Being an SEMH-needs family

I suspect this blog is going to be hard to write without coming across badly. I know what I want to say, but it will require an honesty most people may not be comfortable with. You see, when you discover you have a child with SEMH (social, emotional or mental health) needs, you enter this weird dark underworld where reality shifts a little, standards become idiosyncratic and parenting as you thought it might be is turned on its head. You don’t just have a child with some needs; you become a family with needs. Each one of you now has SEMH needs to think about, contend with, manage. You might not have them inside of yourself and I’m not for one minute saying that those of you around the person with the needs suffer as they do, but you do all now experience life with SEMH needs in your pocket.

Some things go without saying (but I shall say them, for clarity): everyone loves the person with SEMH needs. They remain your child, brother or sister, grand-child, niece or nephew and you love them as such. They remain a fun, kind, clever, gorgeous human. Their SEMH needs do not define them and will always be a larger, heavier, more cumbersome sack for them to drag around than for any of you.

Nonetheless, those SEMH needs irrevocably affect all of your lives to one degree or another. This is the bit that people doubtless find hard to talk about because they fear the judgement of those who haven’t walked such a path. They fear them suggesting that the facts in the above paragraph can’t be true if you’re saying what you’re saying, or are directly disproven by your honesty. That if you say that living with a child with SEMH needs is hard work, you are making it about you, when it clearly should be about them. That if you say you are, at times, embarrassed by their behaviour, you are evidently a disloyal parent.

Why? Why isn’t ok to be honest about these things if they are true? Clearly nobody wants to disparage their child and writing or saying disrespectful things about them is never ok. But what about the need for better understanding of such children and such families? How can we expect the public or teachers or other parents to be more understanding if we don’t try to explain to them what this weird underworld we inhabit is like?

Recently, I’ve felt a few things that I suspect many parents of children with SEMH needs feel, but aren’t comfortable being honest about. I’ve felt as though I were being forced deeper into the underworld by these issues; even keener to hide. But my child with SEMH needs is just as entitled to his life experience as anyone else. I am just as entitled to my parenting experience as anyone else. BB is just as entitled to his own particular feelings about being a sibling as any other sibling. Our experience is different. It sets us apart. It complicates things. But it shouldn’t make us lesser. We shouldn’t have to cower in the underworld.

So, you know me, here comes some honesty.

One thing that people don’t talk about is that having a child with SEMH needs make you all individually and collectively more visible. If you’re all together, the noise and behaviour itself tend to draw attention. Everyone always knows you are there. You never melt into the background or pass through an event or situation unnoticed. You are certainly noticed and not necessarily in a good way.

It can be hard not to imagine that everyone in the vicinity is looking at you, observing you, scrutinising how you handle the behaviour. It is easy to feel judged. I know that all parenting involves an element of this but SEMH parenting is by definition more visible. SEMH parenting means that it’s your child drawing more attention than everyone else’s. It is your child breaking the rule, having the tantrum, shouting, throwing something.

It is quite a skill to remain calm in such circumstances and to actively filter out those around you. It takes balls to think that you do not care for their judgement, stares, tutting; that you care only for your child and their needs and you will proceed with supporting them in the way you know works best, despite that most likely being at odds with the ideas of the multiple eyes observing you. The act of forging forwards as you know best in such circumstances is far harder than it sounds. It can require a strength you don’t have and a don’t-give-a-fig-ness not naturally associated with your personality.

It is hard, while we’re at this honesty game, not to sometimes feel embarrassed. We’re British. It’s in our nature to stay calm, maintain a stiff upper lip, act politely and with reserve. Children with SEMH needs don’t tend to have got this memo. SEMH needs don’t discriminate for different audiences – they are what they are, wherever you are. Your child’s behaviour can all too often be completely at odds with the unspoken set of behaviours expected by all, but also by you, in a particular situation. There are times, frankly, when their behaviour is mortifying and you wish you had an invisibility cloak or teleportation device. It is incredibly difficult to parent in the best possible way for your child in these situations, because that way is probably not immediately compatible with the unwritten rules either and consequently you find yourself hissing ‘stop it or else’ type threats at them in a poorly disguised whisper. This isn’t useful, and you know it, but your face is glowing like you’ve overdone a sun bed and sweat is collecting in cold puddles in your arm pits.

Being in public, with your child with SEMH needs can be exquisitely uncomfortable. (And by saying this, no, it doesn’t mean that I’m not also extremely proud of him every single day.)

But at least in public you have relative anonymity – a fact you can cling to, when things go south. Not so, within school. SEMH needs make your child far more visible than other children. When your child is the one who gets sent to work in other classes, or has their card changed to red again or their face moved onto the sad cloud, or the one who gets suspended, or sent to the Head, or put on a behaviour chart, or taken out of class to work, or has their desk in a corridor, or gets into fights, or heckles the Head in assembly, or tries to escape, or stands in the urinal, or throws something, or hides under the teacher’s desk, or swears in class, everyone knows who they are. Everyone. When this is your child, you can easily guess that households around the vicinity hold teatime discussions about what your child has been up to now. They gain a certain infamy.

I guess everyone handles this differently, but I handle it by trying my best to remain invisible myself. I don’t talk to other parents, I don’t go to parties. I keep away from situations that will further alert me to his infamy. I suppose I do my best to pretend it is happening – what I don’t know can’t hurt me. It helps me to focus on my child, and what he needs and not to care what anyone else thinks, whether indeed they think anything. It’s like I go around with a protective shroud between me and the rest of the parents and as long as I don’t interact with anybody, the shroud does its thing.

Then, a situation or conversation will arise, as one did recently, that will remind me that I am not paranoid, people really are discussing him at their dinner tables. It’s a very weird feeling, knowing this is the case. It’s a mixture of defensiveness (back off, you don’t know him, you don’t understand him), acute discomfort and a realisation that when you walk across the playground being purposefully aloof, that people know exactly who you are and what your child has been up to. It makes you infamous by association. I don’t want to be infamous, or even famous; I want to be invisible, but SEMH needs have eradicated even the possibility of that. It is not a great leap to imagine that we, the parents of the infamous one, are also subject to dinner time debate. Perhaps they thrash out the myriad ways we’ve clearly failed him, for him to be behaving this way.

I think most parents questions themselves frequently and wonder if they’re doing a good enough job. But when your child is swinging from the lampshades and ignoring every request you make, it is far too easy to descend into self-doubt, especially if your patience starts to fray and you find yourself losing your temper. I find it is shockingly easy to make the leap from thinking I know what I’m doing to berating myself for my evident parenting failures, along with the rest of society. It is far easier to imagine we’re parenting well when our children are behaving well. And instead of explaining the transgressions with their actual cause – the SEMH needs – we are more likely, as parents, to think we should have been more therapeutic or calmer or somehow better at this parenting lark.

This is partly why I think we ought to be honest about the realities of SEMH parenting. It’s really bloody hard. It’s hard on a cellular level and many of us expect superhuman levels of self-control and parenting wizardry from ourselves on a daily basis when actually, it’s pretty unobtainable, for the key reason that caring for a child with SEMH needs is a big, difficult, complex task. A task which I think should be better understood and supported by society as a whole.

Perhaps if discussions around dinner tables focussed on what our child’s behaviour might mean about the life challenges they’ve had or what they need their friends to do differently to support them, attitudes might be different. Perhaps if people didn’t approach SEMH presentations with an urge to blame, us parents may not feel so isolated. Perhaps if onlookers were telepathising supportive vibes instead of judgement, we might not be so stressed in public places. I think it’s fair enough that the general public don’t really understand what it’s like or why our children behave as they do, because there aren’t many means of becoming informed, unless they have personal experience of SEMH issues. So, to some extent, it is incumbent upon those of us living it to share those experiences and help people to become better informed. Hence, you know, this blog.

 

I also want to talk about the fact that it is not just parents of children with SEMH needs who feel scrutinised, but siblings too. If you happen to attend the same school as your brother or sister who has gained infamy through their SEMH based behaviours; you are also infamous by association. No doubt you get kids coming to you in the playground, informing you of what your sibling has done now. Perhaps sometimes they are unkind or judgemental or ill-informed. Perhaps they laugh. Perhaps they find it a sport. Perhaps you witness others handling your sibling and their behaviour in ways you don’t think are fair or appropriate or commensurate with what happened. You don’t want to be associated negatively with their high jinks and rule-breaking – you don’t want people to think you are like that too – but you love them, and you can’t stand to see them mistreated either. You are willing to compromise your own reputation to defend them, if necessary. You love them but they embarrass you and draw unwanted attention to you and sometimes, you wish they didn’t and you like them a little less but you feel guilty for it, because they’re still your sibling and they can’t help it and you know that really. Your feelings towards them can be very complicated and overwhelming.

I think being an SEMH family can be a lot for siblings. It requires an emotional maturity beyond their years. Those skills we struggle with as adults – of trying to be Teflon-coated to repel the judgement of others – are challenging and often unachievable for us, despite years of practise. Siblings of children with SEMH needs have to employ those same skills in childhood. It’s an ask which I suspect is routinely underestimated.

As parents, this is another element we have to be aware of – are the siblings of our child with SEMH needs ok? Are we appropriately supporting them to wander around with SEMH needs also weighing in their pocket?

 

To conclude, life as an SEMH needs family has all these extra layers to it, over and above supporting the child who has SEMH needs, as though those needs radiate out from the child, creating ripples far beyond them. There is a visibility to it which has us trying to hide in the shadows. It can lead to uncomfortable and unwanted feelings such as embarrassment, misplaced anger, guilt. It can be isolating and vulnerable. It makes you grow a thicker skin, bundle yourself in a protective shroud, but beneath that, you can’t help but be wounded by the judgement, blame and insensitivity of others.

 

I don’t want to end on a negative, because being an SEMH needs family is not all doom and gloom. I want all the above to be better understood, but I also want people to know that our family is pretty cool. Yes, we’re different, we’re loud, we struggle with rules, we can be a little shocking to behold but we have a lot of fun. We all work incredibly hard to overcome the challenges we’ve been dealt. We are grafters, survivors, persevere-ers, overcome-ers. We are out and about doing things despite the SEMH needs. Wouldn’t it be amazing if that were cause for celebration? If we could all focus on what our son can do and all the brilliant things he achieves, instead of feeling we have to apologise for his challenges.

 

 

 

 

 

 

Being an SEMH-needs family

A Confession

Readers, I have a confession to make. It is something I expect Society will disapprove of. It will certainly be frowned upon, if not judged very negatively, by most. I’m just going to spit it out: Little Bear still has a dummy.

I suspect this is controversial for two reasons. Firstly because Little Bear is 5, on the nearer to six side of things, and typically children give up their dummies whilst still pre-schoolers. Secondly, because I, his mother, am a Speech and Language Therapist (SaLT) who not only should know better but should be militantly opposed to dummies full stop.

It may make me a rubbish SaLT (I’ll take the chance) but I am not opposed to dummies. I certainly think they have their uses. Big Bear had one (ok, about nine) and was particularly attached to them, often sleeping with one in his mouth and one in his hand.

Initially, I tried extremely hard not to give him one, thinking it would make me a bad parent (as well as a bad therapist) if I did. However, after about 7 weeks of following the NHS guidance to demand feed, I had been feeding Big Bear around the clock and when I wasn’t doing that he was latching on to anything and everything (my arm, Grizzly’s nose etc.). I had to acquiesce to save my sanity, as well as my nipples.

Looking back, there are so many things to beat yourself up about as a new parent that I genuinely don’t think a dummy should be one of them. There are two main risks with dummy use: the impact on the infant’s teeth and the impact on their speech. Unless a child is plugged in constantly (wrong on many levels), an average amount of dummy-use is really only damaging to speech if a child speaks with the dummy in their mouth*. I have found that fairly easily solved with a ‘no talking with your dummy in’ rule, which I do stick to religiously. It hasn’t hampered either Bear from being a chatterbox. The dummy hasn’t stopped them talking, they have just got used to taking it out of their mouths to do so.

As Big Bear approached three years of age, his speech was developing well but I began to notice a change in his teeth. They were starting to angle outwards a little. It was obvious it was the dummy and it had to go. Although I knew he didn’t need it, I did know that he liked it A LOT and I was pretty trepidatious about the big withdrawal. Exactly how many nights would he scream for?!

I knew cold-turkey was really the only way but I wanted him to be as prepared as possible. We talked about dummy fairies and invented some sort of fable about what good purpose they put discarded dummies to (I can’t quite remember the details). I’m not ashamed to say we also used a good portion of bribery – those dummy fairies give a good reward! We left all the dummies outside on a plate on the allocated day (because clearly the fairies live outdoors) and the next morning a Lego truck had magically appeared in their place. The deed was done.

In reality we had one or two nights of Big Bear struggling to get to sleep but there was none of the fuss and palaver I had imagined. The big dummy withdrawal was, dare I say, pretty easy.

Several years later when we were in the process of Matching with Little Bear, it transpired that at the age of three and a half, he still had a dummy. Tut, tut, we said. How awful! He really should be rid of it by now! Just give it to the dummy fairies: how hard could it be?!

In our naivety I think we even suggested the Foster Carer’s should do the deed before he came to us.

The outrage! A three and a half year old with a dummy!

Yet, here we are, over two years later, the three and a half year old is now nearly six and he still has the dummy. So what has gone wrong?

Have I been too chicken this time?

No. Not too chicken. A little older, a little wiser and a LOT more tuned in. I haven’t taken Little Bear’s dummy away because he still needs it. Along with his blanket, it is the only thing that is guaranteed to calm him.

Usually the dummy and blanket live in his bedroom and Little Bear only has them after his bedtime stories when the light is going off. Most of the time he half forgets about them and can fall asleep without them. However, there are still days when he pads sheepishly downstairs with them, lays curled in the foetal position on the sofa and disappears off into his calm place for a couple of hours. If I didn’t let Little Bear have his dummy on that sort of day, he would prowl about, itchy, discontented and ill at ease. He would seek trouble, struggle with instruction and generally have a very difficult day. The relief and release when he gets the dummy is almost palpable.

When Little Bear was younger/ newer to our family we daren’t go on any car journey without the dummy and blanket secreted in my handbag “just in case”. There were months when they were literally the only way to calm him (though there was also a risk he’d lob it at your head).

We have many more available and effective calming strategies now and don’t take the dummy anywhere any more (apart from on holiday). However, when Little Bear starts wandering around the house with it, it is the equivalent of a red warning light. It means that Little Bear is not feeling good. We might not know why and neither may he, but it alerts us that he needs something different today. It generally means he needs few demands, lots of TV, cheesy pasta for tea, somebody to feed it to him and an early night. As yet, Little Bear can’t communicate this to us any other way so we have to rely on the medium of dummy interpretation. He has a wide enough vocabulary now but I don’t think he can pinpoint how he feels, let alone interpret the feeling enough to be able to voice it.

Although these are all valid points, there is something else, more fundamental, that is holding me back.

The dummy and blanket are the only things I can think of that Little Bear has always had. They have travelled with him (one assumes) from his birth family to foster care and from there to us, providing him with a reliable and consistent source of comfort along the way. Perhaps I should say that they are the only reliable and consistent source of comfort he has ever had. You would usually anticipate that the reliable and consistent source of comfort would be your Mum or Dad but as Little Bear has had three different ones of each and not one of them has accompanied him on his whole journey, he has had no choice but to seek an alternative source.

How can I, hand on heart, take away that consistent and reliable source of comfort? I genuinely don’t think that I can or, more importantly, that I should. Having had so little control over what has happened in his life I think I can hand over the reins of this one to Little Bear himself.

I know that Society will stand in judgement, as I too probably would have done a few years ago. I know Society will consider him too old and my behaviour in allowing it to be atypical. I have decided that I care not one jot. Sometimes I make that type of decision quietly. What wider Society doesn’t know about won’t bother them. However, if I really don’t care what anyone thinks and I genuinely believe I am acting with the best of intentions, why should I hide it? Society needs to become accepting of the fact that not all children follow a typical pattern of development and therefore will not adhere to the rigid expectations we set out, whether anybody likes it or not.

Last week I read a blog on a similar theme, though it was about using a baby carrier with a three year old, and I realised this type of age-related pigeonholing is happening left, right and Chelsea (It was written by @LivingtheTheory and you can read it here: http://living-the-theory.blogspot.co.uk/2017/12/thats-no-no-now-hes-getting-bigger.html ) Can we please quit it with the chronological age expectations and think developmental needs? So what if a toddler still needs to be close to his Mum when they are out and about? So what if my 5 year old still needs me to feed him sometimes? So what if a sixteen year old with severe learning difficulties still wants to carry a teddy around? So what if a ten year old still needs a pull-up at night? So what? All children have different needs. I’m not sure we need to get our knickers in a twist about it.

I have no idea how long Little Bear is going to need his dummy and blanket. I don’t think it is something I can set an age-related target for. Will he still have it when he’s a grown man? Somehow I doubt it.

 

*The main impact on speech of having a dummy is that children talk around it and inevitably start to form some of their speech sounds incorrectly. It is usually the tongue-tip sounds that are affected the most as the dummy prevents the tongue tip from reaching the alveolar ridge (the flat hard ridge behind your top teeth) , a place it needs to be in order to make accurate t, s, l, n, d, z sounds. A tell-tale sign of too much dummy use is the presence of a process called ‘backing’ in a child’s speech. The front sound ‘t’ is made at the back instead, so it sounds like ‘k’. Everywhere a child should use a ‘t’, they will use a ‘k’, so ‘tea’ sounds like ‘key’ etc.
Dummy use isn’t the sole cause of this process, it could just happen anyway, but it is not a process usually seen in typical development so can be a red flag.
As Little Bear has Developmental Language Disorder, with accompanying speech disorder, I would be stupid to allow him to speak around his dummy. Interestingly, although he has had many atypical processes in his speech, backing has not been one of them.
However long a child needs their dummy, I do believe that speaking with it in is a massive no-no at any stage.

For the record I do care about Little Bear’s teeth too. He has regular checks at the dentist and so far they are lovely and straight (as are Big Bear’s adult teeth).

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A Confession