That time I threatened to place my son into care.

That’s right, the hard faced “I’m coping fine” mother threatened to place my son into care. It’s been so long since my last update. Clearly  I suck at this regular blogging malarky. I am not going to deny that fact. However things are a clearing up a bit now. I feel like I can update even though we’re very much in limbo waiting on things happening now.

The good

The good news – Leon has been cleared of having further neurology issues. We’d thought the eye rolling might have been related to epilepsy but we’ve now seen two neurologists who are both saying it’s absolutely not that.

 

The Bad

 

The not so good news. A large proverbial pile of shit hit the fan about 2 months ago. I got to breaking point and threatened social services that I would consider placing Leon in their care unless either CAMHS (Child and Adolescent mental health service) assessed him pronto or support from them was provided. To let you understand, Leon up until around August of last year was a very calm content boy happy to stim in his soft play area or in the garden, and very rarely a demanding child. Of course he had meltdowns but nothing like he’s been having recently. He was referred to CAMHS in November of last year (2016) He was “Urgently” referred actually.. by the Educational Psychologist, the head teacher, his own teacher and his pediatrician. It was an urgent referral as I am a single parent, he shares a room with his brother. At the point of referral he was hitting, kicking, headbutting and biting everyone (even strangers, people in school etc) randomly and unpredictably. He was hurting himself, battering his legs off bars and stairs and walls, his own hands and arms were covered in bite marks and bruises he’d given himself. He wasn’t sleeping. We were all absolutely shattered physically and emotionally. His brother was often in danger of his outbreaks as they share a room. In my mind, I expected urgent referral to be 2-3 months, absolute worst case scenario.. How wrong was I?! Only about 7 months out. Thats right his referral in November last year wasn’t looked at until August – 10 months down the line, even then they never actually met Leon until October. And I’m absolutely sure my threat to place him into care had a huge part to play in them eventually coming out. It’s absolutely disgusting that in this day and age in the NHS vulnerable children are being left this long with severe mental health issues. We’re getting somewhere though.. I’ll mention more in a bit.

 

The Ugly

 

Second complaint has been with the council.. firstly their school transport service. The transport assistants are absolutely lovely and I don’t fault them at all. However there had been two incidents with Leon and obviously they need to report all incidents. The first involved Leon hitting and kicking the drivers console in the car whilst the car was moving. The second involved him hitting a child and then hitting the escort in one of his meltdowns. I got a letter from the council stating I was to sit Leon down and discuss with him that his behaviour has been unacceptable and that he cannot behave that way in the future. Now I absolutely understand it is unacceptable.. however Leon is a severely autistic non verbal child with no understanding whatsoever. We called the council to let them know about Leon and his disability incase it was a generic letter that was issued. The lady (Very polite term for the absolute scrotum faced woman that covers the school transport organisation) informed us she’d called and spoke to the school beforehand and was aware of Leons difficulties, and still expected the sit down. So we got off the phone and phoned the school. School have assured us his transport will not be affected and they’ll most likely arrange a different escort for Leon (previously he has had the SFLA’s “Support for Learning Assistant”) The current escort has informed me she thinks she’s switching Taxi runs so it sounds likely that this might be the case. That was the first issue.

 

The second issue I have with the council is with the housing department. Apparently my local housing department don’t see autism as a medical issue. I have asked them to clarify this in writing but to no avail! Currently Max with ADHD (Loud, enjoys TV, games, music)  and Leon with severe autism (enjoys quiet, dark rooms, sensory lighting) are both sharing their room.  All the specialists involved agree they need to be separated. Max for his own safety as he is currently in danger from his own brother. And Leon so he has a quiet calm room to retreat to as right now there just isn’t one. I also want to apply for funding for a safe space structure to be placed in Leon’s room. Right now with them sharing that is just not possible.  We have handed in copies of written letters from both childrens psychologists, the paediatrician and both schools confirming that they need the extra room as a medical priority. The council have agreed to put me on Band 2 without medical priority. It is high enough up the list however they aim to fill the house to the best need. Therefore, if anyone with more than 3 people in the house apply they will get priority. Practically making my chances non existent! I have considered going private, but I just feel I couldn’t deal with being told I need to leave.  I’m also worried about when Leon gets older incase he causes any damage. At least the council will be somewhat understanding to his disability. So now I need to gather all my evidence, and firstly appeal the band decision – failing that I’ll be contacting Local MSPs.

Aaaaaaaand breath..  Up to now He’s been seen by CAMHS 3 times. The first two times he really was a little sh#%. Done all the worst behaviours in front of her very eyes. The last time she seen him in CAMHS office and he was good as gold. She really couldn’t believe it was the same boy. They agree he needs medication as his outbursts are inconsistent, sporadic and unpredictable. She came to our home and his school to observe him. CAMHS want to rule out ADHD firstly. I don’t think it is ADHD for a split second as all his behaviours are sensory seeking, but he’s going on a trial for treatment to rule it out. And if/when the trial doesn’t work he’ll be put on Risperidone. I have never heard of this, but apparently it’s used to treat schizophrenia and symptoms of bipolar disorder as well as extreme irritability in Autism. Sometimes we actually questioned if Leon might have Bipolar disorder – as he gets extreme highs and extreme lows. I mentioned before about his manic laughter at times. He can be sitting daydreaming, staring into the distance and he’ll start manically laughing. It’s adorable but slightly unsettling at the same time.. and it can go on for a long time. But equally the opposite happens. Sitting smiling, looking like he’s enjoying whatever he’s doing and then a fuse blows and he’s trying to kick out or bite you. That’s where we are on the medication front. He’s been given some support from social work. He has currently been awarded every 2nd or 3rd Saturday (I think) from 10am – 4pm in a secure play unit. This is ideal for us. I feel horrible for admitting this but I feel so much mummy guilt that Max misses out on loads of things because his brother just will not manage them. I also feel guilty for feeling guilty, as it’s most definitely not Leon’s fault. Being an ASN mummy has so many difficult compromises that we make, but it’s a difficult pill to swallow when you realise your other children are making compromises too.

So in short, this is where we are right now. We’re trialing medication. The school are incredibly supportive. We’re preparing to fight the council to get actual priority for an extra room. And I should be getting every 2nd or 3rd Saturday to do something out of the ordinary with Max, whilst Leon gets to play in a special unit for a few hours. Far from sorted of course, but a much more supported place than we were before, and if I’m absolutely honest.. I’d threaten to all over again to get him what he needs as that’s what we have to resort to under this government unfortunately and time’s are unlikely to change anytime soon.

If you’d like to know more about autism – Check out this link

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Spectrum Sunday

Making your own Sensory Room Part 1: DIY Wall Pads

Just before Christmas, I made the decision to install a full on sensory den under Leons bed. This is how Leons space was.

This issue with this was he kept hurting himself off the storage when he had meltdowns (Leon is severely autistic). He would kick the wall (which is attached to our neighbours house) He made holes in the walls. So with all these combined I sat and tried to figure out how I could change the room to suit him. His brother Max’s bed was the opposite side of the room and had most storage and his games consoles underneath it. We decided to switch Max to Leons side and fit the sensory things under Leons side. Removing the storage furniture from Leons side solved the “hitting himself of the furniture” problem. Removing the neighbouring wall solved the noise issue, so it only left kicking holes in the wall.

Leon loves softplay. He loves the feel of the mats and he loves the colour yellow. So I decided wall padding in yellow mats would be ideal – I got many quotes from companies, and it was over a £1000 for the smallest space I’d want done to be padded professionally, so obviously that wasn’t an option! I decided to make my own. Here’s how if you’d like to do the same.

DIY WALL PADS 

To make your own wall pads – You will need the exact measurement of each “pad” you want to make. We researched supplies first. I found that a B&Q within travelling distance would cut wood boards for us, I could buy foam in bulk on ebay, and I could buy PVC fabric on ebay too. I measured the full width of the areas I wanted to pad and the height I wanted it to go to. I divided these areas into more “easier to make” pads. (So that rather than making 1 huge pad, I’d have 4 I could line up and install on the wall)

This looks simple when you write it down like this. Only a few slight issues I ran into.. I didn’t account for sockets and light switches (idiot.) Thankfully though, my original plan of where the pads were going didn’t make it all too difficult to work around – we just placed them differently.

Note: We also fitted acrylic safety mirrors in the sensory area – also take this into consideration if you’d like something similar as you cannot fit anything to the wall once the pads are up. You’d need to take mirror measurements into account too. (Think bubble tube mirrors!)
Also – we mismeasured and when we rejigged we ended up with two big leftover panels which we left on the floor and absolutely love them (scroll down the bottom to look!) If you want floor panels too make sure you order enough.

 

Step by step

  1. Measure the Area.
    – Consider where you will buy supplies from and which supplies.
    – Take into account light switches, skirting boards, wall rails, window sills.
    – Divide your measurements into “easy to make” pads. For example – the board we could easily buy was 145cm tall, so we made most pads 145cm tall to save on cutting. A good idea is to draw out your pads using decorators tape, measure them to make sure your plan is right – and doodle your plan down somewhere so you don’t forget (or leave the tape up!)
  2. Find supplies.
    I used 3mm Hardboard from B&Q here you can look for a store that will cut it for you if you don’t have the right tools – straight cuts only though so you will need to work your measurements around that.
    I used Yellow PVC material from ebay here there are loads of colours and I highly recommend PVC as its waterproof and easy to wipe down.
    I used 1.5inch Upholstery foam from ebay like this one
    You’ll also need some kind of glue – I used Solvent free adhesive from B&Q again – this one
    Brackets to fit to the wall – I used flat mending plates like this
    You’ll need screws – small fat ones big enough to fit through your mending plate and catch the hardboard – but not too big that you’ll press the foam and feel it through the PVC.
    You’ll need a good staple gun & staples.
    You’ll also need the usual, drill, raw plugs, and screws or drywall screws.NOTE: For foam and PVC you should order more than what you need – as you need around 15-20cm extra height and width on each pad so you can cut it evenly and also staple it down.Also make sure your glue fits in your caulk gun unless you’re some kinda skilled ninja and can chop the bottom off. *wink
    Making them

    Ok. By now you should have –
    Boards cut to size, Lengths of foam, Lengths of PVC, enough glue to stick a house together, and all yer wee bits to attach it to the wall.1. Lay out your foam sheet,  Yes I appreciate how difficult it may be. Look at the floorspace I had to work with.


    Put your cut to size hardboard panel on it using a thick marker pen mark around your hardboard – leave about 2cm extra around each side. Cut your foam – I used scissors. This took a while.  You might have more brains than me and use something decent. Repeat for each hardboard piece you have. Make sure you leave your panel with the correct piece of foam or shit will get confusing as fuck.

    2. Take your cut foam piece and your hardboard panel, and lay the foam piece on the ground – using a caulk gun glue your foam. I expertly done ziggy zaggy shapes accross the middle and a square around the outside. Place your hardboard piece on the foam making sure its bang in the middle and the extra foam you left around the edges remain. Leave it on the floor to dry for around 24 hours. We absolutely did not do this. I highly recommend waiting the 24 hours. Repeat for all hardboard pieces. Leave in a huge pile allow the glue to dry.

    Look at my nice pile of foamy hardboard. and my messy floor. And my not so neat foam edges. And the overlapping wood bits – yes you avoid all this turmoil by ensuring you leave extra foam (see I’m saving you grief, thank me later!)

    3. That extra foam around the edge of your hardboard? Get the coolest, scariest serrated edged knife you can find and slice it off. (Takes a while but it makes your foam even – much easier when it comes to PVC application)

    4. Now that that’s done, you have a nice solid hardboard piece with foam attached firmly. You want to lay your PVC out. Lie the wooden piece down on top and draw around it (make sure its on the bad side of the PVC) You want to leave around 7-10 cm of extra material around the whole board. Cut your fabric out and leave it sitting with the hardboard piece (do not mix them up!) Repeat for the rest. (I completely forgot to photograph this)

    5. Now you have multiple pieces of hardboard, with glued on foam pieces all cut to size and stuck on firmly, sitting with their cut to size piece of PVC fabric  (that you’ve not mixed up!)
    Lie your PVC piece on the floor, good side down, put your hardboard piece on top, foam side down. You want to make sure its placed in the centre. Start on the bottom, Pull the pvc up and staple twice, then do the top. Pull the PVC tightly staple twice, then repeat for both sides. Each time you staple ensure you are pulling the PVC as tightly as you can. This will make sure the PVC looks nice and tightly pulled at the front of your panel. The corners are a bit pernickety – this video helped me so much with stapling the corners.

    Ta-Daaaaaah!  (lol at the mess- cries internally)

    6. Now you’ve made your pads, you’ll realise they’re much lighter than you expected – and the 40 million brackets you bought to fit them were probably excessive. (Yep.)

    To fit them to the wall – Simply screw on your mending plates to 3 sides of your panel. You want them to be next to each other without space – so one side will need to stay unscrewed (it’s fine! – it doesn’t move, you can attach using velcro if you wish but you really don’t need to)

    We started on the right hand side of the wall – Picture you standing holding a wall pad with the PVC facing you , that PVC wall pad will have mending plates to the top, bottom and left hand side. The next one you put up will be the exact same, (the right hand side of the next wall panel with no mending plates will sit on top of the mending plates on the left of your current wall panel)
    Hopefully this explains how we put them up..

    And that’s it! We mis-measured – and when we jiggled the boards around and got them to fit we had two panels leftover which we happily used on the floor – Leon loves them as he loves the feeling of the cold PVC on his feet.

    This is how it turned out when fitted.

    PART 2 COMING SOON.

    PINNABLE:

Aggression in Autism

Aggression? Yes. Kicking people, kicking floors to the point you think his heel will shatter, kicking holes in walls, headbutting (front & back), throwing himself onto his knees, biting his family members, teachers and his wrist to the point of multiple bruising and skin breaking. Alongside sleepless nights, aggression is currently rife.

I’d say “what a long stressful week it’s been”.. but truth be told it’s been a stressful month, at least! Leon has become very aggressive lately. I’d originally assumed he was in pain as he seemed to wince. He’s non verbal, so can’t tell us. We’ve checked everything. We’ve gone over everything. We’ve visited GPs, consultants, dentists the lot, trying to find the source of suspected pain. We’ve tried everything to lower the likelihood of meltdowns.. I’ve bought rugby headgear to protect his head when he’s headbutting, I’ve bought ear defenders incase his hearing is somehow much sensitive than it has been. We’ve bought chew buddies in the hope he stops biting people and instead chews on the chewbuddy. Pain made sense initially, based on what I seen in front of me when it’s happening.. I’ve spoke to a few mums who recognise the ‘eye wincing’ in their verbal autistic children who have suggested it might be a tic. A tic before a meltdown.

This is bite marks he’s made on his own arm.

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It’s horrible to witness, I’d love to tell you how loving and great it is to be an autistic childs parent, but truth be told lately it’s a giant boiling over kettle of shit. I absolutely adore my kids, both of them but it saddens me. It’s so difficult to watch my normally happy cheerful boy that would brighten anyones day, turn into an out of control child who is harming themselves. I know it’s not him, but he’s trapped in their and I don’t know how to make it better. It’s mentally draining. There’s thinking about the future, he’s big and strong now and he’s only going to get bigger and stronger. There’s wondering how much it affects his brother, as he too is seeing the aggression, he too is suffering sleepless nights because of meltdowns at all hours. We’ve had a meeting that included both schools as Leon bit Max very badly on his knee. They referred us back to Camhs (child and adolescent mental health service) as the school agrees that his behaviour has drastically changed with no actual trigger for it. We agreed a behaviour and sleep diary was the best option for now until the referral goes through. They’ve suggested respite day care based on how unmanageable he is right now, and for the first time ever I’d even consider letting a stranger look after him just so I can recharge my batteries or even straighten up the house.

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We’ve tried everything. He’s kicked holes in the wall in his room. I’ll have to pay for the repairs. When he was very young (3-4) he was a terribly bad kicker. The repairs were done for us then, on the agreement we’d fix any further ones. He seemed to grow out of it, until lately. I’ve decided to pad his wall near his bed, and in the sensory area we’re making for him. (I say we but I have a habit of not speaking about myself in the correct term – it’s just me, ‘we’ is my shitey way of rambling so forgive me, I keep going to correct it but I can’t be arsed just now as it’s 2am) The wall padding it being done against the advice of the school, but I really do not care. Apparently having somewhere to release the need to kick / headbang is a necessity in an autistic child and taking it away will make them go elsewhere (which I can kinda grasp) however, he is an 8 year old child on a necessary loft bed (they’d have no space otherwise.) If he were to start kicking in his bed with me downstairs, by the time I get upstairs and get out the ladders to get to his height there will already be a hole in the wall. Currently the ladders are always in reach in their room for this reason. The padding stops him from being able to hurt himself easily, it stops my walls from being damaged, and they will be in his favourite colour. It’s a win win in my opinion. I’ve spent a fortune. (which I absolutely do not regret, I just hope it helps him stay calmer) He has a sensory bit in his room just now, but it involves a small projector light, giant bean bags, lots of little rubber sensory toys and light up things. He had a bubble light but it tipped over and broke. I decided to go the full shebang and buy everything. If I thought he’d find it useful / interesting, I bought it. I’ll do another post about that as it’ll be a DIY sensory room, (including the padding) I just hope it will work out as I picture it.. Fitting two loft beds, all their toys & maxs Xbox things (he’s xbox daft) alongside Leons sensory room will be a hell of a job but I’m having a go. The doctor has suggested we move to a larger house, having 3 bedrooms would be much more suitable as they’d have their own room. Max’s sleep would be less interrupted. Leons sensory area could be blackout. But that would mean moving an autistic child to a new area. This alone can have such a bad impact. A child who struggles if a different taxi driver picks him up for school, will not cope with all the changes involved in moving house. We’d also lose the large back garden we have, six foot fences all round, they’ve lived here since they were 9 months old. It really would be a last resort to move home.
I’m not sure how long the Camhs referral will take, I’m not sure what they’ll suggest. I can honestly say I’ve always felt blessed having such a cheery wee boy, and right now if I could take away his autism I absolutely would.

Posting is going to be few and far between. I’ve only just purchased lots of sensory things for his room. I will be trying to fit all the things before / around christmas time (wish us luck – me and my brother.) I’ve also bought paint and paper for my room which I plan on doing after Christmas as I don’t want to attempt getting it done the now.

Being the voice of a non verbal child – Pain management

non verbal pain

Autistic, Non verbal pain

How I know my dismissed child is in pain

I’ve not posted much lately at all. I’m so stressed, I feel like I can barely function. I’ve had little to no sleep this past 2 weeks. I finally tapped out yesterday and got my mum to come take my son for a few hours so I could sleep. My son Leon is non verbal, and he’s in pain. I’ve convinced myself of this. He is a non verbal autistic child experiencing pain somewhere, sometimes and can’t tell anyone (me included). I’ve learned to read Leon’s cues. Compare it to how he normally is. For me and many other parents of autistic children, there’s always a “normal” even though they are completely unpredictable and behave nothing like a typical child they sure love their routines. Leons routine this week has gone to complete shit.  Here’s a few examples of the notable differences.

 

School

Normally – Leon attends school, has typical meltdowns (kicking the floor / upset) but is consolable – these rarely occur, often distraction stops them before they become a meltdown.
Lately – Leon has been sent home for a meltdown lasting hours, he even went as far as biting one of the teachers.

 

Autism Club

Normally – Leon attends an autism friend club on the weekends – he will normally run around a big gym hall and like hearing the noise of his feet running on the floor and the echo.
Lately – Sitting in the sensory room the whole time wanting a cuddle – kicking off when I’m not there.

 

Sleeping

Normally – Leon is on Melatonin medication to help settle him down enough to sleep – this works 99% of the time. It calms him enough to sleep (doesn’t last if he wakes up through the night though.)
Lately – For the last 2 weeks, Leon has barely slept more than 2 hours each night. The nights he has slept (for a couple of hours at best) it has been in my bed and he has been on melatonin as well as painkilling medicine.

Attachment & Personality

Normally – Leon is a very cheery boy normally, content in his own company. Plays in his room by himself on his gym ball, or in front of mirrors. A Very non touchy feely boy who would often avoid a lot of human contact in favour of playing / stimming by himself.
Lately – Demands to sit with me and cuddle on the sofa, gets hysterical if I go do errands (laundry etc)  Needs constantly reassured that I’m coming to sit beside him. Seeking comfort and being aggressive.

 

Meltdowns

Normally –  Meltdowns usually lasted 1/2 – 10  minutes at their worst, they’d involve lying on the floor, shouting and banging arms / legs on whatever was in reach. He’d never hit people he loved though – often if gran put her leg in front of him kicking he would stop and consider going elsewhere.
Lately – Meltdowns have lasted hours (2-3 hours) he only stops when he is exhausted – when stopping he seems to stare into nothing as though he’s not there. Thinks nothing of hitting or biting loved ones. He has bit his brother, gran and myself a few times. He bit his brother very badly on his leg.

Facial Expressions

Normally – Leon is usually pulling many facial expressions, happy / angry / laughing / sad in hope that you will mimic the facial expression to him.
Lately – Leon seems to be vacant, and not there at all – daydreams often and winces his eyes, burrows his brows when in pain. Looks very tired and skin is very off colour.

Self harming behaviours

Normally – Leon rarely showed self harming behaviours other than kicking his leg too hard on a floor occasionally head bumping. He’d often only do this during a meltdown or to feel pressure.
Lately – Leon has bit his brother, his teacher, his own hand has a bruise on it near to his wrists, which I think have been caused by him biting them – I’ve witnessed the biting of his wrists just can’t see the teeth marks to say it has definitely been that. He’s also been banging his hands and feet of things much harder and aggressively than he normally does – glass fish tanks, his metal bed frame & ladders, the floor, coffee table at grans.

We thought it may be dental pain – and booked him in to see the dentist for today. Dentist confirmed he had a bit of decay on the outer surface of the back tooth, and a bit too much overcrowding in his teeth so they want to remove some. However none of this would be causing him any discomfort.

We decided to book into the GP as an emergency appointment and after explaining all of the above, the GP simply checked his ears, his throat, listened to his chest and decided he might be “a little bit” constipated.

Groan

His toileting is no different to what it normally is. As an ASD child, most ASD children have very limited palettes so their food intake is very restricted – I’m quite lucky with Leon as he loves his vegetables (admittedly mostly peas and carrots) Everytime I take Leon to the doctor they state constipation is the problem. Now, the thing is it very well might be! But I have asked for allergy tests. I’ve asked for a dietician to consider a better diet for him to reduce his bowel issues. I’ve asked for a scan to check for obstructions before his pain is dismissed, but they all fall upon deaf ears.

They give you the “sympathising but not listening” glare of a GP who assumes that you are in fact a looney toon and worry wart of a mother. Then again that’s GPs for you. My son never attends his GP for this very reason. We always, always go to his own doctor who may not give us the answers we want but at least they have some knowledge on treating non verbal children. Unfortunately for us, she was off today.

Tomorrow we’ll try again.

Leon is still attending school, albeit they are very aware of how unpredictable he is at the moment. He is in a special school with a lot of support staff. Hopefully tomorrow I’ll be able to call up and get a quick appointment with his Doctor. Preferably one for tomorrow but I highly doubt that happening.

I want them to consider

sinus infection : He appears stuffy, but hasnt had a cold – may just be because of the extra screaming and crying.

Gastro problems: His father had really bad health issues related to his stomach, wondering if it may be repeating itself in my son.

Groin issues : He seems to be sore when cleaning / drying around that area – possibly a urine infection?

Constipation: If it is constipation, why is he constipated. Is it his diet. Can it be amended, can something be given to help loosen his stools. Can we get a scan just to make sure there isnt an obstruction. (Leon was terrible for eating non food items before. He might have gone back into his old ways when I’ve not had my eyes on him)

Legs / Spine : Doesn’t appear to have pain in his leg. Might be worth getting them checked over as he has been really hurting them with his kicking.

Head : The wincing eyes leads me to believe he may be experiencing headaches. Is it simply sensory overload? It could be! Is this causing him migraines, can these be medicated if so? I don’t want him to experience any more discomfort than he has to. Currently he cannot function at all as he is.

 

 

I used to wish my child would one day say mummy, or mummy I love you. But now I would cut of my right arm, and probably a leg to have him tell me why he’s upset, what it is that’s hurting him, or how I can make it better. There is nothing more heartbreaking than knowing your child is in pain and you can’t do anything to fix it. Nothing more frustrating than a GP fobbing you of with another  “constipation” diagnosis.

No one has all the answers – especially when a child has complex needs. But to dismiss him is unacceptable. I’m going to have a battle on my hands in order for them to fully assess my non verbal child.

 

He cannot tell us what’s wrong, so we’re just going to have to find it for ourselves.

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