FUCKITYFUCKITYFUCK thread 2!

[CouthyMowEatingBraiiiiinz]

In starting a new thread as it has been pointed out to me that the old one is getting a bit big to read through.

Link to first thread

Balls. MN ate my big post. Will repost it later.

Have got the HV coming tomorrow afternoon. I'm hoping she has persuaded the Special Needs Sensory group that it will be fine to let DS3 go as I stay with him, it's not the same as preschool, where I would be trusting his allergy management to other people.

And she didn't stand me up at the allergy management meeting at the preschool - she had left an answerphone message that I hadn't picked up.

It's DS2's 9th Birthday on Tuesday. I hope he enjoys the presents he's got - I managed to get him the Vectron Wave he wants with my double up club card vouchers.

DS3 has his first Speech Therapy appointment on Thursday.

His speech currently is minimal. After much intensive work with him since his regression, he now says "ball" relatively clearly. He says "plass" for splash (originally from Peppa pig ). If he wants me to wear his pirate eyepatch or to watch Jake and the Neverland Pirates, he can say "Arrr".

If I put his Mickey Mouse t-shirt on and ask him "who's that?" He will reply "Mmmm".

He hasn't said Mum or Dad for four months now though, since his regression.

He IS now following simple instructions like sit down, show me splash, brush mummy's hair, and understanding some of what I say - if I hold his socks and ask him "Where do socks go?" He will hold his foot up.

So his receptive language is slowly improving.

He still isn't pointing, and he's 22 months now. He never has, despite me modelling it by pointing at birds, cars, tractors, trees, anything, he still won't point himself.

He also has made up a couple of signs - he shakes his right hand up and down when he wants milk, as it mimics the action I do when I am shaking his bottle to mix the Nutramigen powder into the water. He also makes circles from the thumb and forefinger of both hands, meets the points, and puts them on his forehead to denote glasses whenever he sees someone wearing glasses.

A lot of his communication is non verbal still though - when he wants me to put his car mat out for him, he will drag it over to me, literally PUT the car mat in my hand, and stand waiting expectantly for me to do it.

If he wants more juice, he will stand in front of me with his beaker in his mouth. Then he puts the beaker in my hand. No amount of attempts to get him to say or sign juice are getting me anywhere.

Last night he was pushing my head to DD's belly because he wanted me to blow raspberries on her.

If he wants me to pretend to 'get' him with his foam sword, he will put it in my hand and stand expectantly. If I don't start waving it around, he grabs my hand and MAKES me move it around.

So his expressive language is still not really getting anywhere.

I would say that his receptive language is at about 15mo level, and his expressive language at about an 11mo level.

We shall see what SALT say on Thursday...

Have a look at the PECS threads. He's doing what I think is called objects of reference and that's a good foundation for language.

HV has kicked some arse at the Children with Disabilities team.

DS3 won't be attending MS preschool. Last option has decided his combination of needs is too great.

HV referring to the SN Nursery that I can't get to, and is going to 'harass' (her words!) CWD team to either provide a taxi from DS2's primary right to the SN Nursery so I can get him there OR to provide my Autistic 9yo with an escort for the bus so that I can catch two buses in the opposite direction to get DS3 to preschool.

She's already talking about SN schools...

Wish she had been my HV with the older ones!!

She's also going to do her damnedest to get a 1-2-1 on medical grounds to keep DS3 safe at preschool wrt his allergies.

That objects of reference - that IS like what he has started doing. Plus randomly, the HV saw his sign for milk, and apparently it's pretty similar to the Makaton sign for milk!

I have a lot of questions now for SALT.

Do I try signing and speech combined? PECS? Objects of reference? If signing, then this time I want to PROPERLY learn sign language of some sort this time - when I did sign & speech with the older two that had speech delay, we used signs that we made up ourselves.

I don't know too much about PECS tbh, I know WHAT it is, but not how you go about it, how it works...

I'll try to find some PECS threads on here and have a nosy.

Hang on a gosh darn minute...for the HV to point out that the sign DS3 made up for milk looks like the Makaton sign for milk...that must mean that my bog standard HV knows at least a smattering of Makaton!!

That's just occurred to me!

what can she teach you in my experience and probably yours Couthy nothing

Ah, 2old I know one truly excellent HV in our area and O refuse to deal with the others

2old!

What questions shall I ask at SALT tomorrow? I want to know what will be best for DS3 - PECS, signing, objects of reference, none of the above and concentrating on speaking only...

I want to know if he has Auditory Processing Disorder like DD and DS2. And what I can do to help him and them as their APD dx came AFTER discharge from SALT.

I want to know how and where I can learn Makaton. If I should.

Does anybody have any other questions I should ask?

Oh, I want to know what level they would put his receptive and expressive speech at too.

sorry didn't see this til today, how did salt go? I went on a free makaton course a few years back, was very basic and mostly aimed at teachers and assistants etc but was free to parents of kids what needed. I had to padlock my gob so I didn't give the many ignoramuses in attendance an earful but the woman actually teaching the course was very lovely and helpful. Other than that something special is ace, we love justin...

The makaton training packs are good but expensive, I got second hand cheap off ebay a few years back and then stupidly left them at DS2's school, must retrieve at some point. Perhaps your supadoop hv can wangle you a training course and funding for training packs, on loan will help but you really need to own the pack so you can lend it out or refresh over time, just like learning another language

Right. SALT.

DS3 is a full year behind with his receptive AND expressive language, apparently, so worse than even I thought.

She has given me a sheet with some basic Makaton signs on - which I surprised myself by knowing most of. Thank you Justin Fletcher.

She is going to send me on a course to learn more signs.

Big bonus - they have agreed to allow DS3 to attend the Special Needs Sensory group despite his allergies, as I will be there. They have decided to make the group food & drink free by opening another room up for snack and drink for the other DC's.

Low point was when the SALT made a point of his Autistic traits, and she has said that the reason me doing the SALT exercises I already know with him is so slow to take affect is because of his hyperactivity and lack of focus.

She gave me a chewy tube for DS3 to try to distract from his tooth grinding. And has said that oral dyspraxia, probable Hypermobility, sensory seeking, his flat tongue (?), his high arched palate AND his upper lip tie could all cause problems on their own. Having all six to contend with us going to make progress very slow, verbally, apparently.

However, another bonus is that she kindly told me that as DS2 was still having issues with speech AND his talipes AND possible scoliosis, parents can now self-refer to SALT, Physio and OT here provided that DC has had prior involvement with those departments. So I have.

The Primary are going to fucking HATE me!

They have taken him off SA+ AND SA, despite him still working at a Reception level in English and a Y2 level in Maths in Y4. Once he has got outside involvement again, they will HAVE to put him back on SA+.

She can try to block all age wants, I WILL find a way around it.

Oh - and I have also been told that the developmental Paed now fucking finally wishes to assess DD, DS1 AND DS2 for Autism, to do ADOS testing.

About fucking time, after 10 years trying to get DD formally assessed since the old Paed told me she was on the Autistic Spectrum (without any proper testing), handed me a stack of leaflets about Autism and discharged me to get on with it!!

So, good and bad came of this appointment.

Watched enough Something Special with DS2 - he was non verbal till 3.7, and I credit Justin Fletcher with the fact that he talks even now!!

I wonder whether the family fund might find a Makaton training pack?

Worth a shot, family fund rock, they have also been in charge of the short break/respite funding recently in scotland, don't know if same for your lot but worth sending them an email with all your details and then they can let you know how they could help. Don't be put off by criteria either, once I applied for a big thing, filled out the application and put in a big letter about how important it was and they couldn't help but sent a cheque anyway "from a private donor", amazing, absolutely blew my mind.

This is also a lovely service and I am sure autism qualifies

www.cerebra.org.uk/English/gethelp/library/Documents/Sensory%20Toy%20List%202011.pdf

oh you will look

www.cerebra.org.uk/ENGLISH/ABOUTUS/Pages/WhoWeHelp.aspx

I love cerebra, they have helped me so many times over the years and their design team are awesome. They also did a book about coping with stress for carers which is really helpful and they will send a copy free to anyone who wants it. They may also be able to point you in the direction of other funding bodies locally.

There are lots of new toys since I last borrowed, methinks some new borrowings will please the dcs!

Thanks GoreyClaws!

He LOVED the sensory needs group. He got to play with different toys, be in a room with other DC's (no interaction mind you) he got to do some sticking eating glue, play outside on the slide, and he got 30 minutes in the sensory room, which he LOVED.

We will be going back next week!

The group is like a pre-assessment thing for the Autism assessment in May next year. They saw (and pointed out) obvious Autistic traits, and they could see very clearly his hyperactivity/ADHD.

I have been looking for affordable sensory toys, which is possible if you think laterally.

Also, have stolen a fab idea from the sensory room there - DS3 kept popping his ball pits by biting them, so I had given up and put the balls away. They had them in a travel cot!!

It worked wonderfully, and buys me 5 minutes of relative safety to go for a wee!

Though he has been able to climb out of the travel cot for ages, he doesn't want to quite so quickly now the play balls are in there.

And he has learnt to sign ball and bus in the last two days.

Yay .

up and up

I'm getting somewhere, I really AM!!

Had DS3's first physio appointment today. Physio dxd Hypermobility syndrome, and given the family history, she is asking the Paed to refer to Prof Grahame in London!!!

FLIPPING FINALLY!!

She has also said he has 'rocker bottom feet', she is going to refer to OT and Orthotics for Piedro's as he also has talipes same as DS2.

I told Physio when he was seen about his head when he was just 7 weeks old that he had Hypermobility and would need Piedro's. they told me no, no, he was too young, he was fine...

I BLOODY TOLD THEM!

But we have a brace of new referrals, and an admission that it IS Ehlers-Danlos causing the muscle and vascular issues, and that we all need to be seen by Prof G, which I have been fighting for with DS2 for 6 years.

Happy happy!

That's fantastic!!!!!! Big Mahoosive box of chocolates needed for whoever kicked a*e behind the scenes and finally got you listened to . [Maria pops down to bookies & puts £5 on it being the new guardian angel HV]

it's about time. I've suspected Ehlers-Danloss as the cause of the muscle problems, bowel problems and vascular issues for years.

To have it confirmed that I am most probably right, and in fact score 6/7 on the Beighton scale myself, is quite validating.

It helps me to continue to push on, as I am slowly seeing results.