Do you ever feel like you don't belong anywhere?

[5inthebed]

I've been kind of avoiding the SN section for a while, as have felt that I don't belong here, that DS2 isn't "disabled" enough for me to be allowed to moan on about him and to get advice about tuff .

Mostly because he is in MS school. I know, I know, it' a silly reason. I think I've been trying to brush his autism under the carpet, pretend to myself that he isn't as bad as I've made out because he is going to a "normal" school with "normal" children that there are no problems and everything is fine.

But the truth is, I do need to post here. I do need to know that what he is/isn't doing is normal and I certainly need to support others going through what I have been through. DS2 is disabled, he is hard work, he is that child that most children avoid on the playground because he makes weird noises when excited.

I have no other parents on the school yard I can talk to about DS2 as he is the only one with an ASD that goes to that school. I sometimes have pangs of regret about sending him to MS school because nobody undertands why I get upset about forgetting his packed lunch. I just don't belong anywhere!

Sorry for the little rant/feeling sorry for myself, it's been one of those days. Feel a bit better for blurting this out.

Hi there,
Post on here.....at least we understand the difficulties you're facing. Besides, who wants all their kids to be 'normal'? Variety is the spice of life and all that. The world would be a very boring place without autism.

Hi there

My DS is 5 and currently being assessed for ASD with an interim dx of developmental delay and social communication disorder. I definitely share your anxieties, especially regarding other parents at school. It's still quite early days for us but I'm currently feeling awfully alone with it all. At school, I'm sure it's apparent that there is 'something wrong' but I don't know anyone well enough/haven't had the opportunity to open up/no-one's expressed an interest. So for all I know the other parents have just marked us out as weirdos and are giving us a pretty wide berth I do struggle with this as I've always been quite a sociable person up until now.

I'm quite new on here and sometimes feel exactly as you did... a bit reluctant to post on here because our difficulties go up and down so much I'm not sure whether I 'qualify', and yet so very isolated in real life that actually some of the advice/sharing on here (even when not directed to me iyswim) is an absolute life line.

So no, it's definitely not just you

Oh 5inthebed, there are lots of us who feel like that. My DS is exactly the same. Sometimes I think I'm going mad and making too much fuss and other times (like tonight when he told me that with the pizza at the local swimming pool cafe you get 37 chips when you only get 20 with the chicken nuggest )I know there is something very different about him that others don't grasp/understand. So I feel most at home here, even though there are many people on this board whose problems are far, far worse.

I don't know if this is any use but a few weeks ago I sort of 'outed' myself to other parents. A select few. Nice mums who I chat too. I told them about DS and his 'issues'. I've only ever had positive comments and offers of help. I think it is isolating but we can make it more so for ourselves. If people want to judge than that is their problem.

For the real tough stuff, I come here! And you must too.....

Yes, but it was much worse at the start when my ds was first being observed by lots of professionals. I had just moved and felt incredibly alone, even though my family were trying to be supportive and ds was getting support. I just didn't want to talk to people with nt children (my problem). Now ds has settled at school (he was at the ms nursery joined to the school). I have worked hard to be more open with people, not that I am close friends with people, but I do socialise if I can - before I was going through that sort of sn grieving process I have heard about on here.

I also got involved with the school, to try and get to know people, not for me so much, but so I could understand the school better, and maybe be a sort of subtle advocate for my ds.

I do understand the feeling that you are sort of in limbo, ds is mildly affected in SN terms, he doesn't fit into the NT world either, I just try and remember everyone has worries and take everything one step at a time.

I do come on here for support, have name changed since I first joined MN, several times, but I do think the sn board is a great source of support, information and advice. I might not have much to give, but I do always feel welcome here.

Yes I felt this for many years - still do but more at peace with it now. I feel more that we have a toe in the nt world ( ds is healthy) and a foot in the sn world! This board is the exception though in comparison with some our family life is easy. The sn system did not know we existed - until after years of struggling it all came at once statement, sn school, severe autism Dx with M/S LD, CAHMS support, sn playschemes, help with continance issues at last, salt, Ot starting at 9, beginning to find others that understand-DLA, and for a while it looked like we might get a little respite.

For me those first couple of years in ms school were hard for all the reasons you have cited - lack of understanding and support from other parents, (Ok downright bullying ignorance from some) seeing my child go downhill and loose skills and get neglected and bullied, lack of the basics that we and ds needed,(ds never did become ft in ms) having to fight for everything, constant exclusions ( mostly unofficial like school trips or because of continance issues)social isolation - I could go on!

So I feel for you with your little one! But do go on posting here. It is available night and day. The official support services are there -- eventually!

5inthebed sorry you feel like this.
I don't belong on here really, I find that I am often ignore or can't join in iynwim.
have you joined TTR it is a good place if you are feeling a bit alone.

You are not alone feeling like this... sending you And if you feel quite alone and if you don't post on here, then who will listen and understand?
I feel exactly like you described above , no one around me who i can really talk to, don't know any anyone at DS's MS nursery who is in the same boat as me.
And some days i think that DS isn't really that bad! Even the paed says it's 'mild' asd, and i feel like we sitting on the edge of things not quite NT nor quite SN.
We go through phases with DS 's behaviour being very good , where he could easily pass off as totally NT, and other times when the asd seems to surface again and everything goes down the pan again.

Feeling like what you describe is what is stopping me from actually going out to our local NAS.

2shoes, I am on TTR, but find it hard to read

When ds2 started MS school, after a year of doing half SN half MS nursery, a few of the parents were a bit rude about ds2' behaviour, not their fault, they don't know him so since then I've given most of them a wide berth. There was an incident where some kids were getting hit by a child during break times, and their parents all though it was ds2. It wasn't, but because they have seen him roar like a dinosaur in their child faces (like he does when he is excited to see someone), they automatically assumed it wa him.

I tend to stay in with the other mams from DS1's class that know about ds2 and don't bat an eyelash when he rolls around in the puddles. But I still can't speak to anyone of them about his behaviour or how down I feel because he has been so hard to care for for a few days I've tried, but just get the face when I say that he does it X because he is noise sensitive or Y because he is stimming or excited. I'm sure they thin I make half of it up.

Magso, DS2 is statemented, has a SW, has respite, SALT , OT and access to a SN toy library scheme. I still feel out of my depth with these as well. Maybe it just because we have only been involved with it all for about 2 years now, and still new to a lot of stuff.

DS2's 1:1 is lovely, very patient with him and always says how lovely and easy he is to look after. Makes me quite that she gets to see this side of him more than I do. But I can't fault her, DS2 loves her. She even brings him around to where DS1 comes out of school so I don't have to stand and wait for ds2 by myself feeling self conscious.

MSB, ((hugs)) back at you. His pead has said he has "the nice side" of autism. Like wtf is that? Am I meant to be greatful?

Go to the NAS thing!

5inthebed hugs

I too feel like i dont belong posting here sometimes

Dd has no dx, we are waiting on appt with cahms at the moment but the struggles we have sometimes mean I really rely on info from here and other online places. Like tonight posting about DLA, which, in context is just extra hassle that isn't needed. At the moment I am scouring the web for seamless socks, this is proving a nightmare for us every morning and for what reason? I don't know!

5inthebed, J is in mainstream too! Remember, MN doesn't have the wanky criteria that every other bugger uses to exclude parents

I don't think dx/ severity/ school placement are what give people a voice on here, it's about what they're going through and how many have been in that situation and can advise.

busybeingmum I will def check M&S for seamless socks, thanks so much

Thank ladies . Feeling a bit better this morning after posting this last night and reading all your comments.

I'm off to M&S later to hunt for seamless socks!

It's funny, I find ds1 is too disabled for most of the SN threads which seem to me to be biased towards ASD in mainstream!

I think you just post what you have to post and see what you get back rather than be too conscious of levels of disability.

Riven,
Sorry, I didn't mean to offend anyone with this comment....which is why I put 'normal' in quotes. I was really referring to the quirkiness of mild autism, not the life limiting multiple impairments that your DD and others have.
I think Donkeyderby is right in saying that most SN threads are biased towards ASD. That may be because special needs in education tends to refer to that type of difficulty as opposed to children with disabilities.
Would it be useful to have a separate thread?

Hi Riven,
Sorry, I'm probably not explaining very well.
SEN in mainstream schools usually (and I'm emphasising the usually here) refers to children with impairments such as ASD, dyslexia, speech and language etc. In many cases, once children have been given a diagnosis of ASD (for example) the medical profession back off and leave it to the education system to pick up the pieces. Hence special educational needs.
A lot of mainstream schools don't take more disabled children. Thinking about it, I have worked in around 20 schools and only one had children with complex disabilities....and they had a unit attached.

I know how you feel 5inthebed, we all do from time to time, but talking to each other is still the best we've got, and enormously helpful, at least to me. If we had to find only people whose situations exactly matched ours, we'd all end up in our little separate box, not talking to anyone. We still have more in common with each other than with someone who hasn't had the experience of dealing with SN at all (saw your other thread ).

I at least don't want a separate thread, because I'd be alone in it, and I talk to myself quite enough as it is . Dc's disability is so rare that a recent survey showed that an average time for diagnosis after the first pain symptoms start is 10 years- and that's not because there aren't any tests but simply because doctors won't have heard of the disorder.

I still find this forum immensely helpful, not least because it's somewhere where I can rant without making the parents of NT children feel too uncomfortable or guilty. We're in the same boat here-- or at least in the same flotilla.

i always think the main reason this topic is mainly asd/autism, is that that is where there is a lack of rl support.
in rl I have lods of support from dd's school. my problem is meeting other parents in the same boat(although I have met Donkyderby)
trouble is even if I try to join in on threads here, I am often ignored and If I start a thread it is often hijacked..so I don't bother much

Not much support for the really rare physical disabilities, 2shoes, particularly not the ones that take a long time to diagnose (unless you count accusing the parents of sexual abuse or Munchausen as support). And in our LEA, physical disabilities are not statemented as a matter of policy, so unless the school is good on their own initiative (as dd's current school is, but her last school was not), your only hope of support is threatening to sue according to the Disability Discrimination Act. To me, this forum has been great.

I spend a lot of time feeling very isolated in RL, despite being a generally 'sunny' person, with some lovely friends. Sometimes I feel incredibly depressed and cannot leave the house. But it usually passes after a couple of days.

I am not particularly 'well known' on MN because I don't post all the time, and I do feel very much on the periphery. But that's OK, maybe if I posted more I would be more accepted. I don't know.

So there you are!