Language is hard to learn when you have Downs Syndrome

Children with Downs Syndrome use sign language 

So why does my little Lani need to use sign language? Well Lani has a learning disorder and for her to learn to speak is way tougher than other children without DS, this is because of her hypertonia her mouth / tongue / vocal box is all floppier so to actually form a sound with her tongue, lips etc is hard. 

At nearly 2 years old Lani has only just learnt how to form an “ooo” with her lips and we are working hard on turning that into a noise. Also it’s hard for her to remember how to say words and so she will practice speaking less and without practice the process of language development takes longer. It is essential for people around Lani to talk to her about what they are doing and tell her what she is doing but also to give her a chance to reply back either by sign or noise, I have always talked a lot to Lani and where possible used key sign words to back up my spoken language. I can be known to over sign to her which at her stage of learning is over complex so I quite often need to remember to bring it down a level or two. Consistency plays a huge part in her development; I always sign / speak in the same way as if people who talk / sign to Lani do all different stuff she would become confused and therefore slow her development. Some examples of this that should show how hard it can be for me and other people to help her development in a constructive way – for ages when I signed “Love” to Lani I had taken my lead from someone who I assumed knew and about 6 months down the line someone else showed me how to sign “sorry” they were the same!! So I looked it up on her iPad and yes all the time I had been teaching her wrong and I had to change what I was doing. From a verbal point of view so many people say her name incorrectly when they first meet her and it can take me quite a few goes to help them to say it in a way which is not only correct (believe me, Lee and I know how our daughters name should be said !! we named her, no debate on the subject (though some try!!) lol) but it needs to be consistent for her to learn it, so people who love her and are important get it right, also its lovely when people are kind enough to also sign her name to her as it helps me to reinforce both the sign and verbal language and when people show an interest in communicating with Lani in a way that is new to them it means they must care and that intern means the world to me. 

To bridge the gap and help to reduce frustration through lack of ability to communicate someone came up with Makaton. Makaton is a sign language that is designed for children with disabilities and is easy (ish) to learn, let me give you some examples – if you’re in a pub and you see your mate across the room you would sign “you want a drink” by pointing at them and then moving your hand to your mouth like your holding a glass well in Makaton it’s the same. A lot of the signs are very intuitive so for milk you would sign “milking a cow”. Lani has about 20 signs that she can do (when she wants) and we have taught her these through watching Mr Tumbles a very lot and also via the very expensive Makaton App on her iPad the app cost us £80 and we have only got paid for the basics on there!! However it is so good, not only does it have the sign symbol but it also has a video to show you exactly how to use the sign, you can put your own pictures in so for instance we can show Lani a picture of our car, our home ect that will help her to identify with familiar things and learn all the quicker. 

When your little the world can be a confusing place, Lani has learnt how to sign poo and the other day I was playing “peek a boo” and she misunderstood due to her hearing problems and every time I surprised her she signed poo not boo lol. Also Lani has the same sign for “wash” as she does for “yummy” so we have to see what situation she uses the sign in to figure out just what she means, she also makes up her own signs which only Lee and I know but that is ok for the moment, we always sign the correct sign back to her and eventually she will get it. 

I have been told that as Lani grows up if she gets ill or tired even if she is able to speak and be understood she will revert back to signing so this could well be a life skill we are trying to teach her.

I had a mini crisis in life in the past year with signing in public, usually I am very confident person and not much phases me but signing in public knocked me for 6, I felt like I was drawing attention to Lani and the fact that she is different by signing as people would look to see what I was doing. I became very conscious and perhaps looking back maybe even a little paranoid that everyone was watching me out of the corner of their eye and making judgements on what I was doing and why, I think it was a lack of confidence in my signing skills and also my worry that people may notice Lani has DS. Having talked this over with Lee, family and friends I realised firstly that signing to Lani constantly was very important and much more important than some random person who may or may not be watching, secondly that as Lani grows up she will to a greater or lesser degree look different to other children and her DS will be noticeable and so what everyone is different in their own way, if people see she has DS they will then understand the reasons I sign and if they don’t understand and don’t want to ask me than that is fine too. I became a lot more chilled out about it and now sign as much as I can anywhere any time and I don’t even blink an eye if someone watches us.

As Lanis mum I try in my blogging to help my family and friends understand not only what Lani goes through but also what Lee and I have to think about and deal with, I look into the future far too much but in way it’s essential for me to have an understanding of what could potentially happen and if its negative work now to eliminate / reduce the risk, take some time out to consider Lanis future language – studies show that young adults with DS can live in isolation as they have not been able to develop the skill of language and conversation to a good enough degree that they will be able to have chats to their friends and family about what is happening to them, good or bad, happy or sad. I try to investigate every avenue of Lanis development and potential future and it drives me mad when people say to me “she’s just like any other kid, you’ve got no worries” I imagine most parents don’t have to even consider there child’s future conversational skills, it’s a kind of given that they will speak / chat and express their feelings in a “normal” way and be successful at it. Try walking in my shoes and think about that and your child just for a moment, it’s harder than you can imagine.

Diary

I planned to go to a baby group today but I put Lani in her cot dressed and ready to go while I popped to the loo and in that short time she fell asleep so I decided to not go and let her have rest after such a busy week. At lunchtime we had a health visitor come to our home to help me with some issues Lani is having at the moment which I will go into later in the month, lee came home and we went out house hunting as we plan to buy in this area.