Eoin’s story
Laura tells her son Eoin’s story. The family have been without respite/short breaks since the pandemic hit in 2019.
Our family is me, my husband Séamus, Eoin and Aoife. Eoin is 16 and Aoife is 13. We also have a lovely black labrador called Jake who is almost 13 years old.
Eoin is autistic and has severe learning difficulties, ADHD, pica, epilepsy and is non-speaking. He has extremely complex behaviours and relies on us in every aspect of his life (feeding, washing, toileting, clothing, communication, safety etc). Everything in our family life is centred first and foremost around Eoin, from work schedules for me and Séamus, to schooling for Aoife or any outside school activities.
Eoin is now 6 foot 2 and 18 stone. Strategies used in his younger years can no longer still be followed given his size and strength.
Since Easter 2023, our family has been coping with extreme complex behaviours and aggression from Eoin. What used to be Eoin voicing displeasure or demands by throwing items etc became directly targeting us. The episodes of rage and physicality can last anywhere from five minutes to an hour. At home, this means Daddy having to place himself ahead of me and Aoife to prevent us being hurt. Séamus was effectively under “house arrest”; ie he couldn’t go anywhere outside of the home if Eoin was there and leave him in the care of me and his sister for fear of the damage he would do and the injuries that would be received. Managing a full-time job on top of this for both of us has added to the stress and emotional load on our family.
Whilst the obvious effects of Eoin’s complex behaviours can be seen by others (hitting out at school, transport, home etc), what can often be overlooked is the toll it can take on siblings.
Aoife has had to see and cope with a lot growing up and, despite her selfless, caring nature, you would have to be superhuman to not be affected emotionally by her big brother’s needs. As well as that, she all too often has to take a backwards step in terms of getting the time she needs/deserves from us.
Eoin has always been very limited in what he enjoys and participates in. His number one thing is technology (phones, tablets, apps on smart TVs) to watch YouTube clips. He doesn’t sit and watch films or episodes but rather jumps from one clip to another, focusing on them obsessively at times.
He enjoys being in the swimming pool but must always be accompanied and watched as he has no danger awareness in terms of depth of water etc. A weekly visit with Daddy to a private hydro pool is a valuable and relaxing event for him.
Eoin likes to go on a swing and will go as high and as fast as he possibly can. Before he got larger, he would also enjoy riding on his specially-made trike but this ended when he outgrew it.
Eoin loves physical contact and is very tactile. He has always been this way and loves to display affection by hugs, kisses and cuddles. He enjoys rough play which is now limited to Daddy only due to his size and age.
The premise of he’s good, he’s good but when he’s bad… would explain Eoin’s character to a tee. He can be so loving, affectionate, giggly, smiley, but when something upsets or exhilarates him to a certain level, it is red mist descending and he almost becomes a different person with no control over his actions.
Our family have been without respite/short breaks since the pandemic hit in 2019. When things looked like they were easing up with the pandemic, Eoin was unable to return to normal respite arrangements at Lindsay House due to it having been used for permanent care of a number of children and the complete lack of any alternative by the Belfast Trust.
Without Eoin’s entitlement being met, it increased even further the load on the family. Eoin originally had been granted two nights of short break/respite per month but this was reassessed by Belfast Trust as us needing at least four per month. At a time when Eoin’s behaviours have become even more complex and demanding, the complete lack of proper respite has been one of the worst things that could have happened to us as a family.
There is no end in sight to this either as the introduction of a new facility run by a third party (Barnardo’s) in Randalstown (not exactly close to where we live) proved to be a complete red herring for ourselves. This was flagged to us and other families as the answer to our respite needs and, despite repeated delays in it getting off the ground, we were hopeful that, once started, this would be something we could then at least rely on for a few nights rest per month. Our hopes were then shattered in being told by the third party that they would not take Eoin on short breaks due to concerns about being able to manage his care. Children like Eoin who are the ones, along with their families, most needing respite are then left high and dry by Belfast Trust once again. There are no other facilities in place or indeed even in the pipeline in the Belfast Trust and this has been the case for many, many years. Belfast Trust has been reliant on renting beds in facilities such as Lindsay House from the SE Trust and, despite being the largest trust in NI, they have not put any plan in place to deal with the ever-increasing needs of families and young children who are growing into young adults.
Emotional breakdowns, elevated daily stress levels, physical injuries, damage to items and property, no downtime, no respite, psychological impact of being attacked by your child, guilt in not being able to help Eoin regulate and get through things… these are some of the issues we as a family have faced on a daily basis.
The number one fear for us as parents is what happens to Eoin if something happens to one or both of us. Eoin is totally dependent on us for all aspects of his life and any new person introduced to his life for care or engagement faces a learning period of how to communicate with him and give him what he needs/wants.
Eoin turns 18 in less than 17 months and the lack of provision in the child aspect of care is going to be followed by a cliff face drop off when he becomes an adult.
Our hope for the future would be that a residential place could be found for Eoin with a well-planned programme for his care. This would remove the ever-present fear of Eoin being left high and dry if something happened to us as his parents. Having the security of knowing Eoin was happy and secure for his coming years would be almost utopian to us.
Care of children and young adults like Eoin is not something any political party really gives any thought or emphasis to. When they come to your doorstep on campaign trails for votes, they don’t want to know when you raise the likes of Eoin’s situation to them.
As was evident during the pandemic, the education and social care of individuals like Eoin are dealt with last and least by the Stormont Executive and Assembly. The vast majority of members are not knowledgeable about the dire situation we face or see it as a priority for action.
The Government needs to invest in resources for families that provide the necessary care for respite and for adult residential placements.
Each of the Trusts needs to be held accountable for their failings and lack of action and planning, and investment is quickly needed in resourcing (staffing, training and facility-wise).
