so so tired,

[lisa35]

Hi all,my 11yr old has just had approx 18 months of assessments, OT,SALT, clinical pysch,all say are some issues, but doesnt meet dx of asd,tho has some social skill problems,and difficulties acknowladging others point s of view/emotions,etc

 

What has reassured me is the support we ve had from all specialist people we ve seen , even tho no definate dx still acknowladging his difficulties

 

Thing is, do many children end up with no dx but still have traits,if so what do u call it!!?/

 

Also,just feel so so isolated at times, friends dont really understand (think u just pandert to them when I say I have an 11 yr oldt that still shouts me when Im on loo, asks what shall I make/draw/etc!, still have to prompt/ run bath for,familiar to anyone???

 

Guess,mentally we re exhausted, he s almost like a 7 yr old emotionally, yet so articulate, can hold a real good arguement (almost adult like??)

 

This is all rambled cos tired, but feel recently he s getting more dependant on us, we dont insist he stays overnight at things like scout camp anymore as it makes him so anxiuos and hyper, but seems to be leaning on us more and more

He is hopefully going to an ot group with similar kids to practice daily living things,like getting a bus,etc, hard to think such simple things are hard for him

I spose feellike let him down a bit as Im so inpatient with him this week, just long for bit of normality!?> Though saying that, watching other kids same age , they are so manipulative, different to Joe,he s so sincere, and kind, never say anything nasty to others

 

Guess just having a awhy me/us moment, moan over, just nooone else understans unless theyve got special, unique kids like ours xx

 

Lisa

[cmuir]

Hi

 

Difficult one! Do you think your son has AS? If so, INSIST on a diagnosis! Don't take no for an answer. Remember that specialists only see children for a very short time and it may be over a period of once every 3 months or something like that. In my son's case, he's mild but has very big behaviour problems. These specialists would turn up for 20 minutes at the nursery and see him on a good day and conclude there was nothing wrong. However, when they asked the nursery manager, they heard a different story. I also kept a diary over 8 months detailing on a day to day basis all the odd and extreme behaviours ie things that just weren't normal. Our GP and HV said nothing wrong. It took 2 years to get past them to get a referral to a Paed who was equally as useless. But gut feeling (my heart and my head!) told me that I was right which made me even more determined to get that label! Sounds like you're half way there already since there is an acknowledgement. Problem is that, certainly in my case with my son, there was no help whatsoever until we got a diagnosis. Pester power really helps! I kept phoning these so-called specialists to tell them how bad things were getting. I'm convinced they saw us because they were sick of me phoning! Eventually I heard of a fantastic specialist and eventually saw her who didn't hesitate in diagnosing my son. I remember bawling my eyes out in the consultant's office with sheer relief. I was petrified she was going to say 'inconclusive' or 'not AS', 'don't know' or something similar. Once I composed myself, I asked her what happens next. Couldn't believe the response ... 'Well, he'll get support from X, Y and Z' was the answer. I genuinely feel that it's very convenient not to give a conclusive diagnosis as it covers back and saves money. That sounds very cynical I know, but it doesn't help. Each specialist I saw with my son, I explained that I was desperate for a diagnosis because I felt it would provide answers, my son would have understanding, and he'd receive help. It's for those reasons that your son needs a diagnosis. Best of luck.

 

Caroline.

[krystaltps]

There's also PDD (pervasive development disorder). When C was going through dx, I was naturally reading up on everything available, and came across this - it's the label given when the child doesn't quite meet the diagnostic criteria for AS/ASD, but has obvious problems or ASD traits. I asked our paed shortly before C's diagnosis about it, when I was stressing about potential non-diagnosis. She said it depends on what local authority you live in. It may be worth finding out if it's an "option" in yours.

I agree with Caroline as well, you should insist on a re-assessment. C's ADOS was carried out on an "average" day, if he'd been having a (rare) good day, the outcome may have been different.

[Elanor]

You could call it 'autistic traits' - but I agree that you really need something more specific - this sitting on the fence attitude about diagnoses is often because you haven't got far enough up the feeding chain. Is there an autism specialist child psychiatrist in your region? The NAS might help locate someone, and you could ask for a second opinion on diagnosis.

 

I really understand the feelings of tiredness (I'm feeling engulfed by it right now, after a morning of trying to find lost items and treading on eggshells) but things really do get better. Your son might behave young for his age, but he will continue to develop - more slowly than normal, but development nonetheless, and you won't always feel like this.

 

Hope you have a better day today.

 

Elanor

[oxgirl]

Also,just feel so so isolated at times, friends dont really understand (think u just pandert to them when I say I have an 11 yr oldt that still shouts me when Im on loo, asks what shall I make/draw/etc!, still have to prompt/ run bath for,familiar to anyone???

 

he s almost like a 7 yr old emotionally, yet so articulate, can hold a real good arguement (almost adult like??)

 

This is all rambled cos tired, but feel recently he s getting more dependant on us

 

Yes, this is all totally familiar. My 13 year old is exactly the same; needs constant promps and reassurance and has absolutely no independance, can't be left in the house alone for five mins, is terrified at the very thought of leaving the house alone (that's years away), is more like an 8 year old emotionally but very intellectual.

 

You're certainly not alone, all of us here understand how isolating it can be, but we are here to support you. <'> <'>

 

~ Mel ~

[lisa35]

Thank you so much all , it really helps to come here

Im thinking that probly the paed will give us a final summary/ dx as now all assessments are complete

To be honest, we are getting a lot of support, more than it seems most of you do, my heart goes out to you all, it really does

I thank my lucky stars for supprt we re getting

Guess I just needed a moan, he seems v down at mo, almost depressed, think Iv e probly made him worse as Im so short fused, must try harder!!!

Lisa

[Rachelp2]

Hi Lisa,

 

Sending huge hugs your way - it relaly does take it out of you <'>

 

Usually what happens when a child does not fit neatly into the criteria they usually dx PDD-NOS (pervasive developmental disorder not otherwise specified) but I hate this as it's not as recognised or accepted as an ASD (Autistic Spectrum Disorder) so even if he does not quite fit it is still poss to get a clearer dx which will be more usefull.

 

I wouldn't accept the dx of PDD-NOS years ago, they gave it to Dan as he had a sense of humour!!! He was not supposed to have one if he was Asperger's this was so wrong when clearly everything else was him to a T ! As the years have gone on, there is no doubt of him being on the spectrum and because of his clear DX in the end he has had the help he needed with schooling (statements) DLA help, and all round understanding from anyone who's come into contact with him so it really is worth pushing for what you think/know he has.

 

Good Luck & very best wishes Lisa,

Rach

[bikergal]

Hi, keep with it, most of us here know what you're going through. My dd1 (13) is not at all independent and needs constant instructions on what to do and when to do it . I'm just thankful she doesn't get much homework at the moment as her interests take priority. I was reading elsewhere on here that someone was hoping to have living skills taught via OT, does this really happen? My daughter could really do with that, as she won't listen to me and has no interest in learning how to make a cup of tea, etc.

 

My dd1's diagnosis is not exactly what I wanted...she was diagnosed with atypical autism and pdd last year. From what I've read all autistic children have pdd but not all children with pdd are on the autistic spectrum. Confusing isn't it? I tend not to mention pdd as I feel the term would confuse and mislead people, my daughter is on the spectrum and I felt the term ASD would have been better. But that's life!!!

 

Keep your chin up and take care <'>

[dooday24]

sending u lots of these sorry have no words of wisdom <'> <'> <'> <'> <'> <'> <'> <'> <'> <'>

[lisa35]

thanks all, Rachel - your boys handsome! A grand lad as us up north say!

 

Thanks for all the kind words,he s much happier tonight , just resent the fact that life has to be so m much tougher for our fab kids!

Maybe when we have appt with the paed thats what she ll say

And once hes started a group with the SALT & OT to practice social stuff more, he ll not seem as "quirky" to others

To be honest hes just who he is to us and ours, but others judge unfort, feellike shaking them and saying give him a chance! (to other parents who never invite him back when their kids come here!)

Lisa x

[butterfingersbimbo]

hang on in there lisa, i hope you get the answers you are looking for soon! <'>