So where do we start?

[Claennister]

I'm sorry this might turn into the biggest thread ever, there is a lot to explain and offload, plus a risk that if I try to be too concise you will not know what I'm talking about!!

So, to go back to the very beginning, my daughter was a touch premature and spent some time in the special care unit. She then spent a long time in the jaundice and weight loss clinic as she didn't feed very well at all, and she never slept well, she cried and cried and cried. So bad that I rushed to the doctor when she started taking naps at 3 months old!

She was late with all her developmental milestones - holding up her head, sitting, crawling. We assumed it was related to her being premature and were assured that by age 2 she's be all caught up. A few medical issues with asthma and allergies, but nothing of huge note. It had become clear her hearing was poor, but a mess-up with paperwork led us to wait from 18 months to 4 years for her first hearing test. By 2 years she wasn't walking and was referred to community paediatrics, but whilst waiting for the appointment she started to walk, so they discharged her.

But by 3 she wasn't talking, so we found ourselves back at community paediatrics and SALT. Paediatrics discharged her again and SALT kept her in a group session for months. She actually very nearly had a place at the nursery for the specialist Deaf school due to her communication difficulties, but it was a very considerable journey to get there, so she only went once a week for sign classes and she did very well there with other children who didn't communicate verbally.

She was still in SALT groups for receptive language by the time we were looking for school places, and the SALT said she would look for a place in a specialist language unit for her. Around that time (and I could kick myself for it looking back) I found out that there was a SALT service just up the road, and it was not necessary for me to drive the miles I was covering for the group she was going to. After 2 sessions in the new group, she was discharged. Her language was not much better, I just think that the overall level of that group was lower so she was one of the best. How did she go from "needs a special education" to "She's fine"???

So she starts mainstream school and struggles with her phonics, going for extra sessions with learning support for 2 years. Her hearing test finally comes through, and she's diagnosed with glue ear. (This may not be correct, both myself and my mother were also diagnosed with glue ear as children and we are both still deaf now) She's brought back in every 6 months for a new test, but that's all that happens for the next many years. The school briefly says do we want a referral to Occupational Therapy because she's struggling to hold her pencil, but it never comes up again. She's also struggling with all her gross motor e.g. kicking a ball, jumping, hopping, skipping plus finding it really difficult to follow instructions, especially instructions with more than one part. The school refers her back to SALT for a productive speech difficulty where she has individual sessions back at the original place to help her say /k/ and /d/ sounds. She then has one normal hearing test and the SALT is sadly struggling with cancer, so she's discharged from all services.

Most recently, she's been to the nurse clinic because she's not anywhere close to being dry and night and she's nearly 10.

So now she's 10 and she's just... something isn't adding up. I can't put a really big cross on what isn't right, she's just so much behind the other kids. She doesn't remember things or comprehend simple things very well. She cannot manage multi-part instructions. She loves her dance classes but she's starting to notice she's the biggest kid in the elementary classes. She's JUST learned to skip (the sort with 2 legs, not the sort with a rope, she can't do that at all) despite practising at dance classes for 4 years. She cannot come close to riding a bike and is terrified to try except on a special needs tricycle where she thrives. She has signs of selective mutism - she is frozen solid in medical appointments and she doesn't speak to supply teachers, for example. She says everyone knows she's the shyest person in the whole school. She plays with much younger children for preference, and struggles to make friends in her own class. She still finds it hard to tell similar sounding things apart, e.g. twelve and twenty. Her hearing seems to be down again, but we can hardly face going round to the hearing clinic again to be told it's poor, come back in 6 months. What use is that to her? She's extremely scared of loud noises, dogs, heights, probably other things I can't remember...

I don't even know where we are supposed to go - a doctor? Is this medical or educational? We're thinking of going to the doctor and asking if she can wait outside while I make the concerns clear without affecting her esteem - I feel I cannot speak freely in appointments because I don't want to say what worries me about her in front of her. And honestly, I am not in this for a label to be put on her, I want to know what might HELP. Perhaps Auditory Processing Disorder or something like that? The last time we were doing this we were told by paediatrics that if the school didn't seem worried then we should leave it, but the school had been not saying anything in order not to worry us, but once we told them we were worried about her hearing, they told us how concerned they had been also! Because she's not that far under the norm lines, it can go either way. We sit through parents' evenings and again she's there in the room, no chance to really get into it. The school is so accustomed to children who have considerable difficulties that perhaps they don't get concerned very easily, who knows.

I don't know that this is leading to a tremendously coherent question because the whole thing just goes around in my brain. All children have their quirks, after all. She's always just quite close to the line of concern, but never quite crossing it, but in so very many areas. When is a quirk a "thing" and when is it not?

What do you think? What do I do next? Will pursuing assessments of various kinds actually lead to help, or is it as well to just try to get the help and not worry about why she needs it? But then we lose her legal rights, and it's already hard enough to stop clubs from handling her hearing loss by telling her to "let them know if she doesn't hear things" facepalm

Sorry, told you it would be long!

[Claennister]

BTW we live in Scotland, so that will make some difference to terms and processes in education and health.

[Melawati]

I'm not in Scotland, so can't help with specific advice re what to do there.
But the first thing you could do is to take a list of your concerns (which you've definitely got a clear idea of) to your GP. Go without your DD (perhaps while she's at school?) so that you can talk freely and cover everything you feel you need to. I've been to the GP without my DC when I've felt that having them in the room (or even waiting outside) would just make them upset and uncomfortable.
Good luck

[Ineedmorepatience]

I think there is enough in your OP to warrant a request for a referral to a developmental paediatrician!

Go to your GP with your list of the things she struggles with and ask to be referred, dont take no for an answer, be persistant! You dont need to take her with you.

Good luck

[Claennister]

Just to say the only update I have so far is we went to a true chocolate teapot of an appointment last week. Meeting with the school is next to impossible just now as they have been evacuated due to problem buildings. I don't even think there will be a parents' evening this term. We have a GP appointment booked and my husband is going to come and wait with her while I chat to the GP then be available to bring her in if needed. We also ordered some visual timetable stuff, and she has finally been able to go upstairs and do several things then come back with them all done. That's been huge!

We also realised what a big deal her shyness is becoming when I had to leave her with unfamiliar tutors at a concert and she wouldn't tell them her name or which group she was with. I'll be back again if we ever get anywhere.

[MoMandaS]

I think it would definitely be useful for her to have an assessment. My DS1 is only 3 but preschool raised concerns about motor development, social communication etc which sort of was and sort of wasn't a surprise to us. I feel he behaves differently in different environments. We went to GP who referred us to paediatrician, who said he shows signs of ASD but not enough difference yet between him and his peers to diagnose. However, they acknowledged that he needs support so someone will go to his preschool to observe and provide them with coping strategies to use with him and he'll have a SALT assessment too, but he probably won't be diagnosed with anything other than 'additional needs' until he's older, if at all. In the meantime we are to treat him as though he does have ASD because even if he hasn't, a lot of the techniques used for that are useful for many children anyway (I appreciate your dd is quite a bit older but same principle could apply), e.g. the visual timetable that you're using. A good book is The Out of Sync Child, about Sensory Processing Disorder. Another one is Tony Attwood Complete Guide to Asperger's Syndrome - I'm not suggesting that your DD has Asperger's, but he provides loads of strategies to help children of different ages cope with various situations which you might find useful. Good luck!

[Claennister]

And so to our update - goodness! Well at least they are taking things really seriously now and saying they don't want her to carry on unsupported towards high school. We have referrals coming out of our ears now, podiatry for insoles for her walking, orthopaedics for her possible tethered cord and a coccyx which isn't quite the right shape, ASD questionnaire to us and to school, back to ENT about her tonsils and adenoids, back to audiology for an updated hearing test result, off to the university for some research they are doing, rheumatology to look into my genetic condition, OT to see what help they can give her with co-ordination and strength. Phew! Throw all that on top of her other 2 existing clinics. I'm so glad to feel like we're going somewhere, but goodness that is a lot to be getting on with!

[youarenotkiddingme]

Glad things are moving on and forward. It does all feel like a sprint where the finish line keeps moving further away so I'd suggest making a table (on word of you have it) or date, who you saw, what they assessed, outcomes, suggestions and then log when you get the report. It makes it easier to keep up with everything and then know you have a report from X that will inform what you say to Y!

[Claennister]

Good ideas there. Blossom House is some canny distance for us, we live in Scotland. Would be interested if there's any secondary school in Edinburgh that's mainstream with a speech and language unit attached, or any special school which will take a girl with a vast number of minor issues which compound into one overall pretty big obstacle. Or if there is still any source of possible funding for private schools, as we don't have money but she would be much better served by a small school. We're happy with her primary, but high sschool will just eat her up. And all her friends are much younger so will be left behind. I imagine it taking at least a year to establish new friends. Oddly, although only very slightly deaf herself, she really places well in the deaf schools. She went to a deaf nursery part time and what a difference! It was too far for us to drive daily and transport funding wasn't available as she doesn't meet the admissions criteria (not deaf enough). She does so well in deaf youth clubs as most of the kids don't speak much. Shame she can't find a school to fit - a deaf school where she doesn't need to be deaf to get in, anyone?

[Claennister]

Ah now that probably explains the two friends of her own age. One is Polish and the other Chinese, both recent arrivals with limited English. Once they get more confident and outgoing, they leave DD behind again.

The downside of a school with a high recent immigrant population new to English is they can be low on support services for kids who are surviving compared to those who are understanding nothing. Swings and roundabouts, I guess.

She has retained one friend who is 3 years younger and came from a French speaking area in Africa (not sure which). DD befriended her when she arrived without the rest of her family very withdrawn and now has a bubbly extrovert friend who is not quite old enough to overshadow her. She's very much younger, though, in age and maturity.

[tartanterror]

Sounds like you will have to do a search of all the schools near you. There are some listings sites like this but there are other schools not listed. Do you have an NAS branch nearby to help with local info?