Part two in the tale of my son, Patrick’s Autism and ADHD diagnosis. Women like to be right, but not this time! you may want to get a cup of tea, as this is a long chapter. Actually, get a G&T. I need one after writing it!
We felt hopeful of a resolution when we entered ‘the system’ in 2013. But that hope quickly waned and was replaced by frustration and desperation. After multiple appointments where Psychologists changed their minds every five minutes and reports didn’t match up and so-called professionals couldn’t find our notes and blah blah blag, we were told in May 2015 that Patrick could not have ADHD.
This was a decision we queried because, although the questionnaire we as parents filled in showed he definitely did with 99% probability, the questionnaire from his school teacher showed he didn’t. I did point out that I felt the school report may not be accurate as the teacher the previous year definitely saw issues and the teacher filling in the form, apparently did not like ‘labels’.
But, it was decided that, as Patrick had sat calmly for the full three minutes, he was in with the CAMHS Psychiatrist assessing him, he apparently couldn’t possibly have ADHD! In the weeks afterwards when I mulled and festered over the experience, I wondered could he have Autism as he wasn’t great at explaining what he was feeling, didn’t mix well with children his own age and really didn’t cope well with change. I dismissed the idea, thinking the Psychiatrist and Psychologists we had seen, would have picked up on it if he did.
Patrick’s behaviour and abilities at school and home continued to be a challenge and I regularly contacted the Assessment of Needs Officer, about supports and a possible re-assessment, but was told there was no one ‘in post’ to re-assess Patrick. Leitrim was without a CAMHS professional for over two years!
I consider Leitrim to be the constipated county of Ireland – because nobody gives a shit. I called multiple times to follow up on the Play and Speech and Language Therapy support we had been promised, but it came to nothing. On one particular day when Patrick had thrown a kitchen stool at me, I was weary and upset and a smart-arsed secretary in CAMHS told be abruptly, maybe I needed to do a parenting course. Two words sprang to mind and one of them was off, I’ll let you fill in the blank!
For those of you familiar with ‘the system’ being sent on a parenting course is the HSE answer to the questions they don’t know to answer and the parenting course will apparently fix ever challenge your child has ever had. Sound far-fetched? It is! As it happens, I have done four parenting courses, completed an OT therapy course for brain training to assist emotional regulation, gone back to college on weekends and completed a level 7 certificate in Special Educational Needs for SNAs. None of it has made a blind bit of difference for more than a week.
On the guidance of professionals, we have brought Patrick to a dietician, to reflexology, to cranial sacral massage, to SLT, and Occupational Therapy. We have bought sensory toys, essential oils, yoga CDs, mindfulness books, a punch bag, trampolines big and small – we have tried it all and almost bankrupted ourselves in the process. All with little to no effect. I’m beginning to wonder if they have shares in these solutions?
In July 2016 someone suggested Patrick be checked for Dyslexia, this was a new avenue we hadn’t considered. 4 weeks and €500 later, we met with the Educational Psychologist who told us that Patrick had both Dyslexia and Dyscalculia, much like ordering food a Mexican restaurant the words are hard to pronounce and impossible to spell for the person with the learning difficulty.
The Educational Psychologist told us Patrick’s dyslexia meant was in the bottom 1-2% of the population, and gave us a list of possible supports that would see him right through to his 99th birthday! For anyone who has ever seen one of these reports, finding the right place to start supporting your child is like finding that infamous needle in a haystack.
But try we did, again a small fortune spent on the right books the right pencils etc. As chairwoman of the school parents’ association I organised a parents training session and allocated funds for special high/low readers so the dyslexic children in the school could enjoy the library too. I’m a big believer in inclusivity and based on current statistics, it was likely that 20-40 children in the 200-pupil school Patrick attended at the time, actually had dyslexia or some kind of reading delay.
Patrick’s report meant he was entitled to more significant support from the resource teacher, a laptop for school and an Irish exemption (Mick was gutted about this bit). We hoped that this support would help Patrick academically, but more importantly help to alleviate the frustration dyslexic people often feel and reduce the aggression at home. It didn’t!
His resource teacher also alerted us to her concerns about what she called ‘developmental delays’. We (we as in my wonderful husband, Mick, as I had long lost patience with doing Patrick’s homework after he stabbed me in the leg with a pencil) diligently worked through Dolch lists and ‘Toe by Toe’ every night. Patrick made excellent progress and even began to write in a reasonably straight line. We were super proud of him and more importantly, he was proud of himself.
But we were still seeing a lot of aggression and an increasing amount of anxiety. On the day of his Communion, Patrick was so scared, he refused to get out of the car and when he did, he attached himself, limpet like to Mick’s leg. We don’t have any pictures of Patrick smiling at the church as it was all too much for him. I also had my first truly heartbreaking moment that day, when I observed one of the boys, pull together all of the other lads in Patrick’s class into a huddle for a selfie. Patrick sat sadly at the end of the aisle as the boy didn’t invite him to be in it. It took every ounce of strength I had to hold back my tears, but my eyes were shooting sparks.
That summer, as we were filling in yet another round of forms for a further assessment, this time privately as there was still no-one ‘in post’ in CAMHS (someone send a Psychiatrist or some Senacot please!) Patrick’s class teacher stuck a post-it-note on the form saying she had concerns he was going to slip through the cracks in the system. We decided that day it was time to move schools. The school he was in is a decent school with some fantastic teachers, but it was just too big to suit Patrick’s particular needs.
We applied for Patrick to go to a small, 35 pupil, locally. This was without doubt the best move we ever made for our son. It is not a special needs school, but it is most definitely a special school. Although Patrick was full of anxiety and didn’t want to go, he was super brave and went anyway and settled really well. The Principal’s condition of him going to the school, was that he would start in second class, repeating the year he had just completed. Given Patrick’s challenges we felt this was a great idea and would give him the chance to settle before the big leap to third class.
That summer we went privately for a basic assessment of Patrick’s behaviour found him to have a sensory processing disorder and also definite signs of ADHD – so more forms to fill in! The Psychologist also broached the subject of an Autism Assessment, Mick and I decided we would let him settle into his new school, before going through yet another assessment.
Patrick liked his new school and made friends quickly, although he got on best with the little ones in Junior Infants. He’d always got on better with the younger ones. When he was in Montessori, in the afternoons he like to go into the baby room and sing to the babies and at family parties he always hangs out with his younger cousins – they all adore him. I didn’t know this at the time, but not being comfortable or competent in your own age group and gravitating towards much younger people, is an Autistic trait.
Things were good at school, until the November Nightmare reared its ugly head again. This time, it was so much worse because Patrick was so much bigger and stronger, plus he’d learned some every interesting swear words, which he liked to lob at us along with other items from his bedroom like money boxes, photo frames, books – anything that came to hand.
Patrick continued to punch, kick, spit, bite and roar but he also decided it would be fun to spice things up a bit with weapons – books, curtain poles, tennis racquets. Anything left lying around could be cultivated into a weapon of mass destruction. Back to the GP and back to CAMHS we went, fortunately they had got their act together and had employed a fantastic new Psychiatrist. She saw our stress and need straight away.
This time Patrick’s ADHD questionnaires from school and home matched up with 99% and 93% probability of ADHD. So, he received an official diagnosis. Like so many parents in our situation, this actually came as a huge relief. It meant Patrick needed help and support that he would now be eligible for, it meant we weren’t going mad and most importantly for me. it meant I wasn’t a bad mother, which for so many years I had thought I must be. The Psychiatrist felt he was showing a lot of Autistic traits and should be assessed, and although we had been in ‘the system’ for 4 years by then, it had never entered anyone’s head to put Patrick on a waiting list for one.
Due to distinct lack of laxatives or mental health professionals being sent to Leitrim there was still nothing happening and the waiting list of up to 2 years. We decided we had to go privately and as Mick had just got his annual bonus, luckily, we didn’t have to make another withdrawal from the bank of Mum and Dad to foot the hefty bill. We went back to Dublin for the assessment, to the Treehouse Practise in Sandyford for the assessment which was very comprehensive and required three trips and a forest worth of forms to be completed – but if you’re going to do something, do it right. Especially something as potentially life changing as this.
And so, one rainy Thursday night in March 2018, I took the phone call to be told, yes Patrick did in fact meet the criteria for Autism. We were not relieved, but nor were we shocked. For me in particular I had known for many years something was different. I had been running an Autism youth club for several years and was in the middle of my SNA training course, so by that stage, with reasonable knowledge and experience of Autism, I had a fair idea that he would meet the criteria.
Mick on the other hand was pretty surprised, he had told himself that Patrick wasn’t Autistic and much like every year when he tells himself in February, Ireland will win the six nations – he couldn’t possibly be wrong. I’m not slagging Mick in a bad way, but I think the diagnosis was probably like receiving the news of a multiple birth.
What I love about Mick though is that he is the least judgemental person I have ever met. I knew the diagnosis would never be any kind of issue to him. It was a shock to many of our friends and family, as Patrick like so many other kids with High Functioning Autism, seems perfectly fine in many situations and only as he has gotten older are people beginning to see his differences.
So many parents of children with similar issues to Patrick tell me they have faced the same situation with people’s perception. The concerns of thousands of parents are being regularly ignored, meaning diagnoses are being missed every day, by the professionals we trust to get these things right. A child Psychologist told me recently, that new research suggests, that in 85% of cases where the mother of a child had a ‘gut feeling’ something was different or wrong – she is right. That lived experience, intuition or the fact that sometimes’ mother knows best’ simply cannot be ignored any longer, because it is the safety and well-being of our children that is at stake.