He needs to know where I am all the time and gets anxious if I leave the room, even for a second. Danny dislikes loud noises, dogs and getting his nails cut. He loves paper, drawing, all things Disney and ice cream. He is also fond of hats and has quite a collection. Danny enjoys sea swimming which is great for him as he struggles to regulate his body temperature so this helps him cool off. 

Danny's autism impacts all areas of his life and massively affects how he interacts with those around him. He has no danger awareness so even trips to the park need to be carefully planned and risk assessed. Family trips are often very stressful and cut short, which is unfair to his siblings. They often miss out and we don’t get to enjoy family outings that many would take for granted. We have never had a family holiday. 

Danny needs help with all aspects of his personal care. He can become aggressive during toileting, and showering can also be extremely challenging. He is almost taller than me now and has just turned 12 years old so this is a big worry for me and makes supporting him on my own near impossible.  

Danny's world is already very small and I am a strong advocate for him and work incredibly hard to take him places so he can enjoy life experiences like everyone else. However, as he is getting older and physically stronger, this is getting harder to do. I worry his world will only get smaller, especially now as the supports seem to be getting less and less. 

We have not had any overnight respite since September 2023. Even before that, overnight respite had not been regular for some time due to the unit being repurposed to residential for emergencies. There is a clear growing demand for short break respite and residential provision so why is the Government not addressing this as a matter of urgency? The cycle now seems to be families that aren’t receiving short breaks go into crisis and therefore more emergency residential places are needed. It’s a vicious circle and, as it stands, there are currently no residential beds in Northern Ireland. 

We receive a direct payment package for all three children as Jamie and Eva also have additional needs. Direct payments worked well for Danny when he was younger but now he is older and stronger, it’s becoming increasingly difficult to recruit and keep staff for him due to his complex needs.  

Danny is currently on the list for an out-of-home placement which is a list I do not want him on. I love him deeply and want him to stay at home with me as long as I am physically able to manage. The harsh reality is I know I won’t be able to keep him at home forever but the trust should be doing more to help families like ours and keep our children at home with their families. All we are asking for is a break. I adore Danny but the daily caring role looking after him, especially on those more challenging days, is really beginning to take its toll on me physically. Our lives are hard enough as it is without having to constantly fight for services and support. It’s exhausting and shouldn't be like this. The trust needs to take responsibility and give proper help and support to families like ours.