As the training for this year’s cycle to Sligo intensifies, Lesa and I want to provide some updates over the coming weeks to let you know where the money you raised previously has been spent. Without your amazing support, our life would be totally different and we find it very hard to express our deep appreciation for the efforts of all involved.
As you may know, Matthew has a unique set of requirements and day to day living can be very difficult for him and therefore us, as a family. An ongoing challenge that we faced was getting Matthew safely to and from the school bus & carer’s car that picked him up and dropped him back to our home. This was a particularly stressful time from Matthew and he often got extremely anxious during the transition. This resulted in many incidents where he ran out onto the road and it often took Lesa or I over an hour trying to calm Matt down and coax him into the safety of our home. In these situations, Matthew has no appreciation of road safety but thankfully he was not hurt or seriously injured.
Thanks to the Trust, we were able to arrange to get a secure gate and hedging fitted in our front garden to prevent Matt from running out and onto the road. The change has been dramatic and has made a significant difference for Matt. Now anybody, including his carers, can simply drive into the driveway and close the gate behind them, safe in the knowledge that Matthew can transition without anxieties, dangers and worries. He is now much calmer at these times and it has made the process far less stressful for everybody.
We will provide some more updates over the coming weeks as to where your hard earned money is being spent. In the meantime, enjoy the training and thank you again for your kind support.
Thanks for all the support throughout 2016. The money raised has helped Matthew and our family with a number of initiatives to care for and support Matt.
Sinead, Al, and Pauline are three people who work in the area of care suited to Matt and started coming to the house to help with Matts routine for bedtime. This is a very tiring routine and can take a number of hours given Matts anxieties around the whole transitioning from one room to another. Most importantly Matt himself benefits from having new faces around and he looks forward to seeing them. The carers are also qualified to help take Matt out of the house and have brought him on afternoon trips to the beach and to the Phoenix Park. This is great for Matt and provides him with fresh experiences and a break from the normal house surroundings.
Ongoing we have Carmel giving Matt great foot and body massages which he has taken to like the proverbial duck to water. Carmel was a great help in finding a very good value fold-up massage table & it’s been great to come home and see Matt so very relaxed and indeed sometimes prompting Carmel as to where exactly he needs pressure. Many thanks to Carmel for her great patience and know how in dealing with Matt.
After much research, Lesa found options for private respite and through Nua Health Care Matt has had a few weekends away in their Portlaoise respite house. These couple of weekends with Nua Health Care provide Matt with specialised care and allow Matt to get some new experiences in a safe environment.
All of these measures are thanks to the Trust which is only there thanks to brilliant fundraising of those involved in the Mighty Matthew Cycle and the kind donations and other fundraising initiatives taken by friends and friends of friends.
Thanks for all your support and l hope this is a little insight into the good from all your hard work.
60 Cyclists, 10 Support Crew, 3 Outriders, Lead Navigation Jeep, 2 Support Vans & a rear Puncture Repair Jeep….we all made it safely from Clontarf to Lahinch covering over 330km in extremely challenging conditions.
Thanks to everyone who cycled, supported, sponsored and donated to the Matthew Hayes Trust to help make the event a great success and raise much needed funds to help support Matthew and his family.
We have been overwhelmed with the support we received at the inaugural
Mighty Matthew cycle last year. It meant so much to us have so many of our
family, friends and the community recognise our struggle. When you think of a
charity or fund raising you think of a happy ending , a cure , a solution. This does
not apply for Matthew! There is no cure, no solution, no therapy that will
instantly fix Matthew or alleviate the many issues that are associated with his
condition. Matt is now 17 and his life has become progressively more complex
and difficult in the last few years. He is a beautiful, physically healthy young man.
He is our Son, our first born and we love him dearly. However this does not take
away from the stark reality that his condition makes daily living extremely
challenging. Some mornings you wake up with the dread of the challenges Matt
and the family will meet through the day.
The funds raised have helped us to improve certain aspects of Matthew’s life and to help us a family. Firstly and most importantly, we have been able to access a reliable and qualified carer to bring Matthew on regular outings throughout the week outside of his normal school hours. This allows us to spend time with our other children and do normal daily things that other families would wish to do. It
also means that Matthew gets one on one time with a Carer dedicated entirely to his needs which otherwise would never be within our reach.
The Trust is a massive support to us and the many other initiatives that are in
the pipeline will help with Matthew’s care and quality of life and this means the
world to us.
Whilst this will help, our fears for Matthew’s future remain. At present we do not
know what care will be provided by the State when he turns 18. This is less than
11 months away! Our main objective from the Trust is to gain a Respite facility to
care for Matthew on a regular basis to allow our family to rest and recharge. We
feel that we will be better able to deal with the complex and demanding needs
that Matthew has but will also provide us with time to spend with our other
children and do some normal family activities that are impossible to even
consider while Matthew is at home.
Our ongoing appeal with the HSE will continue, to fight for the proper resources
for Matthew especially when he turns 18. We hope to get some positive
resolution on this but remain cautious having been repeatedly knocked back
over the past number of years.
Again we cannot express or gratitude enough to those who have made the
Mighty Matthew Trust possible, to those who have participated in the events and
fund raised to those who have contributed to help our son and us as a family.
Your continued generosity, commitment and support will make this journey we
are on less difficult.
When our son Matthew was born 17 years ago, it was one of the best days of our life. This magnificent, perfect beautiful boy that we absolutely adored. For the first 2 years of life Matthew developed like any other child, he passed all assessments with flying colors. Then things started to change. He stopped talking, lost all eye contact , was completely in his own world moving further away from us every day.
He was diagnosed with autism at the age of 3 years. Our whole world was turned upside down. It was like bereavement but there was no time to grieve. We had to pick ourselves up and get immediately on the autism road to recovery!!! We read every book, spent hours on the internet, it was all about early intervention so time was of the essence. We did every therapy, diet and schooling that was possible. Some made a little difference while others did not.
To fast forward 14 years later Matthew is now 17 years of age and has so many challenging behaviors. Self-injury behaviors, for example smacking his face so hard that it bruises, pinching and biting his body, pulling his hair out which can lead to infection. He also has rituals like OCD which have to be adhered to on an hourly daily basis. He requires supervision 24 hours per day. He suffers many sensory issues, to combat this he has to use ear defenders to block normal noises which can really upset him. He wears a hat and gloves all the time to try to stop him from injuring himself when he becomes upset.
Our family consists of 3 other children, a daughter who is 15 years of age and twin boys aged 7 who absolutely love Matthew but as you can imagine is difficult for them to live with on a daily basis with someone with so many complications. We have of course gone and done everything within our powers at this stage to help Matthew in the best way we can and whilst the experts (St Michaels House, Social Workers, Psychiatrists and psychologists) in the field all agree we are in crisis point and recognize the fact that Matthew is a very complex case there seems to be no funding available to help us.
Matthews’s condition has worsened significantly since his original diagnoses. There have been times we have felt we were isolated and alone in trying to deal with all the issues that Matthew has. In addition to this deterioration, the cutbacks that have been occurring in the HSE have made life for both Matthew and our family very difficult and challenging. However we have been overwhelmed and shocked by the support we have received from our family and friends who have watched us struggle over the years with little or no support from the HSE. Out of this Matthews Trust was born and from there, this blog- Mighty Matthew!
This blog will be used to keep you updated on daily life and how your hard earned funds are being used to help! To find out more about where your funds are going click here!