Coo Coo ca Choo

I realise I write primarily about Emily and that Holly will most likely come to resent me in later years for this. However, Em was the first and an ongoing blog was interesting (and I had time - which seems to be less the case now with two). Also, now that Em is "special", I hope that some of what I write about will help other families in similar situations.

Now that's out of the way - Holly's started cooing and she's becoming really alert. Whenever she sees me, she smiles and I can spend minutes mouthing hello to hear her coo it back, making similar mouth movements.

When you have your second child, you tend to forget the joys of milestones, but this is a really nice one. I'm glad that Holly is becoming more attentive and focused.

In other news, we recently got Holly weighed and heighted. She's on the 91st percentile for height, so it looks like we've got a couple of Amazonian sisters in the family. Be interesting to see if this peters out or if they both end up towering over Sue and I.

New words

Whether it's new school, or Emily's finally getting around to talking, she's actually coming up with new words. Some are helpful in her day to day and actually enable her to communicate - while others are just baffling.

Her books are on a higher shelf than she can reach and for a while now, she'd grab the hand of any available adult and drag them over to help her select a book. This weekend, however, she looked at me and said "Come. Help." and dragged me off to the shelf. I felt this was a real step forward in her ability to verbally communicate.

She's been saying "help" quite a bit lately, but it's not always in the best context. Out for lunch yesterday, Sue had to take Em to the loo. While in there, Emily started yelling "help. help." obviously to get Sue to help wipe her bum or her nose, or whatever. Thankfully, however, child services weren't alerted.

Emily's also been saying the phrase "A dog. A cat. A MOUSE!" quite a bit lately, and Sue and I are quite baffled as to the origin of this. It's not in a book and its not in a TV show or DVD that she watches. If it's her way of communicating, we're also stumped ... unless she wants some new pets and offering us her wish list.

She's still saying the catch-all "bread" for all manner of food, but she seems to understand in the morning that bread/breakfast/cereal means at least a trip down the stairs is in order.

We're getting there at a glacial pace, but at least the journey continues forward.

Blood curdling screaming

Still from the classic Next Generation
episode "Darmok"

Lately Emily has exhibited some odd behaviours. Last night on the way home from Helen's, we had to make a detour from our normal journey home to get some food at Sainsbury's for dinner. We took the normal route home, and then made a right turn where we'd normally go straight.

On turning right, Emily started sobbing and mumbling what I could only make out as gibberish and then... she stopped and let out a fog-horn style scream. 

What I get from this is she's trying to communicate through the gibberish and when I couldn't understand her, she got frustrated enough that she let out the scream. I tried to console her by saying, "it's good you're talking and communicating, but I can't understand you!" Obviously this worked like a lead balloon. 

I felt like Captain Picard in that famous Star Trek Next Generation episode "Darmok" where the universal translator failed and he was left to his wits to understand the Tamarian captain Dathon, who keeps muttering incomprehensible gibberish "Darmok and Jalad at Tanagra".

Picard had to persevere and finally found a way to communicate; I just had a bellowing child who was only consoled by singing to her. I guess in a way, although I didn't understand what Emily was trying to communicate, I at least knew how to console / distract her... and no phasers were needed.

Emily's communication

Emily's starting to make her intentions known, verbally which is good.

She's able to let us know she doesn't like something, which is better than nothing.

If we're reciting a song or a story to her and she's had enough, she'll start telling us "shh! shh! shh!". Likewise, she's started saying what sounds like "neesa" which we haven't fully understood yet, but believe it to be in the same vein - i.e. I don't like this and want it to stop.

Em's still communicating with more grunts than words, but telling us what she doesn't want is a step toward better communication.

Emily says her name... sort of

We've been getting Emily to say words by dropping out words in stories and songs and getting her to fill them in. Over the last few months, we've been able to drop out more and more words and she's been filling in more and more words.

Recently we've been watching a video on YouTube about Emily, the emerald green train on Thomas The Tank Engine.



The lyrics go something like "there's noone quite like Emily. Shiny emerald Emily." This weekend I managed to get Emily to fill in the missing word "Emily" with what actually sounds like "Emily". I'm FULLY aware she has NO concept that the Emily she's filling the word in for is actually her name.

I guess our next step is get her to understand things in concept.

Improved speech

It's happening, slowly, but it's happening.

Emily's actually putting words together and letting us know what she means and wants.

We were visiting John, our family friend, last night and an exhausted Emily hopped onto the sofa next to Sue and said "bed". It was VERY obvious what she wanted and a real leap forward in her getting her point across to us.

She's been improving in various other ways lately as well - she says "sit" or "sit right down" when she's sitting in her chair, but last night was really the first "request" she's made where she's actually been able to express herself clearly verbally.

Hopefully more speech comes soon and we won't be able to shut her up. I realise I am going to regret what I wish for when it happens.

The irrational fears of a damaged child

For a while now Sue and I have been skirting around the issue that there may actually be something wrong with Emily. How could there be, though? She's so perfect - cute and smiley, affectionate and loving. She's everything you could ask for.

Of course her language skills are practically non-existent outside of nursery rhymes, but that's ok... isn't it?

Sue's been doing some home diagnostics - always a dangerous undertaking - and the results are not all positive. She's been checking to see if Em's autistic or has assburgers among the many ailments.

Like any home diagnoses, you see a couple of headline symptoms and grab onto that problem like a life jacket in the ocean, ignoring the fact that 7 of the 10 symptoms aren't there.

I have to believe the best about our child's mental health and that her language delays are just that - delays. The speech pathologist has given us hope that the rest of her development cascades from developing her language.

There's going to be some real soul searching if there's actually something wrong with Emily. I can't love her any less, but even when you're 100%, the world's a hard enough place to live in and deal with. If you've got an affliction it's just a whole lot worse.

Speech appointment

After all the pushing and prodding, we finally had the appointment with the speech analyst (not her real title, but I can't remember what it actually was) today. It took about an hour for her to do a snapshot assessment, but it was mostly positive.

It looks like Emily's OK, but just slightly behind in development. There's nothing we could have done or didn't do to help it, some kids are just like this. Sue and I were told that a lot of the stuff we're doing is on the right path - giving her a choice, narrating daily activities, etc. I put a lot of this down to previous help from family members and the Hanen book we've been reading (which we were told today was a great tool to be using).

We've got a course of "home treatment" to try for a month - which is basically doing what we've been doing, but with a couple of sheets of further guidelines. We're going to get reassessed in early November.

We were also told of the knock on effects of speech delay - from adult-child interaction, to playing, etc. and how a lot of this could be construed as other ailments including autism. 

I knew today wouldn't be a silver bullet remedy, but I'm glad it wasn't doom and/or gloom as well. There's nothing "wrong" with Emily, we just to ensure we give her every assistance to get her back up to speed.

Light at the end of the tunnel

Having discussed Emily' progress - or lack of - with Helen yesterday, Sue then found some rather upsetting information on the internet about toddler who walk on their tippy toes.

The red flag worry bits included:

If your child is always tiptoeing, it's possible that she has a physical problem such as a short Achilles tendon that actually prevents her from standing flat-footed and limits her range of motion in the ankle. But consistent toe walking is more likely a sign of a motor disorder — most commonly, mild cerebral palsy. 

Of course, a little knowledge is a very dangerous thing, so we're not relying on this as a diagnosis.

The light at the end of the tunnel, however, is we finally have an appointment to get Emily's speech assessed. We're seeing a specialist next Wednesday, 22 September. Hopefully from this encounter we can get some other assessments sorted out - whether there is an issue as highlighted above, why Emily seems to live in her own world and not respond to her name, and whether there's anything else going on.

Every journey starts with the first step. It just feels this first step has taken FAR too long.

Saying words in context

Shoes.

Tonight Emily actually spoke A word in context to something she was "reading". She has a book of things to demonstrate 1-10. #6 is a picture of six dogs. When she sees this she does a "ruff" sound. No mention of how MANY dogs there are, but she recognises and associates the sound the dogs make.

#2 is a picture of two shoes. Tonight, she actually said "shoes" when she saw the shoes. I'm not that optimistic to believe she actually read and understood the word, rather she could actually associate the visual image with the word - I'd like to think so, the number of times we've sat on the bottom steps and put her shoes on, although I'm kind of glad she said "shoes" and not "shoesies" as we call them when putting them on.

It's a small win in the battle to get her speech sorted out. Although I know the war is far from over, the occasional win does bring a highly relieved smile to my face.

Speech issue continues

In the past few weeks I've put together a video of Emily for a friend of Sue's and a friend of my mum's to have a look at and give us some feedback.

We've got some of that feedback and now we need to overcome Emily's "expressive delay" in her speech and also try to ensure that she creates multi-syllabic words or sounds as well.

For most people, a lot of life's developments come naturally - eating, walking, speaking, toilet training - and you just assume that when a child is ready, it'll happen. It's a royal pain in the ass when it doesn't however. Thankfully, in this day and age there's help for almost everything that we take for granted that a child may not do. I can only imagine the help we'd get if Emily had been born 100 years before.

So, while we wait for the NHS to get off their asses and allow us to see a specialist, we've received some really good help and feedback from two continents in our continued efforts to bring Emily's development in line with other children her age.

Vocal toddler (aka found her voice)

Over the last week or so, Emily's really become quite vocal. She'd cry or shout at random times when there's no real discernible reason for her to do so. All Sue and I can do is offer her comfort - drink, food, nappy change, time for bed?

It's all a guessing game as to why she's being more distressingly vocal, and the more she chatters and yells, the more I wish that baby translator that Unky Herb in The Simpsons was developing was actually real.

On a happy note for Sue, Em has begun to say "mum mum mum mum" over and over again. I also swear I heard her say "bubby" or at least "bub bub" on at least one occasion!

Our little Emmers is growing up!