Thursday, 19 July 2012

NCT Newsletter

I've written an article for the NCT newsletter, whose subject is 'communication' this time round. The NCT, by the way, have had the pleasure of me volunteering (no, I don't know what I was thinking either!) to assist the co-ordination of the nearly new sale and various other things. 

Anyway, I've just sent it across and it's here:

Pixie was always a physically advanced baby and toddler, so in a sense I was expecting him to be a slower talker (I’d heard the adage ‘a baby’s a walker or a talker but not both’!), so when his peers picked up words slightly faster than him I wasn’t bothered and assumed he’d get there in his own time.

Just before Christmas 2011 (when he was two and a half) his dad and I started to notice that Pixie was stuttering. At that point he was having a huge burst of vocabulary so we put it down to his mouth catching up with his brain and didn’t really think much more about it. It happened again, and again, and in about February we realised that what he was doing was above and beyond ‘normal’ childhood development and in the realms of having a speech problem.

His stutter has presented perfectly typically. He’s 3 (most stutters present between 3-5 years), he’s male (approximately 3/5 stutterers are male), he has parents with slight speech issues (there appears to be a familial link between stutterers, although the exact cause is unknown) and he’s had a great deal of stressful change in a short period of time (new sibling and a change of childcare provider) – I’m not sure he could be more of a classic presentation! Unfortunately knowing that he’s ‘typical’ hasn’t assuaged the sadness I feel watching him struggle to get his words out.

I’ve mentioned my concerns to other people who come into contact with Pixie. Their assurances that “he’s not that bad” do little to ease my worries. Either they’re wrong and it is that bad or I – the very person who’s meant to know him best – can’t understand him. I’ve been told that there are reasons for his stutter to present worse in front of parents but even that does little to alleviate the worry – parenthood is one long mass of guilt and worry, isn’t it? 

Although Pixie is only just vaguely becoming aware that he has a stutter (he’s very recently started to stop himself in the middle of sentences and drift off for a moment before starting afresh), he’s becoming increasingly aware and frustrated by people’s inability to understand him. Worse, he’s started to realise when people are pretending to understand and he’s been in tears several times because of it. Having to translate what he’s saying to people feels like I’m undermining him and removing his voice, yet if I don’t then he doesn’t get to say what he wants to say. 

I’ve recently completed the first stage of speech therapy, which is parent-only group sessions aimed at giving caregivers the techniques necessary to assist the stutterer in talking. The key points are to limit questions and only ask necessary ones (which seems counterintuitive when your child is still learning to talk!); make fewer demands on their speech (no more “tell daddy what you did at nursery today!”); slow your own speech down to model a better speech pattern; remove environmental distractions so speech can be concentrated on; remove any competition in speech so they’re not fighting to be heard in family life. 

Some of what we’ve been asked to do feels very much as though a step back is being taken – simplifying language seems wrong when as a parent your job is to help teach your child an expansive and diverse vocabulary. We worried that we’d never get a proper conversation out of Pixie again if we didn’t ask him questions, but surprisingly giving him space to talk (or not, as he prefers) has probably resulted in better conversation because he’s telling us what he wants us to know rather than what we’re asking him to tell us. Remembering that it’s ok for children not to want to talk all the time, and that we as adults don’t need to know the ins and outs of their day away from us. After three group sessions the feeling that we’re going backwards has started to abate and we feel as though we’re better equipped to handle Pixie's problem. Changing the way we speak is hard, and we often find ourselves stalling halfway through a sentence as we realise we’re about to end it with a question. But as Pixie is learning to get through the stutter, we’re also learning how to best assist him. 

The next stage in his therapy is an assessment through play, which is scheduled for a couple of weeks’ time. From there we’ll know exactly what problems we’re dealing with and the speech therapist will be able to review his progress over time. With any luck Pixie will be one of the children who outgrow their stutter – only 1% of children carry it through into adulthood. If he’s not then I’m hopeful that an early intervention will give him and us the tools to adapt in the wider world.

Thursday, 12 July 2012

Can't Do Carrots

I'm working on the next speech post (I am, I am, honest! Definitely not watching repeats of The Bill) but there's been an interesting development on the salicylate front.

Yesterday Pix had one and a half carrot batons. I mentioned in my last post that he's not a fan of low salicylate vegetables (although I've had some good ideas to try out for that, which is awesome, thanks to folks for that. Apart from Katherine who suggested he try kale, MY MOST HATED VEGETABLE EVER) so we figured just to get some nutrients in him we'd let him have a little bit of carrot, which has medium levels of salicylic acid in which we thought would be ok in moderation. Well. Today his eyes have become more and more red underneath and itchy; his face and arm skin has been itching him all day; his cough has got more and more frequent during the course of the day and his stutter has been awful.

The fact that they've all got worse together confirms (in my opinion) that they're all related. It would be far too much of a coincidence for them to completely autonomously of each other get bad over the course of the same day. Surely? But, it has been a better weathered day today so it's possible it may be a pollen allergy, I suppose. Do pollen allergies cause stutters? Or maybe something else. But possibly for the first time on this venture I feel slightly confident that I'm not displaying vast M√ľnchhausen by proxy symptoms and I am barking up the right tree.

Wednesday, 11 July 2012

Vegemite Vege-won't

We're coming to the end of day five on a lower salicylate diet for Pixie and I have to say it's not been as soul crushingly hard as I was expecting. We've been super pleased with his nursery as the P's daddy called them to let them know what we were up to, expecting to be asked to take in a pack up for Pix, but they've accommodated us entirely. The only problems we're finding are that he now has a very limited diet, especially in the fruit and veg department. Luckily he likes bananas, pears and golden delicious apples so he eats two of those a day. Unfortunately all the low salicylate veg are ones he doesn't like, like cabbage and peas. Bummer for him. I'm trying to get him to eat them but it's hard going - if anyone has any bright ideas on how to get kids to eat certain vegetables that'd be handy! The other problem is the range of food he can have while we're out. Partly this is because I'm being particularly cautious while I'm getting to grips with the diet, but partly there's plain crisps and, er, that's about it. He's still being so good about it all.

His symptoms may have seen a very, very mild improvement. It's hard to say with a lot of them as they wax and wane anyway, but his eyes are less red and angry looking; I've not heard him cough much in the last day or two; there's no eczema patches; I've not heard much whining about being huuuuuuuuuuuungrrrrrrrrrrrrrry; I've not noticed him bash his head a million times. His speech is going through a relatively 'good' patch at the minute but he's definitely still stammering, although the coherence of his words is quite good. So yeah, there's certainly not been a decline since we started this and if I squint a bit there may even be improvements!

Sunday, 8 July 2012

Those Silly Salicylates

I mentioned in my last post that one of the things I was considering was a salicylate intolerance in Pixie. The list of symptoms associated with it are varied and numerous and a salicylate free diet is mooted by some to have positive affects on people with ADHD.

There are a number of things on the list that Pixie has. Obviously it may well be that he just 'happens' to have a multitude of unrelated, low-level health issues but equally there may be an all-encompassing reason for them. Having fibromyalgia myself, I know that a myriad of seemingly unrelated issues can (eventually!) be tracked back to an umbrella condition. With that in mind, we decided that cutting down on salicylates certainly wouldn't hurt.

The list of symptoms we're concerned about may be a mix of unrelated issues and the fact that Pixie is, y'know, three, , so I thought I'd track his progress here. The symptoms we think are related are these:

  • eczema (mild, but we can never quite get rid of it)
  • persistent cough
  • slightly darker and slightly paler patches on his forearms, as though the skin pigmentation is going awry
  • itchy, dry skin around his eyes, with red circles round them, that cream doesn't seem to get rid of
  • constant hunger
  • accident prone (honestly, I'm surprised he doesn't have brain damage by now, the amount of times he's walked into the same pieces of furniture!)
  • hearing without comprehension
  • slurred speech
  • stammering
Obviously if the salicylate intolerance isn't the cause then the symptoms won't get better over time. However, even if he is intolerant I'm expecting the symptoms to wax and wane before going completely, especially while we get to grips with what is and isn't 'acceptable' under the new regime. So I'm going to track the progress here.

We're currently at the end of day two and he's being surprisingly agreeable about the entire situation. He's started asking if he's allowed to have something before he eats it (which is brilliant!). The worst part is limiting his fruit and veg as he's a big fruit fan and we obviously want to keep him having a fresh, healthy diet! Because he goes to nursery for 3 half days a week he has 6 meals a week outside the home. I don't want to mess about with what he eats there on what's unsubstantiated theory at the moment so we're not going to ask the nursery to alter his food in any way yet. However, we'll keep an eye on any reactions he has on those days and take steps if necessary. I'm slightly concerned about the website I linked to earlier saying that caution needs to be exercised on reintroducing salicylates as anaphylactic shock may occur....I don't think that they'll be removed so completely (we're not currently changing his toiletries, for example) that him eating 'normally' at nursery will result in that though! Um, if anyone thinks they know different please get in touch before Tuesday morning!

I wasn't expecting to see any results this quickly but what is a little bit galling is that this afternoon his eyes got really bad and red again and his behaviour deteriorated pretty quickly. How much of this is because we slipped up somewhere and how much is because the weekend was spent with his grandparents having attention lavished on him I don't know, but there were definitely tears before bedtime!

Tomorrow is another day, and one that we'll hopefully start to see signs of change.

Thursday, 5 July 2012

Talk the Talk

Yesterday was quite a tear-filled day for me. The morning saw Pixie's first dysfluency speech therapy session (although it was parent only so he was off living it up with a friend!). 

I feel horrendously sad for him and guilty. I honestly thought his affected speech was a short-lived developmental phase but being there made me realise that his speech patterns are quite a bit more serious than I thought. As he's not been formally assessed yet I can only give my lay opinion but I believe he has a stammer (or stutter if you're from the US) and cluttered speech.

The stammer has presented perfectly typically. He's 3, he's a boy, he has parents with speech issues (his dad had a stammer, I get what I call speech dyslexia (although I'm sure there's an official name!) from my fibromyalgia), he's had a great deal of stressful change in a short period. I'm not sure he could be more of a classic presentation! According to the Speech Disorder website there are three types of stammer:

There are three main types of stammers that exist and which keep individuals from speaking most efficiently. One type of stammering occurs when specific sounds are repeated, such as the “s”. This often makes a word such as “sweet” be pronounced as “s-s-s-sweet”.Another type of stammering occurs when a specific sound is prolonged before the rest of the word is pronounced, such as “sssssssweet”. The third type of stammering occurs when some speech is blocked so that there is a short period of silence in the middle of a word, such as “s……weet”.
Pixie certainly does the first two, although he also repeats the first word or syllable as well as the sound. So far he hasn't shown any sign of 'blocking'. He also repeats sounds or words in the middle of sentences, although the speech therapist believes that because of his age he's treating them as two separate sentences. As well as those he adds filler sounds like 'um' and a sort of tut. Again this is common, apparently, as his brain realises that making those noises gives him a bit of time to get his mouth round what he's actually saying. Thankfully he hasn't noticed yet that he has a stammer.

As well as the stammer, I believe he has cluttering, which Wikipedia defines as a:
communication disorder characterized by speech that is difficult for listeners to understand due to rapid speaking rate, erratic rhythm, poor syntax or grammar, and words or groups of words unrelated to the sentence.
He can have an entire conversation with me where I can only make out a word or two of what he says. Although many websites have said that clutterers don't have any awareness of their dysfluent speech, Pixie has started to notice that people don't understand him. More upsetting, he's noticed that people are pretending to understand him. We've all done it to children who are learning to talk, replied to an unintelligible babble with "Oh yes, right! That's it, yes!" which is all well and good until the child is old enough to come crying to me because the person he's talking to isn't talking back.

My homework following the session is to see when Pixie's speech is at its most fluent, so we can use that state as a basis to improve the bad times. I think I'm the person least able to do this because I genuinely don't hear a lot of the issues because I'm so used to them. We're visiting my parents this weekend so hopefully they'll be able to help out.

I'm a little ashamed to say I cried in the session. Realising that my little baby needs help was honestly devastating. I'm even more ashamed to say I cried when a friend asked me how it had gone! We've only been friends for a couple of weeks so I don't think she was expecting tears over cake!

Something I'm finding hard to admit and even harder to articulate is the extra worry I have. There's something inside me that thinks the speech problems may be part of something bigger, more worrying. Over the last few months there have been times when I've thought 'you're just not right'. I can't tell you what, and I hope it's just an over active imagination, but I've been spending a lot of time reading up about ADD and salicylate sensitivity. More on those another day as Poppy has just woken up from her (very short!) nap.