Having a neurologically atypical child is isolating

[thegreenlight]

I have a now 8 year old who probably has asd/adhd and I have no mummy friends. His odd behaviour has led to party invitations drying up and his behaviour at other people’s houses mean no return visits. I couldn’t take him to a coffee shop, he can’t cope with soft play and needs constant adult attention. He is silly at school and so no one wants to play with him or build new friendships. So I have begun to avoid people because policing his behaviour is exhausting. I feel very sad that things have turned out this way and very lonely. I have other friends but would never take him round as I know what will happen. It’s ok, I don’t want solutions. I just wanted to vent.

Oh and the DH comment was meant to also say that DH also has an ADHD diagnosis now after realising that DS was exactly like him, and no, that isn't Norma!

Our DD age 7 is going through private assessment. So much of what you have written is familiar - I suspect our DD has moderate ADHD but also struggles with groups, team games, and socialising. She is loud, emotional, spontaneous, and fiercely loving and intelligent. Was labelled as naughty by DH and school until the SEN teacher suggested ADHD. She also struggles with cycling and swimming. Emotionally she is 12-14 months behind her peers which makes friendships difficult. We support her as much as we can, and currently 4 weeks away from our first private consultation to talk about formal diagnosis.

You are not alone

Hi Op my daughter has ASD so sympathies - I can only suggest changing schools (ours are extremely sympathetic) - and looking for the local family autistic support groups - there are some amazing ones and we have found it so brilliant to meet others who udnerstand.

There is support out there and there are groups/ clubs/ set ups for children who have these needs - I really do say keep digging until you find it.

My son is an adult now but it’s the same. I can’t even take him out on my own. It’s been over 20 years of no friends, no nights out, no holidays. It’s very isolating. Also very difficult for our other children who’ve missed out on loads of things.

Two of my dds (middle and youngest) have asd and adhd (12 and 9). It has been incredibly isolating. I remember taking my middle dd and her older sibling (no Sen) to a singing group in a church. I’ve always been really conscious of the kids behaviour and my middle one was just exploring when the lady wanted them all to just sit. She came over to me at the end and said she thought there’d be better groups out there for me than hers. I walked home in tears. I couldn’t ever leave my youngest to play at a toddler group so never got the chance to talk to anyone. The town is small with very little in the way of Sen groups. It has been really difficult and really upsetting. No party invites, no play dates.

I always wonder what it must be like to only have have a ‘normal’ children. To not have to worry about being shown up everywhere you go. For feeling like an awful parent when they do behave and you were worried that they wouldn’t. To think that your child will have a lovely play date and be polite and share and come home happy. It’s just so very sad. To always be on guard and second guessing yourself. Would it be better if I did this, or this, or this? How have I made his behaviours worse? It’s just so exhausting.

I have 2 nt dc and 1 nEuro diverse and the lives they lead are very different. I won't go into it all now as the subject is huge. But what sticks out in your posts is that firstly, the school he is currently in May not be meeting his needs. My dc is in a special needs school and the difference in him from going from mainstream to a special school is phenomenal. I cannot emphasise enough the difference it has made for him and his confidence.
Secondly, please don't compare dc. I know it's hard. I know my 2 dc won't face the same challenges my sn dc will and it breaks my heart to know he may have ignorance, intolerance and struggles that most are lucky enough to never even think about
Thirdly, get in contact with local support groups and charities. They are the biggest pot of support and knowledge. Not only that, but you and your dc will be able to be involved with like minded people. Your dc will see they are not alone.

And, my dc has questionable behaviour at times. Certainly does things my nt dc would not do. Please don't worry about being 'shown up' anywhere, if ignorant people can't accept that some children don't have the same capacity to understand the world in the way they see it - that's their ignorance. That's not yours or your dc's problem

there is groups and organizations out there

i know of many groups that organise trips. Soft play, meet up and its just for disabled kids and their siblings
our group is also a support to each other

i was feeling like you till i discovered on Facebook my local one.
this turned from me not having any adult fiends( as im to busy being a 24/7 carer and educator to 2 disabled kids)and the kids not having any friends apart from home ed groups to daily activities

just search on Facebook

im rural south wales so if there is one around me there must be loads in cities and towns

i also get a lot of support from parents in the same boat on multiply support groups via Facebook

I'm near the start of this - DS is 3 and I've already been pushed out of a playgroup and asked to leave a church(!) because of his behaviour. He's mildly delayed in pretty much every domain, can't sit still, can't be potty trained, hits and pushes other children, and constantly runs away from me in public places. Every time I try a new baby group or childcare setting I get told that he's not a good fit or is upsetting the other children. I'm so tired. Starting the process of talking to professionals to see if he needs a diagnosis (I understand that if he has ADHD medication is likely to be hugely helpful). I'm just so sick of being openly judged by other parents for having a "naughty" child. I feel very lonely.

Ah OP, i have been in your situation and it's incredibly isolating. My salvation was finding ASD groups, either special soft play sessions for SEN kids, or SEN sessions on weekends through local support groups. I met so many other parents, my child was not judged and he and I made friends. He is now 14, and has a few friends, also with SEN/ASD. Our social network is other SEN families and we now have good friends we can socialise with and go to their house, have take aways etc. We still have our issues, but we are so far away from the younger years. Us mum's organise get togethers and play dates for our teenagers as they are not able to travel independently but we have some support now and it makes a masssive difference.

i forgot to add after a while you get to the point you dont care what people think and dont be embarrassed(i never was as ive got a attitude off i dont care what people think of me, ive had this since birth so when i had disabled kids i didnt care at all, as they got many complex ones each there is a lot of behaviours, quirks to deal with
i also had a asd ex from the ages of 18 so i was used to odd behaviours. we were together 5 years before a baby came along)

your child is who they are, just because they dont do the "norm "of societies expectations ie sit still and quiet(mine licks ,smells, tastes ,touches every thing and has been doing it since birth)

i let him be him

if you spend ally our energies stopping them or trying to cover up their quirks its very exhausting mentally for you and the child
ive seen this behaviour at my group and it does cause the child emotional harm and the mother had a emotional breakdown

Is there a wait for a private appointment?

@thegreenlight

I always wonder what it must be like to only have have a ‘normal’ children. To not have to worry about being shown up everywhere you go. For feeling like an awful parent when they do behave and you were worried that they wouldn’t. To think that your child will have a lovely play date and be polite and share and come home happy. It’s just so very sad. To always be on guard and second guessing yourself. Would it be better if I did this, or this, or this? How have I made his behaviours worse? It’s just so exhausting.

I really empathise with this, it is hard.

My similar age DC has found a few good friends at school, all of whom are slightly socially awkward and possibly ND as well. He's at a big school with a 4 class intake and they switch the classes signs too so he's met over 100 children and somehow has managed to seek out the quirky ones ;) fortunately they sound much more understanding than your school.

I would also complain as noisily as possible and campaign to your MP about 4 year waiting times. That's utterly unacceptable. I wonder where you are based?

I hear you. My DD is 7.5 and she has no friends and doesn't get invited round people's houses or to parties. She's started to notice now and I just don't know what to say to her.
As she stands out as different no one talks to me at school pick ups and i keep myself to myself. Im actually quite sociable. I often feel like I have to be on the look out or be on the defensive as often she will try and engage with others on the walk home only to be ignored or have them roll their eyes at her.
No solutions but I understand!

I know it's not the same, but I'm in a lovely Facebook group for parents of autistic kids, it's called Gentle parenting for autistic children UK, everyone in it is really nice and supportive.

I second looking for a local group on FB. If they're anything like ours they have coffee mornings and activities like SEN events at Soft Play. And lots of local knowledge about other providers.
Like you I struggled at about this age. DD was diagnosed at 9 and she's coming up to GCSEs at mainstream with an EHCP and FRIENDS! She has an independent social life :)

What county are you in? perhaps some of us could do some signposting towards appropriate support? Be that groups, activities or respite etc.
County Durham carers have been running virtual cooking classes. Do you claim dla for ds? It is needs based, not diagnosis based, and that opens doors for support too.

I feel you. The oldest was diagnosed at 12 after mistaken diagnoses earlier and the youngest is very clearly going the same way. Beautiful children but socializing is very hard for them both, and it really hurts them when other children don't want to play.

It is just awful.

We are in Warwickshire (horrific for its SEN provision - I think we made national news recently) it really is 4 years for assessment (and they missed some people off the list so longer for some!) however, I have been given an appointment writhing 8 weeks going private.

OP if it makes you feel any better I have three 'normal' children and one of them always shows me up everywhere we go. Never the same one but there's always something. I think you may be more aware of it because your son has issues and you think everyone else's kids are perfectly behaved - they are not

Yes, it is .
Then I get the questions from school / camhs about what support network I have. Funnily enough none, as I work and spend all of my time and energy dealing with DD.

My eldest is autistic. His NT friends dropped away at secondary - not in a horrible way, they just did things differently. He has a rich online friendship network via gaming and he has one local friend, another autistic lad. They are 20 now and visit a couple of times a week.

I would look into a community for your DS - other ND kids make the best friends. Spectrum Gaming is an amazing resource - look it up online - in terms of a sense of belonging and a neurodiverse community and is working wonders for many people's mental well-being.

Take a look on Facebook for your local group, there will be one. They don’t usually exclude people without a diagnosis yet, particularly if the wait is so long in your area.

The school sounds awful and unsupportive. It sounds like your son is struggling a lot and they really should be putting more in place for him. The support provided should be based on need, not diagnosis.

Hi OP, I understand completely and both my children have diagnosis.
I notice in some of your posts you mention is behaviour and I am struck that some
Of what you are frustrated by will be his disabilities. And I do appreciate that they are frustrating.
E.g when you say that when you pull him up on his behaviour he gets very upset. This is very typical for ADHD and ASD and it might help for you to look up rejection sensitivity. It really affects adults and children with ADHD.

I also noted that you said he is intelligent but lazy. I doubt he is lazy I would think that school is very boring to him and therefore doesn’t fire his brain. People with adhd have been called lazy for years and they really are not and it can be very damaging to their self esteem to call people lazy.
I bet he would love to behave in the way that everyone wants him to and to do the work st school but his brain is not built that way.

Good luck, I hope you find some support and remember that you are going to be his biggest advocate so make sure that you understand him so you can help others understand him too.