Just awaiting diagnosis... probable Mod LD and maybe ASD, anyone out there....?

[signandsay]

Hi, this is a bit tentative, as I don't usually do internet stuff, am mum of gorgeous 3yr 3mth little boy, have been biting the bums of professionals for last 18mths about son's issues, (lack of speech, behaviour etc) been patted on head lots! have persevered, (and as SW myself knew which bits of legislation they were ignoring!)
We have had 3months of assessment and go on Friday for 'Ta da!!' Diagnosis...
think they are coming back with mod LD and 'some autistic characturistics'. Don't mind lack of clarity re ASD as I think biggest issue is the LD and speech delay, (he has 3 words, although has lots of signs, about 130 so far, as I am fluent signer from work with D/deaf people).
Am finding they don't believe how much he is signing, (cos he doesn't sign with them, partly I guess because none of them are fluent, argh!!)
Feeling little shaky, with my sensible head I know diagnosis doesn't change him at all and may open doors to funding, but it kinda makes it real doesn't it... I seem to spend all my time making sure everyone does what they have agreed to, are supposed to, and being cross at stupid things family and friends say that time to just think about what is happening is in short supply.

Also husband, (who is good bloke) is physically disabled, so am also caring for him and trying to help him overcome difficulties his disablity causes with his parenting of son..

Blimey that's a bit of a tale of woe to send out into the ether isn't it, eek!

Just wondered if anyone was out there...

Hi signandsay, and welcome

I have 3 dds, and the eldest (4.2) has a brain malformation which has given her GDD, moderate learning difficulties and epilepsy. She currently has 1:1 support at pre-school, and will start at SN school in September.

We didn't know she had SN until 2.9, but in hindsight all the signs were there. Like you, we had banged doors, but HVs, physios, etc, had all 'reassured' us, so we thought that we were just bad at this parenting lark.

Fortunately we had a switched on preschool, so her needs were identified early on, then she started falling over, which catapulted her into the care of a Paediatrician.

She now has a statement, so hopefully we are all set for September.

Hi lou031205,

Thanks for the reply! nice to know you are out there....

We are about to start the statementing process but am hoping that the assessments we have had recently will all feed into that, so meaning less appointments, (as that is all we seem to do at the moment!)

(need to ask silly question, am presuming dd abriev for daughter? so son would be ds??? sorry new to this!) anyway he attends SN group one aft and mainstream preschool (with one to one) two afternoons.

Think he will end up in SRP (what would have been known as a unit) in local (ish) mainstream, as local SN schools is either one with v strong ASD focus, (lots of PECS and no signing), or for complex multiple disabilites, which he doesn't need.

How did you find the statementing process?

Yes, DD = Dear Daughter, DS = Dear son. Most people use a number afterwards to indicate position in the family, so DD1-eldest daughter, etc.

Well for us, statementing was actually very straight forward. When DD1 started preschool at 2.6, the only history I wrote down was that she had seen a physio at 17 months because she wasn't walking. She eventually walked at 23 months.

THe preschool approached me after 8 weeks (she had attended for 6 weeks prior to summer break, then 2 weeks after summer break), two weeks into the new term, to say that DD was a little 'behind' and they would like to give her some extra attention. I agreed to her being seen by the LEA inclusion officer.

She was funded for 1:1 from that time.

But then a few weeks later she fell over three times in 1 morning (she had fallen prior to summer break, but we thought she had a virus). I went to the GP, who sent us to the hospital, and we saw a consultant.

Short story is that an EEG pointed to epilepsy and a brain scan was suggested due to uneven discharges. MRI scan showed that DD had a congenital brain malformation.

From there we were referred for Portage, SALT, OT & physio. Although physio discharged her because they can't fix her.

SO, when we went for statementing, we already had a vast number of reports (18) to submit as evidence.

The Pead and EdPsych both though mainstream with support, but when all reports came in, the LEA decided that the special school was best. Which is a good thing, I think.

I wrote the letter requesting a statutory assessment on September 1st, and got the final statement on January 20th, so very efficient. In fact today is the day that I should have received the final statement, so they were well ahead. We have had school place confirmed and transport.

A way bit older now... but my son has MLD and ASD... was very similar at 3.. had a couple of word approximations and that was it. We started the journey early too as DS was very floppy muscle wise, but it still took forever to get the professionals to 'label' him.
It is a shock even when you know it is coming, but it does help in getting services and in stemming the irritating tide of people who say 'oh didn't you know Einstein didn't talk til he was 5..' etc etc!!!

My son also signed (I too am a signer in my job with SLD/ASD children) from early on and it helped so much..tho DS only had a few (the essentials.. food drink).

My son eventually became verbal.. now he never ever stops talking , although it's repetitive because of his obsessions... but has come a LONG way from the locked away little boy that he was
He attends a special school and has made sooo much progress...he is loving and interactive (if a tad 'Rainman'..) and while I wish he was "typical' because of how life will be different always for him, he has made our family BRILLIANT

The early years are filled with appointments and assessments bla bla but we did find it settled (til recently.. whole new set of worries lol)

Early Statementing... VITAL

ps he has a website with our story if you would like to read
charliesmomuk.weebly.com/index.html

thanks lou031205,

That's useful to know, i couldn't believe how long the statementing process took, when SLT first raised it, (early this year) she said hoped it would be completed by the time he went to school (2011)!!!!

Turns out should be finished by this autumn/winter, although not necessarily in time for us to choose shool(by Nov). LD nurse took us to look at both SN school and unit the Unit seems really lovely, really good attitude and resources... It's odd because I really expected to like/want the SN school, but it didn't turn out that way.

SN needs group been brill, and onlist for 2nd aft there, and for portage, (altho list very long here) SN group manager and staff very supportive of all paperork needed to get the one to one funding for pre school,and pre school attitude has been really positive, (although I have had to write and present short course to teach them to sign). As they couldn't organise funding, or access to teaching.

Have found professionals soooo vairable in their responses, could have slapped the Paed, and the Ed Pysch, and kissed the LD Pyschologist, (admittedly he is gorgeous) neither choice would have been particularly useful!

It really winds me up, as I teach SW for one of the Universities and all the good practice stuff that I expect from my first years much of the time doesn't happen.

Sorry that's pet gripe!

Realy glad to hear statementing process ran well for you, in good time too. Is DD looking forward to school?

Hi Macforme,

thanks for response, I will def look at yr DS story this eve, really encouraging to know things settle down, as it has just been a mad whirl of appointments for the last 6 months.

Can't decide whether or not being in the profession helps or not, I think it does, cos I know more of legislation,but also have ended up doing reports and stuff that professionals should have done but didn't. I feel like my DS's SW as well as mum, (altho i know most mum's of kids with SN feel that way too).

Finding the 'don't know-ness' of all this quite stressful, just as you say everyone has useful story of famous person or even second cousin twice removed who never spoke till he was X years old, so that means DS will be fine. Want to slap them!!!!! (sorry barely restrained physical violence appears to be a thread in my posts!

DS is quite different in that he is fine with eye contact and touch and changes to routine, and lots of the things you would expect him to struggle with if it is ASD, but his speech development slowing, stopping and deteriorating back to 2/3 words and his not being fussed about interacting with people, (and other odds and sods) point in that direction...

Diagnosis meeting tomorrow....

DS just now getting into music, (couldn't bear singing when little, made him very popular at the mums and toddlers not!) wondered if music therapy might be useful...

Have you found anything especially useful?

Any tips with regards to social services? I had an assessment for respite care. The SW had a LD team member with her. I have 3 girls, and at the time of assessment they were 3.6, 22 months and 9 weeeks.

On the day of the assessment, DD1 (with the SN) was being her usual self. She was getting sand from the garden and sprinkling it over DD3 (9 weeks) head, interrupting every sentence said, climbing on stuff, very demanding, etc.

The SW asked to see their bedrooms, and DD1 refused to come downstairs and ran into my bedroom, etc. In the end I had to ask the SW to hold DD3 whilst I retrieved DDs 1&2.

The report said "DD1 presents as a lively child who likes adult attention" and recommended that I continue to use universal services and pay a childminder.

DD1 needs 1:1 care at preschool, and we have to restrain her when out (no danger awareness, runs away, impulsive), and she falls & trips and stumbles lots. She holds a blue badge. No childminder is going to take her as standard, and no way could we afford to pay SN rates for her.

Hmm... I have a few questions, Which team did SW come from? Am presuming that it would be Family Placement? (as they usually run respite), does your area have seperate disability family placement, or is it all on together and is it for family based respite care or place in a residential setting?

They may have set criteria for access to respite, but should be able to tell you what that is... Have to say am not too happy with report, as it does seem to minimise issues, did other professionals involved with DD feel about it?

Also may be worth asking them about 'aiming high' funding, as this may (dont' want to raise false hope) another source of funding and is reasonably new gov funding. Here in Swindon there is aiming high team and parents can apply directly, as can other profs.

Hope that helps, (am blowing metaphorical raspberry at the SW on your behalf,)

Hello Signandsay and Welcome!
I have a DS who is 3 and has just been diagnosed today with ASD. He has a significant language delay which was the main reason we got the professionals involved. Its brilliant that you are getting the wheels in motion at this early stage. Who is your meeting with? Do you reckon they will give you a definitive answer?

Also, tell me more about this "aiming high" funding please! Is it only available in England?

Hi waitingforgodot, love the name, now feeling I want nickname 'waitingforthebloodyprofessionalagain' but that might be a bit long

here in sunny swindon early years support team have PDDAG, (damn we profs love our jargon!) Pervasive developmental disorders assess group.

So assessments from all settings DS is in, also LD pysch,(brill) ED pysch,(crap) spec SLT (brill) Pyschiatrist (ok)and Paed (crap)

they come together tomorrow and we arrive to hear the pronouncement !

Am expecting they will fudge ASD issue, (too young etc etc,) but think they will come back with Mod LD and as that is where his main issues are (i think) i can live with that, Is your DS in preschool?

mine is in two afts a week (with one to one)and one aft in (vv brill) SN group.

not sure if aiming high is england only, can ask about a bit and get back to you...

Let us know what they say tomorrow! How old is your DS?
My DS goes to a special nursery which seems to be going well so far.

oops-just saw your DS is 3 too.
No need to be fobbed off on the ASD thing then. Loads of kids are effectively diagnosed at 3

Well it was interesting. The SW was from the team that assesses if you need a children with disabilities team SW Yet she really didn't know anything about the kind of services they might offer, and had forgotten to bring the leaflet that might give a clue [double ] She did have someone from a learning disabilities angle, but he just said that DD needed to be more independent.

Well that'll rewire her brain then

thanks waitingforgodot, think prob with diagnosis for DS will be he doesn't tick some of the boxes, for example he is happy with eye contact, touch, routine changes, eats & sleeps well, but his language development is so impacted, he has some quirks (opening and closing doors/gates etc) but that is less than previous and he really wants to communicate, although it seems that it is only signs that 'stick' in his head, (got 130 now and some two sign sentences starting) he is also starting to notice other kids and want to interact more. I really don't know enough about ASD stuff but it seems expereincially that the major issue for him is the LD....

The SN school here focusing on kids with ASD is all PECS and TTEACH and routines, which all the kids seemed to be getting on great with, but they didn't seem happy with signing, saying they would meet his needs if the LEA felt he was best placed there, but no other child would sign to him, or understand his signs, (like I would want him to go there after that!) and DS doesn't seem to need that level of structure to what he does.

also feeling a bit tentative as people seem to have very strong views on what works or doesn't, and what your child should and shouldn't do, based on what worked for them... which is fine, except they are all different, feels a bit of a mindfield!

Hi Lou, yeah some areas will assess with a worker from the MS team, (which is gonna be mostly child prot stuff) in order to then pass on to the Children's disability team, which is ok if the person has that knowledge, (and some do) but if not then you are a bit stuck, I presume it was an initial assessment she did, if I remember right, (and it has been a while) they are completed to the assessment framework and there is guidance about disability issues, (both if child or parent is disabled.)

If you are not happy that the assessment saw the real picture then I would ask for re-assesment, esp if you feel situation has changed... was the LD person known to you and DD? did they not challenge what the SW said?

As for being more independant.... did he have any idea how that might be achieved???

hi signandsay and welcome. how did it go today? just to introduce myself - i have two boys aged 5 and girl aged 7 - boys diagnosed with ASD at age three years one month. DS2 also diagnosed with SLD and possible ADHD - going through that assessment at the moment. I also am SW in previous life! I find mumsnet invaluable esp SN section, I must say. Couldn't do without it!!

Hi kerpob, actually went ok, lovely LD psych who was giving feedback allowed me to sniffle in appropriate places, even had pocket full of tissues, bless him!

DS has mod LD as I thought, and some ASD characturistics, but as he is un typical, (if there is such a thing as typical) and because he has actually made lots of progress recently with the ASDish type stuff they will review in 6 months, before statement is complete and school must be chosen (in Nov) may then say yes has, or his cont development means they think no.

Actualy was very impressed with them, and with process, have all the reports to read and can meet with LD pysch again to ask questions we couldnt think of today, he also said (and I realy feel he knows his stuff) that he felt DS had come so far cos of work me and DH had been doing, which felt really nice, as i had been doing that parent guilt of what if I have done the wrong things, (DS signs really well but speech is minimal, and
some things people have said made me think I should have focused on getting speech, I mean we always sign and speak and I always vocalise what he signs, but have gone for the most developed and usuable vocab, rather than he must speak)

PS blimey you must have hands full!!

PPS what area of SW?

waitingforgodot, have checked and aiming high just in England, are you scotland or wales or NI?

signandsay

How do you feel after your meeting today? It sounds very positive! Good stuff.
Am in Scotland-shame about the aiming high funding. I wonder if there is a Scottish equivalent?

Hi waitingforgodot, actually feeling ok, feel like they were listening, did a thorough job, and was impressed that they had thought about timing to review before statement and school choice, and feeling quite lucky after reading some people's experiences!!

DS just got communication book/file yest (with board master symbols on velcro, had been worried about it, as I know human nature is to go for easy option and people like preschool will take easy option and use symbols and not sign to him, and his signing gives him so much more scope. But SN group who organised/produced it have written in front in bold this is back up his primary communication which is SSE, so am relieved.

Been asked to start at extra group too, which should (fingers crossed) be good for DS and also will allow them another area to assess him for the review in the autumn. Pleased but this is another thing I have to do with him, am feeling bit envious of other non SN mums who get to drop off at preschool and have a life.... (ah well!)

Gonna start going swimming (yippee just me!!) when he is at his two pre school session tho, something just for me.

Will check out about scotland and let you know.

What a great positive attitude you have!

Oh caught me on a good day!

Gorgeous LD psyc, (really should stop calling him that, as he may get to hear, and wouldn't want him to be un comfy, but it amuses me, and makes me feel like I have a bit of power in the situation even if it is only to fancy someone, DH knows and teases me, which is very generous of him)

Anyway, LD psych and I were talking about frustrations with other professionals and how it becomes adversarial, and a battle and he said some stuff, (very sensitively) which has made me think I want to seperate DS needs from mine,

These are tentative thoughts, so pls cut me some slack, it's almost like I need them to believe me, to recognise my expertise in the area of my own son, but DS doesn't need that, he just needs his needs met, if you see what I mean...

So I can take my frustrations and explore them somewhere else, (and also my needs for own space/time/life ect) and with the profs concentrate on laying stepping stones for them to cross to get to appreciate where DS is and what he needs.

Yeah I know fine in principle, but it feels good to think about it those terms,

how is life with you?

That makes sense. Dont hand over all the power to the professionals though because you are the one that knows your child the best as a parent.
Sounds like a great professional to have on board!

Life with me-well today I am nursing a hangover and looking at all the work I have to do before DS comes home from Grans. The sun is shining though so at least thats something!

Am impressed with the getting of hangover!

Hope it was fun!

sunny here too. DS outside sitting under climbing frame singing to himself, and I get to make a trip to the tip later, will be highlight of DS's afternoon.

PS waitingforgodot, know what you mean re professional and handing over power,think meant it more as a way of thinking to keep self sane, pragmatic responses in order to get son's need's met... while taking frutrations elsewhere.