Conversations

Firstly, I’m sorry, I’m in a bad mood at this moment and I rather suspect it will be evident as this blog post progresses. The reason for my mood will also transpire.

Earlier in the week, we had some workmen over to do a job for us. I didn’t know them but we got chatting, as you do. Within minutes I had learned that the man’s son had ADHD and they’d had difficulties with his schooling. Feeling an immediate kinship, I felt I wanted to tell him that I also have a son and he also has some behaviour and learning needs. I was cautious though because I distinctly remember sitting in adoption preparation groups doing a practical exercise on who you should and should not share information with about your child being adopted. Workmen were a clear ‘no’. They knew where you lived: they did not need to know that an adopted child, who may be vulnerable, lived in your house. This was in the back of my mind but I also knew that this man had walked a walk which I understood. I decided to trust he was a decent bloke and shared that I also have a son with needs.

We shared some similar anecdotes and then he asked me what diagnosis, if any, my son has. I knew this would happen and this was the bit I had considered avoiding. However, I didn’t. I explained he’d had a traumatic start in life, was now adopted and his diagnosis was Developmental Trauma. The man understood what I was talking about and it turned out he knew an adoptive family well and their son had similar needs. It also transpired that the man himself was adopted so we chatted about that too.

It was a conversation I perhaps shouldn’t have had, but it was a thoroughly positive experience.

Today, we had a meeting with an Educational Psychologist about Little Bear. This was an official conversation I had to have but ironically, this was the conversation I wished I could undo. As I’m sure you’ve guessed, this is the reason for my furious mood. As a parent of a child with additional needs, when you have a meeting about those needs with a professional who is supposedly more knowledgeable than you are, the very least you can reasonably expect is to come away feeling understood. You would also hope to come away with some useful tips or strategies. You would not expect to come out sweaty-angry because things have got a little heated.

We’ve seen the Educational Psychologist (EP) before (see Seeing the Educational Psychologist and SaLT, EP & an Assembly ) and despite me having some misgivings, it went brilliantly. The man in question was knowledgeable and trauma-informed. Unfortunately, that EP has moved on and we have a new one.

Things started okay with this fellow. He’d done an hour’s observation first thing then we had met for a consultation, with the SENCO, class teacher and Little Bear’s TA also in attendance. The main purpose of the meeting, in my mind, was to review where we were up to in terms of re-applying for funding going forwards. I am fully aware that funding is not within the jurisdiction of the EP. However, I have been in enough of these situations to know that as a professional, you are often called in to inform a funding decision. You make an independent assessment and you write a detailed report detailing a child’s needs. It wouldn’t bother me in the slightest if people wanted to discuss funding in my presence. I wouldn’t be able to say whether a child should have it or not but I would be very clear about their needs and what measures are required to meet those needs appropriately. I thought the EP would do the same.

Instead, he was so touchy about funding (even though we didn’t mention it any point) that I came away believing he had a (not very well) hidden agenda. It meant that he wouldn’t give a straight answer about what level of support he believed Little Bear to require and wouldn’t comment in any detail on his needs. He kept saying, “I have no influence on funding”. We kept saying, “We know, we aren’t asking you to comment on funding”. At one point Grizzly said, “So, are we on the same page?” (in relation to a specific point) and the EP replied, “I’m on my own page”. When we tried to establish what that page was, he wouldn’t tell us. It was most baffling.

I also felt he had little to no knowledge of trauma/attachment. It was when we started discussing independence that things started to unravel.

The key reason that Little Bear has 1:1 support now is due to his extremely poor emotional resilience and lack of self-confidence. I’ve talked about it before and I think my post Jigsaws illustrates my point most powerfully. The EP evidently thought (though he only said so cryptically) that Little Bear has too much support and does not do enough work independently. He felt independence in his learning was a priority. I disagreed with this because I feel his biggest priority is building resilience, a love of learning and the confidence to tackle new tasks when faced with them. When those things are in place, he will manage independence. I struggled to get the EP to understand this.

He kept saying that Little Bear can be given a task he knows how to do first to break him in gently to a task he’s never done before. That makes sense in theory but what he doesn’t account for is Little Bear’s alertness to new tasks and the fact that, without the nurturing support of a trusted adult by his side, Little Bear will baulk at the task and not be able to begin. The EP, in his uninformed wisdom, reckons that with practise of working independently, Little Bear will learn to complete tasks alone. He won’t if he doesn’t have the requisite skills or belief. He will disengage and learn diddlysquat.

The EP went on to patronise us all by saying that children need to experience success in order to build resilience. I KNOW. I feel as though I have said it a million times myself. However, Little Bear currently needs adult support to begin and engage with a task. He needs an adult to support him to stay on task and reach the point of completion and success. Without that support, he will not experience success. You can’t remove his safety net and expect him to get there by himself.

I pointed out that we put him in challenging positions all the time. I didn’t labour the fact that we tirelessly work to match activities to ability (see Our Just right challenge) and carefully dampen or increase our level of support to ensure his success. He said, “But do you though? Do you do it enough?” It was an open question to us and school but I would like to have seen him take Little Bear canoeing when he was still in the feral phase or take him for a skiing lesson or horse-riding or on a plane or on a skidoo or a bike or supervise him with a sharp knife or a power tool. We have done all of those things and more and I did not appreciate the inference otherwise.

Grizzly had done well keeping fairly quiet throughout this debate and I wondered if it was just me. However, the EP went on to suggest a strategy of “planned ignoring” for when Little Bear interrupts or shouts out in class. Grizzly stepped in to point out that there is an attachment reason behind this behaviour and Little Bear shouldn’t be ignored because, if anything, it would inflame the problem. He needs to know the teacher hasn’t forgotten him and is holding him in mind, even if shouting out is not an appropriate behaviour. The teacher’s approach of saying; “That’s a lovely answer. I’d love to hear it when it’s your turn/ when you have your hand up” feels much more appropriate.

Overall, I felt the strategies the EP suggested were extremely basic and I felt defensive of the school who are already working hard and employing so many more complex strategies. The suggestions he made indicated a lack of knowledge and understanding of the complex behaviours we all experience.

The final straw, which we were unable to resolve, came when he said he had made a tally of the number of times Little Bear’s TA intervened to help him during a task. Apparently it was, “considerably more often than she intervened with others”. I queried this because Mrs. C is employed with Little Bear’s funding as Little Bear’s TA. I would expect her to help him more than others because that’s her job. I couldn’t understand the point of it as a statistic. The EP seemed to suggest the number was meaningful so we asked him what his interpretation of the number was – did he mean that Mrs C steps in too frequently or that Little Bear requires a high level of support? He refused to be drawn, saying he is there to gather the information, not to comment on it. He then returned to his rhetoric of not being allowed to comment on funding.

The Head, who was working quietly in the room, but not in the meeting, said, “They aren’t trying to trick you, I think they just want an answer” to which, there was no answer.

The more I reflect on it now, the more bizarre it seems. I get the impression this EP is used to coming to meetings, asking lots of questions, writing down the answers and going away again. I don’t think he is used to informed parents who ask difficult questions of him. I’m pretty sure he went away thinking we are a royal pain in the backside but I don’t really care. It isn’t okay to provide mediocre or downright rubbish services to parents because they don’t know otherwise. Services should be excellent because these are the most vulnerable children in our society. What we do now and what support is put in place for Little Bear now is going to be crucial for his life chances in the future.

I know people are under pressure because of funding cuts and I suspect he did have an agenda along those lines but children’s needs are their needs, irrespective of funding and I’m not sorry that I will fight for Little Bear’s needs to be met. I’m sorry we crossed paths with that particular EP and I’m sorry we have to have another meeting with him in a couple of months. I suspect it would have gone considerably better if we let our workman from earlier in the week chair the meeting.

I am sure it will all work out and with a child with additional needs, a meeting or three like this are par for the course. But they shouldn’t be. It isn’t ok and our children (and us if we’re honest) deserve more.

I do want to give credit to school though and specifically to Little Bear’s teacher, who has really listened and changed his approach and referred several times to ‘doing things differently’ in the meeting. I am extremely grateful to them.

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Conversations

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