At first glance most people see a Mummy and her little boy, getting on with life and having a good time. And you know what, most people are right. In many ways Danny* is just like any other two year old, he enjoys the freedom to walk about, eating his favourite food, splashing in water, watching Clangers on television, and occasionally eating soil!!
What most people do not realise is that a year ago our lives were very different. For I adopted Danny as a single adopter and have spent the last twelve months experiencing the most wonderful, crazy, stressful, fantastic life change. I had been through a rigorous process with lots of training on adoption, but no one could have fully prepared me for the arrival of Danny.
Danny came to me with a list of medical issues, the main ones being that he has a form of dwarfism and global developmental delay. This impacts him in a variety of ways but not half as much as you would think, as he is a determined little soul with a happy heart. In fact, the most common thing strangers say to me is "Doesn't he have beautiful blue eyes” and “what a cheeky smile": this is Danny's immediate impact on those he meets.
So twelve months in I thought I would jot down a few reflections on my experiences this year.
Aside from bonding and getting to know each other, Danny and I spent the first few weeks and months together on various trips to the hospital, some planned, some not, as I got to grips with what support Danny would need. Overall, we have had a very positive response from the NHS. However, I was truly surprised to discover that medical records are not automatically transferred from one hospital to another when a child with additional needs is adopted out of area. I had to ask Doctors to send for his previous records, and the response was sometimes that this wasn't necessary, which I found astonishing.
I also naively thought that medical professionals and doctors would know a lot more than I did, but this wasn't always the case either. Danny's form of dwarfism is not that common, and it’s quite likely that most Doctors and medical staff may never come across it during their careers. One of the positives of adopting is that I had had time to discover a lot about Danny's type of dwarfism, prior to him arriving, researching and reading anything I could get my hands on. I also got the chance to speak to some helpful people through Dwarfism Sports Association UK and Little People UK who gave me a real insight into the do's and don'ts, as well as introducing me to the strong dwarfism community. This information was invaluable and gave me confidence when I needed to ask medical staff questions and occasionally challenge their decisions.
Another discovery was that there is not necessarily a consensus across this country, or even internationally, on the guidance for the medical world on how to support people who have different types of dwarfism. This meant that some of the advice that Danny's foster carers had received was different to what I received when he came to me – even opposite! This was a bit unsettling as it was difficult to know who to trust. I found that connecting with other families was really important to get advice; this was mainly through Facebook groups, not appealing for everyone, but for me it has been a real source of positivity. So what have I learnt from this? Make the NHS your friend, work with staff, but don't be afraid to stand your ground as well. And do your research!
Making the decision to adopt Danny has been the biggest decision of my life so far. My family has supported me with this, but that doesn't mean that they haven't had their worries. My mum in particular really struggled with why I would choose to be a single parent, with all the difficulties that involves, let alone adopt a child who has some additional needs. Why would I make life difficult for myself? I knew that Danny would win her over in time, but I was concerned that when she looked at him she saw a list of the problems, rather than seeing him. The turning point for us was attending the Little People UK Conference (LPUK) last year. I was really nervous about how Mum would find it, but was encouraged by the LPUK admin staff to give it a try.
My mum and I arrived at the hotel for the conference and quickly got registered and settled in. My mum asked me whether I thought Warwick Davis would be there and I said that maybe, as it was his family who had set up LPUK. Now, my mum is a bit of a Warwick Davis fan: we had grown up with Star Wars, the film Willow was a favourite of my younger brother's and mine, and we had all watched Harry Potter. So I was quite excited when I spotted Warwick sitting having a chat with some friends in the hotel atrium. As we were heading towards the area, I tried to calmly whisper, "there’s Warwick over there." Now my mum sometimes doesn't hear that well and, in a huge hotel atrium, my whisper was lost on her. However, she knew I had said something so asked me to repeat myself. I was very aware we were still walking towards Warwick at this point so tried again to say in a low voice "it’s Warwick Davis!" Mum still didn't hear me and so several times I tried to tell her between gritted teeth while we got closer and closer, until we were almost on top of Warwick and I had to steer my mum to the coffee shop, as I started to get the giggles. When she finally heard what I said she said quite loudly, "Where is he?" and I did a subtle head nod towards him while trying to remain composed. Mum was a little starstruck and very impressed that Warwick Davis was not only present but was fully involved in the conference, and added a nice level of humour to the medical forum that took place in the afternoon. The conference really helped my mum to see that life with Dwarfism can be positive, and the level of support from others was great. We both left with signed copies of Warwick's autobiography, and I knew that LPUK had made a positive impact when my mum said to me, "Well if Danny has Warwick's attitude in life he is going to be OK." And so far Danny is showing signs of Warwick's daredevil antics as a young lad; I have had to rescue him several times as he has tried to climb various bits of furniture in my house, and is often described by others as an explorer (which is code for “doesn't he ever sit still?!”).
No one gets to adopt without showing they have a robust support network of family and friends, and quite rightly so, as I have really had to depend on those closest to me over the last twelve months. I have been really impressed how most people have accepted Danny for who he is, rather than focusing on the conditions he has. I have been deeply touched by the kind gestures of people; at my church, a lady who I really didn't know that well has several times just given me toys for Danny, things she saw that she thought he might like. Friends have offered me both practical support, like looking after Danny so I can get my hair cut, and emotional support, when I have needed to cry or moan about the difficult times. However, some people’s reactions have left me confused, angry or bemused. Here is a selection of comments, with the responses I would like to have given if the words would have come to me quicker at the time (in reality I am usually left silent, mouth open, like a codfish!):
“A dwarf - what, like you see in a circus?” - Um, yes and in many other walks of life, as it is not just for your entertainment.
“He doesn't look like he has dwarfism” - Well, I don't know what to tell you but he has, and no it is not a problem.
“You are so brave” - Now the word brave conjures up for me images of soldiers fighting or people struggling through major illness. It doesn't sit well with me and my reality of loving Danny, spending too much time watching the likes of "Hey Duggee"!
“Do you think you will take another one?” - Another one? Do you mean am I likely to adopt again? I don't know, and I don't know whether I would have another child with additional needs like Danny, I can only hope that if I did adopt again I would be blessed with a child as amazing as he is.
“Did his Mum and Dad not want him?” - (This one gets me each time, as it is a very private thing but one that many people think they can ask). Actually almost 99% of children waiting for adoption were not “given up” by birth parents, they were taken away due to safety and risks to the child. Danny was very much wanted and loved by his birth family, it just wasn't safe for him to stay with them and they realised they couldn't provide for him properly.
As a breath of fresh air my friends’ and relatives’ children have embraced Danny in a way I could only have hoped for. They have all asked questions, interestingly more about his adoption than his dwarfism. Here is a small selection of their questions:
“Why is Danny with you and not his original Mummy and Daddy?" - This one is hard to explain to small children and is often more about their disbelief that anything could separate them from their own parents. I have found using phrases such as "they couldn't keep him safe" are best without having to give much detail.
"Why has Danny not got a daddy? I think you should find him one." - I loved this, as if I could pick one up from the local shop! After explaining that I am like mummy and daddy to Danny, my friend's son said this: "I think Danny is going to need a friend, I will be his friend because it is like he is my brother already isn't it.". I literally had to hold back the tears as I hugged him and thanked him for being so lovely.
“Will he always be that short?” - No, he will grow, he is growing all the time, he just has shorter arms and legs.
“Why has he got extra bits on his legs?” - This one really made me laugh! Not many children have seen Danny's extra creases and rolls on the top of his legs, but it is summer and he was in a paddling pool! My response was to explain that although Danny's bones are short, his muscles and skin is not, so it bunches up, causing his rather delightful chunky thighs. The children's response to this was to ask "But his tummy is the same size as ours isn't it?" Obviously the concern here was about food, and I am sure they would have been relieved if they had got to see how much Danny can eat!
Twelve months seems to have flown by and yet at the same time it is hard to remember life before Danny. I have had the joy of experiencing lots of milestones; when he ate solids for the first time (my homemade pancakes which have remained a favourite - he ate four this morning!), sitting up unaided, walking, signing the word “yes”. I look forward to what the next twelve months might bring. I know that everyone's experiences of adoption and children with additional needs is different, but I can honestly say I would not have my life different in any way. And if you are reading this and thinking about adoption, or have just been told your child has dwarfism, please believe me when I say the future ahead may be challenging, but it is worth it.
*Name changed to protect identity