Here some suggested organisations that offer expert advice on SN.
Can someone help please - dyslexia?(18 Posts)
I'm not an expert, however, I'm a parent of a 'conundrum' child like everyone else on here. I also know what it is when having to deal with a husband who does not have the patience to deal with and gets annoyed with such a child. And I would have walked out on my husband if he had continued his ways. It is actually still work in progress and I often get comments that I am over protective (also from my large extended family, I say to hell with them; thankfully I now live thousands of miles away). So please vent away.
Please get your son help now. Don't keep him in a classroom with 30 children, he needs a calm and quiet environment and to be taught by highly qualified (SEN) teachers, I apologise in advance to any teachers on here but traditional teachers often do more damage than good for our kids.
If you can afford it, go private so that you can get to the bottom of this sooner rather than later. He will need to be assessed for dyspraxia, anxiety disorders, phobias, dyslexia, dysgraphia etc....
Shower your son with love, love and more love.
Take care X
Thank you so much for your post. It wasn't a full assessment, it was an initial chat with a MH nurse. I think he has got much worse since then anyway (about 9 mths ago).
Yy to blaming parenting! MHP often refers to how stressed I must be due to imminent house move and other things. I am of course, but that's only been a couple of months!
I will ask for an assessment as you've suggested, no I know what to ask for. I'm sorry it's been such a long road for your Ds3, glad you got a diagnoses eventually.
To me it means that I would want him assessed by a developmental paediatrician! You said in your opening post that your DS has already been assessed by CAMHS and is not 'thought' to be on the spectrum in 'any meaningful way'. Was this a full assessment? Was a developmental paed involved? I know that in different areas the process of getting an ASD diagnosis varies, but in ours it is not CAMHS alone that assess. It involves staff from CAMHS and a paed and possibly others (OT,SALT) who work as a multi-disciplinary team to assess.
With my DS3 at age 8 he was referred to CAMHS for anxiety.They put him on their waiting list for therapy and referred him to a (general?) paed. That paed asked that he go onto the Complex Communications (ASD) Diagnostic Services list. Her referral didn't 'get through' the 'panel' who said DS 'just' needed the CAMHS input. At 9 DS got 5 sessions of cognitive behavourial therapy. They didn't 'work' (DS couldn't talk about his feelings or anxieties and just got upset), but at least that meant CAMHs did a referral to the diagnostic service and it was accepted that time, when DS was just 10. We waited 4 months for the assessment process to start and 3 months after that got an ASD diagnosis.
So it can be a long process to get a full assessment - but it sounds with your list of difficulties that your DS needs it. Being told that your DS is 'thought' not to be on the spectrum 'in any meaningful way' is not enough.And feel free to off load here about frustrations with your DH 'not getting it' and not dealing with it - you won't be judged here. However, in my experience some 'professionals' can sometimes be a little too quick to attribute some of our children's difficulties to our parenting....
I've just written some notes to give to his MHP to see if they mean anything, or might just be normal, 5 year old boy stuff. I imagine lots of it is a matter of the extent of the behaviours. Most of what I've listed is pretty excessive and hard to live with. I would be so grateful if anyone could take a look and tell me if it means anything to you. Sorry, it's long.
Anxiety: sick, dying, health, school (bolting attempts). Affects daily life.
Emotionally aware of others' feelings
Active, restless, tireless
Angry, destructive, aggressive, frustrated
Impulsive, rough play
Sleep problems - falling asleep, early waking. Very heavy sleeper. Snores
Sensory issues - clothes, smells, sounds, wet (improved)
Needy, superstitious behaviours when anxious
Really sensitive to diet - sugar, sweets
Unable to concentrate/sit down/pay attention/retain instructions/ no self control
Gets told off for hurting people, through clumsiness or roughness/ being 'wild'
Some rituals, eg bedtime reassurances and tucking in
He is getting worse and worse. I think the anxiety about school starting is kicking in. Hours of sobbing and shaking tonight while we tried to get him to bed. He was terrified of dying because he couldn't get enough air (panicking) and of being sick. It's devastating to watch my precious boy so desperate.
Dh is impatient and unsympathetic so I have that to deal with too. I told him tonight I'd end our marriage before I stop looking after DS as he needs it. Dh was threatening him with taking (precious) toys away and even putting a lock on his door!!
I feel so desperate, worried and sad that DS needs both parents and yet dh seems unable to feel sympathy. This has turned in a 'Relationships' post, sorry.
I think I want a diagnoses in a way so I can present dh with it as not just me 'making it worse, being too soft blah blah' all the other accusations I get from him.
I'm going to ring his MHP next week, try to see her sooner and ask for a referral to ... An OT?
Thanks for reading, just wanted to get it off my chest.
Thanks so much, lots to think about. I believe, as mentioned in the silentstars assessment linked to above, in parental instinct and though he doesn't fit neatly a specific diagnoses, I will keep exploring different conditions. It makes sense that many of them co-exist.
Thanks again, I'll come back with updates
PS: The Children's Centre also has a fantastic OT (Occupational Therapist) - Heather Greenaway who has been of great help dealing with the anxieties and coping mechanisms.
My youngest aged 4 was diagnosed as being ASD (Autistic Spectrum Disorder) 3 months ago. I sensed long beforet, at maybe 2.5 years, that there was something going on. His speech was delayed, he had this nervous energy but seemed more than just physical, more an emotional need he failed to control. He cries easily and clings to me as his source of comfort - even now, to some extent. He now grinds his teeth, hates having water in his face or his ears touched (washing hair is a challenge).
Because my eldest, now 6 was diagnosed with ASD 3 years ago, I was ready to spot any signs with his brother. I requested an assessment and got a GP referral to the SALT (Speech & Language Therapy) at Siward Road Children's Centre. Jill Gisby the head of SALT was fantastic and in a very relaxed meeting, she was able to play games with him and spot anything through that. At the same time, I requested a referral to see a Developmental Paediatrician, knowing that the wait can be long.
In a matter of weeks, we had a referral to a Developmental Paediatrician (Dr Serena Haywood) who came to the ASD diagnosis but highlighted that he was vereing more towards the Aspergers end of the scale (Aspergers being the more high-functioning end), however these labels are being scrapped as they are impossible to define, being that the spectrum is so varying and if a child is labelled as more high-functioning, it can detract from the help needed. All children labelled ASD need to have specific bespoke help as this 'invisible' condition is so hard to define as a whole.
It is not uncommon to have additional issues alongside, such as Dyslexia, Dyspraxia and ADHD. I am convinced he has ADHD as his levels of excitement and energy are consistent with everything I've read, plus I have noticed that lately he is reading numbers back to front and writing letters in mirror-fashion, so there is a possibility that Dyslexia is present.
Again, I am not a professional and hope some of this is of help, as I can only speak from personal experience and the knowledge I've gained over the past 4-5 years. x
2boys - dyslexia can (and often is) linked to anxiety but this is usually around school/learning in particular. The Myself As a Learner (MALS) assessment was developed by Prof Robert Burden who has an interest in dyslexia and anxiety.
It is perfectly normal for sensitivities and tics to be exacerbated by anxiety. DS1 internalises stress and so tics and sensitivities are like a kind of barometer that indicates his stress-level. Complete the following when he is at his worse. http://www.silentstars.org/images/Sensory_Processing_Disorder_Checklist.pdf
Also there is a great deal of cross-over in different discrete conditions and there are commonly co-existing conditions. DS1 has been diagnosed with ASD, SPD, ADD, SpLD, APD, Anxiety and Tourettes. He is not a perfect fit for any one condition as they interact with and compound each other. It is not a case of either/or but and/and ifkwim.
ASDs is Autism Spectrum Disorders
What you describe makes me think he needs further assessment, keep a diary and notes and think about videoing any behaviours that others may not see, it's not for us to diagnose on Internet obviously, but you may need to get more assertive, you might also find it helpful to have a read around ASDs, dyspraxia, SPD, OCD and Tourette's to see if anything sounds familiar
Sorry poltergoose what is ASDs? Asperger's syndrome?
Thanks for that, both of you. I think I'm clutching at straws perhaps. I don't really identify with SPd at the moment (what I've just read anyway) but will bear it in mind.
The anxiety is the biggie really. He has what is describe as phobic responses to certain things, like feeling/bring sick and being near ride on mowers (fear of being run over). He also has had obsessive hand washing for phases, which is still underlying.
He's up this monrning at 5 as he does this funny breathing/sniffing (irritating) thing with his nose sometimes, and he worries he can't stop and it will make him sick. <confused> I am desperate to help him. DH runs out of patience and finds him difficult and exasperating. Thank you so much for your help, I feel quite lost with it all.
Dyslexia is a bit of strange thing as its different for different people. I'm dyslexic but it's just a lack of being able to spell for me. I have a biology degree and work for a very big global company doing a job that's hard to get into. I have never heard of it being linking to anxiety but?
On a side note my son has SPd but I only noticed this when his ot pointed it out. He has major motor skill problems but I had totally dismissed them.
I think it's worth exploring, you'd need a referral to a sensory trained OT, but there's lots you can do at home. Have a look at The Out of Sync Child
I remember ds's first 'encounter' with an SN professional when he was 3 when nursery had some concerns, she identified sensory problems, I got that book on her recommendation, but didn't identify with it at all, 3 or so years later an amazing OT explained it to me and it was a real lightbulb moment, it explained so much I wish I'd pursued it earlier.
I would also suggest you keep ds on any professionals he sees 'lists' and consider asking for reviews, eg if you've seen a developmental paed, ask for a review in 6 or 12 months, because if his difficulties become more pronounced it will be easier to access assessment and hopefully quicker. It is not uncommon with ASDs and other neuro/developmental conditions for the developmental differences to become much more apparent at around 7, I noticed a big shift when ds's year group entered KS2/juniors when suddenly all the children (except ds) seemed to have really matured.
I think I looked into that a long time ago. He has got much better, mostly, with things like labels, collars and seams, though it all comes back when he is anxious about something. He's very reactive to noise, smells, itchy skin etc, and gags on food very easily (like the dog made eye contact with him <grin>). Does it sound like it to you? I'd forgotten about it really as the sensory issues seem quite 'background' now.
All I know is he is different to other children his age. He is social, has friends and I don't worry about him in that respect. He just finds life so hard
Have you come across Sensory Processing Disorder?
I apologise first, I know little about it but I am trying to help DS, 5, and it has crossed my mind that this could be a possibility.
Is it synonymous with highly sensitive tendencies, and anxiety/ low self esteem? He was assessed for autism by cahms and not thought to be on the spectrum in any meaningful way.
He has always been highly sensitive, both physically and emotionally. Since starting school (just finished yrR) he has been so anxious (at times) that it has really what he does and he's even been sent home a few times 'ill'. He is often so sad/angry/frustrated after school that I don't know how to help him.
When outside running, playing or riding/ dog walking he is happy and relaxed. He is vary capable physically and verbally. He hates and is poor at reading/writing, trying to learn books rather than 'read' them. I know he's only young though. He often writes letters back to front ( like in a mirror) and gets very angry and frustrated.
Sorry, I know little about it, I just want to help him and if anyone can advise that would be great. He sees a MHP for his anxiety but it doesn't really help and I think she's a bit baffled by him( as am I).
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