Possible Undiagnosed dyslexia? Help!

[makingmiracles]

Ok so dc has had behaviour problems all his life, struggles at school, is very bright but cannot seem to contain his behaviour. I could go on and give a huge history but I’ll keep it brief.

Dc is now on his 2nd secondary school, they are at their wits end with him and constantly exclude him for 2-4 days at a time, he’s had 12 fte since beg this sept. They refuse to really do anything, have asked he’s assessed by senco but they muttered about their being a huge waiting list so looks unlikely that’ll happen anytime soon.

I’ve read around for years, literally years and no one thing seems to fit him, not asd, not adhd, not a multitude of other things. He was under paed for 8 yrs and they did genetic tests to try and find out why he is like he is. On his tests he showed as having a micro deletion and just recently I’ve read in his medical records that the deletion covers the gene pcdh11x/y 11.2 and from reading around that it came up with articles that seem to suggest that disruptions on that gene can cause dyslexia, reading around dyslexia it would explain a few things but how on earth do I get someone to test him for it??
Who is qualified to diagnose dyslexia? How Can I push for it?

I fear for him as he’s only 2yrs left at school and he cannot seem to just get his head down and get on with work which is frustrating as verbally he demonstrates he is intelligent!

Is there a way to get a private dyslexia assessment? I’m not loaded financially but if it’s a possibility then it’s something else to explore if school refuse to assess.
Has anyone had any experience with Nessie? I find that screening tool online which I thought might be worth purchasing for £10 to see how he scores, anyone else used it?

Don't ask for a dyslexia assessment because that's too narrow. Ask for a general assessment, which leaves the door open for the professional to diagnose any/all of the problems.

There is an association for these professionals and you can ask about one of them doing a private assessment. Google PATOSS.

Sorry to hear about your situation.

I don't think you can just push for dyslexia.

Personally, I would take a 2 pronged approach (if possible)

1. Would probably involve you contacting an EdPsych privately for an open assessme nt of need/difficulty
2. Be asking school what is in place to give him the best chance of success at gcse.

Something to consider (and I can't stress enough that I am noy saying this is tjr case with your DC) is that there are often a fair number of students who mess on etc through school abd it's only when they hit gcse do they realise the cost of their actions. I can think of one student who is worried sick about their mocks after the holidays because 'i've pissed about too much and got excluded abd now I just have yo accept i really don't know much'. Her attitude has shifted but she is accutely aware of how earlier actions led to this point (even though she couldn't see it at thr time).

I guess what I'm saying is sometimes it's SEND needs, others it's a chain of poor decisions.
Whichever it is though, school should be working with you on this.

Yeah I appreciate that’s what people probably think of him, but his difficulties became glaringly apparent before and especially as he started school, over the years he’s been observed by ed psych in class a few times, had conners scale done but nothings ever come of anything. No one knows why he is like he is. School would tell the paediatrician everything was fine, then the next day they’d be floor restraining him with four adults(!?) iyswim

I just think wow I’ve found the gene that his chromosome deletion covers and I’ve also found evidence to suggest disruptions of that particular gene has been linked directly to dyslexia and it’s got to be worth following up...all these years of anguish and going round in circles and it could be something so simple!

Hmm. Sounds like school should be supporting him more diagnosis or not.
(I hope you don't think i was saying he is like that. More just giving differnet options)

Maybe a private assessment is the way to go and a chat with school about his curriculum options e.g. could he be eduxated off site via a local charity / vocational facility for some hands on stuff to blend with academic etc?

Private dyslexia testing can be done for around £500.

It sounds really tough for you and must be heartbreaking, but what you say doesn't sound like dyslexia. Dyslexia can trigger behavioural problems (through frustration, etc), but the majority of dyslexic kids aren't disruptive at all. You haven't mentioned how he is academically, so with reading, writing, etc? If Dyslexia's an issue the Ed Psych's should pick up on it and if he's been observed 'a few times', that must mean, reports will have been written. Can you ask to see those and maybe take copies to a private Ed Psych and ask what they think?

What traits does he display that suggest dyslexia?

schools are not obliged to pay attention to, or even read private assessments ( many of which are basically useless, and a waste of time) One schools I was in had so many that there was a whole wall of filing cabinets allocated to store then in. Most staff didn't even have access to them, and those that did certainly had no time to read them.

What does your son think the problem is?

The school I work in is specifically for children with ASD and ADHD we deal with some of the most extreme challenging behaviour and I have never seen a four person restraint, I'm not sure that can ever be justified.
You can have him privately assessed but it can run into the thousands if he is complex and by the sounds of it he is. The school should be handling this better, I get on to them every single day. Be a complete pain until they do something. Good luck.

There are free indicator tests for dyslexia. The Bangor test would be a good start. There are also checklists. Dylsexia occurs on a continuum and a bright child can conceal difficulties. There should be a dyslexia support group in your area who can give advice. If he was disruptive in lessons which require a large amount of reading or writing, and not in other lessons, dyslexia could be indicated. I would be cautious about jumping to any conclusions. At his age you should t to him and involve him in any decisions as he can't be happy with what is happening. He is fortunate to have a good mum like you trying to fight his corner?

Have you considered ADD rather than ADHD? Or a sensory processing issue. Is a particular lesson he is struggling in.

I would also recommend PATOSS.

If its not either and there are no medical therapies available to help him, then I would sit down and document everything he has problems doing.

My middle child has an auditory processing problem, so basically he had a speech delay, issues processing speech in a noisy enviroment and processing complex verbal instructions. It is something that gets better over time with maturity, but we sit down every year and document the things he is having issues with. Previously I would just feed this back to the teachers and we together would work out what was best for him, but now that he's older, we work on a method where both he and the teacher are responsible for resolving an issue.

For example, he is now aware that if he can't understand (usually because he's at the back or sat next to someone noisy, or just because his brain has been overstimulated at playtime by too much noise), he cannot start getting upset...he just needs to say to the teacher that its too noisy and that teacher will conversely move his to the front/away from the noisy person. We have basically made both his and the teacher's problem.

One last thing, I would also get his eyes tested, ask the optometrist to look for any muscles imbalance. There isn't a massive amount of scientific evidence to base it on, but I have found over the course of my professional career that children who have significant hyperopia or uncorrected muscle imbalances sometimes don't behave as well as they could util their refractive error is corrected.