18Q Minus Social Interaction
Updated: Jul 15
I was asked by a lovely member of our 18q family if I could write a blog about Poppy and her social interaction. Social interaction is an exchange between two or more people including how we act and react to those around us. A child’s social development is a process in which the child learns to interact with others around them. This interaction helps them to make friends, deal with disagreements, interact successfully, all of which are very important.
Poppy is classed as globally delayed meaning because of the 18q minus syndrome she is delayed in all areas of development. Like every six year old though Poppy’s social development is always developing. For the first three years Poppy worked really hard on her physical development learning how to sit, crawl, stand and walk. She had to concentrate so hard on developing her physical strengths that language wasn’t a priority. Imagine finally mastering your physical development but then realising you were in a world where everyone was speaking a foreign language. A world where your native language is a struggle to listen to, process, understand and speak. A world where you didn’t know what language was for and when you finally understood the purpose through Makaton your fellow family and friends around you don’t understand the signs. Poppy was now in a world where the only person who understood her wants and needs was me, her Mummy.
Would you be sociable if you didn’t feel understood ? There were and still are many obstacles that Poppy had to begin to overcome and these obstacles were another barrier to her social development. These include Poppy’s hearing, her ability to understand language and process it, the clarity of Poppy’s spoken words, catching up with her social development, plus feeling safe. Feeling safe seems a strange one doesn’t it! What I mean by feeling safe is physically safe. Poppy is still unsteady on her feet and a little knock by a child can send her flying. Poppy also hates touch if she hasn’t instigated it. So when Poppy is around her peers and family what is she concentrating on? It isn’t socialising and playing, its making sure she is safe. This is internally built inside us all and we know it as anxiety, anxiety is there to make sure we stay alive and alert. Anxiety in children can cause them to go into a fight, flight or freeze mode, Poppy freezes. I’m not going to go into detail on the obstacles as each individual one is a blog in itself but please let me know if you would like more information and I will add them to my blog list. I thought for this, I would focus on how I have helped Poppy with her social skills.
62% of children with 18q minus syndrome will also be on the autistic spectrum. Poppy has not been diagnosed with autism but I haven’t asked for an assessment either. It is pretty clear that Poppy is on the spectrum and I don’t need a diagnosis to confirm this as its very common for everything to fall under one diagnosis, 18q minus syndrome. The reason why I’m mentioning this is because children on the spectrum find social situations difficult. Being on the spectrum will often mean that trying to understand what others mean and how to behave can be mind boggling, very stressful and exhausting. The National Autistic Society have a fantastic website in which they provide information on social interaction, teaching social skills and practical ideas for developing social skills at home.
Diversity and acceptance is a huge concept for children, but should it be ? The more WE make children comfortable with diverse people they will automatically gain a mutual acceptance. Children will no longer think of themselves as different from the next child but feel more connected with their friends and become more accepting of differences. Acceptance is all any child would like and its a big part of being able to be sociable. Poppy will tend to be more sociable with older children as they accept and embrace Poppy for who she is. Older children will tend to be more aware of her abilities and therefore Poppy feels safe. Communication can still be very limited from Poppy through the feeling of not being understood. Her body language is however very sociable, she will join in playing their games and will often be found laughing.
Poppy and her peers have a slightly different relationship. It’s not that her peers don’t accept her it is more of a case that they are unsure on what Poppy requires in order for a two way social experience to happen. Modelling language and social interaction is paramount. This is something I continue to do in every environment. I am Poppy’s role model, I am Poppy’s support in social experiences, I am Poppy’s interpreter. I work at her level of development and not her expected developmental level for her age. Due to Poppy’s processing difficulties any language spoken will have to be slow and clear as well as giving her extra time to process this language and acknowledge what is being asked of her in order to reply. If you speak too quickly and use too many words Poppy will switch off and not engage with you. It’s the same as someone speaking to you in a foreign language where you may know a few keywords but they are speaking so quickly you feel lost.
From a very young age I have always engaged Poppy in social day to day experiences. These social experiences, to start with, would always start with me engaging them. If we were shopping I would pick Poppy up out of her pram and let her walk around or I would carry her so she could pick something she would like. I’ve always allowed for Poppy to make her own choices, just because she wasn’t able to speak doesn’t mean she is unable to think. I would guide her to the till and then encourage Poppy to interact with the cashier by modelling please and thank you alongside Makaton. She would also pay for her item and take any change. Now Poppy is quite happy to interact with the shop attendants without encouragement but I still support her language and relay any conversation back to her using fewer words if required. It is also very important to know that if the child is feeling anxious, maybe the environment is too loud, you may not get any interaction. I also find with Poppy that if we are in a busy environment she may not always know that a conversation is directed at her so I will always bend down to Poppy’s level and use the look sign guiding Poppy’s eye contact to the person in question. The more social experiences and opportunities I provided for her, the more independent Poppy became. Poppy’s confidence grew as she felt more understood.
Picture cards were another communication aid I used with Poppy. I bought an instant camera and we took pictures of her favourite toys and food. Through these pictures Poppy learnt how to be social by learning to understand that she would have to engage with us, by showing us a picture of the item she would like.
Poppy is very sociable now with people she is comfortable with and with the people she feels who are able to understand her well. Poppy will greet the Tesco delivery driver and thank him, She will instigate play with both her siblings and cousins which is often hide and seek. I’m not afraid to start conversations with children who are looking at Poppy in her wheelchair. I will ask Poppy to show them her flashing lights on her wheels and say hello. I suppose for me there is a big difference between choosing to be mute or wanting to be understood and I feel Poppy wants to be understood.
If anyone is reading this blog for advice my advice would be to model and support communication in social situations. Provide plenty of opportunities for this to happen, in a shop, at the post office and don’t be afraid of engaging in conversation for your child to join in with. Be sure to work at their level of development, allow them to make choices and make them feel in control.
If you had asked me about 18q when Poppy was diagnosed I wouldn’t of been able to tell you if she would be able to walk, talk, make choices, play, ask questions, the future was just unknown. Development in all areas will take a little longer but we are getting there, Poppy is achieving goals I could only dream of. Every child is different and each child may respond differently to different techniques. You are the expert on your child and by helping others to learn how to interact with your little one is really beneficial to all.
Whilst writing this blog Poppy popped her head over my shoulder and asked me “What are you writing mummy?” “Are you writing about Poppy?” and pointed to her name in the text. I replied “Yes! I’m writing about Poppy, would you like to type your name?” She replied, “Yes please, Mummy.”
Poppy is my name.