A YOUNG Cork mum who suffered a mini-stroke which she believes was brought on by the stress of securing services for her young autistic son, is fund-raising for a new sensory centre to help others in her situation.
Claire Desmond, from Bandon, gave birth to baby Jack in 2013, and from the early days her mother’s instinct told her that something was amiss.
“When Jack was only three months, a time where babies would want to engage and smile at you, Jack didn’t,” she recalled.
“To get his attention would involve lots of interaction, tickles, throwing him up in the air and catching him, lots of physical movement, and he would giggle and meet you with eye contact for just a split second and I would feel on top of the world. But once he was still, he would continue to stare into space, looking contented, but for me, looking lost in another world, a world I did not know how to access.
“Time moved on, Jack did not mirror anything we did, he didn’t point, wave, make sounds or say mama or dada. I reported my concerns to our public health nurse at six months, who told me to keep an eye on it until his first birthday. I remember feeling the sickness in the pit of my stomach, a mother’s instinct that something was wrong.”
Claire started to blame herself — to feel she was a bad mother — and her reaction was to return to work as a Regional Administration Manager earlier than anticipated: “I wanted to feel like something was in my control again, I was good at working, but not as a mother, I was failing him and failing myself.”
Just before Jack’s first birthday, a visit to the GP added to the fears of Claire and her farmer husband Finbarr: Jack may be on the autistic spectrum — with an official diagnosis coming some time later.
Claire says: “I celebrated his first birthday with family and friends, but my heart was broken in pieces, knowing that my little boy I brought into the world is going to have to work much harder than other children at a very young age. Will he walk, talk, go to our local school, read, write, play sports, go to college or even have friends? I didn’t ask for this, nor did he — why us and what did I do wrong?”
Several months passed and despite a referral from a GP to the HSE, she had not heard anything.
“I spent five days on the phone, calling anyone and everyone in Cork who would listen to me, until I learned and educated myself about the HSE and child services.
“I filled out an application to Cork South Lee for early intervention and an assessment of need for Jack in September, 2014, and received a letter from Brothers of Charity (BOC) Family Services in December, 2014, advising of Jack’s referral to them for early intervention.
“In January, 2015, we began weekly home visits with BOC Bandon and we were lucky to get an hour a week of their time for Jack.”
After months of work at home and the support of BOC, Jack’s eye contact improved, Claire said: “I would catch him staring at me from the corner of the room, I would just break down into tears with pride. Jack couldn’t speak, so we were introduced to a picture exchange system whereby we taught him to pick up a picture of what he wanted and hand it to us. We had to put our hand over his hand and teach him how to move his hand, bend his fingers, grasp the picture and move his hand with the picture into ours, the reward being he got the item on the picture.”
But despite making progress, Claire still struggled to come to terms with the hurt, anger and guilt she felt.
“But I didn’t get time to sit and feel as Jack needed us to be strong and engaged in his early intervention, but where was the emotional support we needed during this time to keep it all together?” asks Claire.
“While other mothers brought their children to parent and toddler groups and admired their quirky attributes and boasted about their new words, we attended physiotherapy, hearing tests, speech and language appointments and occupational therapy on our annual leave days from work. I felt alone, socially isolated and misunderstood. I didn’t know other parents going through the same as I was.
“I was jealous, hurt and bitter at the world. I declined party invites and social situations as they would cause Jack distress, the noise and crowds were too much for him so they began to be too much for us as a family.”
Things reached breaking point in May, 2015, when Claire was aged 33.
“I was on my way back from work at a Limerick store visit when I began feeling severely unwell, I came home and went straight to bed. I woke up at 4am, unable to move the left side of my body. I remember crying out for Finbar to help me up, my face had drooped and as he pulled me up I fell to the ground. I thought I was going to die. Following a series of tests it was confirmed I had suffered a TMI (Mini Stroke) and I was put on blood thinning medication with monitoring. It was time to start looking after myself, to be around for Jack.”
Clare decided to enrol in a personal development course in CIT as part of their Honours Degree programme in Counselling and Psychotherapy.
“I began to let the feelings of loss and grief emerge in therapy, the sadness and hurt I was feeling, the guilt and anger began to seep through over time. I was not alone in my grief and pain; I knew there were other parents out there experiencing the same hurt and loss as I was. During the first year of this course I made the decision to help other parents of children with autism reach out to one another, to seek comfort and acceptance in a world not built to really understand what it is like to live a day in our lives.”
At this point, Jack was attending a pre-school setting in the Shine Centre for Autism in Carrigaline in September ,following his official diagnosis of ASD in July 2016 and Sensory Modulation Disorder at two years old and 10 months.
Clare was still working full time but getting increasingly disillusioned with the system: “I had to evaluate why I was working a full-time job, with no public services available for Jack as was required on his diagnosis report for Speech and Language and Occupational Therapy. He was still unable to speak verbally. I had to work and pay for these services privately, who else was going to do it? In two years we had a maximum of five speech and language appointments and two Occupational Therapy sessions — Jack required weekly therapies.”
Clare is adamant she doesn’t blame BOC: “They were doing what they could do with the little resources they had, and were amazing from the very start. It was the higher power of the government and lack of strategies and resources that were holding up the help my child needed.
“He would become frustrated and distressed and lash out physically, it was the only way he could communicate his frustration at not being able to tell me what he needs.
“I looked around for social opportunities for him to become involved in at weekends but nothing was available to meet his needs, activities were designed to fit one size, a fully verbal child who can follow functional directions and engage socially with their peers.”
In March this year, Clare decided to leave her work to take care of herself and Jack.
“It didn’t come easily, financially we knew we would struggle but we made the decision to begin focusing on Jack’s needs and my mental health. Pending my departure from my employment I had put out a feeler locally on social media of any parents in the area that would like to meet for a coffee and start a support group. Within weeks I had 20 responses from local parents very eager to meet up.
“The support group started in April and quickly expanded into a social club with a plan to work to develop a fully equipped sensory centre in the town.
“We had lots of tears and laughter but, most of all, support from each other. The group quickly grew over the first two months and the subject of not having social opportunities for our children began to come up frequently.”
By fundraising themselves, they have held various social opportunities for more than 30 children in the area in things such as sports, drama, yoga and self-defence classes — and expect a further 30 to join in September.
“All classes are tailored to meet the needs of children with autism, they are taught at a slower pace, with lots of volunteers from local schools such as special needs assistants and social care workers already having experience of working with children on the autism spectrum while working in a 1:1 capacity to help each child get involved socially and learn some new skills.
“We have also set up a gofund me page (https://www.gofundme.com/bandonautismchildrentherapyhelp) to help secure further donations to keep the club running as new members are joining weekly. We now ask new members to pay a small subscription annually of €50 to cover insurance costs and our charitable status which we currently now have with Arch Federation of Friendship Clubs.”
Claire’s next step is to fund-raise to cover the rent of a permanent premises in Bandon for the support group and to purchase sensory equipment with the overall aim of opening a sensory social club for children with autism in West Cork.
Claire says: “Jack has been involved with club activities from day one and I have seen first-hand the impact it has had on him socially. He is a happy little boy and has been beaming from the outset. He is currently doing well, his eye contact has improved greatly, he makes sounds and communicates by pointing at the pictures or the items he wants and has a privately paid sensory programme we work on at home. Hourly sensory breaks are important for him to focus, by means of deep squeezes and swinging back and forth in our arms or on a blanket held by us both.
“While Jack is small it is easy to do this manually but as he grows up, we need access to specialised sensory equipment to meet his needs, which are very expensive.
“Many children with an autism diagnosis have sensory needs and need sensory regulation so to focus neurologically on learning a new skill or to engage with other socially.
“Having a club kitted to meet the sensory needs of our members will create the opportunity for each child to get the vital regulation, learn how to self regulate their senses at home and have fun while doing so in a safe environment. We have been looking at premises in and around Bandon town but have not yet found or secured a suitable space.”
Bandon Autism Parent Support have members from Clonakilty, Aherla, Enniskeane, Ballineen, Crossbarry, Kilbrittain, Innishannon, Kinsale and Bandon, aged three to 16. All are welcome. Upcoming fundraisers include a Ladies Lunch, on September 9, in Copper Grove Bandon, tickets €35 on sale at www.bandonautismparentsupport.com; a 007 themed Gala Ball on October 14 at Innishannon House Hotel and a Bike Run on September 10 by Crossbarry Motor Club.
Claire says: “Jack will attend our local Scoil Padraigh Naofa school in Bandon in September for one year of early intervention, he is guaranteed one year at this school. But we have been advised to make applications to other schools in the area for future placements. When one hurdle feels in the distance, another comes in — the fight will never end for us.”
See bandonautismparentsupport.comor Facebook: www.facebook.com/Bandonautismsupport/
BANDON Autism Parent Support have members from Clonakilty, Aherla, Enniskeane, Ballineen, Crossbarry, Kilbrittain, Innishannon, Kinsale and Bandon.
Here, some of the mums outline what the group has meant to them.
“As a parent of a child with autism, I realised that whilst his educational needs were being met through school, there was nothing outside of this that he could get involved in. My other two children are spoilt for choice with all the activities available to them but if Johnny was to try an activity we would have to travel miles to try it out by which time he would have lost interest.
“This new club opening in Bandon has already introduced him to Playball, Jui Jitsu and Yoga but more importantly it has given him something that people often mistakenly believe children with autism don’t want... a group of friends and a sense of belonging.
“It is run by people who know and understand the children as they live their trials and tribulations every day so every effort is made to encourage and stimulate but also to open up theirs worlds so they will be able to cope with the challenges they face every day.”
Sharon Bolster, mum of Johnny, aged seven
“I am so grateful to BAPS for the many opportunities it has created for my son. Being able to socialise with peers and be part of a group/team is so important for every child’s growth and development and unfortunately there aren’t enough opportunities for this for children on the spectrum. Thankfully, BAPS has changed all that and there’s now a place for everyone! Such a caring, passionate group of people, Bandon Autism has been an absolute godsend.”
Deborah O’ Driscoll, Crossbarry
“My child is non verbal with an intellectual disability. He has attended the playball and Brazilian Jiu Jitsu through the club. He is meeting other children regularly and interacting with them in a social setting, he would be unable to do this in a regular club, as there are fantastic SNA’s who help out on a volunteer basis. His behaviours at home have definitely improved since joining the club, less meltdowns as he is getting involved. My son is definitely getting great benefit out of the club, and I would love if he could benefit from a permanent sensory club.”
Karen Crowley, Bandon
“My son Liam is three years old and has been diagnosed with child autism. He is non-verbal so it’s very frustrating for him not being able to say what he wants or tell us if he in pain. The day I got his diagnosis was the hardest day ever, having to accept that my beautiful boy was autistic. Since BAPS started it has totally changed our lives, Liam is getting so much from doing playball yoga and sensory work, he is making so many friends and is just the happiest boy today, all thanks to BAPS. Liam has a lot of sensory needs and having a premises for kids with autism would be a true dream come true.”
Samantha Lordan, Bandon