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How best to support DS while we wait for assessment? (long, sorry!)

(9 Posts)
Tonberry Sat 09-May-15 18:31:12

DS is 5yo and has been referred for assessment, I'm planning to chase this up with the GP on Monday to find out exactly who it is he's been referred to and roughly how long it will be for the appointment. The GP thinks he has ADHD.

This is the list of concerns I took to the GP that resulted in him being referred:

- outbursts of rage where he screams, shouts, and lashes out at people around him. They usually can't be predicted, the only exceptions are that we always have a couple at the start/end of each school holiday, and the start/end of each term, and when DH does his weekends at work (three times in each eight week block). Once he starts there's no stopping him, it's a case of making sure he's in as safe a space as possible to avoid him hurting himself/others and letting it run its course, sometimes hugging him in really tightly so his face is hidden and covering his ears helps him to calm more quickly, other times it doesn't. They're not like tantrums, it's difficult to describe, resolving the trigger (or what is perceived to be the trigger) doesn't stop him. So if he's started getting angry because his sister is having some orange segments on the bus and there is a sign saying no food on the bus (meaning no hot food), putting the orange segments away doesn't stop him once he's started. He has to burn himself out.

- poor sense of personal safety, more so than his friends, to the point that my 3yo has more awareness of this than he does. I know proper road awareness comes later but, even though he knows not to do it, he will step into the road without even thinking and often attempts to walk on the road rather than the path.

- acts on impulse. This ties in a bit with the personal safety. If it crosses his mind to do something, he does it. In the last month alone he has fallen out of a tree, gotten his hand stuck in the money slot at the cash point (I took my money, he stuck his hand in, the drawer closed), put his face in a pot of glitter and blew (I had to wash it out of his eyes and nose), put noodles up his nose (the 3yo copied him but hers got stuck and she had to go to the walk in to have it removed). Last time he went swimming he got out to play on the side (they have water guns) and quick as a flash had taken off his float vest and jumped in the deep end.

- silliness. Again, linked to personal safety and impulsiveness. He gets very silly and needs no encouragement, he escalates very quickly and it gets to the point where accidents happen. When we were out today he decided, for no reason whatsoever, to suddenly stick his arm out to the side as his sister was running past and clotheslined the poor girl. He is forever crashing into things, leaping about, falling off stuff, and so on.

- he never knows when he's full. He can have that heavy eyed, full look on his face and will still say he's hungry. If other people leave food he gets upset. He won't eat meat, except for sausages, because it makes his mouth feel funny. He used to eat chicken but found out it was "made of chicken".

- he touches constantly. He can't go anywhere without touching everything. If there's a button and he knows there's a button he will not rest until he's pushed it. If we get in a lift and I'm not quick enough to head him off, he pushes the buttons for every floor both on entering and on leaving. When we go past the crossing, whether we're using it or not, he presses the button. I avoid taking him to the shops now because he touches everything. He opens the bottles of fabric softer and smells them. He squeezes all the fruit. He goes behind the security desk and plays with the joystick for the security cameras. He tries to scan the shopping himself. He tries to lean over and press buttons on the till. He opens fire exits. It sounds like small things but he's like the ball in a pinball machine, pinging from one place to another, grinning like he's at Disneyland (then at some point later that day he snaps and has one of his shouty outbursts).

- he used to be a really good sleeper, still is really, but he's having more and more trouble falling asleep. He can be absolutely shattered, purple circles under his eyes, and will still struggle to drop off. He has dark curtains, same bedtime routine as always, a white noise/lullaby machine, none of it helps.

- toilet-wise, he goes no problem but he has to go as soon as he needs to go. He won't hold it in. I've tried and he would rather pee against the side of our house than hold it in for the thirty seconds it would take me to open the door. If I say "let's find a toilet" he gets frantic, whimpering and panting, even though (by his own admission) he's not bursting or deperate, he just hates to hold it in.

- at school he is very bright, he has a reading age of nine and the comprehension to match but he's silly. They have a traffic light system and almost every day he's on orange or red for persistent silliness. He can finish a worksheet but needs multiple prompts and reminders to sit down because he's in and out of his seat. He can't sit still on the carpet, he's side to side and bouncing on his bottom and clicking his fingers, nodding his head. If he knows the answer he shouts it out.

- at home he's the same. Can't sit on the sofa, he rolls around on it, bounces, clicks, etc. He makes repetitive noises. If asked a question he replies with one of these noises and has to be reminded to use his words. If he's watching TV it has to be one of 'his' shows and he will happily watch the same half dozen episodes of a show over and over now that he's worked out how to use the on demand TV service. He can't sit to watch TV, he paces, he jumps, he waves his arms, he clicks, bounces, nods. It's like permanent ants in his pants, no matter the situation, he cannot keep still.

- he has very specific interests and talks about them constantly, all day long. Currently he is really into the computer game Final Fantasy, he's never played it, he read the back of the box and constructed an entire game based on what he read. He's a level 47 black mage and I hear all about his adventures playing it. He is also very interested in renewable energy sources (solar panels and wind turbines), tornadoes, and bus routes.

I have three children and neither of the other two do any of these things (in fairness they are 1yo and 3yo) and, much as I love him, the other parents I know don't seem to have half the work I have! We've been on parenting courses, we've tried many techniques, we follow through on punishments, we praise good/desired behaviour. None of it has made a blind bit of difference.

He is a lovely boy and he's so happy. All of the things, except the outbursts and the upsets, are done with a huge grin on his face. He has this expression that seems to say "why wouldn't you be thrilled to be rinsing glitter off my eyeballs?" or "why wouldn't you be charmed by shouting 'don't steal that!' at you in front of the security guard?".

This is a really long post, I'm sorry and we'll done if you've stuck with me! Partly I needed to unload all of that. Mainly though, I'm looking for ideas on how to support him. School are crap. We've told them he's being sent for assessment and that we'll keep them informed, we've asked that they do the same and that we try work together to support him but his teacher seems to have no tolerance for him. She puts him on red even though "he hasn't been naughty..." but she's had to say his name a lot that day and she frequently sends him out of the classroom to sit in the corridor for being "too fidgety". I've said that our GP thinks he has ADHD, his teacher has said she doesn't think he does.

Can anyone recommend any books, websites, techniques, tips? Even tea and sympathy would be great right about now, we've had two outbursts today over next to nothing sad

PolterGoose Sat 09-May-15 18:59:23

Message withdrawn at poster's request.

Ineedmorepatience Sat 09-May-15 19:37:35

Hi and welcome to the board smile

I was going to say he sounds quite sensory to me, I guess polter feels the same!

My Dd3 has the same dx's as polters Ds.

Sensory issues can cause difficulties with emotional regulation, fidgeting, food, clothing, toileting and a whole host of other stuff.

Have a look at the thread and dont be afraid to ask anything on here there is always someone who will have an answer!

You are never alone on these boards flowers

Tonberry Sat 09-May-15 19:51:51

Thank you flowers

It's been such a diffucilt time. For years I've been saying to various HVs, GPs, playgroup leaders that this can't be right. At toddler group all of them would be sitting down singing songs while mine was often literally climbing the curtains or they'd be painting nicely on the floor and he'd be stripped to his undies rolling the paint. It would always be oh, he's lively and oh, he'll calm down as he gets older.

I feel almost disloyal that I've gone to the GP with a list but it was such a relief to finally be taken seriously and to have someone say that actually, yes, these things in combination with one another are concerning and they are having a negative impact on his life and your life as a family.

I'll have a read of the sensory thread once I've gotten everyone into bed smile

PrepperInTraining Sat 09-May-15 23:05:04

He sounds a lot like my son who has ADHD and aspergers.

Definitely check out the sensory stuff as recommended by pp.

Bilberry Sun 10-May-15 09:01:09

I would also be pushing things with the school. Ask them to have him assessed by an educational psychologist. The teacher doesn't sound at all helpful. From this point forward, try to use email when contacting the school. If you have a telephone conversation with them write up what you understand was agreed and email it to them 'just to confirm'. If there is a record of when he is on red/orange/green take a copy of it. Keep a diary of his behaviours (in school and out). This is all about building up an evidence base which can be essential with crap schools...

Tonberry Sun 10-May-15 10:12:16

The most worrying part about school is that his teacher is the SENCO confused

There was an issue a week ago where a child also undergoing assessment was upset in school because she'd told him to "shut up".

Bilberry Sun 10-May-15 11:28:33

That is not good. Nonetheless, it is important to try and maintain a relationship with the school. Be cheery in a 'I know you are trying your best but...' kind of way. You can often get more that way. It may involve a lot of gritting your teeth and raging on here though but that is what we are here for.

Bilberry Sun 10-May-15 11:35:50

One other thing; when dealing with 'professionals' you will need to concentrate on the worst/hardest things about your ds. This can be hard to deal with as you know he is so much more and has so many positive charateristics and abilities. It needs to work this way to get the help and support your ds needs. Your ds is still the wonderful little boy he always was.

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