Can I ask them to assess for other things? and will they if I ask?

[StudentMadwife]

ds1 awaiting conner scale which is being sent here and to school, but I see that it is mainly for identifying adhd.
After many many hours of looking through sn posts, websites, forums etc he fits some things but not others, but hes fits pretty well under SPD, what is the name of the test for this so I can ask them to test for it?

On hindsight i think our pead appointment went pretty poorly, i didnt get anywhere near anough information across as i intended to, forgot most of it and feel she didnt see how at a loss we are at the mo(the "care" thought has crossed my mind several times in the last 6 months)I feel like walking out when hes having a bad few days, we're at a loss and just dont know what to do. I am going to write to the hospital with a detailed account of his behaviour and quirks and want to ask them to assess for spd.

Any advice welcome too please

[TotalChaos]

do you mean SPD as in semantic pragmatic disorder? did the paed say there would be a review appointment after the connors scale. I think definitely mention you are concerned about issues other than possible ADHD, and see what school think too. These days semantic pragmatic disorder is regarded as being on the autistic spectrum, so I would ask for an assessment for autism and also for him to be seen by SALT.

[Davros]

I think you should definitely make them aware of other concerns and ideas you have of possible disorders. THIS is your opportunity, make sure you bring up every concern you have. Also maybe write yourself a crib sheet, first of questions to ask and then description of behaviours, how at a loss you are. I try to bring up every issue at every opportunity without sounding like a loon or telling them how to do their job! Apart from anything else there is then a track record of concerns and it could prompt them or other professionals to give more consideration to other things. I agree that you should bring up "the A word" (autism) because if you don't they might not or they might delay. I read an article a while ago about Doctors "giving bad news", it wasn't about ASD or children & disabilities but I thought it transferred to our situations very well, it is definitely common practice for professionals to put it off, to play it down etc, even though they would probably not admit or recognise it.

[StudentMadwife]

Yes, sorry, sensory processing disorder is what he seems to "fit" more than anything else, found a website-

www.sensory-processing-disorder.com/index.html

and it was as they said, many aha! moments whilst reading through it.

Davros-I was quite proactive writing everything down when we initially saw our gp, but with the paed I didnt want to appear like a nurotic(sp??) mum trying to self diagnose my own child, feel really stupid now as she doesnt really have the big picture.

we have another appointment booked for may, which seems an eternity away at the moment whilst everyday is a massive challenge.

btw Im so happy i found the sn board here, i feel "at home" listening to other peoples posts and problems unlike the "real" world where everyone keeps telling me theres nothing wrong with ds1-it drives me potty- i feel like dropping ds1 at their houses for a 2 week vacation!

am going to try and get hold of a copy of "the out of sync child" to read through, fits ds1's description perfectly and seems to be an interesting read.

sorry for poor spelling etc, im shattered -just got back from work.

[Davros]

I know what you mean. Its hard to get the balance right. I've had appointments where I've been quiet and held back too much and others where I've gone the other way and rambled and not made much sense! I've got better at it over the years but it would be nice not to have to do it! May is a long time, have you made sure they know you will accept a cancellation and phone them anyway in the New Year. But May will come around before you know it too.

[StudentMadwife]

Ugggh, have had a crap morning. dc's woke at 5.30am and ds1 did nothing but fight and argue with ds2 until we left for school. got to school and ds1 would not go into school, ended up dropping ds2 with teacher and chasing ds1 round perimeter of school grounds, finally caught up with him but refused to walk so half carried/dragged to classroom by which time I was in tears. im 5ft2 and hes 4 1/2st, so no easy feat for me.
teacher was v understanding and is getting in contact with the school liason officer so see if she can help. Like I said to teacher, the last 10 days have been v hard-he seems to have a few good days, then a problem period and this time its the longest stretch of bad days hes had for a long time, im just tired of it all and struggling to make sense of any of it.
he seems to hold it together reasonably well at school, so I dont know if they really understand the severity of it either, but they are lovely and understanding and have suggested ds goes into school 5 mins earlier and to drop him in reception instead of the playground and see how that works out.

Have tried ringing HV this morning but not there so have left a msg asking if we could have a referal to CAFTS too and have rang hospital to get name and address of consultant-will have to try and find time at the weekend to write her a letter.

Just feel and because nobody seems to think theres anything wrong at the moment and sick of comments like hes normal or hes just a bit of a handful. MIL this morning helpfully suggested taking him to a homeopath(!?) not quite sure what that would achieve and cant say Im convinced it'll help at all.

Have found a number for a OT off the website that lists the specialist ones and am sitting here contenplating taking him to see her-has anyone else done this? is it v expensive?
dont think i cant wait for nhs to decide if and whats wrong, family could be split into pieces by that point as its putting such a huge strain on dp and my relationship...

uggh, thanks for listening

[magso]

I am sorry life is so difficult for you at present. I have struggled at times with ds and wondered if someone else could do a better job. Since his Dx a year ago (autism/LD/ADHD) life is so much easier in part because I see my instincts and parenting were right all along - and we can access specifically tailored help!
I have resorted to writing to paed and GP with my concerns and even said that I thought he should be assessed for an ASD. We filled in a Conners form when Ds was rising 5 (on which he scored highly for ADHD and LD) and the subject of autism and Ds (limited)language and sensory problems were sidelined! So with the benefit of hindsight I would say do not be afraid to ask for the assessments you think your son needs now and say what you suspect. Looking back my son had classic signs of autism as a young child but he was not diagnosed till age 8. So I think paeds can overlook things! Good luck!

[magso]

Sorry crossposted. ((Hug))
I am 5'2 also and know what you mean! It is a huge strain when others cannot see the extent of the difficulties (like meltdowns after school with only Mum to absorb them - or having to deal with school refusal until the last second when child sees a friend and magically transforms into model pupil!)
Hope you get some help soon! Can Ds1 go to sn club or any kind of respite?

(MIL prob saw comment about recent study/trial on homeopathy being an option for preschoolers with ADHD and is trying to help!)

[StudentMadwife]

Magso-Do you find its slightly easier for you to cope with your ds's behaviour since his diagnosis because you know its not you doing something wrong?

[magso]

Yes! Exactly. I am a lot less stressed and my DH/DF/DPs accepts it is NOT MY PARENTING! But also his teachers understand so others do not give him such a hard time and stoke up his ansiety! He feels better about himself, is kept safe and not punished for things he has little control over at school. School is at last balanced and fair for him. They manage his difficulties (like sending out in the playground for a run when required, or sitting him a thoughtful corner to cool off) so they do not blow up in (the safety of) my face! Ds actually started in a sn asd/mld school before his asd dx - so this had already started to help before his dx. Also I can now accesss autism specific courses (via the nas) and meet others with simlar stories! Ds has become much calmer and although still very egocentric he is much nicer to live with!
The other good thing is he goes to school by school taxi - which he enjoys! So I dont have to struggle to get him there and back! Oh and he eats school lunch (he came home at lunchtime in ms).

The (ASD) seminars I attended suggested that all parents of sn children apply to SS for an assessment of their (parents) needs - and (IIRC) getting child to school safetly was mentioned alongside respite.

[PeachyBidsYouNadoligLlawen]

just a question that may help- are you the sm in smerset? (just due to havin had initial apptb there with paeds and my experienves)

[StudentMadwife]

yes...do I know you?

[StudentMadwife]

Have to go to work now, but will pop back in later to read posts. your posts and experiences are making me feel a bit better, thankyou x

[PeachyBidsYouNadoligLlawen]

not at all lol, I spotted you on the millfield thread as I used to live in Bridgwater (still do the carnivals) and worked at Strode.

Only relevant because I doubt the paed appt was your fault- when we took ds1 (diagnosed as /hfa, statemented) first time we were told that yes he probably did ave but to go away as it wasn't treatable .

So glad by the time ds3's more severe sn came to light we had moved!

The letter sounds a good idea, maybe a diary for them?

[StudentMadwife]

excellant idea, that should really show them how bad things are.

hes VV nearly been run over TWICE in the last 5 weeks