Lessons Learned

This I write after many years of being MIA. I feel I cannot update without first getting this off my chest. Then and only then can I tell you of all we have learned as parents and all that he has become. This is the very post that will open the gates. This is the post I not only have been afraid to write but I just didn't know how to put into words without drowning it and ruining it with way too much emotion.  I have agonised over this, I have lost sleep and cried so hard. I feel the emotional tie has now been lifted at last and I am ready.

I want to address something that has been an elephant in the room for a long time, his transfer to a different school.

As sensational as his former school had been, all came to a dramatic standstill in what seemed like over night. I understand wholeheartedly the guidelines when it comes to a SENO allocating an SNA to a child with additional educational needs. As a special needs assistant myself, I totally understand that I need to work myself out of a job. In other words, don't try to disable a child even further but work towards creating an environment where they can do as much for themselves as possible. We simply cannot make a child so dependent that it further inhibits their progression.  There is a time when an SNA is a necessity, especially in infant classes after coming from an ASD preschool and then there is a stage when an SNA can indeed be too much and be the ruination of a child. There needs to be a transitional period whereby the SNA stands back and resource hours from a SEN teacher play a bigger roll. A child cannot be expected to just handle having the support of an SNA one year to then having nothing the next especially when the resource hours offered were little or nothing and shared. This unfortunately is what happened to our boy. By the very nature of the diagnostic criteria of an autism spectrum disorder, it is set out very clearly that the individual depends of familiarity, structure and a very definite yet gentle introduction to change and disruption. The attitude we got from the school was put up or shut up.
A pen pusher shaped as a Special Educational Needs Officer that never met my child suddenly deemed him in no need of an SNA.
We chose not to shut up but to ship out. We moved J to a new primary school.  I will always be grateful to the fantastic start he got in the first 4 years in his first school. He had an incredible team of teachers and SNAs who put trojan work into him. When I think of how we had to walk away and under the circumstances I actually get quite emotional. So many meetings after hours, putting our heads together about what would be best for him trawling through IEPs.
I had so much hope and he was thriving. Something happened when he reached 3rd class. It all just fell apart after we got the news that he no longer even had access to an SNA. Any resource hours offered were shared, not relevant to his needs and sporadic. Instead of the emotional support, he was just sent in to run around a soft play area or do some exercises. To those who know him, this is fuel to his fire. A total nightmare situation.

I saw a huge change in him emotionally and academically. The meltdowns returned and he started to struggle with friendships. Because he had to be in class all day every day, he struggled to self regulate.  There was no definite structure to his day and his new teacher just remained intolerant of his needs as a child on the spectrum.  There was no down time offered.  Often his breakdowns were interpreted are arrogance, rudeness and bad behaviour.  We were fighting a losing battle with him and the school. They just didn't share our passion for him and didn't fight his case and so closed another chapter of his life. His teacher didnt see his behaviour and regression as a cry for help.  It was terrifying and so upsetting and a massive change but it was the right thing to do.  Day by day he was becoming more and more emotionally scarred and labelled and to this day he still speaks of how he felt.  We left and brought his very well settled younger brother with him too.  Absolutely heartbreaking. For those who stood with us, you know who you are. We will be forever grateful.

J saying his goodbyes and thank you on his very last day to all who helped to get him so far. A poignant moment full of apprehension and sadness. What a brave boy.

...and then there was 4

Just  a quick post to let everyone know that life is awesome.  I now have 4 beautiful boys.  Austin is now 5 weeks, Charlie 3, Jamie 7 and Rhys nearly 11.  It is utter chaos and totally mental and I am still waiting optimistically for it to calm at some stage. Yeah right. Im tired, over worked and overwhelmed but they seem to be happy with the job Im doing so Ill settle with that for now.

Jamie is doing amazingly.  Look at that smile sitting with his brother.  He will be going into first class in our local mainstream school in September and to say they have been amazing is an understatement.  His Autism is still debilitating at times but his character, perseverance and heart of gold have transformed him into an intelligent, articulate handsome big boy. He has friends, interests, ability and ambition that would blow our mind. He has a special needs assistant, a resource teacher and class teacher that do trojan work with him. He has a home support worker whom he adores and has added a whole new level of independence to his life.  She allows him to indulge in his obsessions and give him hew all...something that sometimes it it hard to fit into such a busy family life here. He is now a competent swimmer thanks to the one on one lessons subsidised by our local autism charity WASSA (www.wassa.ie).  He can swim 25metres straight.

We are constantly in tune with him and he still needs so much intervention to keep him as content as he is but it really is worth it to see the big boy he has become. Of course its difficult and so draining and heartbreaking seeing hims struggle with confusion, social anxiety and sensory overload but at least we know what we're dealing with and how to handle it....most of the time. Now if we could just figure out our 3 year old we'd be laughing.  There are days where I am chancing my arm and winging it through sheer exhaustion but we get there.

His latest obsession is all things aviation related. We have had this before at about age 2-3 but now as he has matured he has brought it to a whole new level. We are counting down the sleeps to our holiday. Hubby and I day dream about the pool, sunshine and no stress (in the evenings when the creatures sleep and we collapse after a day of hyperactivity, wandering children tears and tantrums....and thats just me) but Jamie dreams of the airports....take offs, landing and all things reeking of jet fuel. I cannot wait to see his face

I hope to keep up with life for him here but life is nuts.

You dont have to be crazy to live here....but it sure helps

I love the bones of him

So where are we on our journey? J is coming up to his 5th birthday and to say life has changed so much for him would be an understatement.

I approach his next phase in life with as much trepidation as high emotion and excitement. We got that phone call. He has come so far that he is to move to mainstream in September at our local school. Wow wow WOW!! I am still pinching myself but with every moment of elation I get a feeling of fear in the pit of my stomach. How will he cope?

I now face another battle of getting him the necessary resource hours and the impending battle of access to an SNA. I spent a lot of today making phone calls and chatting to a very informative lady. I can feel the pressure building up again, the pressure to fight in order to get the best for him. I try not to let autism take over but I have to get into a certain frame of mind to make all of those phonecalls. His school want his psychological report rephrased and the HSE say that they have been informed by the Department of Education that they are not qualified to quantify the need for an SNA. I am going around in circles once again. Oh we'll get there.

Imagine my J will be in the same uniform as his big brother. I will cry like a loon that day

Oh my J, he is a dote lately. His literal thinking keeps us entertained and the joy he brings to this house is indescribable. What a clever little boy he has turned out to be. He is amazing with his iphone and retains everything he has ever heard. Academically he will fly through school. His speech is amazing. It is still very repetitive but much less echolalia and tonnes of tone and inflection. On a tired day he sounds like Borat's cousin but on a good day he is just like any kid his age. He is full on from the moment he wakes until he eventually sleeps at night. So many questions, his mind is on super speed all day long. His take on the world is comical. I love his character andI love what he brings to our family

Meltdowns are still a daily occurrence but not a problem as they are manageable. J has started swimming with WASSA which is a local Autism Charity set up by parents which helps kids on the spectrum integrate into mainstream activities. He is brilliant in the pool

We still have to work on the world around him. He still has no sense of danger, height, traffic, stairs and lots more. Our latest visit to A&E landed him with a minor fracture and a cast.....sigh. He even knew the way to the X-ray room. More broken bones

Life is busy with J, a super cute baby and a near 9 year old but I love it.

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!!