Magic moments, when two hearts are......

....Caring!

The one thing that was stressed to me when going through the assessment process with J is that a characteristic of Autism was a lack of empathy. "Empathy" relates to sympathy with the feelings of other people. There is a natural tendency of people to mimic others in their bahaviour. Thus if one person laughs, it is more likely that other people within earshot will laugh. The same occurs with sadness. Empathy comes to play because sadness is not just tears but an entire set of circumstances. This is an area that J really struggled with. His brother would fall and dramatically declare his leg was falling off or dad might stub his toe, screaming obscenities and blasphemies or perhaps I would be lying under an illness surrounded by mountains of Aldi's best impression of kleenex . There was nothing from J. His day was his routine, his possessions and his world. Our facial expressions were lost on him, the screams of pain were hilarious to him .

So did that mean that he has no feelings. In my understanding, no. He has the same feelings as anyone else. I think if you don't know about an event, you have no feelings about it. So to use an absurd example, you would have no qualms about running over an invisible man.

He just cant read our faces. He doesnt presume....he doesnt do cryptic or play guessing games. J seemed to not give a monkeys about anyone around him and oh how we were so wrong.

I must give credit where its due. School has thought J how to play with peers through role play games. This play has totally turned my sons character and perception around. I dont know if it was the repetitive nature or the fact that it was with other little kiddies with the same issues but he is a totally different child. Kids with autism have more complex language and social complications which is why the play is so essential. Pretend play, more importantly, provides a child like J the opportunity to engage in role modeling which promoted his expressive language based on perception.

They play games where one has hurt themselves in the playground. "Oh no!!! What will we do?". This was J's favourite one for a while but of course he eventually believed that he had indeed had a horrific mishap in school and he HAD to wear a plaster on his leg and could not understand why nobody would call an ambulance. I suppose that's another hurdle with ASD that you meet. You want them to pretend and play but also realise that it is indeed play and not reality. Its that old gem of introducing a "gray area". This whole confusion created numerous meltdowns. We are still working on that.

Ok , ok back to topic...the caring is what I was trying to focus in on. We expect nothing in this house in the lines of sympathy or empathy from J. Anyway we are his mom and dad...we care for him and surely thats all that matter......for crikeys sake he is only 4 after all.

That was until 2 weeks ago as I lay on the couch convinced I had 17 variations of swine, bird and old man flu with a touch of foot and mouth (turned out to be a head cold), feeling very sorry for myself, I felt something at my leg.

"You ok mom....I rub you leg .....I call the doctor.....youre very kind mom....I am a big boy now"

.....and then he walked away to the television and went straight back into the "Garfield zone".

And that was it. Appropriate, engaged, loving, caring...and cool as a breeze! Yet there I was bawling and bursting with pride (sounds graphic!)

I am a great lover of Temple Grandin's lectures and observations regarding autism. She has taught me so much. Seriously....google her and have a look on youtube at her lectures. That day I saw something I had been reading about for so long.

"You have got to keep autistic children engaged with the world. You cannot let them tune out." T. Grandin

All the work had paid off. These children are not cold or locked in. They just need to be taught and guided in how to read a perceive the world around them. Even if not especially the individuals high on the spectrum. We take that aspect of understanding and communication so much for granted. We expect them to know how to show whats going on in their wonderful minds. Although they are essential, its not just about the endless hours of speech and language therapy and occupational therapy. I love to hear my boys play "house". Our play at home is all about pretending. It is so much fun. I love being that big kid again and I cant even imagine how our baby C will benefit from it too even at only 6 months. He is always included in the game.

"I am also a believer in an integrated treatment approach to autism." T. Grandin

Never in a million years would I think that J would be where he is today. The right school, friends and the love, understanding and the willingness to learn about J and ASD (ooooh JASD....like jedward....sorry easily distracted....oh look a butterfly...) from our families has transformed a little boy who was so anxious, confused and unreasonable into a a total cuddlebug who is sociable and one of the coolest people I know.



AWEtism by Donna Cooper (no relation)
AWEtism Website

It’s spelled Wrong!!!!
A mistake has been made.
The word doctors and neurologist use to diagnose our children is autism.
But it should be AWEtism!!!
Just think…
AWE at my child’s progress. AWE at each accomplishment.
AWE that we’ve been blessed to be part of a miracle.
AWE to see God’s hand at work in my child’s life.
AWE to meet such wonderful people.
AWE for each little step in the right direction.
AWE for the love I never knew I had.
It’s not autism...It’s AWEtism!!

Its all about control

Something interesting struck me about J and all his "issues". He will indeed bring the whole place down around him at the mere mention of a hoover or anything electrical. I always assumed that it hurt his ears. If so why is it when he tales control of a situation he can tolerate almost anything.
E.g. The little drill from his play doh set. If I was to produce it let alone switch it on, he would be hysterical, inconsolable but he i now in at the kitchen table happily drilling away. If any of us pick it up, all hell breaks loose. He will run from the room screaming with his hands over his ears....sometimes even cowering.

Is it a control issue?? Can somebody explain this one to me? Is it the first step to battling his demons and dealing with the loud craziness that is our world. Sound effects J so much and I would do anything to help him........but how to do it????? Anyone??

Things could not be any better

Oh my God I havent posted in so long. You must forgive me, so much has happened and I have had baby brain for at least a year now. Our 3rd beautiful boy was born on the 1st of June 2009. It has been CRAZY busy.

Well you have been keeping track of our progress with J. Here is what happened this year. In September the HSE brought a clinical psychologist in to assess and diagnose J. Her name was Dr Penny Rodgers. I had won my appeal against the HSE . Our J received a diagnosis of HFA (high functioning autism). Well what has happened since the diagnosis? He is still attending an ASD preschool in Ballyduff, Co. Waterford where he receives fantastic teaching, OT and SaLT. He how also has been granted transport. He is amazing. We face challenges every day. Life is never easy but always interesting. He now has a fantastic flow of speech and his social skills have sky rocketed.

Dyspraxia is now a major part of J's difficulties and a couple of months ago my husband and I had to rush to A&E after an awful fall fron the top of some stairs. He has so so many issues with coordination, gross and fine motor skills but OT work closely with him in school and I aim to get stuck into extra therapies very soon.

We are in such a different place now. At last we know what going on and the only way is up.


Once again i am being rudely interrupted by our fab new little boy, C.

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.

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!!

My Facebook Cause

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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

http://www.youtube.com/watch?v=ekcMdyu8ysk

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

• 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.