I am mum to three gorgeous children. Our daughter is working for her GCSEs this summer and our boys are both at primary school. Our eldest son, Ben is ten and has Down’s Syndrome. He was diagnosed postnatally and at the time it was a shock. I’d never met anyone with the condition and really had no idea what the future held for us. I often wish I could go back in time and tell my younger self not to worry.
Our family has been enriched beyond our wildest dreams by our kind, inquisitive, determined son who most of all brings fun and laughter into our lives. (His sense of humour is truly bizarre!) There have been some challenges too. Ben has a variety of medical needs and has frequent appointments. I do more laundry than you would think humanly possible and I get frustrated with all the form-filling, which often seems to duplicate the same information. The biggest challenge to me as his primary carer is sleep, or rather lack of it!
What’s the Problem?
Ben slept very well as a tiny baby and we actually had to wake him up for feeds. It’s been downhill since then! He is a very restless sleeper and often wakes in the night. As he grew older, it started to get more difficult to settle him to sleep, and he also started to wake very early. If he wakes around 3.30 a.m., it’s very difficult for him to go back to sleep. Earlier than this, and he usually goes back down, but he can’t self-settle, so I have to stay with him for up to an hour to help him get back to sleep.
Typically, he wakes between 4 and 5 a.m. and he needs constant supervision so I have to get up with him. Ben’s poor sleep has been an issue for most of his life, but it has been quite difficult to get the right and help and support. I’ve been to numerous appointments where I’ve had my concerns more or less dismissed as ‘something he’ll grow out of’.
Hooray! A Diagnosis!
We did have a couple of breakthroughs along the way. In 2011, Ben was diagnosed with Coeliac Disease. Prior to this, he was in considerable pain, and once his modified diet and other treatment started, the joy of having Ben waking up chatty and relaxed rather than grizzly and crying every single day was just great. Despite the lack of support from some professionals involved, Ben was fortunate to have a very diligent E.N.T. consultant who concluded that he had Obstructive Sleep Apnoea. In 2014, Ben had his tonsils and adenoids out to treat this. The surgery was only a partial success. Technically the apnoeas had been sorted but his sleep continues to be as disrupted as ever.
What has helped?
Ben’s paediatrician recognised the sleep problems were putting a strain on the whole family, and he helped us access respite care which has been a life-line. Not only does it give us a break, but it helps with Ben’s social inclusion by giving him access to clubs and activities. Last year, he went on a residential trip as part of his respite package. He went to an outdoor pursuits centre and took part in activities such as sailing, climbing and kayaking. More to the point we all coped (more or less!) with Ben being away for two nights. Having access to this sort of support has developed Ben’s confidence and in the long term will help promote his independence.
Where are we now?
We are awaiting yet another sleep study and further referrals in an attempt to improve Ben’s sleep. It is possible that not much can be done. He’s not a good candidate for a CPAP machine as his face is quite flat. He also has sensory processing issues which means he hates having things touching his head. We are experimenting with different approaches to melatonin. Ben is a very resilient boy and he seems to cope pretty well with his poor sleep patterns. Just now, I believe it is more of a problem for me than him. I have had ten years of broken nights and worry about the long-term effects on my health. After all, sleep deprivation is used as a method of torture! I find it amplifies all the other pressures on my life and I have had to find coping strategies.
Having a wonderfully supportive husband and family definitely helps. I have a good network of friends who support me in all sorts of ways. On the plus side, I’ve witnessed many lovely sunrises, have become a connoisseur of fine coffee and often do at least one load of washing before the school run! I’ve also discovered the truly strange offering of cartoons available on the television very early in the morning. (The jury is out on whether this is a plus!)
I am not alone.
As I’ve mentioned, I have a really good support network that helps me with the very real challenge of Ben’s sleep problems. I am aware that this is an issue for many families with children with all sorts of additional needs. This is an issue that has to be taken very seriously as it affects the whole family. There needs to be consistency and adequate access to services which provide support with sleep problems.