The Journey to Advocacy and Finding Charlie’s Voice
Jan 7, 2021 Speech Blubs is proud to present the powerful story of a mom navigating child services in Ireland to become an advocate for her son, finding Charlie’s voice, and also a speech and language therapist that could help!
I remember the day like it was yesterday – where I parked, what I was wearing, what day of the week it was. I didn’t know then that this would be the day I would find my power.
We were on our way to see a Consultant Neurologist due to concerns about our little boy’s hypotonic and gross motor developmental delay. Charlie was 13-months-old at the time. The consultant we met noted the marked hypermobility in Charlie’s joints and told us he presented with benign hypotonia due to his hypermobile joints.
I Wasn’t Ready . . .
We had nothing to worry about until he said this – “your child will never be a great runner or a gymnast” – something inside me changed that day. Manners and respect have always been instilled in me from a young age – this was a very experienced consultant and so I should listen and respect his opinion – except – except for he was telling me that our child would not and could not.
I remember holding my hand up and stopping him mid-sentence. I remember gaining my power and telling him that we had absolutely no interest in what he could not or would not do.
We would only focus on what he could and we would make sure that he was equipped to tackle everything else. We had no idea of the journey ahead. He walked for the first time at 15-months-old – his determination very evident from an early age!
At 15-months-old, he was referred to speech services in our health system. This is when the hard work would begin. Waiting lists were extraordinary and starting this journey meant that we were not even aware of the work that Speech & Language Therapists (SALT) (or speech and language pathologists or SLPs) did, let alone knowing whether we should self-refer or not.
A Slow Start
Hearing nothing from our health service, we sourced a SALT before Charlie was two and started going – these sessions were a disaster and he could not just say these words on demand. At 27-months-old, our health service called us for the review – one year since the referral.
We were told he had a severe expressive delay, and poor communication and play skills. We knew this as we had an older daughter who was miles ahead of where he was at that age. By now, he was 2.5-yrs.-old and was not really speaking. At that age, we have recordings of our daughter singing whole nursery rhymes and bedtime lullabies.
We were told waiting lists for public services were between 12-18 months – so off we went to find a private SALT armed with a little, but not a lot more information. The impact of meeting our SALT was immense – she was kind, considerate, hugely experienced, and almost immediately noted his “typically motor dyspraxic” presentation.
She explained all about verbal dyspraxia (or apraxia). I went home and did what they tell us not to do and I Googled it! Life-Long. Neurological. Impact on reading and writing. Intense, frequent intervention.
I could not believe that our boy, born into a family of talkers could have this rare, and debilitating speech sound disorder. Debilitating only because in Ireland the experience was low, the health service was at breaking point.
I guess the future I thought we would have was now not the great plan I had envisaged. Both my husband and I had demanding jobs and I wasn’t prepared for how much we would have to fight to just have his and our voices heard.
Although now working as an accountant, my life prior to that was in Biochemistry – I was halfway through a Ph.D. when I moved to finance – my passion for research and evidence-based approaches was still very high. I spent every minute trying to find out more, relying heavily on ASHA, Apraxia Kids, and other organizations, as we simply had nothing. No documentation or care paths. No prevalence rates, and worse still no services.
Lots of Changes
Fast forward to 2019, 4.5 yrs. after Charlie’s first referral until we received our very first intervention from the health service. This ‘intervention’ was a ‘block’ of six weeks where Charlie was seen once a week. They implemented an AAC and we haven’t seen them since. He is now seven and has been seen six times by the Health Service.
During that time, I took a career break. The long hours and our private appointments with physiotherapy, occupational therapy, and speech therapy were taking its toll. Charlie needed to be centered and we needed to make sure that could happen.
We were so fortunate to be able to do this, so I left my job – a job that I absolutely loved – even with the 60 hr. weeks!!!! I have never looked back, as the world of advocacy has led me on a journey that no degree or professional qualification could ever take me. I felt fulfilled in my professional life, but this fulfillment was different.
My parents brought us up to always stand up for the underdog. This got us into so much trouble, but I am so thankful for that drive to ensure that no one receives different treatment.
The more I researched, the angrier I got. The range of emotions from grief, guilt, and anger was coming and going – and sometimes all at the same time. Every time I felt grief, I got even angrier at myself as we had a living, loving, adorable boy who was bringing sunshine and laughter and love into our home. He may be 1:1000 in statistics, but he was 1:1,000,000 to us.
So many other parents are not so lucky. But I realized the grief was actually just trying to accept that the playdates were not happening, the singing at the Christmas Choral Services was not on his agenda (yet), and then the sadness and realization that we could not send our two children to the same school.
Our daughter was attending a school taught through the medium of our native language – all schools in Ireland learn the Irish Language. Some schools teach only through the medium of Irish and we had decided to send her to an Irish speaking school. Charlie was 4.5 and was due to start school, but we kept him back a year and sourced a different school that could support him on his journey – one of the major blessings we have come to realize!!!
I guess during all this, at the back of our minds, was that Charlie was one of the lucky ones. We would never accept the things he could not or (supposedly) would not do. My life had changed for the better as I was now in a world I never knew existed. I had a privileged perspective that not everyone sees and with that privilege, that I could do some good.
We could make sure that maybe no other family would travel the journey alone – and so the advocacy began. I had a plan – 1. RECOGNITION. 2. AWARENESS. 3. SUPPORT. 4. EDUCATION.
This was so important to us as we wanted validation for Charlie’s speech. Validated that he was not a lazy, stupid, angry, frustrated, or unsocial child! Yes, we had heard it all! Responses from well-wishers such as “he’s just a boy,” “he will talk when he’s ready,” not to mention the clear lack of intervention or even the critical need for intervention in the health service.
Within the professional body, it also emerged that there were many SALTs without any working knowledge of this very specific disorder. I made a “hit list.” The Government. Professional Body. Academia.
“Lucky” I guess to be living in a small country and based in its Capital, I petitioned the state officials in healthcare, education, and disability services. I contacted the only four universities that deliver undergraduate and post-graduate speech and language courses, and I also contacted the Professional Body.
The numerous phone calls and letters and petitions to the Health Service –clearly almost broke us. This organization couldn’t and wouldn’t realize it needed fixing and certainly had no intention of breaking it down to build it back up. We needed a plan.
How looking at the current situation in Ireland and the level of experience and extrapolating that into the lives of children and their families living with apraxia could also do.
We were also lucky to have received support from academia, Dr. Aileen Wright from the School of Allied Health in the University Limerick (UL) was on the other end of the phone when I contacted one such University. I also received great support from Dr. Nicole Mueller from University College Cork also, but the fit in the UL meant that there was someone who saw the possibility and potential of what developing a research project on this area could do.
I had already set up a private support group on Facebook. Selfishly, I needed hope and I desperately wanted to connect with parents and families in the same boat. Using these families we could support the work that UL needed to do and so the very first research in Ireland would take place!
The Wheels Started Rolling!
The wheels were now in motion. Secondary to this, we hoped this would allow the professional body to advocate for this area. In Ireland, the professional body is not funded to a level that allows advocacy on a full-time basis. And so, the power had been removed. In many cases in the past, local government health officials would even develop plans without consulting these professional bodies.
Fuelled with a new sense of purpose and a motto that “every child deserves a voice” and a mission that “no child would be left behind,” we put ourselves out there. Publishing in the Irish Times (the largest newspaper in Ireland), doing national and local radio interviews, and appearing on National TV, we shared our story in the hope that our position and story could give hope to those in the same boat, but more so would raise awareness.
As much as Dyspraxia DCD was confused in Ireland, this was adding a whole new dimension. No, it was not the same as DCD. Yes, it is called Verbal Dyspraxia, but it’s not Dyspraxia DCD. Yes, it is the same as apraxia of speech. No, I have no idea why the naming convention is different! We shared our hopes, worries, and tears and every interview got easier and drove us even more.
Sometimes, it made me even angrier that communication, as a basic human right, could so easily be dismissed. In those cases I had to check myself – I never knew how important it was until it entered our lives, so I could not be mad at those that did not know what it was like to see their child fight every single day to find their voice – one of the first milestones that children achieve. Just because he could not speak, did not mean he had nothing to say.
We realized that we badly needed support. For parents, their families, for educators, for professionals. Promises from Government officials fell on the floor. We could forget that a system that left us waiting for 4.5 yrs. for an intervention, and even now at the age of 7 it has only seen him six times, could help.
So, any change was on us – parents needed to support parents. By now, the Chair of our Professional Body and I were in regular contact. She appeared on TV with me and I have frequently contacted her about what we could do next. Who could help? What could we do? I had lived all my professional life as a problem solver and yet I could not fix this.
The Best Laid Plans . . .
We decided to start fundraising with my husband nominated as the sacrificial lamb to take on IronMan Cork 2019. We partnered with Dyspraxia Ireland, who told us they could support Verbal Dyspraxia. But, in hindsight they wanted to stay in line with their constitution and remain focused on DCD – which was totally fine – they set aside the funds raised for when and if we needed them and there were no hard feelings.
We put in place the plans for the first national conference and then Covid hit! Whacked us all out of our routine and everything stopped. Health services, intervention, schooling, research. This pause, while utterly devastating, allowed us the time to look at the education piece.
At this stage, Charlie was in his first year in the “big school.” The school taught me things I never knew!!! But, it also showed how little educators receive support for children with SLCN.
In Ireland, I discovered there had been no increase in language units since 2011 – That there only 49 language units in the country despite 70,000 children estimated to have SLCN. That the language units only allowed two years max attendance and that many could not cater to apraxia. Also, if you had a dual diagnosis (e.g. autism), but were attending mainstream (a non-special school) you could not apply!!
“It Comes Down to Funding”
So, onto the Government Minister for Special Education to raise this topic – all comes down to funding, and availability of Speech & Language Therapists! We are privately funding a SALT to go into Charlie’s school twice a week for intensive therapy (2 hrs. a week) – not many have this luxury.
Despite the hurdles and blockages including with the Irish government, this journey we are on has been immensely rewarding. We have met people who are all part of our ‘Charlie’s Angels.’ We speak up for those that cannot. We have petitioned local councils who have now agreed to include communication boards as standard in all public play spaces (what a coup!).
This ‘revolution’ is growing and more councils throughout the country are joining in. For schools and school playgrounds, we have developed communication boards funded by kind donations, and we will continue to work towards the ultimate goal of a National Center for Referral, and support and intervention in its truest form for those presenting with apraxia.
Charlie Changed the World!
We never knew on 17th December 2010 that Charlie would change the world. That purpose was far greater than even we knew. He brought a love so ferocious and a strength and determination way beyond his years, that he would allow his mom, dad, and sister learn about a world that we would never have entered had he not been born. We are indeed the luckiest family in the world.
He may not have found his voice yet, but he is getting there, and to us he is perfect. If you have that power, and that strength, then advocate. Not every parent can, but if you can help one other family then imagine what that power can bring? Maybe change? Maybe it will allow a parent to sleep easier at night knowing they are not alone?
The potential, like our children, is limitless. I hear “I love you, mamma,” he sings “happy birthday banana” to me (he loves that he can plan the word banana so uses it for fun and jokes!), and I never believed I would say “don’t speak to your sister like that.” Yes, he is still predominantly unintelligible, but there are moments of pure clarity and these are celebrated!
Remember this is a marathon, not a sprint, and the finish line for both is just as sweet.
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