sleep quite well especially when we moved into a bigger house and he was given his own room. Soon he learned to walk but had an awful fall off my bed and broke his arm. I will never forget the screams of anxiety any time any stranger went near him in the hospital. The nurses didnt know what to make of him.
As a Special Needs Assistant with courses behind me and experience with so many kids, how did I not see the signs. Looking back I just thought I had been lucky with my first son and J was typical of a difficult child. On looking back all of these characteristics should have stood out a mile to me
Baby J cried and screamed and cried for all of his first year. He cried as if he was in agony and we tried putting it down to his formula which was changed so many times I cannot remember. In the end I had to wean him before 16 weeks as he vomited everything else up. IT was one of the most stressful times in my life. He never seemed to smile for anyone only his dad and I. As he reached 6 months,there was no babbling or interaction. He didnt point at objects in wonder as my first son had. All he wanted to do was eat and play alone. we did everything to settle him at night and after a year he started to sleep quite well especially when we moved into a bigger house and he was given his own room. Soon he learned to walk but had an awful fall off my bed and broke his arm. I will never forget the screams of anxiety any time any stranger went near him in the hospital. The nurses didnt know what to make of him.
As a Special Needs Assistant with courses behind me and experience with so many kids, how did I not see the signs. Looking back I just thought I had been lucky with my first son and J was typical of a difficult child. On looking back all of these characteristics should have stood out a mile to me
- He had continuous massive tantrums over what to us would seem like nothing.
- He preferred to play alone.
- He would spend hours as a baby and young toddler staring at the television.
- He could not cope with different texture when eating.
- He dribbled all the time.
- He would spin and spin around the room and then laugh hysterically.
- He was PETRIFIED of certain noises.
- He would create associations with people and places which would determine his behaviour.
- He never smiled out of his buggy as a baby
- He love to spin the wheels of cars repeatedly rather than play with them
- He walked on his tip toes
- He had a high pitch scream when aggravated.
- He hated children.
But that was our little boy and we loved him dearly.
He had no speech bar a couple of words
My Pregnancy
Elation soon gave way to "Oh my God I'm DYING!!!" It wasnt that I was sick but I got so so huge so fast. My pregnancy was awful. My body could not keep up with my ever growing baby boy. As a result I started to faint daily which meant I had to stay out of work and I couldnt drive.
The lonliness and sadness set in, I was housebound and huge. Not only that but my then 3 year old had very challenging behaiour which I just could not cope with. I fought the whole time with my man and felt so depressed all of the time. The stress was unbearable and the pregnancy seemed to go on forever. At 37 weeks I quite literally went into my hospital check up in agony and desperation and said....."get this baby out of me" and I cried up in that doctors face. I will never forget that day when he said to me, come in Monday and we will induce you.
And that is what I did!!
The lonliness and sadness set in, I was housebound and huge. Not only that but my then 3 year old had very challenging behaiour which I just could not cope with. I fought the whole time with my man and felt so depressed all of the time. The stress was unbearable and the pregnancy seemed to go on forever. At 37 weeks I quite literally went into my hospital check up in agony and desperation and said....."get this baby out of me" and I cried up in that doctors face. I will never forget that day when he said to me, come in Monday and we will induce you.
And that is what I did!!
The Beginning
September 2004 was both the most traumatic and the most wonderful month of my life. I had only been going out with my now husband since March and now he was gone. I knew when I started seeing him that he wanted to see Sydney and I wasn't going to hold him back. We were dearly in love and I knew if he came back to me it would be forever.
I already had a little boy from a previous "relationship" and we really wanted to give him a brother or sister. I know what you're thinking, we were insane but it was the right thing for us. I had been friends with the man for years and we were and are soul mates, lovers and best friends all rolled into one. We stopped using protection the previous Summer but nothing happened. But then he was gone, thousands and thousands of miles away and I creased over crying for weeks. It was the most horrible feeling, I had never felt such pain but there was no way I could have tried to keep him in Ireland. It was his dream. So I distracted myself with motherhood and work. At that time I worked as a Special Needs Assistant and loved it.
I suddenly felt different, it was a familiar feeling and I took that trip to the pharmacy. All my suspicions were confirmed... I was pregnant. I will never forget my utter over the top excitement. I rang him straight away and he joined me in the screaming and yelping. We just couldnt believe it. He was home in my arms after 5 weeks......my beau!!
I already had a little boy from a previous "relationship" and we really wanted to give him a brother or sister. I know what you're thinking, we were insane but it was the right thing for us. I had been friends with the man for years and we were and are soul mates, lovers and best friends all rolled into one. We stopped using protection the previous Summer but nothing happened. But then he was gone, thousands and thousands of miles away and I creased over crying for weeks. It was the most horrible feeling, I had never felt such pain but there was no way I could have tried to keep him in Ireland. It was his dream. So I distracted myself with motherhood and work. At that time I worked as a Special Needs Assistant and loved it.
I suddenly felt different, it was a familiar feeling and I took that trip to the pharmacy. All my suspicions were confirmed... I was pregnant. I will never forget my utter over the top excitement. I rang him straight away and he joined me in the screaming and yelping. We just couldnt believe it. He was home in my arms after 5 weeks......my beau!!
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