As a parent cuddling my new baby, ‘respite’ was never a term or an idea that entered my head. To be honest, I had no real understanding of what that term entailed or would later come to mean in my daughter’s life, and mine. When Tess was born, I dreamed of my daughter growing up and all the typical girly adventures she would have and how nice it was that she had a sister to share all these moments with—school, boyfriends, weddings, babies—the list in my head was endless. Then, two and a half years later, without welcome or warning, came the diagnosis of autism.
We were surrounded by support and the idea that if we worked hard enough, at home and at school, autism didn’t have to mean an end to all those dreams for Tess. Although we have long since accepted that autism is here to stay, we are now facing a different future as a family. Tess is now attending St Paul’s Special School for children with autism. She is a gorgeous, affectionate and lovable 8-year-old. Tess is also non-verbal, not toilet trained, impaired by Sensory Processing Disorder & sleeping difficulties, learning disabled, fast, strong and has an incredible desire to bolt or escape out of every situation. Tess’ daily care needs are relentless. She cannot be left alone for even a few minutes; and of course this has a huge impact on me, my husband and her 3 siblings. The older and stronger Tess has become, the challenges of bringing her anywhere make me question if it is actually worth it. The embarrassment and disappointment that her siblings often feel, the stares and tuts we encounter from other parents, and constantly trying to manage and keep her safe make me think that it’s easier just to stay home.
We are tired. We are in need of a break. Respite should no longer be this mythical unicorn that people talk about; respite should be a secure and safe service provided to families in our situation. We have been on a waiting list for respite services since Tess started in St Paul’s 4 years ago. The list hasn’t moved, it has only increased in size. We are still in the same place on that list. Instead of the HSE increasing the services in relation to the need and demand, respite has become unreliable and significantly reduced (from 4 houses to 3 houses at St Paul’s).
Respite is not only beneficial for us as parents, but it is also incredibly valuable for our other 3 children. Tess’ siblings deserve a chance to do some typical family activities that may not be suitable for someone with ASD. Wide open spaces, small crowded spaces, anything with a queue, places that are really noisy or busy or places where you are meant to be still and quiet—it’s nearly impossible to plan an outing that doesn’t involve one of those elements. And that can mean that we have to leave early, or simply cannot attend the event.
We were advised to transfer Tess from St Michael’s House to St Paul’s Hospital because our case workers could see (before we could) that respite was going to be a primary need in our future. St Paul’s, as well as being a fantastic school, had the best respite services available. I shrugged off the idea of respite in the beginning, as I didn’t think I would be able to hand over the care of my daughter to strangers. I did not think that anyone else would be able to care for my child like I could or should. But I knew in my head that Tess’ name should be on the waiting list and I was hopeful that by the time we were designated a place that my heart would have caught up with this decision. Well, my heart caught up with it years ago. I can see the huge benefits to a stable and structured respite service. I know that I would be better able, physically and emotionally, to care for my daughter long term, if I had days to rest and was able to plan days away on my own or to look forward to special adventures with my other children. And Tess would have the opportunity to develop bonds with her peers. All of my other children have had countless play dates, sleepovers, birthday party invites—normal growing-up activities like going to the cinema or bowling with friends. If respite was provided, this would enable Tess to take part in activities outside the school setting and improve her interactions with her peer group.
As I mentioned, respite was not something I dreamed of in the beginning, but it certainly is now. I question the HSE’s reluctance to provide an adequate service to exhausted parents and isolated children. Does the HSE feel that parents caring at home for their disabled children are not worth helping? Does the HSE feel that because my child has a disability she does not deserve adequate services? Is it because Tess doesn’t speak, that she has no right to complain? The general public seem more concerned with water charges than further cuts to the disability services. People I speak to assume that if you have a need, and you have a diagnosis, that you will be given what you need. But we know that this is far from the truth.
There is a new model of respite bubbling under the service and it feels like cost saving measures to the most vulnerable yet again. I have been told that the model of respite where a child is minded by a family in the community is working in some parts of the country. This doesn’t sit well with me as a parent. I want my child to have a secure respite unit with her peers, with people she already. I would rather have a team of skilled people looking after my child in a house that was suited to Tess’ level of ‘busy’. I don’t believe any amount of HSE training to the potential family will prepare them for the reach of a child with Pica or a child who is determined to escape out any unlocked window or door. My stress and worry would be constant. A host family would be garda vetted, but who controls who else enters the home? Who is accountable? Handing over responsibility of care for a non-verbal child, even for a night, is not taken lightly.
We would have been better off years ago, when there was after-school respite care for a few hours while you waited for a place in one of the respite houses, or that you would have access to a social worker to help you navigate the HSE. The decline in services due to hiring embargoes and funding reductions have had a detrimental effect on the families living with disability. Now I have the added worry of being offered a different form of respite that I am not entirely happy with and if I refuse to accept it, will that be filed as ‘respite offered and refused’? Does my need for respite get ignored because I turned down what I feel is an unacceptable alternative? What are the chances that the HSE will view each case independently and determine which children are suitable for community respite or in-home respite? My previous experiences with disability services leaves me frightened that a suitable respite service is going to remain a thing of myths. Still, I’m hopeful that this won’t be the case. I know that respite is a primary need in our house, and I asked other families in a similar situation how they felt about respite.
Jaqueline K responded: My son will be 8 years old in January 2015. His diagnosis is autism and intellectual disability. He has two siblings, one older and one younger. He currently attends a special school and receives transport to and from the school on a daily basis.
The school used to offer a respite service one night per week, every fifth weekend and a two-week respite holiday per year. That was a lifeline for the families receiving it. However, since my son started at the school we have only received 3 weeks of holiday respite in total. Since May of last year, even holiday respite has been cancelled. There are a number of factors for this, but it is mainly lack of funding, cutbacks and an embargo on hiring staff.
Life on a daily basis with Autism can be extremely draining. It’s the same old saying ‘come spend a day in my shoes’ to see exactly what living with special needs/autism is like. As a full-time mother I am the carer in my son’s life. I attend all of his appointments and make sure his needs are met. His needs do take priority in the family—something his two siblings find hard to accept on a number of levels. Yes, some days go well, but we seldom go to events as a family unit.
Over the years we have found that there are very few people willing or capable of caring for our son. Family members seldom suggest helping out. So respite would be a service that we as a family could benefit from. The ideal situation would be the school respite, where he is already familiar with the other children. In the past it has been suggested that the way forward for us may be respite with a host family. But I’m hesitant. Apart from recent revelations of abuse of children and adults with disabilities in care, I find it very hard to accept a reason why people wish to accept our challenged children into their homes to care for them in exchange for payment. I would much rather the HSE provided the money to my son, so that I could choose a care assistant to work for me at my home.
Jackie O’B said: If I felt like committing suicide because of the hopelessness and lack of support, I would be told to ‘seek help’ before taking such a tragic step. Well, here we are: we are asking for help, and it’s just one closed door after another. If I weren’t here, they would have to pay to provide full-time care for my child. It simply doesn’t make sense! How about helping by giving respite to families, so we can take care of ourselves and those who are dependent on us?
Nicole added: My biggest fear is what will happen when we die. To be honest I can’t see services changing at all because of the lack of funding.
Carol, who’s son is now in adult services, mentioned: We used to have respite. The difference not having it anymore has made to the quality of my life and my ability to cope is staggering. I have just one or two nights a year to myself- I’m exhausted all the time. Eric has Norovirus and I was up 3 nights in a row, just having to get on with it during the day. He hasn’t been to his service for 2 weeks because of one thing or another. It’s torture.
Dermot MacEvilly’s son is currently attending respite. Dermot stated the following: “It is difficult for those that do not have a child with autism to understand the scale of the challenge of raising an autistic child—or, indeed, the impact it has on the rest of the family, in particular their siblings. Liam lacks any danger awareness, has frequent toileting accidents, has very poor attention span and is prone to having tantrum rages. As a result, Liam needs constant line-of-slight supervision, with an adult with him at all times. The longest we would leave Liam alone would be 3 or 4 minutes. Our day starts at about 7am most mornings, but at least once a fortnight Liam will wake before 5am and will be awake for the rest of the day. When he’s not in school, one of us has to mind him constantly. Liam goes to bed around 9pm most nights he will need his nappy to be changed. It is frequently 11pm before Liam goes to sleep, before which he can be quite agitated and vocal. So in short, we are on duty from 7am to 11pm most days. On top of that, we have to try and do a day’s work, run a home and raise a family, as best we can. The consequence of this is that we are constantly exhausted, and mentally and emotionally stressed. We struggle to give Liam’s brother anything like the level of attention and care he should by right expect, which further adds to our stress.
The one chink of light in the midst of this chaos is respite. Respite gives us a window to spend quality time with Liam’s brother and for us to dial off for a night. Respite doesn’t cure anything, it merely opens the valve a little to release some of the pressure in our lives. It gives us the space to recoup and helps to prevent the level of stress from reaching a point that is simply too much to bear.
Respite is not a holiday, or a luxury – it’s a necessity. Without it, it is not possible for parents of severally autistic children who attend institutions like St Paul’s to keep going without either their health, or their family life, or both from failing. With each family I spoke to, it was clear that we are all bound by the same needs and the same concerns. We are all desperate to have a suitable and reliable respite service as part of our child’s care plan. Respite is more than a desire—it is a most basic need.