Feeling low - Trapped between two worlds

[MustBeMadDoingADegree]

Hi, i have posted before, just name changed...

I dont know if i should post this, or if its something others have experienced...

I am begining to feel more and more pushed between worlds.

DS is definately NOT NT, and where he is concerned, we do not fit into this world. he is odd, quirky, behind emotionally, socially, adademically etc etc... and i can find no common ground to talk to other parents, and DS is becoming more and more isolated as he tries and wants so much to be liked, have friends and please people, but knows he doesnt "fit" with anyone.

But also he is not bad enough to fit into the "Disabled" world. There are groups we are involved with, and i feel like a fraud being there as all the kids are severe autistic, physically disabled, Medically Ill, etc etc...

Has/does anyone else feel like this, or am i being over anxious/paranoid/need-to-reasess-the-need-for-mental-help......

Have a look at the last few posts of my "can asd have friends" thread.

I know my thread was purely in regards to the "system" but it spills over into everyday life so often. eg - a regular playscheme is hopeless, but he doesn't qualify for the SEN ones & even if he did he needs playmates "on his level" so to speak.

Does he have a dx Must? How old is he?

Sorry you are feeling low.

yep, I know the feeling (tho atm school is going pretty well, thankfully). as I posted on boc's thread, my lad has one of the wishy-washiest dx's ever!

Thanks for the replies...it does help a little knowing im not being selfish/mad thinking this way...

Ben10, i think part of it all is that he DOESNT yet have a DX. 3 years of trying and still nothing! it is ASD....probably aspy.... as DBIL is aspy, DH has some OCD asd traits, and DS is already involved with a mainstreem ASD kids charity who tell me all the time i am right!

He does have Nystagmus, a visual impairment, although his actual acuity is fine..and has a "borderline moto co-ordination dificulty" (just flippin say dyspraxia!!!!)

School are not the most helpful people, with a few making me feel like crap, and although he wants to go to school every day, and enjoys it, as such, they seem to be failing him with listening to me, or fighting for more help for him (they are not doing).

bochead, i know what you meen. DS tries so hard to "fit in" and wants to please everyone. He imitates everyone giving the behaviour he thinks they want from him, be it lad mates, girls, teachers, grandparents, or us....
finding the right level for him is hard, he is most comfortable when with smaller children, but thats not going to help him or develop any skills, but putting him with kids his own age, he usually ends up playing alone...or finding someone he can take care of.

he likes to feel needed, wanted, and grown up. he can get this when with younger kids, poorley kids, or even adults who engage him with "can you....?" "will you help with....?"

ThelightPassenger. Is your DS statemented? xx

No, he's not statemented (he's v placid and manages well academically at school, and he's known the other kids since nursery so they are used to his quirks). It's a v small caring primary, I don't anticipate major problems until secondary. School tend not to see any problems (apart from one excellent teacher last year), but friends with kids on the spectrum and some close family think he is on the spectrum. I think the old Semantic Pragmatic Disorder dx would have fitted best. He also is happier with younger children tbh.

I too feel that somehow there must be a mistake that DS got an ASD dx as there are so many children who are so much worse affected than him and less able to fit into M/S. We just got the dx last month after 18 months of assessments. We also get HRC/LRM when we just had dyspraxia/visual difficulties/sensory difficulties/?ASD.

However then I went to the park with him and realise that all the other kids want to play on the playground or throw stones into the river. He is fixated on crazy golf. It was closed. There was an almighty problem..........

DH was going to stay out tonight so DS could sleep in our bed. DH is now coming back, DS went mad when he found out.

The rigity is there, all the time, I'm just so used to it as part of his behaviour I don't notice. I'm too busy making adaptions. I bet you do all the time too without even realising it.

As Leonie said, you are definitely not alone.

v good point Ben10 about being so used to the adapations that you don't notice them. As while the school situation seems straightforward, and trips out and about are easy, there are a lot of under the radar issue:-food (just about the fussy side of food phobic), constipation/toileting (don't ask!), bedtimes (v late, below average need for sleep), and still watching Cbeebies and Dora the Explorer at 8...

I feel like this all the time, in the right situations ds looks and acts like most other kids BUT that is almost always due to the right adaptations as BEN10 says. In other situations he is so utterly different it is not funny. He does qualify for some one on one at school as he can't read or write as well as needing support with transitions, social interaction, paying attention etc (he gets one hour a week!) We do qualify for the Aspergers support get togethers but he doesn't cope with groups of people he doesn't know well and it is an excercise in misery for all concerned so like you I feel a bit on the outside of both worlds. As with

thelightpassenger my ds is also still watching tv aimed at much younger children and also wants to listen primarily to stories for younger children as well (he does ask for chapter books to be read to him but a lot of the time I think he does it because he thinks he should be interested rather than actually being interested in them). He also doesn't need as much sleep but is good about bedtimes he just stays there awake for ages. Also had both constipation and toileting issues...they are very alike by the sounds except for school being straightfoward and trips out and about being easy they divert from each other drastically there!!

Yes it is all one world but it's easy to feel alienated from it! I had the same problem particularly when ds started ms school without a proper DX or adequate support.

Honestly? That part of life won't change, even with a hundred diagnoses. DD1 has various 'symptomatic diagnoses', ie. lots of labels that describe difficulties, and features, but don't actually ascribe a cause. She also attends Special School. I often, often, start to think I am making up her difficulties, despite this, because I am so used to our 'world' and the adaptations I make to every day life. It's only when we step out into the wider world and I see children of her age doing things independently, that I realise that she isn't like 6 year olds.

I think zzzzz is right though. A dx makes no difference to what is going on in your lives or your lovely childrens issues. It all still remains the same and life still goes on the same around you. :) The only thing a dx can do is help you realise its not your fault, stop the blame parents from schools perspective and help you shout that little bit louder to make sure they have the support.

There will always be hurdles to jump for our dcs. Some small ones and some mighty big ones. NT children have hurdles ours is just that bit more effort (a LOT actually).

I think its one of those things you have to try to harden yourself against. Yes it hurts me like hell when I see my ds struggling and misunderstood or even ridiculed and first instinct is despair. But that is one thing we cannot spend our lives protecting them from and it wont do us any good despairing over it either however frustrating it may be.

Down here in my area there is no support, no sn clubs, mums coffee chats. There is only one NAS branch in the whole of Cornwall too far for me to travel too given home pressures and a rubbish camhs that kiss you goodbye if you get an asd dx. So I guess that gives two choices, sink or swim. :)

Yes I have felt like this (waves at thelightpassenger) though I don't at present.

I noticed when I was a regular on this board that parents of children with moderate/severe/profound SN also often described a sense of not belonging. So I don't think you necessarily get a sense of knowing where you fit/certainty even when your child's needs are more pronounced.

I guess in a lot of ways that the needs, abilities and difficulties of all children are so diverse that it is the same with children who have special needs. No two children with Aspergers, Autism or other need are the same, children often have co-morbid conditions, the country, culture, family support, economic situation all have impacts so that no ones experience is truly comparable to anothers.
For me I think that I struggle to find common ground with almost everybody. I know one other family with a child with Aspergers but our children are leagues apart in presentation and ability and while we can as parents acknowledge that we share a diagnosis and have the patience to listen when the other needs it, we can rarely say "oh, I have had exactly that, I've been there" if that makes sense. Also for me having a child on the spectrum makes it very difficult for me to objectively judge my parenting, I often have no idea if what I am doing as a parent affects him in a positive or negative way as it can be a very, very long time for his behavior to change...you just never know if it was going to change anyway just because it is a new chapter in his life or if the parenting techniques we are employing have an active role...does that make sense

Thankyou everyone for the replies. it is great to know im not alone feeling like this.

to be honest i think i was having a bad down few days (damn hormones). and i do feel a bit better about things. i still feel a bit seperated, but not as bad as i did.

its not that i dont see it as one world, but its the way it works...you cant talk to you parent friends about the SN needs of your child, coz they dont understand, but when you try to talk about the needs you have with other SN parents, they look at me like i dont know how lucky i am not having this issue, or that problem.... :(

As i said before, DS is involved with a ASD mainstreem kids chairty, but thats for him not me, not his dad, not his sister.....

the reference to not having a DX was purely becuase i still get treated like a paranoid parent who is making stuff up, and not having a DX reenforces this attitude from some.

the reference to not having a DX was purely becuase i still get treated like a paranoid parent who is making stuff up, and not having a DX reenforces this attitude from some.

I sooooo understand where you are coming from there and how frustrated and angry it makes you feel when you just as well talk to the wall. Bit like you are in a bubble and no one can hear, see or understand you x

Glad you are feeling a bit better :)

Thanks coff33pot.... xxx :D

I also understand this too- and I like the bubble analogy Coff33pot.

I think as time has gone on I have changed - I have a better idea of why and how best to support ds and the people around him, got more comfortable in my now thicker outer skin so to speak and accepted that Ds has a disability all be it a very unique ds shaped one.

When ds was smaller the unknowns were huge ( even such things as how he would behave in 5 minutes time were less predictable) so it was a constant round of 'firefighting', worry, huge responsibility to do my best by ds etc. and some 'grief'. Other parents ( whatever their own childs unique needs) do not know how to help.

Now when I meet up with other sn parent we can support each other despite our very different children. There is a collective wisdom and kindness that surpasses our differences and connects with our similarities.

Now when I meet up with other sn parent we can support each other despite our very different children. There is a collective wisdom and kindness that surpasses our differences and connects with our similarities.

This is so true. We go to a sports group for children with any disability or additional need. We are now a community to support each other regardless of whether it is a physical disability or a developmental disorder. I am learning so much through them. For instance I had no idea about the problems about changing a child/adult older than a toddler who still isn't trained. I then joined their fight to try to get the local hospital to get a Changing Places toilet (there is one in our whole council area ).

I so wish i could find a group like that.
there are several parent groups arround, but they are either very specialist to the disability, or seem to attract the kinds of parents i talked about above.
I think i have just yet to find the one for me, and have to keep looking, and trying.

its just so hard being an anxious person, who struggles with confidence as it is.

Thankyou everyone for being here...at least here i dont have to leave the house, or physically be looked up and down, and judged.

:D

Ours is run by our local School Sports Partnership and has children with CP, heart/lung transplant, ASD, chronic lung disease etc. It might be worth calling yours up to find out if they run any disability sports. We sit and have tea and biscuits while they do their sports :) I hope that you do find something for you. We also have an ASD support group that runs a weekly coffee morning for parents - they even run a self esteem course. I haven't joined the group yet but have been along to the coffee morning before and they were happy for me to attend even before dx. The other thing would be your local Carer's Centre who may well run regular support groups and these would normally be for mixed disabilities.

We are always here. We have all been there in the same position as you. Any questions, any help, just ask - someone will be there and know the answer or even just offer you a (((hug))) or a

Thanks for the hug, and thankyou for the brew :)

i will try and find these places you talk about, and see what groups are out there that i have missed...

on a different subject (and possibly sore one for you) how has life changed since ben10 has gone? please give me some hope...i thought we had moved on from this, with the introduction of iron man, batman, and slowly getting to know the difference between DC and Marvel....but no!! ben 10 is still VERY much in the picture, with "im not DS im BEN!" "dont call me DS my name is BEN!" etc...lol
even the poor lady at the gymnastics shop was overwhelmed with information about ben 10 (not only does she deal with girly things not boys thing, but she doesnt even have a son..only daughters so hadnt got a clue in the slightest that it was even a cartoon let alone about vilgax, omnitrix, gwen, kevin....blah blah hahahaha)

the sounds he makes imitating the omnitrix, and the american accent he has devised are possibly the worst things hahaha

Ben10 has gone for definite. We are now firmly on Marvel and DC. It took a while for Ben to go but DH is a comic geek so has nurtured this obsession.

I don't think that DS went as far as to actually BE ben. He doesnt have any imagination so couldn't imagine being Ben10.

Good luck for you and getting rid of Ben. THere are so many boys obsessions though - Bakugan made an appearance yet?!