The Softband

This is Asa, rocking his softband bone conductor hearing aid (we tend to just call it a softband for short!). He got it on Monday 12th November 2012. I haven’t been able to write about it until now…

Asa softband

To be honest, it was difficult to accept his hearing loss in the beginning, and then when he had the band fitted last week, I felt physically sick driving to the hospital – in fact I cried most of the way. I prayed that Jon would surprise me by waiting at the hospital for me, that he would be able to get the time away from work. But alas, I was alone with my boy, pretending I was cool as the proverbial cucumber…

I knew I was going to struggle, and I knew I was being silly… However, one week on and we now accept that this is a part of him – at least for a short while until his ears are a little bit bigger to have conventional hearing aids. Hopefully he can have little blue ones in support of Cardiff City FC – his daddy’s favourite team! I’d quite like him to have pink glittery ones, but somehow I don’t think Asa will thank me for that when he’s bigger!

Asa has a moderate bilateral conductive hearing loss. I know, it’s a bit of a mouthful!

–  ‘Bilateral’ means the hearing loss is in both ears. Unilateral would mean a one-sided loss.

–  ‘Moderate’ is self explanatory really; there are four levels of deafness – mild, moderate, severe and profound, each level referring to the lowest decibel a person can hear. The audiologists can tell that at the moment he struggles to hear high pitch quiet sounds, such as: ‘s’, ‘th’, ‘f’, ‘sh’. We think it’s amazing really that they can tell this already!! Praise God for advances in technology and the advancement of science (science and God aren’t in opposition but that’s another topic!).

–  ‘Conductive’ means that nerves seem to be working fine and it is ‘glue ear’ which is stopping the sound waves passing through the ear effectively. The audiologist did a tympanometry test which showed the ear drums were not able to move freely to conduct the sound effectively to the three little bones in the middle ear (the stapes, incus and malleus), which suggests a build up of fluid in the middle ear. Most children with ‘glue ear’ will grow out of it around the age of 6 or 7; however, children with Down’s syndrome tend to grow out of it later and a few never do. People with DS tend to have smaller nasal passageways and Eustachian tubes in the ear, so are more prone to conditions like ‘glue ear’ as well as respiratory illnesses.

Ear diagram

Above is a diagram of the whole ear, taken from www.patient.co.uk. Asa’s ‘glue ear’ is in the middle ear, so between the ear drum and the cochlear. If the softband aid or the behind the ear conventional aids aren’t effective, then other options could include grommets or eventually T-tubes.

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We are praying that even though Asa is only little, that this early hearing intervention will help in developing effective speech in the coming months and years. Only time will tell, so we’re not worrying about it right now… (well, we’re trying to leave it all in God’s hands, but those who know me well will know how much I can worry!). For those of you who wish to join us in praying for Asa’s hearing and speech development, let Jon or I know :-)

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Some info for you on Bone conduction hearing aids, taken from the NHS Choices website:

“Bone conduction hearing aids are recommended for people with conductive hearing loss or for those who can’t wear a more conventional type of hearing aid. Bone conduction hearing aids vibrate in response to the sounds going into the microphone.The part of the hearing aid that vibrates is held against the bone behind the ear (mastoid) by a headband. The vibrations pass through the mastoid bone to the cochlea and are converted into sound in the usual way. They can be very effective but can be painful to wear for long periods.”

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Asa 17 weeks

This photo was taken by Sian Hampson. We adore this baby’s smile!

Looking Back, Looking Up.

I am behind with this blog. I am still catching up from a while ago – I scribble down notes, or make a quick rough draft in Microsoft Word, and finalise it when I can. Part of the problem is that Jon and I can’t decide on a name for the blog! Get your act together Lizz!

[Author’s note: We finally decided on Down With Asa, one of the first we ever thought of! Funny yet frustrating]

Tonight I have been working on the timeline of Asa’s life so far, from the pregnancy through to now. Simultaneously, I have also been working on the pieces of the puzzle that made up the prenatal potential diagnosis of Down Syndrome, through to receiving the confirmation a few days after Asa was born.

As a result, it has been an emotional night reflecting on Asa’s journey through the pregnancy and those early weeks in the Neonatal Unit at UHW. It always happens when I’m working on the blog. Going back over those memories that would prefer to stay hidden in the deep, dark place of my brain.

Tonight I’ve been reliving the moment we found out there was a possible problem and the awful statistics given to us that are forever burned into my heart. 50% chance of a chromosome abnormality, 10% chance of a heart defect (but no chromosome abnormality), 15% chance the baby would not survive (e.g. miscarriage or being stillborn), 25% chance of no complications and a typical, healthy baby. When we were first given these statistics, I saw them every time I closed my eyes, in bright yellow lights. It was awful. Now I am thankful that these memories are fading, and that God comforts us.

“He [God] tends his flock like a shepherd:
He gathers the lambs in his arms
and carries them close to his heart;
he gently leads those that have young.”

~ Isaiah 40 v 11

So while those horrible memories and statistics are at the forefront of my mind again as I work steadily on Asa’s story, we can move forward in the knowledge that both our children are perfect, healthy, and so very precious… Also in the knowledge that we have an awesome God who never, ever leaves us, and who is gently guiding us.

The Knowledge, Presence and Creation of God

Psalm 139 is one of my favourite Psalms. The author, David, writes about the awesome knowledge of God. Not just a worldwide knowledge of everything, but an intimate knowledge of us, His people. It’s an intimate knowledge of us because He is the very One who created us, all of us. We would not be here were it not for the author of life creating us and breathing life in to our being.

David also talks about the awesome presence of God. There is nowhere we can go that God can’t find us, or reach us. Even if we hide under the bed covers in the dark, God knows exactly where we are. I find this fact comforting. That there is always someone who knows where I am; that I’m never lost even when I may feel lost; that my Creator God cares enough to concern Himself with where I am. For a person who doesn’t know and love God, that could be a rather scary thought… That God knows everything about you and where you are at all times!

David also talks about the awesome creation of God. Human beings were the last of creation to be made (see Genesis!). It’s as though we’re the masterpiece of creation, the grand finale perhaps! No single person is ever created by accident. Children who are ‘unplanned’ or ‘surprises’ are planned and created by God. Children who are abandoned at birth or in childhood are wanted and created by God. Those who have a bad experience of an earthy mum or dad were wanted and created by God. Children with disabilities are wanted and created by God too. As I’ve stated many times before in these posts, no one is EVER a ‘mistake’ – how I hate that word in this context. Our two beautiful children, one is developing in a typical manner, the other has Down’s syndrome and will develop perhaps a little slower than his peers, are both created, planned and wanted by us, but ultimately by God. Isn’t that a comfort? It’s almost like they’re on loan from God for us to look after… Children are a blessing.

Sometimes when I’m feeling down, this is one of the Psalms I might read to put things in perspective! The reason I am sharing it today is that I saw a beautiful photo on Facebook… It makes me tear up every time I see it and think about what it actually means. All life is precious. ALL LIFE.
Bump_Psalm139

Psalm 139 (NIV)

1 You have searched me, Lord,
and you know me.
2 You know when I sit and when I rise;
you perceive my thoughts from afar.
3 You discern my going out and my lying down;
you are familiar with all my ways.
4 Before a word is on my tongue
you, Lord, know it completely.
5 You hem me in behind and before,
and you lay your hand upon me.
6 Such knowledge is too wonderful for me,
too lofty for me to attain.

7 Where can I go from your Spirit?
Where can I flee from your presence?
8 If I go up to the heavens, you are there;
if I make my bed in the depths, you are there.
9 If I rise on the wings of the dawn,
if I settle on the far side of the sea,
10 even there your hand will guide me,
your right hand will hold me fast.
11 If I say, “Surely the darkness will hide me
and the light become night around me,”
12 even the darkness will not be dark to you;
the night will shine like the day,
for darkness is as light to you.

13 For you created my inmost being;
you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15 My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.

17 How precious to me are your thoughts,[a] God!
How vast is the sum of them!
18 Were I to count them,
they would outnumber the grains of sand—
when I awake, I am still with you.

If only you, God, would slay the wicked!
Away from me, you who are bloodthirsty!
20 They speak of you with evil intent;
your adversaries misuse your name.
21 Do I not hate those who hate you, Lord,
and abhor those who are in rebellion against you?
22 I have nothing but hatred for them;
I count them my enemies.
23 Search me, God, and know my heart;
test me and know my anxious thoughts.
24 See if there is any offensive way in me,
and lead me in the way everlasting.

Dear M&S

This is the message I wrote on Marks and Spencer’s Facebook page after Seb White, a handsome little 4 year old, was included in the company’s Christmas advertising. Oh, and this little boy just happens to have Down’s Syndrome. He isn’t singled out, or given any special treatment. He is just ‘one of the gang’ – true inclusion at it’s greatest!

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Dear M&S,

I just wanted to say a big thank you from my family, especially my handsome 11 week old son, Asa. For anything in particular? The lovely clothes people have bought for Asa? Yes. The beautiful gifts people have bought us from your company?  Yes. For gift vouchers so my husband & I can go and choose gorgeous outfits for our two precious kids? Yes!

But more recently – Friday in fact – we learned that history was made. We learned that M&S are to feature Seb White as a child model in the Christmas magazine. Today we read a great article about him in The Times and The Daily Mail. You see, our adorable Asa also has Down’s Syndrome, like Seb. It’s taken us a while to come to terms with this and if we are honest we have had many tears (well, more so me!). So to see a huge company like M&S proudly feature Seb, a beautiful boy with a cheeky smile and adorable sparkly eyes and who also has DS…well it melts my heart. It makes me feel that we are not on our own, that the tide is turning, that our children will be seen as individuals first and not just their condition, which is just a small part of who they are.

I am so proud of M&S – this makes me proud to be British – and I hope that other companies will follow your high example and include people with disabilities in adverts, particularly in fashion and lifestyle! So well done M&S and thank you from the 4 Shaws from Dinas Powys! …especially from Asa who will grow up to be whatever he wants to be!

Lizz x