Benefits to Siblings

When my little Beth was born, I was so worried about the affect her disability would have on her older sister.  I could only think of the negative impact that there could be.  There was so much that was unknown to me, and it was all very overwhelming and frightening.

I can honestly say that Beth has been the most amazing gift to our family, and especially to her big sister Poppy.  There is not a sister in the world that could love Beth as much as she does, she is her protector, her comedian, her cheerer upper, her hugger, her best friend.

But what about the benefits to Poppy?  Well I am happy to say that I believe there are many.  From a very early age we have been doing therapies with Beth, we have taught Beth to read, to do mathematics, to crawl and creep in appropriate cross pattern.  All the time Poppy has been there learning and helping too.

Poppy was never interested in doing the reading programme that we did with Beth, and we respected that.  But she still observed on occasion and she flew through her first year at school with her reading skills, and we believe she absorbed an awful lot, just by having it surround her.

We had taught Poppy to swim from a very young age, but she was always fearful and unhappy about it.  Because of Beth we made contact with the AIAHP, and were blessed to have private swimming lessons with Claire Timmermans who helped to develop the swimming program with the IAHP, Claire taught us how to give Poppy confidence, and that children will learn with love and nurturing - parents are the best teachers.  We stopped her lessons and went swimming as a family.  Poppy's confidence grew and grew and she is now an amazing swimmer, swimming length after length, and I am pretty proud of her, being only 7.

When Beth was very young we purchased a brachiation ladder from Naturally Better Kids, and Poppy used it constantly, we now also have a trapeze which is in constant use as well!  Poppy is now an amazing gymnast, and we could not be more proud of her.  She has only been in formal lessons for a year but the change in her is incredible!

Beth has taught her patience (most of the time...), compassion, and taught all of us how to celebrate the small stuff.  

We now have a new addition to the family.  Eleanor Rose was born last year and has settled in wonderfully to our little unit.  She is much adored and loved by her sisters, and Poppy is just the most wonderful second Mum to Ellie, she is just adorable with her.  I feel truly blessed to have my three little girls.

A guilty little post from me......

It has been a week of ups and downs here.  At Beth's last speech therapy appointment I queried whether she felt that Beth might have Speech Apraxia.  Beth struggles to form new words and when she learns a new word can forget it just as easily.  She will say the same word in many different ways, there is little consistency.  (Apart from the word NO!)  I have been suffering from a great deal of guilt and have felt very stressed about it.  The last year  with being pregnant and dealing with a little baby have made her therapy take a back seat and that is time I will never get back.  I am trying my best to make up for it now.

Beth is starting on a new journey with her diet.  She has always been gluten, dairy, soy and corn free. For 2 years she was also failsafe, but we never quite got to the bottom of her digestive issues.  We have now started her on an alkaline paleo (low fodmaps) diet.  What a difference it has already made.  She used to be a bit of a farter if I am honest! But no more!  I think she may be fructose intolerant, but we shall test this further down our journey.   I have been making sauerkraut and kombucha, and have some water kefir grains to get started with too. She is now having lots of bone broths, and she loves it, which is just wonderful. How I wish her elder sister would embrace the new as easily......

As well as her new diet we are also starting her on Therapeutic Listening. She started last Thursday.  We have already seen some changes in her, and are delighted!  As often as possible we try to get Beth to walk 1.6km (a mile) a day.  Well since starting on this therapy she has had much more energy and enthusiasm with her walking (or rather she prefers to run). Her pronunciation on her favoured words has increased clarity.  Her role play based games have become more complex, she set up a beautiful tea party for her teddys on Sunday, we were amazed.  Basically, she has become more switched on.  Sadly her sleep has worsened though, but this is a small price to pay, and hopefully will calm down with time.

We have also been trying to encourage Beth to brachiate, to help strengthen her upper body and lungs. She is not very keen on our brachiation ladder, her sister (Poppy 6) on the other hand is a monkey on them. But she loves the trapeze!  It has been amazing for both of them to be honest, and there are regular disagreements in the house over their "shared" usage!

So the basic point of this post is to say,  I am riddled with Mama guilt, but I am trying really hard to move her forward. She is resisting therapy a little though, and little miss stubborn 3 year old is harder to persuade to do things than little miss 2 year old.  I have a bit of a battle on my hands, but I will try my best.

This journey isn't always easy or fun.  I love my Beth, but I wish everything wasn't so hard for her.    I want so much for her to go to mainstream school with her sisters, I want her to have a job, fall in love, to be happy.  I know it is down to myself and Mark to get her there.  I have to work harder!  If money grew on trees, I would be flying to America to the IAHP, and doing every health/gut related test possible but sadly that just isn't possible, I can only do what I can do.

The path of choosing to do natural therapies with your child is exciting, and very rewarding, but also very guilt inducing.  The latest suggested diagnosis of speech apraxia has hit me very hard.  What can she do if she can't find her voice?  There is so very much to do.

My babywearing journey with Beth, my darling daughter with Down syndrome.

On the 22^nd of December 2009, my daughter Elizabeth Grace was born.  It was a fast labour, and before I knew it, there she was in my arms.  I spent the night in hospital looking at my little one, she was chubby and very calm and quiet.  I could not take my eyes off her.  For a brief moment I looked at her and thought maybe?, but pushed it to the back of my mind, because that was impossible right? and no one has said anything to me. 

(Please ignore sub-optimal head positioning in photo, this was when she was 2 days old!)

The following morning, a paediatrician came in and told us in the most tactless way possible that our little girl had Down syndrome.  They would run blood tests but she was certain she had it, so gave us her card to make an appointment.  We were devastated.  My husband and I knew nothing of Down syndrome really, and went into shock.  For the rest of the day my door kept opening with visits from Social Workers, lactation consultants, midwives, other paediatricians – some just to take a good look at her “for training purposes”, my daughter was wheeled away for a heart scan (we asked to come but were told we would just be in the way).  I just spent the day in tears.  Fortunately the heart scan showed nothing majorly wrong so they let us go home on Christmas Eve, I was desperate to leave.

I placed my precious bundle in a beautiful purple waves ringsling and held her close.  I was out of there!!

The following few weeks were hard, she was very sleepy and struggled to breastfeed.   We spent many days in bed together desperately trying to get her to feed enough, I am happy to say we got there in the end though, and I fed her until just before she turned 3.  But the one thing I could do that felt normal and easy was to carry her, so I did so as often as possible, to hold her close, and to help me to bond with her more closely and to feel that it didn’t really matter.  She was my baby, she craved love and warmth just like any other child, and carrying her was the completely natural thing to do.

I was very lucky that Beth was my second baby. I had previously carried my elder daughter Poppy since birth so was pretty confident in using different types of carriers.  However, this was a new learning curve for me!  As well as her diagnosis of Down syndrome, Beth had also been diagnosed with Hip dysplasia.  Fortunately through a UK based forum I had become friends with someone who had done Trageschule training – and in doing so she had learned about wearing children with special needs.  She was a great support to me, and helped me very quickly to gain the confidence to carry my little Beth comfortably, safely, and with ease.  

 

 

There are a few things that you have to be careful with when wearing a child with Down syndrome.  The key concerns are hip dysplasia and joint laxity.

 

In this image you can see the thighs are well supported to the knee joint.  Therefore forces on the hip joint are minimal because the legs are spread and supported, and the hip is more stable.

Thigh NOT supported to the knee joint. The resulting forces on the hip joint may contribute to hip dysplasia. - See more at: http://www.hipdysplasia.org/developmental-dysplasia-of-the-hip/prevention/baby-carriers-seats-and-other-equipment/#sthash.kjuUwo5z.dpuf

Thigh NOT supported to the knee joint. The resulting forces on the hip joint may contribute to hip dysplasia. - See more at: http://www.hipdysplasia.org/developmental-dysplasia-of-the-hip/prevention/baby-carriers-seats-and-other-equipment/#sthash.kjuUwo5z.dpuf

In this image, the thigh is not supported to the knee joint. This may result in hip dysplasia, and is certainly not recommended for children with Down syndrome, or hypermobility.

Thigh NOT supported to the knee joint. The resulting forces on the hip joint may contribute to hip dysplasia. - See more at: http://www.hipdysplasia.org/developmental-dysplasia-of-the-hip/prevention/baby-carriers-seats-and-other-equipment/#sthash.kjuUwo5z.dpuf

 

 

Babies and children with Down syndrome are more prone to having hip dislocation issues therefore it is very important that the hips are held at the correct angle, and the wearer must be very careful to ensure that there is no pressure placed upon the hip sockets.

As well as this, people with Down syndrome can have lax joints, which leads to a tendency to splay their legs wide, and it is important not to use carriers that encourage this by forcing the legs to splay wider than is natural for them to do. 

According to the International Hip Dysplasia Institute, baby carriers that force the legs together may result in hip dysplasia

 

 

 

Carry positions should support the thigh in a knee to knee position, to keep the hips in a stable position.









I have spoken to some Mothers who were advised to keep the legs together to avoid this issue, but personally I disagree with this because it opposes my own research of hip dysplasia.

 

What carriers to choose

 

I decided against using ringslings, as at the time I was not confident in using them and they weren’t optimal for her hips, unless carefully positioned.   I needed to get the hips out to the side in the way that bulky cloth nappies do, but not in a way that put any pressure at all on the hip or knee sockets.

My friend advised me that a hip carry would be great as the child’s legs would spread naturally over my hips and they would be placed at a safe distance apart.  I however decided against this as I had a fear of bumping into things as I was going about my duties in the house.  In the early days I did not leave the house at all really, it took me a long time to feel confident to go out with her, I was scared I would see someone I knew and would have to tell them.  For the first few months I was unable to talk about it to new people without crying, it was easier to hide at home.

I decided instead to wrap her using the front wrap cross carry.  I was concerned about using a wrap that was too thick and hard to mould safely around her without creating any pressure points, or cause any strain on her hip joints. My saviour was my calin bleu gauze wrap.  It was wonderfully thin and easy to mould around her.  I also used other thinner woven wraps as my confidence increased.  The didymos stripe wraps and pfau were also very good in the early days.  There are many good options on the market though, these days we are truly spoilt for choice!.

I was however warned away from stretchy wraps as I was advised they don’t provide enough support for babies with low tone, but I know of many mothers with children with Down syndrome who have happily used them.  Personally I go with the expert opinion on this one and would advise caution.  It really depends on the muscle tone of the individual child.  This can vary greatly in children with Down syndrome.

By 6 months the worry about Beth’s hips passed.  She had several hip scans and eventually the problems righted themselves with no treatments necessary.  By this time I was confident with all carriers and all carries.  Beth sat up at 5 ½ months which is rare in a child with Down syndrome.  She seemed so strong and all my previous worries simply disappeared.

 

 

 

 

In summary, my research has concluded that these are the best carriers that can be chosen for children with low tone / hypermobility issues:

·      Woven wraps

o   As mentioned they are great as long as you are very careful with hip positioning and ensure that they are placed firmly along the back to provide good neck support for the baby.  I especially loved thinner wraps in the early days, such as girasols, and cotton didymos wraps, as well as of course my beloved Calin Bleu.

·      Mei Tais / soft structured carriers

o   On the market and easily available today are mei tais with adjustable bases, (such as the Mysol) meaning that their use would not put any pressure on hips.  Soft structured carriers such as the ergo come with infant inserts which I am advised are suitable for children with Down syndrome.

I need to emphasise that every child with Down syndrome is different though, Beth was very lucky that her low tone issues were not as severe as with others, and she had no health concerns.

 

What are the benefits of Babywearing?

I spoke to a a lovely lady I know  in Queensland who has a 9 month old little girl named Josee with Down syndrome.  I asked her what she thought.  She told me “I love that she can be with me and feel secure. But I think it goes both ways. I think carrying her has melted my anxiety away! I too feel a sense of security when carrying her. I like that we can interact and she can see the world with me, at eye level. I feel that it has impacted positively on her muscle tone and strength and that her core muscle stability has improved. When she was younger I could tuck her head into one of the shoulder folds to support it and now she loves to tuck it in there when she wants to nap. Also, speaking of naps, she is the Queen cat napper so carrying her allows her to nap on the go and stops the grizzles when she hasn't slept enough!”

For me personally, wearing Beth helped me to bond with her enormously.  It was very hard for us when she was born, we had to completely change our mindset about what we thought our baby was going to be like and we had to learn a whole new way of life in order to be support her needs.  My life took on a new role of constant research into the best ways to help her to achieve her milestones.  We spent pretty much all of her waking hours doing therapies.  But the times when she slept she slept on me, and with me at night.  I grew a love for her that I never thought possible.  She is quite simply a wonderful child, funny and sweet and fills our hearts with joy.  She is also a stubborn little thing!!

Beth will be four in December.  She still loves to be carried, we mainly use our Boba SSC with her.  “up up up” she says.  Although these days we try to encourage walking as much as possible to get her fit and strong!  I have thoroughly enjoyed my babywearing journey with Beth and I wouldn’t change a thing.













****UPDATE 22/2/2014****
I was recently contacted by a lovely Mama with a 9 month old little girl with Down syndrome. Her physio had suggested to her that perhaps her Tula Baby Carrier was not optimal for her child as she was in her words "like a sack of potatoes" in it.  She recommended that this Mama purchase a Hipseat.  I must confess this was not something that I had really considered, so was a little stumped.  I therefore consulted with my favourite babywearing guru Anne McEwan of Wrap My Baby for advice.  This is what she said: 

I agree in part with his reasoning, core strength simply does not develop as well in a MT or SSC ( it is one of the arguments behind the stirrups for the Boba) nor are they are adjustable. I would personally prefer a ringsling or a wrap tied with an adjustable hipcarry as that helps better with the hip position, give a hands free option and allows for more flexibility. It is also more comfortable for the parent (than a Hipseat) in my opinion.
Something else she may want to consider is whether baby likes to have her feet supported to give her more movement and help her build stronger core muscles.

Readers please note, I am sharing this information as it is completely new to me, and I feel it would be remiss of me not too.  Every child is different individual and unique, and has different needs that you are parents will need to consider.  As I wrote above I was advised that hip carries were a good option for Beth when she was a baby, but they weren't something I was comfortable with using as my preferred option.   We actually used a Boba Carrier with Beth (you can see it in the photos - the grey carrier) and found it wonderful and supportive, great with babies and toddlers as well.

I would also recommend before purchasing a carrier that you visit one of the many slingmeets that seem to be held globally!  Within Australia, you can find one via this link: Sling Meets Australia.