Developmental Language Disorder

As both a Speech and Language Therapist and Mum to a boy with Developmental Language Disorder (DLD) this is a subject close to my heart. This week is DLD Awareness Week and tomorrow, the 22nd September 2017 is DLD Awareness Day. Through this blog I want to make a small contribution to raising awareness of this poorly understood condition.

Although DLD has been recognised as a condition for a long time, its name is new. The condition has previously been known as Language Disorder or Specific Language Impairment (SLI) but everybody used the labels differently and the lack of consistency wasn’t helping with making people aware of it. There is currently an awareness raising campaign taking place which is brilliant. There are more children in the UK who meet the criteria for DLD than there are children with Autism but nobody has heard of the former. This equates to 2 to 3 children in every class with a condition that is poorly understood and under-identified. I’m not quite sure what us Speech and Language Therapists have been doing wrong but I’m pleased that there is now a big push to raise the public’s awareness.

As part of the campaign a video has been made. You can watch it here: https://www.youtube.com/user/RALLIcampaign

You can also tweet about it using the hashtags: #DLD123 #DevLangDis

There are 3 key messages that are the focus of the awareness raising campaign:

  1. DLD means that a child (or adult) has difficulties with understanding and/or using language
  2. DLD is a HIDDEN condition but is surprisingly common.
  3. Support can make a huge difference to children with DLD

In order to bring these messages to life, I would like to share some of my son (Little Bear)’s journey.

  1. In simple terms, Little Bear experiences difficulties with both understanding and using language. This visual produced by Susan Ebbels is helpful in giving more detail:

FullSizeRender (10)

Little Bear experiences (or has experienced) difficulties with every area in the peach circle including Phonology. If you want to know more about his journey, the specific types of difficulty he has overcome and some of the things we have done to help him, you can read about it in these previous posts:  Living with Speech and Language Difficulties , Speech & Language & School, A bit of a rant, SaLT, EP & an Assembly, Communication Difficulties: Update

As part of the awareness campaign, the diagnostic criteria for DLD have been clarified. Crucially, for us, early neglect is not an exclusionary factor. This fits with my growing hunch that Little Bear was always going to have DLD but that his early adverse life experiences have served to deepen his difficulties.

2. DLD is a HIDDEN difficulty but it does show itself if you know what to look for. It is crucial that teachers in particular are able to see beyond ‘challenging behaviours’. A world in which you cannot understand much of what is happening around you and you are unable to verbalise your thoughts, fears and ideas is scary and frustrating. It is no wonder that many children with DLD express themselves through their behaviour. In general people need to get better at looking beyond behaviour – what are the child’s reasons for behaving as they are? In our case (and many other cases up and down the country) trauma could be at play too.

Children with DLD may not put up their hand in class, they might struggle to complete their work and their learning may not be progressing as you would expect. They may struggle in particular with literacy.

If you speak to somebody who is taking a bit longer to answer you or who doesn’t seem to be following your conversation or who is confusing to listen to, they might have DLD. Give them more time. Don’t worry about having a big pause – they might need that time to think. Try to keep your language clear. It doesn’t matter about flowery language – cut to the chase. Say what you mean. Your conversation will get much easier.

Children with DLD are not un-intelligent. Little Bear has the potential to learn many things but the way they are explained to him is crucial. He can struggle with too much or very complex language but if you can explain a complex concept to him in an accessible way, he will understand it. We have recently had chats about hurricanes, electricity and endangered animals and he is a sponge for knowledge if it is presented in a DLD friendly way.

3. The best message from our story is that support really does make a massive difference. A diagnosis of DLD is not hopeless. Despite having been neglected for the first 3 years of his life and having very poor language stimulation during that time, Little Bear’s language skills have gone from strength to strength with the right input. It is never too late to put support in place.

Of course Little Bear’s difficulties are ongoing but he is progressing all the time. He has gone from using 3 to 4 word sentences to full, compound, complex sentences.

His vocabulary has grown from a miniscule hand full of words to a wide and fairly ordered plethora. Although words do still have difficulty getting stored correctly and sometimes jumble together (Numicorn for unicorn (Numicon + Unicorn) or chicken yoghurts (nuggets + yoghurt)), Little Bear is getting better all the time at being able to analyse the parts of words and can mostly imitate them correctly now.

Little Bear’s grammar is not bad, though the order can be jumbled. We usually have one target on the go at a time. At the moment we are working on ‘bigger than’ instead of ‘bigger of’ which Little Bear is grasping and using appropriately.

Little Bear’s speech has gone from being completely unintelligible to just a few vowel and more common errors such as ‘v’ for ‘th’.

His awareness of the sound patterns in words has gone from non-existent to being able to say the first sound to being able to blend sounds together to being able to read.

This level of progress in a two year period is fairly transformational. He doesn’t sound like the same child any more.

The progress has meant that making friends is much easier and things like being able to sing are becoming a possibility (it is still a challenge but Little Bear tries very hard and repetition of songs is really helping him). Little Bear has learned lines and spoken in a class assembly. He can speak on the phone and family members can understand him and have a proper chat.

 

Little Bear’s DLD will be ongoing. It will probably affect him into adulthood but this doesn’t keep me awake at night because I have seen the progress he can make with support. I have every intention of keeping the support going and although DLD will always be a part of him, it needn’t stop him. With the right support, he will be able to reach his full potential.

 

 

Please share, use the hashtags and watch the video. We need to put DLD on the map. Perhaps you know someone who experiences it?

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Developmental Language Disorder

Parenting in Public

The actual title of this post should be ‘Parenting a Child with Behavioural Difficulties in Public’ but it’s kind of unwieldy and somewhat lacking in zing. It is what I mean though as ordinary parenting in the public eye is not especially challenging, in my experience.

As we are now coming to the end of week 6 of the summer holidays I have been spending more time than usual out and about with Little Bear in public. We have been to all sorts of places: shops, museums, LEGOLAND, the beach, restaurants, the zoo, parks. Sometimes it all goes swimmingly and there is nothing significant to report but at other times I end up feeling more conspicuous than I would really like.

I think it is partly because Little Bear’s behaviour is at a developmentally lower level than his chronological age. Whilst this is common amongst children who have experienced developmental trauma it can nevertheless look incongruous to the untrained eye. I’m wondering if it has become more pronounced because Little Bear has had a growth spurt and for the first time since he has been with us he is requiring clothes larger than his age. He is a tall 5 and half year old who frequently engages in behaviour more typical of a pre-schooler. Today, for example, we went to the garden centre and he spent a happy 10 minutes going from water feature to water feature putting his hands in and splashing about in them. I can remember Big Bear doing exactly the same thing but he was probably a couple of years younger.

Ditto pointing obviously at people who look different and/ or commenting loudly within their earshot: Look he’s got a bald patch!

Why’s your tooth broken? (Whilst staring at close range into an elderly lady’s mouth when sharing a hand dryer. Thank goodness for unclear speech).

Why does that lady have her belly out mummy?” (Bellowing and blatantly pointing at someone about 3 feet away).

I don’t know son, but perhaps she should ask herself that.

While these developmentally younger behaviours do draw some attention and can be mildly embarrassing, it is the more unusual or more unexpected behaviours that I usually find harder to style out.

Sometimes a waitress or passer-by might be friendly towards Little Bear. They might comment on his outfit or try to chat to him about something and, one assumes due to his attachment difficulties and mistrust of strangers, he can be downright rude. He might not answer them or he might scowl or he might say something like “go away”. I find myself being extra friendly or making some sort of excuse for him.

Little Bear can behave similarly with other children and sometimes he seems to square up to them or tries to stare them out.

Conversely he can be over friendly and will approach people and even lean on them or touch them despite not knowing them. He frequently approaches people if they have babies with them and will try to push the pram. Today he somehow got another Mum whom we didn’t know to push him on the swing (I had turned for a couple of seconds to greet our actual friend).

Little Bear is also quite hyperactive and inquisitive. This tends to lead to a lot of touching of things he shouldn’t, climbing on things he shouldn’t and general wildness. Today I have had to coax him out of a dog basket that he had pulled off the shelf and curled into in the middle of a thoroughfare and also lift him down from a wire gazebo which he had scaled and was hanging from the top of. He hangs off counters in restaurants and cafes and if there is any sort of railing he will be doing roly-polies on it (there is one inside Asda that he is particularly attracted to).

Though he tries his best to stay seated when we go out for meals it is very difficult for him and he does get up and move about. Sometimes he gets under the table. On one occasion he commando crawled under a public toilet door – Big Bear thought it was brilliant and all I could think about was how many germs he had touched en route.

During our holiday we stopped at Services that had a quiet Starbucks and he spent the first ten minutes crawling laps around a long bench seat in there while we tried to maintain a sense of decorum (and tried to pretend he wasn’t with us).

He often runs inside shops and restaurants and might try to pick something up that he shouldn’t e.g. in Sainsbury’s he might start kicking a ball around the aisles if he sees one for sale.

Sometimes Little Bear has public outbursts. Today, whilst in a busy queue at the ice cream kiosk at the park, Little Bear lost his temper because they had run out of the ice cream he wanted. He wouldn’t choose anything different and purposefully ran over his brother’s foot with his bike. When I told him to get off the bike, he kicked it, the wall and attempted to kick me. I could practically feel the anticipation and judgement of the other parents around me, tense with wonder at how I would surely punish him. I guess they were probably quite disappointed when I didn’t (you try juggling a cup of tea, an ice cream, a balance bike and a dysregulated child. Also, I could have lectured them in the pointlessness of punishing a dysregulated child but my hands were quite full).

Now, here is the crucial bit, clearly I do not think that any of this is acceptable behaviour. I was brought up to be polite and well-mannered and try to instil that in my children too. Of course I would prefer it if they would both sit still, be quiet, react politely and not draw excessive attention to us.

If I’m being really honest, when Little Bear first arrived and his behaviour was at the more extreme end of things, I frequently felt like stopping members of the public to say “don’t judge me, he’s adopted. I didn’t make him like this!” (Don’t worry, I never did and I do know it isn’t an appropriate way to handle things!).

In an ideal world my child wouldn’t pelt up and down pubs, make loads of noise or throw things. However, in an ideal world, my little boy wouldn’t have been neglected. He wouldn’t have an uphill struggle ahead of him and his development would not have been adversely affected by his start in life.

I can’t set ideal parenting standards for Little Bear (at the moment) because good parenting does not involve setting your child up to fail. I cannot ask him to sit still throughout a meal, be friendly and polite at all times, always walk and never run and never touch anything. I can’t ask that of him because I know that he is already trying his best and he can’t do it.

I have had to re-evaluate what is absolutely essential behaviour-wise and what is less so. I have had to decide which things I can turn a blind eye to and which things I will tackle. I can’t tackle everything at once because I would be telling him off every minute of the day and that is no good for anybody. For now I have a zero tolerance approach to violence and we try our best to follow instructions the majority of the time. Other issues are for later.

My parenting style with Little Bear can be summed up by “don’t sweat the small stuff” and “pick your battles”.

The only problem is that Mr and Mrs Public are not versed in this approach and actually often do want to sweat the small stuff. Last week, Little Bear got told off twice by strangers. The first time it was because he had lifted a glass lid in a café to show me which donut he wanted. The waitress walked past and sharply said “that is made of glass! It is not for you to touch!” The second time was because he was climbing on a wooden railing inside a family pub and the waiter sternly told him to get down from there.

As I was present on both of these occasions and the person in question saw fit to tell Little Bear off anyway, I can only assume that they felt my parenting was lacking. Were I to have the time or inclination to concern myself with this, I would probably be quite offended. However, thanks to Little Bear, I don’t bother sweating the small stuff either.

I can feel a bubble of something brewing though. One or two interventions from strangers I can take. A stare or glare here or there I can ignore. Maybe even a tut could be disregarded. I know that people are judging Little Bear against their standards of behaviour and finding him lacking. I know that consequently they see my parenting as lacking. I have grown a thicker skin and am mostly adept at shrugging it off. I am confident on the path I am taking and I have the benefit of understanding his behaviour, what could be causing it and also seeing the incredible progress Little Bear has made.

However, I know there is a line when it comes to strangers telling off my children and should someone see fit to cross it, I would not be able to hold back. Don’t be so bloody judgemental, I would want to say, you don’t know his background; you don’t know what he has been through. Don’t judge my parenting. Try walking a few steps in my shoes and then see how you feel.

My inner momma bear is poised, ears pricked up. Ready. Little Bear is my cub. He is my noisy, energetic, curious, infuriating mischief of a cub but he’s my cub and he’s trying his best and I will not hesitate to leap to his defence if provoked.

Consider yourselves warned Mr and Mrs Public. Consider yourselves warned.

Parenting in Public

Reports

It is school report time here at Bear HQ and once again it has got me all reflective. This time last year in Achievement I wrote about how standardised assessments and age-related expectations are not going to be the right way to measure Little Bear’s achievements.

Back at the start of his time in Reception class I had a bit of a wobble about how much was expected of him and how unrealistic it would be to ask him to meet those expectations by the end of the academic year (you can read about that in Little Bear Starts School). The expectations that are in place do not take into account a neglectful first several years of a child’s life or the significantly lower starting point that they are beginning from. After all, it would be impossible to expect a child to go from not being able to count to knowing all their number bonds to 20 in one year; or expecting a child who cannot write their name when they start school to be writing little narratives by the end of term. You wouldn’t expect a child with significant speech processing difficulties to be able to read fluently in one year or a child who is extremely resistant to adult direction to be fully compliant every day.

We did not expect Little Bear to meet the expectations as it was an impossible ask. I am not surprised therefore that he hasn’t met them. However, it would seem that I do have a little bit of an issue with the way the information has been shared.

The Bear’s school have switched to new-fan-dangled online reports. I understand why: OFSTED must love it and it must be much more time-efficient for teachers. However, call me old-fashioned, but I would much prefer an actual piece of paper (you can’t even easily print our ones out to keep for future posterity). There are lots of tabs along the top and you have to click on each to get different information.

The very first tab is a summary of where your child is at compared to expectations. On the left there is a scale with the following descriptors: well above expected, above expected, at expected level, below expected and well below expected. The core subjects are along the bottom and your child’s level is shown through coloured traffic lights. For Little Bear that means a row of red lights across the ‘below expected level’ line. They may as well flash and sound an alarm alerting you to your child’s lack of achievement.

Grizzly and I had a chat about this and he thinks I’m being oversensitive. He thinks it makes perfect statistical sense to do it this way otherwise what are you comparing your child to? My issue is that I don’t understand the point of comparing him to targets which we have already established to be unobtainable. Surely that is setting him up to fail? What I would like to see is a comparison between where he was at when he started the year and where he is at now. I don’t care where he is at compared to average Joe Blogs, that information won’t make any of us feel good. I understand that what I’m asking for is probably a complete data nightmare but in theory it would be a much more positive report because it would show the massive progress that he HAS made not what he hasn’t.

I asked Grizzly how he would feel if Little Bear were scoring right across the “well below expected range” or how he would feel if every report we ever get for Little Bear shows him to be in this “below expected” range. He’s much more pragmatic about these things than me and said well if that is where he’s at it’s where he’s at. Which is of course completely true but I can’t help feeling that this way of displaying data makes getting a report for a child with any level of additional needs a fairly negative experience. It certainly felt different to opening Big Bears and seeing his neat row of green lights.

The rest of the tabs offend me less. There is one with the teacher’s comment, one about behaviour and ones where you can see a list of targets your child is working on and which descriptors they have already met. I do find it a bit odd that the focus is on Maths and English and little else. What if your child excels at PE? Or Art? Or Music? There isn’t anywhere in either boy’s report where that can be reflected which could potentially add to the negativity for a child like Little Bear who struggles most with the core subjects.

Anyway, having come back to look at the reports again, I can see that maybe my opinion of Little Bear’s as a whole has been tainted by the red lights. The comments from his teacher are lovely and do mention “superb progress” and that he “has worked extremely hard”. It says he is polite and respectful to grown-ups but his attitude to his peers “needs to improve”. It says that he is happy and settled but that he does test boundaries and is still learning to remain focussed.

All of the above is true but what it doesn’t really reflect is just how spectacularly wrong this year could have gone and in comparison how fabulously he has done. That version might go something like this:

Although Little Bear does not always listen and sometimes hits his friends, he has had less than 20 red cards, he has not been sent to the Headmaster and has avoided getting himself excluded, all of which were real possibilities in September. The fact that he is described as being polite and well-mannered is nothing short of an actual miracle. He could easily have bitten/ scratched/ kicked or thrown something or told his teacher how stupid she is each and every day of term time. The control and self-restraint he has developed is fantastic.

On beginning school Little Bear could not count to 4 for the love of God and we were driving ourselves mad chanting the numbers over and over. He can now count easily to 10, forwards and backwards and is just a tiny bit more practise away from making it to 20. He can recognise all the number shapes to about 13 and is managing some very basic adding and taking away.

In September Little Bear was pretty much unintelligible to people outside of the family. He could just about recognise his name written down but couldn’t recognise any other words. He knew maybe 5 letter shapes. He couldn’t tell you if words rhymed or what sound they began with. He most definitely couldn’t blend sounds together. Now, he recognises all the letter shapes, which he learned surprisingly quickly. After a lot of hard work and perseverance he has mastered blending which is no mean feat and can read at a basic level. He has even gone up one reading level on to Red books which he is extremely proud of. Considering the fact that Little Bear was attending a Special Needs nursery before he moved here and the likelihood of literacy in his future was slim to none, his progress has been phenomenal.

At the start of term Little Bear could hold his pen well and could scribble but his pictures didn’t look like people and he couldn’t write at all. He can now write his name and draw a picture of himself with most of the right body parts. He can form letters really well and can copy from a grown-ups model. He can make some attempts at independent writing.

Little Bear is happy and settled at school. He has learned all the routines. He loves show and tell and is now confident enough in his communication to stand up and talk in detail in front of the class. He has taken part in assemblies and school trips and has behaved appropriately.

The year could have been a complete disaster. Little Bear could have been like a fish out of water. His behaviour could have been out of control. He could have struggled with all the learning and not made any progress.

Instead, I feel he has achieved above and beyond any expectations we could have had for him. If there were a chart for progress, he would have a row of bright green lights in the “well above expectations” row. Instead the row of red lights he does have seems to figuratively piss all over his bonfire. I am not finding some of the other parents’ bragging about how advanced their children are particularly helpful either.

Anyway, I shall brush myself off, endeavour to develop a slightly thicker skin and focus on what I know really matters: Little Bear has had an extremely successful first year at school. We have secured the funding we need to build on his progress next year and I have no doubt he will continue to exceed the limited expectations his early life tried to saddle him with.

Reports

Jigsaws

I know this seems a slightly strange blog topic but Little Bear has taken a real interest in jigsaws recently and in doing so I have learned a lot about how he learns and how he needs to be taught.

Up until very recently Little Bear has not shown an interest in activities that require sitting still and concentrating, such as jigsaws. He has had lots of other needs in terms of developing his play skills so I haven’t been too concerned. Having a bigger brother who does sometimes (not a lot as he too doesn’t like sitting still) do these types of activity has helped Little Bear a lot though. If Big Bear is doing something, Little Bear generally wants to do it too. As I have got really strict with screen time and have been encouraging Big Bear to find other things to occupy himself one evening he did sit down and start doing a jigsaw. Of course Little Bear was in hot pursuit and got one out for himself too.

I had to intervene as I knew that the one he had chosen was too difficult. We swapped it for a very simple one with 4 large pieces. At that stage, it was too much to ask of him that he try to complete it on his own. Little Bear put the first two pieces he found together, couldn’t make them fit immediately, growled and chucked them across the room. It would have been easy to abandon ship at this point. However, I was feeling particularly resilient that day and decided to persevere. “Come on, you can do it” I cajoled, shifting the pieces about so that two that went together were close to one another. Little Bear managed to put them together with a surreptitious jiggle of the bits from me. I made a big thing of how clever he was. Could he stick another piece on I wondered aloud.

I began to get concerned because he didn’t seem at all able to see that we were making a picture and with only two pieces left there weren’t many options. He would try to put a straight edge into a hole or a corner piece into the middle. Each time he perceived himself to be failing at the task (which happened every few seconds), he would lose his temper and throw the pieces and sometimes break the ones we had already done if I wasn’t quite fast enough. Rather than losing my temper (which would be easy to do if feeling frazzled) it made me even more determined that he should feel success and complete the task. I think at one point he got up to wander off and give up. It was hard to know how far to push him but I knew that he wouldn’t think he could do jigsaws unless he actually did one so I pretty much made him come back and finish it off. I gave a lot of help and short of actually putting the pieces in place for him, heavily scaffolded the task. All the while a part of me wondered if I was placing too much pressure on him as perhaps he actually wasn’t capable of doing it?

However, jigsaw finally completed, we were able to high five, applaud and do lots of bows. Big Bear is always fabulous in these situations and spontaneously joined in with the praise. Now that the marathon of completing one 4 piece jigsaw was over I thought we could tidy up and go to bed. However, to my surprise Little Bear had other ideas. He wanted to do another jigsaw. So off we went again. It wasn’t much easier the second time and Little Bear certainly wasn’t a natural at ‘seeing’ the picture and matching bits together. I thought back to the discussions we’d had with the Educational Psychologist in which he said that Little Bear’s language scores were in advance of his visual skills, a statement that at the time I had felt must be wrong. However, was this the type of thing he meant? I had to agree that what I was seeing was concerning and that without a significant amount of adult support, Little Bear would not be able to complete even a very simple jigsaw at the age of 5.

We persevered and geed on by his previous success Little Bear was pretty determined to complete the next one. That is not to say that he didn’t lose his temper or become easily frustrated but with encouragement and a calm approach and I have to admit, an element of me refusing to allow him to fail at it, we completed another and another and about 5 more. In the end I had to call time on it and put him to bed.

I was astonished when in the morning he wanted to do more still. He got out every jigsaw we own one by one and we painstakingly completed each of them until the playroom floor was covered. I tried to teach him strategies to make it easier e.g. that one has a straight bit. It is an edge. It goes at the side. Or that was has two straight bits. It is a corner. I pointed at similarities between pieces. Look, that one has purple on it too or the cat’s tail is missing, I wonder where it is.

I repeated myself a lot. No matter how much I said it, the task didn’t seem to be getting any easier for Little Bear, not least I suspect because ‘edge’ and ‘corner’ were new words for his vocabulary. But I had to admire his persistence. I don’t think there are many children who would want to keep going and going at something they are finding so hard. I kept the praise level high and despite Little Bear repeatedly saying “I’m rubbish at jigsaws” I tried hard to re-frame that thought and help to show him otherwise. Once the floor was almost entirely covered, he began to admit that he might be The Jigsaw Master.

This was just a couple of weeks ago. Little Bear still likes to get the jigsaws out but now he can complete a 30 piece jigsaw on his own.

Nothing about this situation is as I would have predicted it and it has taught me several things:

Firstly, when Little Bear doesn’t appear to be able to do things, is it because he really can’t or because he doesn’t believe he can? I rather suspect that he often gives up at the first hint of failure as his default position is to assume that he can’t. This leads me to think that sometimes putting a bit more pressure on him to complete a task the first time he encounters it is the right thing to do to show him that he can (with a high level of support of course).

However, it is hard to know which tasks to target and whether it is realistic to expect him to achieve them. Taking a hard approach to tasks that he might not be able to complete would be really damaging.

Secondly, I do feel there was an element of Little Bear having difficulties learning the task. I don’t think he was ever going to spontaneously figure jigsaws out by himself. However, it has shown that with specific teaching he can learn and he can generalise his skills pretty quickly. He needs specific teaching of strategies e.g. he couldn’t notice the similarities between pieces so I had to verbalise things that seemed obvious. Once he has been taught these strategies and there has been a lot of repetition of them, he can apply them well. I suspect this is due to differences in his neural pathways, caused by years of neglect. However, just because he can’t learn something the usual way, doesn’t mean we can’t find a way around it and create a new neural pathway for him.

Thirdly, because of the first and second point, Little Bear can’t really be expected to try new tasks by himself. He needs a grown up by his side to keep him regulated, focused and to give him heaps of positive feedback. I really hope we get the EHCP funding we have applied for as this is the very reason why he needs it.

I have found at home that if I get the support wrong the first time we try a task that can be the end of his engagement with it forever, so good support for new tasks is essential.

I am genuinely shocked at his progress with jigsaws and at what he can do now. The fact that he was so motivated to succeed, despite all the barriers, is nothing short of inspirational. He allowed countless repetitions of the task over the course of a few days which will undoubtedly have cemented his skills much more quickly. He even sat and helped with a huge jigsaw of the world that the 4 of us were working on the other day. It was hard for grown-ups but he now believes he can do jigsaws so wasn’t unduly phased. He did brilliantly and Big Bear got bored before he did.

I am now thinking about what other tasks we could tackle in this way. We have managed it with Maxi Hama beads – we had the same “I can’t do it”, “you do it for me” situation the first time we tried those but by the end of the morning he was pushing my hand away saying “I do it myself”.

I have also noticed that once Little Bear has mastered a task his attention span suddenly increases beyond recognition. His teacher called me in the other day as she was shocked that he had sat on the rug in a corner of the classroom for a whole hour by himself doing jigsaws. They had all been muddled up and he had painstakingly sorted and completed them. She had never seen him concentrate for more than 10 minutes on anything and didn’t know that he could.

This weekend, Little Bear spent several hours making Hama bead creations until he had used every single bead and I had to make a hasty Amazon purchase.

Evidently confidence is playing a huge role in Little Bear’s ability to learn. Little Bear, you really need to believe in yourself as much as I do because what you have achieved so far is nothing short of astounding.

And thank you to the humble jigsaw, who knew I could learn so much from you?!

 

 

 

 

 

Jigsaws

Continence Issues

This week’s post has been inspired by a fairly innocuous seeming comment from a friend. He said, in reference to his newly adopted 2 year old, “he’s fully potty-trained now, day and night!”, with just the teeniest hint of competitive parenting lacing his voice. He’s rightly proud of the achievement but I have to confess that part of me thought “oh FFS!”. I think I managed a polite smile and no eye-rolling…

It is just that toileting is something of an ongoing situation here with Little Bear and, at 5 years old, we are fairly far from reaching the golden pinnacle my friend speaks of.

When Little Bear arrived, aged 3 and a half, he wasn’t toilet trained. His foster carers claimed it was because he “wasn’t ready” but in all honesty I don’t think they had really tried. Obviously tackling toileting wasn’t very high on our agenda in the first weeks of placement either, as bonding and behaviour issues were much more pressing. We also identified fairly quickly that we would need to sort out Little Bear’s digestion before attempting to get him out of nappies.

On his arrival he was taking prescribed Movicol for constipation and he created several very effortful and repulsive nappies each day. It was distressing to see the discomfort he was in and at night he seemed to be suffering from stomach cramps (he would writhe about in his bed whilst asleep and sometimes fall out). On reading the Movicol packet we established that this could be the cause of the pains.

We also observed that Little Bear barely ate any fruit or vegetables which might well be accounting for his sluggish gut. It was strange because I always assumed that during Introductions we would be given a list of food likes/ dislikes but we weren’t. When I pressed the foster carers on it they were vague, as though they didn’t really know what he liked. Either way, fruit and vegetables weren’t really mentioned or visible and whenever we gave them to Little Bear he certainly didn’t appear familiar with them.

Another observation was that when we first met Little Bear his tongue had a very unusual appearance: kind of lined and cracked looking. It looks normal now so in retrospect we have concluded he was dehydrated. We certainly didn’t really see him drink and if we tried to give him something he would only take tiny sips.

It became a fairly major priority of mine to get him to eat and drink properly, with the end goal of getting his digestion working properly without the need for Movicol. It was possible that there was a physiological reason for his constipation of course but we just weren’t convinced, given the other things we had noticed.

Tackling Little Bear’s diet wasn’t easy as we also had issues with getting him to sit at the table and actually eat. It turned out though that Little Bear would eat pretty much anything if it was mashed or pureed or hidden by gravy and if one of us would feed it to him. Looking back, it seems we might have still been at the weaning stage. The benefits were that I could get vegetable soup or pureed casserole or pasta sauce with hidden vegetables into him and he was having lots of tastes of different foods without knowing it. I also tried smoothie lollies which worked well until he got fed up of them.

It was difficult because Little Bear did and still does use food as a means of control and whilst I felt it was in his best interests to improve his diet, I was also wary of putting too much pressure on him to eat. I did do things like withhold chocolate or pudding until he had at least tried his proper food or eaten a few bits of veg. I know there are a lot of opinions out there about whether this is the right/wrong way to approach things but it turns out that healthy eating and the wider impact of it on health, alertness and behaviour was a big deal for me. It wasn’t something I could overlook.

I also found Little Bear’s behaviour at mealtimes one of the most challenging things to manage in a calm way. Everybody finds certain behaviours particularly triggering and for some reason this is what really pushed my buttons. I have had to work hard at finding a happy balance between meeting Little Bear’s nutritional needs and working on his table manners. As much as it pains me that he gets up every 3 seconds and will do anything but eat at the table, I have recognised that sometimes it doesn’t matter what else goes on, as long as he has eaten something. Little Bear is perfectly capable of feeding himself and sometimes he does so without issue but there are other times where no matter how infuriated I get, he just won’t. On those days it is more important that I swallow my issues and feed him, as then he will eat and if he has a full belly the world is generally a better place. I can just thank my lucky stars that he no longer screams, throws his food about the room or head butts the table.

Anyhow, after a couple of months, we had managed to successfully wean Little Bear off the Movicol and he had developed a regular, healthy bowel habit. It was around this point that we turned our attentions to toilet training. Little Bear knew when he needed a poo and was able to say so, so it didn’t take long to get him into the habit of using the potty. It would have been good, given he was nearly 4, to go straight to the toilet but he was quite wary of it so I went with what he was comfortable with and made that transition later.

It wasn’t long into potty use that Little Bear wanted “big boy pants” so we just went for it. In the early stages everything seemed to be going well. Little Bear was sorted with his bowel movements from day 1 and if we prompted him to go for a wee regularly we didn’t have too many wetting accidents. It was only when we tried to move on to Little Bear going off to the loo as and when he needed it that it became apparent there was a problem: he didn’t ever seem to need it. However, he clearly did as he was wet all the time. Little Bear didn’t seem bothered by this and didn’t tell us. I wasn’t always sure he was aware he was wet.

It feels to me as though some sort of developmental window has been missed so Little Bear has never developed the sensations warning him he needs to go and has grown so used to sitting in a wet nappy that being wet feels normal.

We have had to manage this by going back to regular prompting to help Little Bear stay dry, even though he is not always keen to comply with the requests. We have bought him a special watch, which you can set to vibrate at certain times to remind him to go to the loo and to help him become more independent in his toileting. I do think it’s good and I would recommend it but ideally your child would want to be dry and would be more motivated to do what it tells you than Little Bear. It worked well for us for a while but then he couldn’t help pressing all the buttons (even though it does have a child lock system) or constantly taking it off and losing it. As he is a little bit oppositional the fact that it was telling him to do something just made him want to do the opposite.

However, we have persevered and worked on Little Bear telling us when he is wet. If he does tell us, we praise him for that and try not to comment too much on the actual wet pants. He has made lots of progress with this and mostly does tell us now if he’s had an accident rather than us having to detect it from the smell!

We have also figured out that the first warning sign Little Bear gets is when a dribble of wee comes out. It appears that he can then stop the rest from coming until he chooses to release it. We are working on Little Bear taking himself to the toilet after the first dribble rather than just doing it in his pants. This is definitely improving and just this week, over a year into toilet training Little Bear has said a couple of times that he needs a wee and taken himself off for one. This is a big deal for him and I’m grateful that signs have started appearing to suggest we will eventually get there.

As we are not yet secure in day time dryness, we haven’t even thought about attempting night time dryness. Little Bear’s pull up is completely sodden in the morning and occasionally overflows during the night so I know he isn’t ready.

As with many things I write about Little Bear, none of this is his fault and I can’t help feeling sorry that he hasn’t been afforded the same chances as his peers, who were probably beginning their toileting journeys 12 to 18 months before he was. So, whilst I’m glad for my friend that his little one is gifted with exceptional bladder control I do wash a lot of urine-soaked clothes and bedding and hopefully you will forgive me for also being a teensy bit irritated by his comment.

Continence Issues

Seeing the Educational Psychologist

I recently requested a progress meeting with school to discuss how Little Bear is getting on. I feel lucky that so far the staff have been very approachable and accommodating. We had the meeting and as usual were able to identify progress and also areas that we want to work on. During the meeting Little Bear’s teacher wanted to ask me something: would I consent to him being seen by an Educational Psychologist (EP)?

She explained that the EP had made routine contact with school to check whether they needed to consult regarding any pupils this term. The SENCO had thought of Little Bear. What did I think?

I had a couple of initial thoughts, most of which I kept to myself. Firstly, eek! Out of the whole school of almost 200 pupils Little Bear was the first child that they thought of. In fact, I have since found out that he was the only child. What did that say about the severity of his needs? Those old feelings around whether I really do accept his needs, just as they are, were getting a little airing.

My main thought though was one of cautious gratitude. I couldn’t see any negatives of involving another agency and if anything it could lead to positives such as more tailored input or dare I even think it, funding. My previous experiences of working alongside an EP Service elsewhere were of an extremely stretched and in demand service. Children frequently waited long periods to be seen and schools had to juggle and prioritise the most needy to maximise their allocation of time. Once a school’s EP allowance ran out, children just had to wait, irrespective of their level of need. Given that experience I felt lucky that in his second term at school, Little Bear was already getting an opportunity to be seen, without me even having to ask for it: no battle needed.

I consented straight away then instantly became anxious that the appointment might happen without any of my involvement (not that I’m a control freak!). When I worked as a Speech and Language Therapist (SaLT) in an NHS Department I worked closely with the EP’s. I knew them and they knew me. We had a mutual respect for one another’s work and often spoke regarding specific children. Occasionally we would have some healthy professional debate (AKA a polite argument), usually when I was putting my neck on the line about a child needing a specific provision that nobody wanted to pay for. However, most of the time we worked in partnership to make things happen for children.

It was feeling very strange to be on the other side of this equation. Would I be respected and listened to in my role as parent? Would I be involved at all?

Increasingly I have also found myself taking the role of Little Bear’s SaLT – out of necessity to fill the gaping void left by our local NHS Service. I wondered whether my opinions with my SaLT hat on would be considered or valued when the EP came either.

When I asked Little Bear’s teacher whether we might be able to meet with the EP or be part of the consultation when the time came, she replied with a brisk “I wouldn’t have thought so”, confirming my fear that they thought I didn’t have anything to contribute as a parent or as a professional. Feeling a little disheartened and somewhat undervalued I felt as though I would just have to go with it. I can see how easily you can become disempowered as a parent, particularly one of a child with additional needs.

However, something changed somewhere and a week or so later I got an e-mail inviting me to attend the meeting with the EP. Greatly relieved I then began to wonder what the EP might be like. Although not meaning to stereotype I assumed it would be a middle-aged no-nonsense lady.

This week Grizzly and I have attended the meeting. It turns out that the EP was actually a young man and he was lovely. He was very good at listening to us and tweaking his advice accordingly. He wasn’t in any way judgemental and we did feel like valued members of the meeting. I think that is so important.

We had been told that the EP would have seen Little Bear prior to the meeting and would be feeding back to us. However, in reality it was a consultation meeting and the EP had never met Little Bear. Apparently we would create strategies during the meeting and then reconvene to review them before deciding whether Little Bear would require further assessment or not. I think school might have felt a bit fobbed off by this.

In the meeting, Little Bear’s teacher talked about his educational levels, his behaviour in the classroom (generally a little less challenging than at home) and his attitude to learning. I had expected much of the focus to be on his communication difficulties and ways to manage that within his learning. However, we talked a lot more about his social communication, his ability to identify and regulate his own emotions and ways to develop his skills in these areas. The EP seemed versed in early trauma and attachment and was interested in our perspectives. He was clear on the links between Little Bear’s early life experiences and his approach to learning now. We talked about how he can be oppositional and how the very fact of you wanting him to do something makes him not want to do it. We talked about him not showing his full ability and sometimes making purposeful errors. We talked about Little Bear easily entering fight or flight mode and how that can lead to him lashing out.

Whilst acknowledging and problem-solving these things with us the EP was not alarmist. At the moment the challenges do not seem to be things that we cannot overcome. The strategies seem practical and hopefully fun for Little Bear – including an adapted version of Lego Therapy to help build his resilience and ability to play with his peers with less adult support. We had to adapt it because Little Bear doesn’t always have the resilience for Lego so school have agreed to try it with Duplo instead.

A lot of the strategies were around Emotional Literacy – giving Little Bear a wider emotional vocabulary; helping him to identify his own feelings; giving him strategies to use when regulating himself is difficult. School are going to identify a safe space for him to retreat to when he needs it and will support him in using it appropriately.

We both came away from the meeting feeling pleased.

Another bonus for me was some of the comments the EP made. He said he felt we had “already done a lot of psychological unpicking” and that we understand Little Bear’s needs well. At the end he commented that he had enjoyed listening to our story and was pleased to hear so many positives in our descriptions of Little Bear.

It is very easy to forget how hard we work (I mean all adopters) and how much time and effort we put into trying to understand our children and what makes them tick. It is easy to forget that we are experts in them. If I went on Mastermind and my specialist subject was Little Bear, the only other person in the world who could beat me would be Grizzly. Nobody knows him like we do. It is hugely beneficial and confidence-boosting for that to be acknowledged by a Professional person working with your child.

I also found it surprisingly emotional to tell our story (the EP knew nothing more than Little Bear’s name so we had to fill him in on his background and progress to date) and to hear Grizzly sharing parts of our story. In the day to day craziness of our lives, it’s so easy to forget the highs and lows of the rollercoaster ride we’ve been on. At one point we spoke about how Little Bear used to bang his head and I had honestly forgotten that he used to do that. I felt proud of us as a couple for having tackled so many things in such a joined up way. As a parent it is easy to fall into a mode of constant self-deprecation but occasionally you have to allow yourself some credit. Perhaps we are doing an okay job after all.

At the end of the meeting we booked in a review date. The EP said he felt he knew Little Bear quite well now and didn’t feel the need to actually see him. Grizzly said he felt an observation would be useful and so did Little Bear’s teacher. She commented that in all her years of teaching, she had never taught a child quite like Little Bear! And I don’t think she meant because of his background as she has 4 other adopted children in her current class, irrespective of any who have gone before. I do know what she means; he is a complicated little chap.

So observation is going to happen and the EP is going to attempt some 1:1 assessment. Oh how we laughed when he said he would allow 1 hour for that! Little Bear finds 5 minutes of an adult-directed table top activity challenging. I would love to be a fly on the wall. I guess we are going to find out what the poor EP is really made of..

 

 

 

 

 

Seeing the Educational Psychologist

Too fast, too hard, too loud

Little Bear’s sensory needs can pretty much be summed up by the title of this post. Why walk if you can run instead? Why move things gently if you can slam them? Why say things quietly when you can shout?

Like many children who have experienced early neglect, Little Bear does have some quirks in his sensory system. However, as evidenced by the fact that it has taken me 51 posts to get around to talking about it, his needs are not that severe in the grand scheme of things. I’ve certainly met children who are more sensory seeking; whose whole environment needs to be changed to help them get the sensory input they crave; who cannot engage in everyday tasks in a functional way because they have to incessantly hunt for sensory stimulation.

Little Bear can function well enough in his everyday life, though we do notice that his sensory system is a little different at times.

I think we mainly notice it when we have to overuse the word “gently”. Little Bear finds it hard to grade his movements, always going in too hard. I constantly have to remind him that if he bashes his toys together they will break. Little Bear is what you would probably describe as “heavy handed” and is fairly prone to breaking things. It is no longer purposeful but usually due to accidentally pulling/ pushing/ pressing/ bashing too hard. He has written off many a felt tip pen and I have to buy the kind with an indestructible nib. We always have to consider the robustness of a toy before purchasing anything for him.

Little Bear often comes in with too much force for cuddles too, frequently head first. We must be used to dodging but if someone is caught unawares it tends to really hurt them whereas Little Bear hardly feels it. I guess all the head-banging he used to do may well have contributed to this. On a positive note, we have noticed that Little Bear seems to be getting more sensitive to touch on his head and does frequently cry now if he accidentally bashes himself (his head is currently at door handle height so he seems to bash it quite often) which is a far more ‘normal’ reaction than not really noticing that he’s injured himself.

The surprising thing is that Little Bear can be really gentle when he tries: he will stroke your face or stroke the cats with the right amount of pressure but during play or when he isn’t consciously thinking about it, his default is to crash and bash.

Little Bear seeks movement too and can often be found bouncing/ jumping/ hanging upside down. As soon as we get outside he has a tendency to run. We are quite outside-y as a family so Little Bear gets plenty of exercise as part of day to day life which probably helps to regulate his system. However, as I’ve got to know Little Bear better I have realised that when he starts bouncing and spinning all over the place it is not necessarily a sign that he needs more exercise. Sometimes it seems to be more of a self-stimulating activity that he uses when he’s tired or getting over-excited. It usually means that he needs calming and a rest. Giving him more movement at this point is likely to tip him further into over-stimulated territory.

Little Bear is more easily over-stimulated than your average child and when he gets to that point, he cannot yet bring himself back from it. There will undoubtedly be a period of him being generally out of control followed by a meltdown. As his parent I have to be vigilant of his level of sensory alertness and I have to intervene to stop him from getting to that point. I think it can sometimes seem as though I spoil his fun, especially when it comes to rough and tumble play. However, I can see him getting more and more excited and I know that he isn’t able to regulate this aspect of himself yet. He needs external help to identify when he has had enough and to find ways appropriate ways to calm down.

Little Bear is also pretty loud. I’m not sure I can totally blame his sensory system as Big Bear is one of the loudest children you could meet so he might just be following his brother’s example! However, Little Bear is loud within his own right. In his nativity play this week, he understandably struggled to learn the myriad of words needed to be able to join in with the songs but what he lacked in clarity, he certainly made up for in volume!

Interestingly for me, with my Speech and Language Therapy hat on, Little Bear is also too noisy in his speech. Most sounds in English have a voiced (noisy) and voiceless (quiet) counterpart. For example, ‘t’ and ‘d’ sounds are made in exactly the same way in your mouth. The only difference between them is that to make a ‘d’ sound your vocal cords vibrate but for a ‘t’ they do not. Therefore ‘d’ is really just a noisy ‘t’. Little Bear replaces almost all the quiet sounds with their noisy partners e.g. he says “gat” instead of ‘cat’, “bear” instead of ‘pear’, “do” instead of ‘two’. It is one of the reasons his speech has such an unusual quality to it and why he is so difficult to understand.

Little Bear obviously has quite significant speech and language difficulties but I do wonder whether some aspects of those difficulties are due to the way his sensorimotor system has developed.

So yes, Little Bear has his sensory quirks and at the moment he requires external help with staying regulated. However, he is not the only one with a quirky system. A little bug bear of mine (rant alert) is that people often talk about “sensory integration difficulties” while seeming to forget that we all have sensory integration systems that are constantly working to process the different stimuli that come our way. We all need to process and respond to movement, touch, smells, tastes, sounds, visual stimuli and challenges to our balance and position in space. We will all have different preferences when it comes to each sense. Some people like moving fast and being upside down and consequently love rollercoasters. Other people hate them as they make them sick and dizzy. Some people love spicy food, the spicier the better; others prefer more bland cuisine. As a migraine sufferer I am particularly sensitive to light and changes to light and will find things that others wouldn’t even notice very uncomfortable.

Everyone has a sensory integration system and everyone’s functions a little differently. Although I have described Little Bear’s in a fair amount of detail, I don’t view it as a huge problem, just a part of ‘normal’ sensory variation. Little Bear’s is different to mine which is different to Grizzly’s. As long as everyone is getting what their system needs and not too much of the things it doesn’t, we are generally ok.

I think true Sensory Integration Difficulties exist when a child can no longer function at home or in the classroom because of their need to seek or avoid certain stimuli. That is when referrals and further help are needed.

Thankfully we are not at that point. However, if you meet us you’ll hear us before you see us; brace yourself, mind your head and don’t lend Little Bear your felt tips. Oh, and I’ll sit with my back to the window ta, the light is a bit weird.

 

Too fast, too hard, too loud