Drinking Cups that help children with Downs Syndrome

Drinking cups

This is an interesting subject, not a huge subject but still it’s a learning curve about DS. Babies with DS find it hard to suck due to their hypertonia so being Brest fed is quite unusual, as you may know from last year’s blog Lani was tube fed in hospital for the first 8 days – I did try and Brest feed but after 2 weeks it just wasn’t working so she was put on a bottle. The bottles had special teats and cost a fortune but that was all she could use, even as Lani grew up she could not co-ordinate her hands properly on how to hold a bottle she has always needed two handles so for a long long time I had to hold the bottle for her but now Lani has moved onto drinking from big girl bottles and we have struggled so much trying to find ones that work for her. They up until a few months ago needed the handles (which if you look at the selection available is very limited) she needed and still does need one which has to be non-drip but is not too hard to suck as Lani just doesn’t have the power to get the drink out. We now have a selection of 4 cups that we rotate

We have a two handled green beaker with a normal teat (it does drip everywhere and we need to keep an eye on that one as Lani likes to press down on it and then splash the drink everywhere!!) this one is very easy to suck from, this beaker teaches Lani to put her tong at the front of her mouth and so gives specific muscles in her mouth a good work out which will in turn help her speech. 

We also have a beaker with a straw which is non-drip and this is brilliant for Lanis mouth to learn a sucking movement which again is another mouth work out, this beaker has no handles and so she used to struggle quite a bit, she will quite often forget to hold it with the palms of her hand and she will hold it with the backs of her wrists, I have to place her hands correctly every time to show her and remind her, also another consideration for her when she uses this beaker is that you don’t tip it up to get more juice, in fact if you tip it up the juice can’t get into the straw so she had a big learning curve on that one but what a great skill to have achieved. 

Her third cup is called a 360’ it’s worth googling a picture of one, they are brilliant and a good way to introduce her to drinking from an adult cup. This one uses her lips more and an sipping motion keeping her toung down and back in her mouth again another skill and work out for her mouth. 

Lastly my lovely friend Louise brought her a cup just the same as her sons and it’s a beaker with no handles (yes she can struggle a bit, mostly when she is tired and I have to re-place her hands, but not often now) and a solid mouth piece which is non-drip, again a whole different set of mouth muscles to get a drink from but she does it and is successful. Every single thing I do with Lani is thinking about how I can get the best out of her, get her to work even when it’s a normal activity, all of these mouth skills can only bode well for her future speech, its got to be worth a go. 

Diary

Firstly I would like to apologies for not having blogged since last Thursday, late Thursday evening my husband’s step mum passed away and so we have been trying as a family to cope with such sad news. Over the next week or so I cannot say how often I will blog it will all depend on how I feel, at the moment I have lost my mojo.

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.

Down Syndrome means Lanis ears don’t work too good

Down Syndrome means Lanis ears don’t work too good

This is a huge subject so I will try and give you as much info as I can but like always I am only ever talking about Lani and our experience, every child with Downs Syndrome is different. 

Last year we knew Lani had hearing issues and she was seeing Audiology getting test done, everyone agreed that she needed to try hearing aids. At one of the appointments they squeezed blue gunk into her ears and let it set to make the mould, they were to be sent off and we needed to pop back in a week later to collect the hearing aids and to be shown how to fit them. They did true to their word show me how to fit them into Lanis ears and it was a dream, they slipped in and she didn’t cause me any trouble. This lasted exactly the whole of the appointment, and then the battle commenced…. Lani vs hearing aids, she hated them and every time we tried to put them in she pulled them right back out (usually before even the second one was fully in). We were given toupee tape to try and keep them on but she just ripped them off leaving the backs of her ears sore.

We had a lady come out to us from “Hearing for the Deaf” to help us to deal with Lani and try and get her used to wearing the aids, even she could not get them fitted into Lanis ears as like I have said before she is the most wriggly kid ever. We tried and tried for months on end and it was starting to become an ordeal not only for Lani but for Lee and I, Lani started to develop a head phobia as I had been putting up her hair so it would not get on the tape and make it less sticky and soon every time I went to touch her head or hair she would panic, pull away, cry and even scream so that was that we gave up on the hearing aids. Oh I forgot to say on the odd occasion that we did get them in and she tolerated them she became very clingy and would not leave my side, she had a look of utter fear about her and the only thing it could have been was new noises that scared her.

What next? Well we tried a Baha Band which is like an Alice band with the fitting for a cochlear hearing aid so it sits on the bone behind her ears but is not fitted into the skull. Lani still had her head phobia and so this was also a disaster and she just pulled it off consonantly – worth a try but no good.

We got an appointment to see a ENT consultant who is prepared to give Lani grommets – an operation is a last resort and is not an easy option. The reason for this is so many people need to be consulted to make sure it’s the right thing to do, our heart specialist hospital which Lani is under needed to be heavily involved as there was a question as to whether her heart would be strong enough for an operation to take place. Also a sleep study needed to happen to see if Lani had sleep apnoea because if she had they would have during the operation taken out her adenoids and tonsils. The study was done and results came back as “normal” – very pleased.  I will do a post soon on sleep apnoea and why they thought Lani had it / what it is and how on earth they tested her. 

So where we stand at the moment is we are waiting for Lani to have her funding for the operation agreed by a board!! This will take a month from when they receive the paper work which needs to be submitted by our consultant. Then once the funding is in place she will go onto a waiting list and get a date for the operation.  The process so far from our first appointment with the ENT consultant has taken 6 months,that as Lanis mum upsets me as she has lost 6 months’ worth of hearing / speech development and at such a crucial point in her life. Her speech is way behind and that 6 months is up until now, we still have the paper work process / funding agreed and waiting list time, this is driving me crazy. How can I hurry up the process????? HELP. 

Diary

Busy busy day, we were up at 7am (Lani was up a LOT earlier but 7 is when we got up) had breakfast, wash, hair, teeth, dress, out the door. We drove to Tidworth it takes about 45 minutes, met my friend Becky for 5 minutes and arranged lunch, went into Mark Fell Photography who is Lanis official photographer and has taken some phenomenal pictures of her – I booked her in for a Christmas shoot and picked up our Halloween pictures. Then went to a specialist paint shop to collect some paint for my lovely husbands Lambretta, made my way to Lanis old special school for a goodbye visit (we moved out of area during the summer holidays so didn’t get a chance to say goodbye ). It was lovely to see Lanis best friend and swap numbers with her mum so we can stay in contact, then off to Lee’s old work place to say hello and collect a few things, then back to Tidworth to meet my friend for lunch, then round to my friend Louise’s house to see her and her 2 lovely boys (I miss my friend louise, it was always lovely to be able to pop in and see her, its strange living this far away). What a day, now we are home, fed and ready for bed.

The equipment that children with Downs Syndrome need

Lanis specialist equipment that improves her life

In my post yesterday I had said that we were in hospital seeing Lanis OT (Occupational Therapist), rather than telling you what we were up to yesterday first I should start from the beginning of our appointments. In about April of this year Lani had some requirements for specialist equipment – namely a high chair, sitting chair, table, foot stool, potty, school chair and a bath chair. Wow that’s a lot of stuff, I will explain each one in more detail…….

High Chair – so like all kids we like Lani to be up at the table while we eat our food so she can learn how to eat, socialise, talk and all of the other essential life skills that are learnt at a dinner table. We always eat up to the table and never even scoff a piece of toast while watching the TV sitting on the sofa, Lee and I made a choice to do this to help Lanis skills. Sorry I was moving off subject, yes highchair right she was in a regular highchair which was not appropriate for her. Lani has hypertonia and in her regular highchair her posture was awful, she could get both of her legs up and onto the tray and she could also wriggle out of the straps. We needed help so our OT supplied us with a Breezy chair (Google them they are really cool) they fit a little child like Lani right up to an adult so all the time she needs this it will grow with her. The chair has a back rest, foot rest, tray and Velcro lap strap, this high chair worked brilliantly and in the main still does however Lani is a cleaver little girl and learnt how to undo the lap strap. This came to light when one day I took out our plates and on my return Lani had undone the lap strap and was standing on the highchair tray!! Major heart attack on my part and that was that I then couldn’t leave her even for a second without taking her out of the chair, putting her in a safe area and then popping out to the kitchen. One urgent call to our OT then next day and a new clip lap strap was winging its way to our home. This worked wonders until about a month and a half ago again I had left Lani alone in her chair while I took out the plates into the kitchen and blow me down Lani walked into the kitchen. How on this earth did she get out of her chair it was supposed to be safe!! Her strap was still done up so she must have wriggled out, again our OT was right on the ball and arranged for me to meet the Breezy chair specialist which is who I met today. We explored 3 ways to keep her safe in the chair, firstly a chest strap which was a huge wide piece of Velcro – that wouldn’t have worked it was Velcro so I wouldn’t risk that again. Secondly there was a vest with a zip up the front that attached to the chair but no that didn’t feel right it looked too heavy and cumbersome, the third option (the one we have chosen) is made out of wet suit material and is like the body harness then goes on walking rains plus we will keep the lap strap. Lets hope this works. 

Sitting chair and table and foot stool – we needed this as Lani only had two options the floor or her Breezy and for her to sit to a table and draw / read / play / stick things is essential learning, this was recommended by our physio but unfortunately we were not able to get this specialist equipment for Lani as the NHS will only fund one chair – the breezy. So we sourced the chair and table ourselves but our OT was able to help us with the foot stool. Lani now daily sits to her table and puts crayon to paper and reads etc. so its worth the investment. 

Potty – When Lani gets bigger she may need a special potty chair but that has been discussed and its all in place if required, at the moment Lani has a really nice potty with a lid and arm rests, this suits her down to the ground at the moment. 

School Chair – Lani is hopefully off to school soon and our OT will provide her with a specialist chair as we have to remember about Lanis hypertonia and the extra physical support she needs compared to a child without Downs. 

Bath Chair – Its only been in this last year that Lani has bathed on her own, what I hear you cry “on her own” what I mean is in the bath on her own as before I have always been in with her to hold and support her so it was a two man job to bath Lani, Lee always used to wash her hair and condition it while I had the job of keeping her safe in the water. We discussed this with our OT and he suggested a baby bath chair which had a solid plastic ring around the top so she could not escape / slip out, we brought one and it was great but she has now grown out of this and most children would be safe to sit alone in the bath but not Lani so we now have a specialist seat with suckers, a bolster to go in between her little legs and the dreaded Velcro. I am not worried about the Velcro and her escaping as when it comes to bathing I would not leave Lani alone even for a second so I would be there to supervise every situation. Lani loves the bath, she is very into splashing hands and feet, she has more bath toys than “Toys R Us” and even has a bath mirror with she kissed lots. 

I am on such a huge learning curve at the moment again like yesterday if anyone out there knows of anything other children with DS have to improve their lives that I have not talked about today please let me know so we are able to consider it for our little girl, thank you. 

Diary

Today Lani and I have been to a close family friends funeral, its been a tuff day for all. During the service Lani was a dream little girl, hardly a noise out of her, silent at critical times, what a good little girl she is. Please spare a thought today for my dear friends Sue, Claire and Russ who are starting the long journey of rebuilding there life’s without their husband / dad, I can’t even imagine how hard that must me.

Potty training a child with Downs Syndrome

Potty Training a Child with Downs Syndrome

If you read last year’s blogs I did a whole blog on her pooping!! Yuck!! But it’s very interesting as Lani has always struggled and suffered from constipation which is normal for children with DS. From my understanding it’s because of Lani having Hypertonia (low muscle tone) and her internal organs cannot move the poop along and out without a real struggle. This is still the case for Lani, it has got slightly better and she will now go every other day or so, but Lani can still have a really tuff time going. 

From when Lani was a dinky little girl I have always said “good girl Lani your having a poo” and then showed her the results of her efforts and said “look Lani it’s a poo” and signed poo. What is the sign for poo???? Well in Makaton which is what we are teaching Lani they only sign for toilet so having watched “Meet the Fockers” we have taught Lani to pull her thumb for poo and sign “toilet” for wee.  We have also always told Lani she is having a wee when we have felt it happening in her nappy and also if when we change her and she goes we again say “Lani your having a wee, good girl”, I also have had a potty in the front room for about a year and showed her teddies sat on it and told her that teddy is having a wee on the potty. My next step was to sit lani on the potty every day and ask her if she needs a wee or poo, this was always done during nappy free time and the amount of times she will sit on the potty – get off and then pee all over my floor!! But even then I never told her off I just re-iterated “oh Lani you’re doing a wee, good girl”. Now the potty is kept in her bathroom and every time we change her nappy she sits on the potty and has a wee while we sign “wee” to her. The other day Lee had a break through and when Lani didn’t get up after her wee she signed poo and carried on sitting down then….. yep you guessed it – she did a poo all by herself on the potty. I cried I was so happy, it may not happen again for ages but that’s ok its happened – so chuffed.  I imagine most mums take for granted that their kids go for a poop on their own but not me, everything Lani does is an effort and an achievement and we celebrate. I am very proud of Lani.

So what is the next step? I am not too sure to be honest, she understands what having a wee and poop is but how do I now get her to sign when she wants to go?? One of my worries is that what if she does sign it and I miss seeing the sign and so she goes for a wee, if I miss the sign when she first starts to do it would she give up trying to sign?? Maybe I am over thinking this?? Who knows, I just worry a lot.

 I have been told about filling in a time sheet, so every half hour you check her nappy and mark down if it is dry or wet to build a picture of when she has a wee ( I would say she has a wee about 15 mins after a big drink!!) but maybe that is the whole point of the chart, it would confirm this and then I could help her to the potty before its due to happen. If anyone who is reading this has any ideas please let me know, willing to consider / try anything to help her. 

Diary

This morning I took Lani to our local woods and did a photo shoot in a Halloween outfit – pics will be posted at the end of this month on Halloween. Then this afternoon we went off to hospital to visit Lanis OT (occupational therapist) he sorts out all of lanis equipment. I will do tomorrows blog about what equipment Lani uses and how it helps.