The sound of silence

“Today I stood on a sandwich, and my mummy said I could go to Little Bo Peep Land later.”
“I am a bit not full up.”
“I want Santa to bring me a doll and doors for Christmas.”
“I don’t like dreams about monkeys. I like dreams about chocolate buttons.”
“I saw the Moon smile and my daddy said we can do skipping when he cooks the dinner.”

I take my three-year-old niece to pre-school every Monday and hand in hand we have a little chat as we meander slowly down the long path to the door from the car park. Well, when I say we have a chat – she chats, I listen. And I love it. She just babbles about whatever is in her brain and it is brilliant stuff that makes perfect sense in her little world.

My two older children are chatter boxes too and it brings back wonderful memories. They are still full of non-stop natter, but their conversation is more coherent and sophisticated nowadays occasionally littered with the odd malapropism. An example is a recent discussion about whether my mum should get a dog or not that prompted my seven year old to say: “she should get a small dog like a Cockapoo.”

Kids, they do say the funniest things. It is very true.

That is why it is such a marked contrast when you have a non-verbal child. Gabe is four years old, globally delayed across the board, currently has no unifying diagnosis and can’t yet walk or talk.

The lack of walking you can almost get your head around and we are lucky that he bum shuffles so he has some independent mobility, but the lack of speech can often be hard.

The silence at times can be deafening.

  • No banter about what to have for lunch.
  • No loud tantrums about choice of TV programme.
  • No excited chatter about the day’s forthcoming events.
  • No stream of consciousness as you push him through the streets.
  • No retelling of an incident at school.
  • No berating a brother or telling tales on a sister who has annoyed him.

If you have a house filled daily with toddler tears and sibling squabbles you might think this sounds like a dream. I hear you. Sometimes I admit it is nice that there is one less to fill the noisy airwaves. But mostly when the shouting or singing is at its loudest in my house and my ears feel like they are about to pop, then these are the times when I’ll scoop up my littlest man and whisper a promise:

“One day my son you’ll be joining in the fun and I’ll never, ever tell you to be quiet.”

I don’t work on a Friday and this is my special day with Gabe. It is cherished time together as the date that he starts full time school and reception year looms ever closer.

We do lovely things (amid the chores) – swimming, long walks if the weather is nice, staying in and literally throwing the toy boxes over the floors and playing together. There are giggles and smiles aplenty, but if I let them these days could go by in a complete hush.

He does have a number of words. We’ve heard him utter: “Mummy”, “Daddy”, “Nana” and my favourite when he’s just had enough: “let’s go” (something I myself must say 23 times a day to shepherd three children and a husband). And when the mood takes him he will repeat what you’ve just said – the best being “I love you.” But the moments of noise are infrequent and they take you by surprise. The initial euphoria replaced all too quickly by the tinge of sadness that comes with knowing this is a rare event.

Maybe his little head is full of dialogue and one day soon we’ll get to hear it all. But for now we keep going with the speech therapists’ advice:

  • Repeating back any noises he makes.
  • Talking to him like he understands.
  • Not leaving him out of dinner time games and talking.
  • Using Makaton signs wherever we can.
  • Making sure we say the word and back it up with an object of reference where appropriate.
  • Keeping eye contact when I talk to him, pausing to give him chance to make his own reply.
  • Using songs bags and photographs to drive home meaning.

It doesn’t feel like therapy really anymore – not four years in – and there is a chance that it will never make a difference.

Maybe this will be as good as it gets. I hope not as I want, like all parents, to know everything about this child –his thoughts, his hopes and dreams! But more poignant than that I want to stop having to guess the basics – do you like this? Are you cold? Thirsty? Hungry? Where do you hurt?

Silence is not always golden.

But it’s okay. We’ll get by.

Because it is true that a smile can tell a million words.

 

 

53 Comments on The sound of silence

  1. Kiran Chug
    March 3, 2015 at 11:06 am (3 years ago)

    Oh gosh, that smile. So beautiful lovely. Keep on going, and Gabe will keep on smiling xx

    Reply
  2. Sian PottyMouthedMummy
    March 3, 2015 at 12:51 pm (3 years ago)

    Oh Ali you make me smile and cry and just feel everything with your posts. Beautiful writing, beautiful mummy and beautiful boy xxx

    Reply
  3. San King
    March 3, 2015 at 1:30 pm (3 years ago)

    Gorgeous boy and gorgeous post! All the best xxxxx

    Reply
  4. Lisa
    March 3, 2015 at 1:33 pm (3 years ago)

    Has he been tested for 22q11.2 deletion syndrome and 22q11.2 duplication syndrome? I would assume he's already had these ruled out, but mentioning it because his symptoms/abilities match the 3 children I've worked with who've had one or other of these syndromes, and he looks very like them facially as well. I am probably being no help whatsoever, but can't hurt to mention it!

    This is a really lovely post. I do hope you get to hear him chattering away one day. x

    Reply
  5. Alison Bloomer
    March 3, 2015 at 2:28 pm (3 years ago)

    Thanks Lisa. Do you know that was the very first thing he was tested for (diGeorge and associated conditions) when he was just three months old but it was negative. He really does match doesn't he. I think he's going to get a rare duplication syndrome diagnosis and we are just waiting on results from two clinical trials. That is very thoughtful of you to mention it xxx

    Reply
  6. Alison Bloomer
    March 3, 2015 at 2:28 pm (3 years ago)

    Thank Kiran. He is a champion smiler and giggler that's for sure x

    Reply
  7. Alison Bloomer
    March 3, 2015 at 2:30 pm (3 years ago)

    Thanks lovely. Hopefully he'll get to natter with H one day xx

    Reply
  8. Asalex Growsup
    March 3, 2015 at 4:12 pm (3 years ago)

    I very nearly cried. But the other people on the bus made me not. Love this every word x

    Reply
  9. Big Trouble in Little Nappies
    March 3, 2015 at 4:22 pm (3 years ago)

    Another one with tears reading this, along with a smile from those beautiful photos. I may have said this before but I love your writing – you explain everything so elequently and paint such a picture. Your Fridays with Gabe sound like all kinds of perfect and I'm sure he thinks so too x

    Reply
  10. Steph Douglas
    March 3, 2015 at 6:16 pm (3 years ago)

    You are tops lady – and an excellent tonic to us all to man up sometimes and quit moaning. Can't wait to see you x

    Reply
  11. Anonymous
    March 3, 2015 at 7:26 pm (3 years ago)

    I hear you. I have a lovely non-verbal 5 year old. ( autism) he's not said a word since 2013. I'd give anything to hear his little voice again.

    Reply
  12. brummymummyof2
    March 3, 2015 at 7:32 pm (3 years ago)

    Ahhhh lovely post! My girl is at pre school with a little boy who doesn't communicate and I know the Mum gets so upset. I'm glad he's saying the odd thing and let's hope he says more soon xxxxxxx

    Reply
  13. Bee E
    March 3, 2015 at 7:32 pm (3 years ago)

    Gabe has the sweetest smile. Thank you for sharing such a heartfelt post.

    Reply
  14. Beth Twinderelmo
    March 3, 2015 at 7:50 pm (3 years ago)

    What a beautiful boy. Thank you for the reminder that one persons annoyance is another's dream
    I absolutely love the daffodil photo xxxx

    Reply
  15. Carry On Katy
    March 3, 2015 at 7:51 pm (3 years ago)

    Lovely post. Your boy is gorgeous. And so are you. He is a lucky little man x

    Reply
  16. Carry On Katy
    March 3, 2015 at 7:53 pm (3 years ago)

    PS. A boy in my son's class said nothing at all for 4 years and now he is speaking really well since being at school. His mother can't believe it!

    Reply
  17. Beautwins Blog
    March 3, 2015 at 8:07 pm (3 years ago)

    I am a huge softy and can happily tell you this post brought a tear to my eye. This reminded me so much of my brother when he was little – who is now 34 (soon to be 35) who has autism and brain damage. Also my step dad who is deaf. My grandma always said, a babies cry is the best sound in the world. She's one of 14. Since having children and hearing of heart breaks and of her own heart ache I now know what she meant. I can't offer you much other than well wishes and I hope to one day read a post with a list of all the wonderful words your son recites to you over breakfast or saying goodnight. It sounds like he is well on his way there. X

    Reply
  18. Rachel
    March 3, 2015 at 8:30 pm (3 years ago)

    Oh, what a sweetheart!

    This is such a beautiful post. It puts my general desire for earplugs firmly into perspective! Thank you so much for writing it – and I do hope you get to hear chatter someday. x

    Reply
  19. Mardy Kerrie
    March 3, 2015 at 8:39 pm (3 years ago)

    He is bloody gorgeous, Alison. Here's hoping for lots and lots of mindless chatter from him and loads of "I love yous" for Mummy soon xxx

    Reply
  20. Anonymous
    March 3, 2015 at 10:11 pm (3 years ago)

    Hi my son was similar at that age he now talks non stop…but not wiith speech he uses a communication app grid player on iPad. He has a micro deletion syndrome with complex asd sld. get your don using an iPad eg educational apps and introduce a comma app for choice making etc like proloquo or speak for myself , Iasku etc download grid player for free to get an idea buut you need one you can edit to his needs easily. For my son the communication aid has allowed him. To speak where signs and pecs did not. He has avoice . Your son can too.

    Reply
  21. Anonymous
    March 3, 2015 at 10:27 pm (3 years ago)

    Ask your speech therapist which communication app she familiar with . Proloquo is easy to programme on the iPad but there are others eg makaton based one.

    Reply
  22. vjm25
    March 3, 2015 at 10:56 pm (3 years ago)

    There is a very interesting blog here http://niederfamily.blogspot.co.uk/ talking about experiences with iPad apps for communication. Passing it on in case it is of interest.

    Reply
  23. Anonymous
    March 4, 2015 at 9:18 am (3 years ago)

    My gorgeous Son will be 10 on Saturday and is yet to utter a single word. Not even Mama. My heart would explode to hear him say just one word. I totally empathise.

    Reply
  24. Lisa
    March 4, 2015 at 11:08 am (3 years ago)

    I thought he'd have already had them ruled out, but was struck by how well he matched with the children I know. Oh well. I think you're probably right – it does seem like a duplication syndrome of some sort. I hope you get a diagnosis soon.

    PS He is BEAUTIFUL! I know you know that already, but it's always nice to hear that someone else thinks so too, isn't it? x

    Reply
  25. Wry Mummy
    March 4, 2015 at 12:29 pm (3 years ago)

    This breaks my heart, Ali, and reading the comments above too. I wonder if any of these apps would be suitable for Gabe – I hope so. That's so lovely that he has said some words, even so few. Especially "I love you". Adore him! Can't wait to catch up! xxx PS Now get down and gimme 10 more posts 😉

    Reply
  26. Hurrah For Gin
    March 4, 2015 at 10:59 pm (3 years ago)

    Tears Alison. You are such an amazing mum to Gabe, i am very guilty of being a whingebag about my two when i often don't realise how easy i have it. Thanks for reminding me and thanks for sharing such gorgeous pictures of your beautiful boy. He will get there i am sure of it xx

    Reply
  27. Ally Messed Up Mum
    March 6, 2015 at 8:38 am (3 years ago)

    I would never pick silence over the noise of my boy, tantrums and all. It must be so hard for you. Thank goodness for that beautiful smile of his :). Such a lovely post. Thank you for sharing xxx

    Reply
  28. Anonymous
    March 6, 2015 at 4:20 pm (3 years ago)

    I always read but never comment, but this made me cry, he's gorgeous and you will hopefully get your chatter xx

    Reply
  29. Alison Bloomer
    March 7, 2015 at 5:05 pm (3 years ago)

    It is lovely to hear someone else thinks so too. Thank you. xx

    Reply
  30. Alison Bloomer
    March 7, 2015 at 5:05 pm (3 years ago)

    Ah well that's because you know all too well hun xx

    Reply
  31. Alison Bloomer
    March 7, 2015 at 5:06 pm (3 years ago)

    Thanks lovely and I do love Fridays (not just for the later wine 😉 ) xx

    Reply
  32. Alison Bloomer
    March 7, 2015 at 5:06 pm (3 years ago)

    Moan away – I am constantly hushing the other two. Noisy little things that they are xx

    Reply
  33. Alison Bloomer
    March 7, 2015 at 5:06 pm (3 years ago)

    I hope you do soon. I really do xx

    Reply
  34. Alison Bloomer
    March 7, 2015 at 5:07 pm (3 years ago)

    Sometimes it just takes time.. they have lots hopefully xx

    Reply
  35. Alison Bloomer
    March 7, 2015 at 5:07 pm (3 years ago)

    Thank you. I love his smile and giggle xx

    Reply
  36. Alison Bloomer
    March 7, 2015 at 5:08 pm (3 years ago)

    I love that pic too. Don't worry I have two others that keep the annoyance levels at normal 😉 xx

    Reply
  37. Alison Bloomer
    March 7, 2015 at 5:10 pm (3 years ago)

    Thank you and your well wishes mean a lot xx

    Reply
  38. Alison Bloomer
    March 7, 2015 at 5:11 pm (3 years ago)

    Thank you Rachel – I think we all need ear plugs sometimes (especially for the husband's snoring) xx

    Reply
  39. Alison Bloomer
    March 7, 2015 at 5:11 pm (3 years ago)

    I can't wait for those. Thanks Kerrie xx

    Reply
  40. Alison Bloomer
    March 7, 2015 at 5:12 pm (3 years ago)

    I can't wait either. Thanks Kerrie hun x

    Reply
  41. Alison Bloomer
    March 7, 2015 at 5:12 pm (3 years ago)

    Since writing this I have had some excellent recommendations that I am def going to look into. Thanks so much for taking the time to recommend xx

    Reply
  42. Alison Bloomer
    March 7, 2015 at 5:13 pm (3 years ago)

    Thanks for the link – that blog is amazing. Really useful xx

    Reply
  43. Alison Bloomer
    March 7, 2015 at 5:14 pm (3 years ago)

    I bet he speaks in his own way. I hope one day your wish comes true xxx

    Reply
  44. Alison Bloomer
    March 7, 2015 at 5:14 pm (3 years ago)

    Thanks Jess. My guru – on it xxx

    Reply
  45. Alison Bloomer
    March 7, 2015 at 5:15 pm (3 years ago)

    I am a whinebag too – how can you not. They are blinkin hard work these children. Thanks for the lovely words xx

    Reply
  46. Alison Bloomer
    March 7, 2015 at 5:16 pm (3 years ago)

    Thanks Ally – noisy boys are the best fun xx

    Reply
  47. Sarah (@tamingtwins)
    March 7, 2015 at 7:41 pm (3 years ago)

    Oh Alison, so sorry I am so late to comment on this. He's so utterly gorgeous, I so SO hope that he find his voice very soon. imagine how totally exciting it will be for you both.. You've reminded me that the noise and chaos and screaming in this house is a privilege to hear. Thanks doll. See you soon xxx

    Reply
  48. Judith Hurrell
    March 11, 2015 at 10:26 pm (3 years ago)

    Wow, I never thought about what it might be like NOT to have the constant chat and noise. Thanks for this window into your lives. So moving and I will appreciate the noise my little ones make much more now. xxxx

    Reply
  49. Jenny Ripatti-Taylor
    March 12, 2015 at 10:05 pm (3 years ago)

    Ahhh bless you what a beautiful post and lovely written. Your boy is so adorable too! :)

    Reply

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