Roll call for parents/carers to SN teens and young adults. Come and say hello

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Hello

This is a surprisingly quiet corner of MN isn’t it? I wonder if that’s because we are all so skilled in hiding what’s going on and not talking about the good, the bad and the ugly?

I feel quite sad that so many posts are left unanswered or just a few supportive replies. where are we all? are we all off trying to deal with life and then too exhausted to do anything further than read?

Come and say hello, maybe we could have our own nobdies clique, 1 thread just for us. (I’ve been on MN for years, Nobdies was a nobody replies to my thread post years ago, it run for many, many threads and started with just a hello)

DD13 is diagnosed and medicated for ADHD & ODD. Today the consultant said she wants to refer for an ASD assessment so we continue the long road of doing our best.

to you all

Hi all,

Just adding myself to this quiet corner - DS1 is 15 and DS2 is 10. Both have ASD. I'm overseas and the start of the new school year is next week, which means anxiety and stress transitioning back. I take antidepressants to cope.
to all you ladies out there.

How are you feeling, justhetwoofus ?

I have twins one boy one girl. Both have disabilities. When we are out I do get questions as to why we require a disabled bathroom. DS has virtually no leg movement or sensation in his legs or feet too. The regular toilet cubicles are not appropriate if I’m out alone with both kids.
I don’t want to surrender the right to privacy and dignity.
Can I use the space to vent? Why does every disability parking space have to be taken up? I took both the kids to the supermarket today after lunchtime and virtually all of the handicapped places had been snatched up. Fortunately I managed to find a space and do a bit of shopping.

I'm late to the party. Haven't been on MN for a while, although I used to post quite regularly, as DD1 was stalking me online.
She's 16 and has ASD, ADHD, anxiety, depression and has just been diagnosed with an ED too. I'm exhausted with all the support she needs and have two other DC, one of whom also has ADHD.
She's just been awarded PiP, which I'm pleased about but it does confirm 'officially' that she's a disabled adult and it really does make me worry even more about the future.
That's not a very uplifting introduction, but there it is.

Hello all, hope the bench is still available to sit down and join in! I do think it’s because we are overwhelmed and worn out from looking after our DD/S that we aren’t as chatty as other threads. Must say I was shocked when I started looking last month after my 17yr old DD was diagnosed w ASD & GAD, the thread are so very bare 🥺 but then again some days if I get one thing done it’s an accomplishment.

My 17 yr old was just diagnosed with ASD last month. They are testing if she has ADHD as well. She was already diagnosed as having General Anxiety Disorder (GAD). Instead of getting As & Bs for A levels she has failed all her mocks and we don’t know what to do. The school said they would get her to see an ASD TA once a week but I can’t see how that is enough for her to learn the organisational tools to be able to pass her A levels.

I have soo many questions for you, please do reply if anyone has any suggestions!

Could you please tell me how you got your DC through the A level hurdles?
How did you work with the school?
Did you get an EHCP? I’ve been told it will take +22 weeks and will need to go to appeal and possibly tribunal as council refuses all but the most dire cases and since DD has achieved good GCSEs she has already passed the threshold.
How did you educate/inform your family about her disorder?
Last but not least, how did you help your DD with the diagnoses and next steps?
We feel complete overwhelmed!
Thank you soo much for any help you are able to provide!

Hi can I join, my dd is 13yo she has suspected ASD and I'm starting the long process of getting a diagnosis and more support for her. She also has SPD and is possibly dyspraxic.

She has really struggled this summer as she started her period which has completely thrown her plus hormones are not helping!

She goes back to school Wednesday and I think we're both dreading it, she struggles socially and as she gets older it seems to just get worse 😥

Hi, room for one more? I have a teenage ds with hemiplegic cerebral palsy. He’s coping ok physically but has speech and language issues which is very frustrating for him as he is cognitively able. Biggest hurdle is his illiteracy, and the schools inability to implement the recommendations and stipulations of provision in his EHCP. - constant mind games, stress and fighting that goes on. I’m now reaching the stage where we’re going to have to think about what’s next and I just do t know!!

Hi Girlie, it’s hard but you are doing the right thing starting the diagnosis process. Hope the return to school went alright. It does get harder because the social relationships are more complex as they get older and the school work too. I found searching the boards was helpful to see what people advised for going through the EHCP process. Girls present differently so you need to make sure they are testing her correctly.
Although my DD is academically bright her poor executive function is holding her back in school and I wish we had known earlier so that we could’ve worked on it sooner.
Quite a few good sources to read or watch on YouTube are Sarah Hendricks and Tony Atwood. A book I haven’t read yet is I think this is the hardest period (coming to grips with the disability; coping with complex social structures w peers and all the raging hormones) and then it gets better once they are in their 20’s 🤞🏼🤞🏼

Hi Luxury, so sorry to hear that; it is a struggle, worse some days than others. Someone I know said that she started off all meek and helpless when her son was first diagnosed but now feels like a lioness and whenever the school/council doesn’t give what her son needs she takes them to tribunal and they always back down just before it gets to the tribunal date. She only actually had to go through with it to tribunal once (when she won) and since then she’s not been frightened of going again. Council/school know they are highly likely to lose if they take it to tribunal so back down when they see it’s going all the way.
Hardest thing for me has been to educate myself to find out what my child needs. The ‘experts’ aren’t good enough all the time so I’ve had to step up and try to figure out what to do. Early days still for me but...

Also recommended was The Out of Sync Child and The Out of Sync Child Has Fun.

Hello all. Is there room for a late-comer? I have DD19 who has recently been diagnosed with ADD. Teen years have been horrendous. I love DD with a passion but I feel completely worn out and devastated by her behaviour. I hardly know where to start. Added to this my beloved father and father in law have both died in the last few months and my mother has numerous physical conditions plus dementia. I always thought I was tough and resilient but I’m broken.

Mrscatt 💐

Dd (13yo) had a huge meltdown Ystd evening after a few things at her activities club didn't go her way. Was so distressing to watch and there is very little I can do to calm her. In the end I wrapped a huge blanket around her and held her tightly which eventually calmed her a bit.

Has anyone got any recommendations for a good book to help me support her? She has suspected ASD, awaiting formal diagnosis.

Hi, can I join ? I have a 17 year old son , born at 26 weeks with numerous health and developmental problems. He spent the first 4 months in nicu and came home oxygen dependant. Moving on he has had a rocky rd with a lot of input from outside agencies. He went to a main stream school and was diagnosed with a moderate learning disability early on . School was a huge struggle for him , even with senco help . He never did sats as it was deemed unsuitable for him to do so . This became worse at high school where he did many lessons and tests in near total isolation, we had private tuition around exam times but he didn’t manage to pass any exams. He then went onto college to do functional skills and his maths & English which he also failed . We’re now at a critical point as he no longer wants to stay at college as he doesn’t cope well in big , busy places . There isn’t any other college option in our area . My son is learning to drive and although it may take a while we feel confident he will get there in the end . The reason I am writing this is because my son really wants to get a job , he’s proved that anything academic is not possible but he’s a lovely, polite, well mannered boy who has a lot of friends (similar to himself) he’s confident in his own surroundings but suffers Severe anxiety in other situations. Does anyone know of any organisations that can help him get into the workplace? There doesn’t seem to be any help for older kids with learning difficulties . Who will take a 17 year old with no qualifications? It’s impossible to get an apprenticeship because basic qualifications are required. College are no help whatsoever and just tell us he needs to seek out his own apprenticeship & continue with his functional skills . He just wants a job 🥴thank you for reading . It’s my very first post on netmums so even if no one replies I feel better for writing it !!

Hi
In my office there is a program called Spear that helps people with EHCP to get employment. Worth looking into?

resurgo.org.uk/spear-programme/the-spear-programme/

Hello all - glad to have this thread. And just replying to @Carol181059 so she gets a reply on her first post! I wonder if searching for jobs that involve remote working /homeworking / freelancing may help your son? Or as he's not academic, could something like being a gardener's assistant suit him (quiet environment in the outdoors)?

My own DS is coming up for 18yo and my heart is breaking for him because he has no friends to celebrate his birthday with him and no one to share the long post-A-level holidays with this summer. He is in-denial-Aspergers (diagnosed aged 7), wants to spend time with friends his own age but doesn't have any, other than a nice group who he only sees within school, never outside it. He is pinning all his hopes on making friends at uni but we all know it's not necessarily a given. I wish I knew how to help him.

An old poster, a bit the worse for wear but plodding on. Hello all, I’m sure I must know some of you but I find namechanges (even my own!) very hard to digest. Ds is 15 and at home full time now. We HE and it’s fairly hard work but much better for him. Special school was a disaster.

Hi, I've got an ASD 18 yr old DD who is going to uni in Sep (Covid allowing) and I can forsee lots of issues for her to overcome.

I'm finding it hard to strike the right balance between helping her and being excited for her, and worrying myself sick about the problems she will have. She's also refusing to speak to the support staff from uni on the phone, and the support staff insist that SHE has to be the one to speak to them about applying for grants etc :( So I'm trying to get her to email them instead.

It's going to be a bloody rough year with both Covid and daughter going to uni and work (NHS nurse) and newly unemployed husband. I'm not sure how I'll cope :(

Hello! This is a really quiet corner!
I've been here a long time (not this corner - MN in general) but a serial name changer.

Dd is autistic, has SLD, she is 18, in her last year at school - she was looking forward to her leaving party . Going to college (fingers crossed) in Sept.

Currently I am wfh'ing and she is being looked after by her iPad!

Sounds rough nowayhose!

Dd is in a similar boat - but it's easier as she's going to special college and I can do all the paper work. She's really excited for a particular college - but so far hasn't got that because of funding constraints.
Not sure how she'll cope if she doesn't get it!

Hi

WhatAWonderfulDay , it's so nice to hear from someone with much the same issues.

I know we'll manage, I'm just not entirely sure how yet.

I really am quietly terrified for DD, but trying to put on an excited front for her sake.

Hi , oh my , where do you start ? Since I registered my first post I’ve been reading your replies and advise , on one hand it’s been uplifting to realise I’m not on my own . On the other hand lots of your teens are off to college & uni . What next ? Will they get jobs ? This is my dilemma , no college , no uni , not clever enough but has passed theory test and was doing practical test but cancelled due to covid . What do these kids do ? Who will employ him ? My heart is breaking for him and for yours . Am I negative? No I don’t think so but 18 years of worry and concern are taking their toll .

My DD has managed to get a part time job in a well known fast food place. I did not think she would manage too well (think meltdowns when things don't go her way etc), but she surprised me !

She was always very confrontational at home but the model of best behaviour and maximum effort at school (every report card said very well behaved, excellent effort in classroom and for homework ), but no effort at home and lots of screaming meltdowns, total refusal to either listen or comply with requests etc .

I know kids on the spectrum usually keep their worst behaviour for EITHER school or home, and we got the worst at home, but it meant she did well in school.

I don't know if your area has any special places that employ ASD people ? In my area there's a few places that employ the more severe cases (some make furniture, and some work in garden centre type places) and a few others like supermarkets etc that actually look for people with milder disabilities to employ ? It's maybe worth asking around in places that you think your DC might enjoy ?

Are there any clubs etc near you that would be suitable ? I found out about local clubs etc when my DD was younger and we attended quite a few. It's from them that I found out about other clubs etc ( there was one here called 'social eyes' which was specifically for older teens and young 20's with milder ASD to meet and make friends).

My DD also attended rainbows, brownies etc which helped her enormously with socialisation etc, so maybe your DC could find something they would like to volunteer at first ? Maybe even volunteer in a charity shop to see how that went ?

Also, my DD is obsessed with horse riding and is going to do equine studies at uni, has your DC got a particular interest that they could study further ? I found out lots of areas my DD might have studied e.g hairdressing ( she prepares the horses for dressage competitions and does it so well that adults at her stable have been paying her to prepare their horses too for a few years), stage make up/ lighting etc (she did A level music and drama and is brilliant at both), acting (she did advanced A level music using voice as her instrument :)) etc.
Whatever she was interested in and was good at, I investigated, no matter what it was, and encouraged her by saying ' Oooh, did you know there's a course in that at ......college/ uni ? just to put the idea in her head.

Can you think of anything like that for your son ?

No, I don't think you're negative at all, just a normal worried mum, same as me :)

Hi I have a zoom review with the school SENCO for ds in early June. He has SEN but no EHCP . He's year 9. I'm not confident about updating his My Plan because I've no idea what school will be like in September .
Also, untold damage from being off school for 5/6 months. Missing so much learning and he won't want to go back. He's had help for school refusal before.
Anyone else in this position? I can't agree to strategies if we don't know how teaching will work in September. They might not even go back full time ?

Hi Moors,

Sorry, I've no advice for school refusal etc, but it must be very difficult for you all :(

I can however give you a little reassurance that the difficulties you are experiencing now will not last forever, and the help your DC needs in year 9 will not necessarily be the same in the future.

I had lots of issues with school/ teachers etc with my DD, but they gradually improved as she got older and learned how to cope etc

Try not to worry too much on this years school problems caused by Covid, because there's nothing you can do about what's happened. Try to focus on what help your DC will need in place for when he does go back, and ask for it in the zoom review.

I hope everything goes well for you both. x

OnTheMoors for a child to school refuse is often an indication that school is stressful as a result of unmet needs. Have you applied for an EHC Needs assessment?