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.

Yes I have the same 10 year old with asd and adhd never Invited to parties, no friends at school none at all, she didn’t even get one single card at Xmas, not one. I don’t go out anywhere with her as her behaviour is too challenging. You are not alone

That sounds really tricky OP, what sort of things does he do that make even going for a coffee or to soft play very difficult? Feeling forced to isolate is bound to affect your MH. Does he have any medication for his ADHD? I know a couple of children that it has made a huge difference for. Do ear defenders help at all (if he will wear them).

I completely get it, my child is a similar age and has never been invited to a party, over to play, we couldn’t go to the park with friends etc it’s incredibly isolating. I was basically a recluse when he was little. I have no huge words of wisdom apart from the thing that does help is finding friends in a similar position, whether they be online or real life. Someone you can vent to who gets it.

I’m very sorry to read this; my son is 3 and I think/fear the same will happen to
Him

He licks the glass at dance parties, won’t join in with anything, cries, gets mildly hurt or frustrated and then shouts and screams, shouts and storms off. I know the other parents think he’s just naughty. I’ve been told I’m too hard on him, too soft on him. It’s a 4 year waiting list for assessment in our county so we are paying £2500 to go private, I would love for him to have medication to help with his behaviours. He either doesn’t notice his behaviour but if he is pulled up on it has self-hatred and anger after so I can’t do right for doing wrong. I feel like a shit mum. He’s mostly fine at home or on a family outing so we do that but it’s just so sad meeting groups of parents from his class and the awkward interactions with them when we are alone. As usual. DH doesn’t get it.

We're barely into toddlerhood and already the loneliness is crushing. I wish there was some sort of support for parents in this situation. We get minimal medical support but no social or emotional support.
Sometimes I toy with setting something up, but only know how to manage my own child's Sen or Sen in a school setting. I wonder if something like that is possible or if it's just a pipe dream.

I know exactly how you feel, my son who has ASD was similar not the acting silly bit but struggled to cope with new things or change so people see him get upset or frustrated and gradually as he got older they distanced themselves, best thing I ever did was go to church, were children are taught to accept everyone whether they have differences or not, thus led to a secondary school last September where friends from church have gone and he's finally happy at school as he hangs around with these children plus does clubs at lunchtime so he not having to cope with play ground and unstructured time. Which he always struggled with at primary school. My son has grown up massively since changing from primary to secondary and I finally see glimpses of the boy I used to know before he was constantly struggling and having meltdowns all the time.

Have you looked to see if there are any SEND support groups in your area? Our local Parent Carer Forum runs activities and groups for children and coffee morning type things for parents. You don't generally need a completed diagnosis to attend. You and your DS might be able to hook up with a group of more understanding people.

Sorry to hear this. I sympathise. A challenging child, plus a feeling of loneliness, plus the sense of their own aloneness … very hard.

I understand OP. My daughter has ASD. We went for a private diagnosis too, to speed things up. I hope that you get the answers you need and are able to get some support too.

As a secondary school teacher I’ve seen lots of kids come up from primary with very challenging behaviour (with and without diagnosis) and completely isolated from their peers. By the time they leave secondary, many of them have mellowed a bit behaviour wise (with medication in some cases) and find their tribe. One boy (ASD/ADHD) wrote a piece about the first time someone came to the door and asked him out to ‘play’ - he was 15. Another of my pupils is a real bright spark with a wicked sense of humour. Such an asset to the class. In primary he used to climb over the desks and try to jump out of the window! I know this isn’t the case for everyone, but I’m holding on to the hope that things might get better.

I feel so sad when I see other girls my DD’s age surrounded by friends or when mums post pics of their child’s birthday party. My DD would love to have a party, but she has no one to invite and she gets so overwhelmed that even if she did she’d have a meltdown.

If you suspect adhd, the private diagnosis for adhd is much cheaper than asd. It's about £700 where I live.

Is he being well supported at school?

I understand.

The lifeline for me was joining local asd groups. They'll have ones that include adhd or separate groups for this.

All the ones near me organise various different activities. Hiring out soft plays, canoeing, hiring out swimming pools and things such as crafts and baking.

It's a lifeline. You meet people who get it. Your ds can socialise with others like him.

You make friends and feel included.

Look for support groups or activity groups for children with SEN in your area. You will find a bunch of parents who don't judge your son's behaviour as they are going through the same thing so have empathy and understanding. Your local parent carer forum should be able to signpost you to what is available.

Thankyou for the kind words - primary has not been kind. I hate it. I dread performances and assemblies because I know DS won’t feature in any or will do odd behaviours on stage and I will have to have another shame-faced conversation with the teacher afterwards. I really hope he finds his tribe at high school. He’s fiercely intelligent but lazy and unmotivated so doesn’t really fit with anyone. We aren’t sure what he has - he has elements of both I feel. As wait lists are so long in our county, practitioners who get accepted by the LEA charge a premium.

Mine are medicated but the damage is done in terms of parental loneliness...and lack of friends for the kiddies too. They do chill out the older they get thankfully!
A really nurturing school can help too.
Having the quirky kid is lonely sadly.
You have to find your people and nurture those friendships, usually without the kids involved. Hey ho. They are worth gold dust 🙂

I imaging his needs seem quite mild compared to some - he masks some of the time so he’s not ‘undeniably’ SEN. He is just SEN enough to to not fit in but not SEN enough for it to obviously be a condition - unless you send larger amounts of time with him or know what you’re looking for. School have been horrific. It’s been treated as bad behaviour since nursery. We went in to speak to the new head when he moved to juniors and thinks are slightly improved my not much. They just let him walk out of lessons when he wants while still speaking to us at the end of the day about his ‘choice’ to distract others by making noises and tapping.

I really feel for you. My sister is going through similar with her DS who’s 6. Friends are starting to drop off and the play date invitations are drying up. It’s hurtful but his behaviour is so disruptive and difficult for her to manage, she’s at the point now where she feels it just isn’t worth the bother or the stress. I don’t even think he’s waiting for an assessment. He masks really well at school and they don’t seem to think there’s a problem, although it’s so obvious when he’s at home. I don’t know what the answer is, but you have my sympathy.

DS is worse at school or in group (cubs etc) situations. He’s pretty good at home and on days out if it’s just us. Still some behaviours though. He struggles around others but still wants friends so I feel awful for him too.

I've was fighting for a diagnosis since my son was 4 years old, I was told everything from he has anxiety to its my fault (school) they even told a medical professional I was mentally unstable. He is the same very intelligent as long as its a subject he enjoys. Also he only got a diagnosis because of covid one interview was ln video call and they saw him have a melt down because he had enough of me being on zoom. They said he just at the cut off point and they probably wouldn't of diagnosed him if they hadn't observed his behaviour that time and read his history from the many many professionals who agreed there was something wrong but it wasn't there area so couldn't help. It's soul destroying and really effected my mental health, less than 6 months at secondary school and it's like I can breath for the first time in 6 years xx

We found activities that where you are working solo on a group setting useful. Swimming, cycling - loads of sub groups like cyclocross, bmx racing or freestyle

The idea of DS doing cycling is hilarious - he won’t get on a bike without stabilisers. He doesn’t have the coordination to swim (though he likes to play in water so we go to water parks) . He just has a meltdown when in a group - he has done lots of activities with cubs all of which didn’t have happy endings (no photos of DS sent unless they are groups ones where he is crying or pulling an upset face). We are thinking of giving it up but it’s the only social interaction he has. We are still recovering from the night-hike last Monday!

I know you said you don't want solutions but could you look up local groups and see if there are any SEN parents. I find local mums with autistic kids a godsend as it's hard to maintain friendships with my NT mum friends as our kids are just on different paths.

Been there. Mine is 15 now. Medication made a massive difference. Also familiar with the DH issue. Does “I thought that was normal, that’s what I was like” sound familiar?

I feel your pain about the isolation bit. All the mum friends would go to the playground after school and sit on blankets on the grass chatting and drinking Prosecco. I had to stand wherever SS was and try and stop him causing merry hell. I particularly remember him hoongo the top of the tower at an adventure playground and someone had upset him so he refused to come down. I had toddler DTa at the time and o could t leave them and go climbing up a bloody great tower. In the end the playleader had to go and coax him down. All the other parents pretended not to notice. If I ever went and sat on the grass you could guarantee that some child would come and tell me that DS was doing something particularly ridiculous, or trying to harm his brothers. Mortifying.

I also had people threatening to call the police, or on one occasion (when he was in Lidl jumping into the cardboard boxes from the windowsill as o paid and tried to corral two toddlers) “oh I pity you”

Arghhhhh