Daughter with OCD and request for accommodations refused by uni - what now?

[vivariumvivariumsvivaria]

DD1 going off to do zoology at uni in September, she'll be about 5 hours away from home.

She has been unwell with generalised anxiety disorder, related to OCD, related to (probable) autism. She refused an autism assessment as she felt that would pathologise her passion for her subject, but her psychiatrist and psychologist both think that the root of her anxiety is neurodiversity.

She took a year out after school in order to get well and work and has done really well, the suicidal ideation seems to be under control and she has really worked hard at getting well and uses exercise and her experiments at home to manage her symptoms. She is ready to go back to learning and looking forward to her course - I'm sure that the course and the uni are right for her. I'm hopeful that being amongst people who "get" her niche interests will be really helpful for her to find her place in the world.

She is moving into halls and wants to take a small vivarium with an small species of lizard. The animals act like a touchstone for her mood - they aren't pets, she is meticulous in studying and recording their their behaviour and their environment. The tank is a little planted eco system, the whole thing is her version of mindfulness. The tank is 45cmx45cmx45cm and does not need a heat pad or electrical equipment. She has several large tanks at home, this small species were chosen 2 years ago specifically because they don't need much space and would be suitable for taking with her to halls.

Uni refused her permission to have the tank two weeks ago. This has set off her anxiety, she's back self harming and is saying that she'll go and study anyway but I can see her spiralling again - and the idea of her struggling with the sort of intrusive thoughts she had previously when so far away from home, well, I'd fret that she's not safe, she really was very poorly.

I think she needs to write back to the university and properly explain that this is not a self indulgence but an accommodation for her mental health condition - albeit a strange one. I don't think she adequately explained the reasons behind her request. She doesn't want to make a fuss. I don't think she will cope as well at uni without having one of her animal projects with her - it is both part of her condition and part of her solution.

I want to speak to the uni and advocate for her, but I know I can't interfere with a young adult's problem - I don't want to be That Parent! I'm worried that she's not going to be able to articulate the importance of this tank because she's a little embarrassed that it is so significant to her, she isn't really able to explain to a NT person WHY this project is so important to her, it just is.

I am sure that if she could take the tank she would manage the inevitable anxiety that her first year at uni will bring.

I'm worried that if the refusal has made her so stressed then perhaps she is not actually fit for going to study? Her psychiatrist is happy with her progress and only has a phone review planned in a fortnight before discharging her. IT's only been a fortnight though, so it might be that she can manage the spiral - but, she uses her animals to do that and so the thought of not having them available is heightening her anxiety. Catch 22.

She has to arrange an appointment with the DSA assessor at uni - is anyone able to advise whether it is even worth pursuing the request, whether the DSA is the best avenue to try and whether there has ever been flexibility granted for having an animal (no fur, no mess, no smell, no escaping, no electrical equipment, no noise, you can't even see them because they hide all the time and are very dull if you ask me) in halls?

She's a born scientist. She's exactly the sort of student that tutors want to have on a course - she's bright and motivated and keen. She's also going to permanently have to work to manage her intrusive thoughts, anxiety and sense of being a square peg in a round world - obviously I think that a tank of lizards is a good solution!

I think she is going to have to manage without her lizards. I do not like dogs, cats etc and if someone in the next room to me (if I were a student who had a phobia about snakes, lizards etc) might be as equally damaged by the reptiles in the next room and if my child could not plug in ZXYZ electrical stuff in university rooms I am not sure others should be allowed this kind of different from the rules as it might start a trend where less honest students argue they cannot live without their pet. (My daughter DID take her horse to university in year 3 and found stables all by herself in the countryside near Bristol, drove every morning out to muck it out etc but that had no impact on other students or university rules)

I knew a girl who kept a snake in her room in halls. She hid it in the wardrobe when the cleaner came round. Cleaner one day found it (poor woman) but they came to an accommodation whereby the cleaner just didn't open the wardrobe...!

I didn't think you were rude, Alfonso - it's been really helpful to hear people's opinions, and direct opinions are useful! Hope you are feeling better.

Right, I'm going to have a chat with her about the autism diagnosis - her refusal is purely because she doesn't think it'll be useful as GAD and OCD mean she has protected characteristics so adding another one won't make much difference.

I agree with those who are concerned about halls and anxiety and also, yes, veterinari I asked her about the temps for the lizards and she said because she didn't think halls would allow the light rather than the lizards needs. I'm really surprised by that - normally she's precise to the point of being a bit of a pain.

I'm going to take her out for a long walk today and Have A Chat about Plans B, C, D etc.

Yes, it's Wales, to PP. Which is great, she'll love it, but, there's possibly somewhere closer to home. Will add that to the list of things to find out.

What is she wanting to do long term. There are so many micky mouse degrees out there. Has she looked at apprenterhsips

Realistically the uni are unlikely to back down on the lizards because it opens a HUGE can of worms for them.

Could you frame it that she needs to leave the lizards because as a zoologist she’ll have to do field work, and won’t be able to take them then? So she needs to get used to it.

The webcam is good - maybe you could offer to send daily updates?

[quote SureBorisKnowsWhatHesDoingNOT]@olympicsrock not an especially helpful post for a concerned parent. -Amazingly not all people with additional needs react in th same way to things. . Implying that the OP's dd could end up attempting suicide before she's even tried one day is a bit much. Are students with additional needs (my dd included) not allowed to go to university? What should they do instead? Because if they aren't allowed to try things they won't know what they can or can't manage.

OP if you drop the disability services dept an email they will most likely be able to send you a 'right to share' form or something along those lines which your dd can sign which allows you to contact the University on your child's behalf and visa versa. It's an extra layer of protection for vulnerable students. You aren't being 'that' parent if your child has additional needs. You are being supporitive and advocating for your child while they aren't able to (where a NT child might be able to). I've found the department at my ds's potential new university very helpful and understanding.[/quote]
This!

Don't worry about being 'that parent'... be the parent she needs....

This is a critical time in her life, becoming more independent and having to learn how to manage away from home is a massive transition so do whatever is needed to support her...

My neurodiverse bio kids are younger but my SD is 23 and has struggled with uni- I regret not being more involved at the beginning and challenging the uni in the support they offered her.

Leaving a uni course that is not working is absolutely the right thing but it knocks confidence so much and so much better if you can get it right and support her to succeed and for some young people this needs the uni to work with parents to support.

It does sound to me as if a course nearer home would be good or maybe a bedsit etc where she can control the environment more.

Halls can be hard unless you fit in with the group in your house/ flat.

Good luck!

I’m wondering if this may turn out to be a good thing as she may realise that her reaction to this shows her she could do with rethinking her current plan?

My DC is weekly boarding for 6th form and hated it to start with and we all had a horrible first term of him being there.Obviously a different situation to your DD’s . It has made me very wary of him choosing a university too far from home without decent transport links so he can get back as having the time at home meant he could cope with the week days. Am sure if he had been full boarding he would have dropped out.

@vivariumvivariumsvivaria

I'm so grateful for your thoughts, especially from those of you who are ND or have ND kids.

I want her to go and have someone make use of her brain. She is exactly the sort of person universities want and she's got such a unique way of linking ideas and unusual that I'm kind of excited to see what she comes up with.

It's a good point about halls being noisy. I was never in halls but it seems to me to be a bit like school, if the people you land up next to are ok then you're ok and if you get stuck with the dickheads then you can have a miserable time. I hadn't thought about the disruption and noise - we've come up with some workable strategies for her OCD and shared bathrooms - but, yes, maybe there could be a third option. She's happy with noise and chaos if she can get away from it - so, that's a really valuable observation. And yes, tiny lizards won't like vibration of music or parties. Hmmm.

Butterfly that's where I'm at. I want to keep her with me, but she also needs to be chucked into the deep end and figure out how to make it all work. If she's here then I can hold her hand, but adulting is figuring your shit out by yourself. The worry is that if she becomes unwell then, well, I don't want to think about that other than if it doesn't work out she comes home and we work out a plan B.

I made life long friends at uni - I wasn't a great student but I had a brilliant time and it was a very happy time in my life. She has the potential to be an extraordinary student, and if she has people around her that "get" her it'll be amazing. If she goes and it's just another place she doesn't quite fit in, it'll be a problem.

I wish I could rewind the last decade and do it all again only better. It's so lovely to have people saying I sound like a good mum, but, I really fucked up. Totally missed her troubles, I had no idea at all, if I'd sussed she was ND she'd not have become so unwell with the anxiety and OCD. Still, she's much better and that's all that matters.

It's hard with young adults, they need to have freedom to mess up and all we can do is give them a soft place to land.

Maybe I should go and study zoology too. I've certainly learned a lot about anatomy and evolution and habitats over the last 18 years...

You sound such an amazing mum!

I think we all wish we could rewind! My DS ( has ADHD and ASD) has just completely tanked his GCSE mocks... he is so bright, funny, kind and caring but we seem to lurch from one crisis to another..

I am a professional in the mental health and disability and yet my own kids life is hard and challenging but... I also know that is a great young man who will find his place in the world... we won't stop untill he does! It will continue to be a rollercoaster and at times I will feel like the worst mum in the world but when I REALLY think about him, I am soooo proud! We just don't walk the path most families do..

Keep going!! She will find her place cause she has you beside her.

Just googled them and they are so cute.

Get in touch with the disability department at the uni and see what they can recommend. I do know of students who have had secret pets in halls.

I had no idea how unwell she was, I totally missed it, and it makes me nervous to think of her far away without someone quietly keeping an eye on her.

This stood out for me. Maybe halls isn't the best place. I 'lodged' with someone in Oxford (I was working but the other lodger was a student) it was nice because the landlady was more like a friend but I was still independent.

It might be worth looking for someone who has lodgers. I had my own bedroom and shared a bathroom and sitting room with the other lodger, we shared the kitchen with the landlady but often found ourselves sitting around the kitchen table drinking wine.

I don't think you should worry about being "THAT parent" OP. You are only trying to do the very best for your daughter at a worrying time.

However, we learned to our cost that even when our son was psychotic, manifestly unable to cope, and at very severe risk, we were not able to have any role, gain any information, do anything at all for him, because confidentiality rules meant that the university could not talk to us or liaise with us at all. He was an adult. His parents had no more authority to intervene in his university life than any random person off the street. (And he was too ill and isolated to provide authority/consent for our involvement.) Presumably it won't come very naturally to them to acknowledge a role for you in this less immediately urgent matter.

At this stage it doesn't seem like it would be necessary or appropriate for you to speak to university staff on her behalf, but it might become that way in the future, and it could be a good idea to speak with your daughter now to see if she is open to the idea of authorising such communication if and when it was needed in the future.

(BTW, on a lighter note I just lolled a bit at SometimesRaven's comment about the lizards opening a huge can of worms. Self-catering! I thought they preferred crickets. )

@0None0

If she wants to watch her lizards why not set up a web cam for her, to watch them online while they stay at home.

No way could add k ok etching like that be accommodated in student halls. Out of the question

Great idea!

As it's a zoology course are there any practical areas which might be able accommodate the lizard like a lab?

I too wonder if she might be better going into a flat. Would she manage on her own in a bedsit?

@vivariumvivariumsvivaria

I didn't think you were rude, Alfonso - it's been really helpful to hear people's opinions, and direct opinions are useful! Hope you are feeling better.

Right, I'm going to have a chat with her about the autism diagnosis - her refusal is purely because she doesn't think it'll be useful as GAD and OCD mean she has protected characteristics so adding another one won't make much difference.

I agree with those who are concerned about halls and anxiety and also, yes, veterinari I asked her about the temps for the lizards and she said because she didn't think halls would allow the light rather than the lizards needs. I'm really surprised by that - normally she's precise to the point of being a bit of a pain.

I'm going to take her out for a long walk today and Have A Chat about Plans B, C, D etc.

Yes, it's Wales, to PP. Which is great, she'll love it, but, there's possibly somewhere closer to home. Will add that to the list of things to find out.

Your daughter is right in a way, she is already protected through her present diagnoses and entitled to relevant reasonable adjustments.

If she's working with a psychiatrist she can probably get a letter detailing the nuances that are particularly relevant for her - that is more helpful to a university than a generic diagnosis of another condition, because everyone experiences anxiety or ASD differently so it's not like a diagnosis of ASD would automatically mean a particular way forward.

But yes, I think other posters and you are right to be concerned about her overall vulnerability...there will lots of things like this happening at university that she can't easily control and so appropriate coping mechanisms will be important, and the self harm is a real concern.

*Your daughter is right in a way, she is already protected through her present diagnoses and entitled to relevant reasonable adjustments.

If she's working with a psychiatrist she can probably get a letter detailing the nuances that are particularly relevant for her - that is more helpful to a university than a generic diagnosis of another condition, because everyone experiences anxiety or ASD differently so it's not like a diagnosis of ASD would automatically mean a particular way forward.

But yes, I think other posters and you are right to be concerned about her overall vulnerability...there will lots of things like this happening at university that she can't easily control and so appropriate coping mechanisms will be important, and the self harm is a real concern.*

@suggestionsplease1 is correct. At my university, most people aware of your daughter's accommodations wouldn't be told what the specific disability is - just what needs have been identified. So unless you expect your daughter's new diagnosis to justify new accommodations or to attract support / counselling that will help her further, the current diagnosis is enough. It's late to be pursuing a new diagnosis for the new academic year, and people often need extra counselling or support to cope with a new asd diagnosis.

The key thing is to seek professional evidence / support for her current needs, and if that's covered by the OCD diagnosis, fine. And then to communicate those needs to disability support at the university. And unless you're very confident your daughter would communicate with them even at her lowest point, start a discussion about how you can be involved with her consent.

Thanks all, I'm so grateful for MN and people's generosity of time and experience and thoughts! I was feeling a bit overwhelmed myself.

Chat was productive - she thinks that regular FaceTime of the assorted animals would work (not so bothered about FT with me, ouch!) and really doesn't want to make a fuss and start off being a demanding student. Which is interesting, I wonder whether she is looking to conform rather than focus on what she thinks she needs?

She is going to take a terrarium for halls, she has a small one she's been working on for a while.

We are going to go and have a couple of days in the area later in the month and see if the uni would let us have a nosey in the halls and also view some flats and bedsits.

She's not at all interested in going anywhere other than to her specific course. Which is fair enough, she's been talking about studying reptiles since she was 10.

PP's question about jobs - zoology's a good, broad degree so she could do anything. If I was a betting person I'd say she'll land up in academia, swanning around some jungle looking for a way to protect a species. I really want uni to take her and just do something with her brain - if she understands scientific processes then she'd most probably come up with something really useful. She is fascinated by the partua snail zoo conservation programme - which look like the wee brown snails that eat my flowers to me, but are apparently much more important than that.

Or, she might land up isolated and unhappy like she was in school. In which case she'll come home and we'll figure something else out.

I'm pleased that she sees that uni is a stepping stone and if it doesn't suit, or if the accommodation doesn't suit, or if the studying is difficult to organise, or whatever, then she can get help to figure it out. I'm less worried.

She's agreed to the right to share thing from uni too, so we'll get that set up. If they'll talk to me then it'll be ok - I don't want to cluck around her, but she needs a safety net.

Thanks all. I'll see what the next couple of weeks and the psychiatry review brings.

That’s a really positive update OP. I think it’s great that you and your daughter are able to chat about this.

Hopefully things will go well for your daughter.
Maybe the fact that the Uni is so far away will be a good thing as she won’t be able to race home at the drop of a hat.

You must be really proud of your DD for the way she's dealt with this and is prepared to accept compromise. DD must really want to do the course which is great.

No advice op but your DD sounds exactly like my oldest child who is a bit younger but this is the situation I imagine them to be in in a few years time.

Do advocate even if it means being that parent. I hope you can persuade your DD to get the autism assessment.

What a positive sounding update. You do BOTH sound amazing and I wish you both well!

Out of interest what would you have done differently? I know my child in ND and I've told school and we're awaiting assessment, we have chats about it and have both researched but I'm not sure what any of it is achieving or what else I could or should be doing.

I do worry for them and their future.

Ffs. No pets.

If it's any encouragement, my son has just finished first year, in halls. He has complex special needs and MH problems and he has done fine. There are a lot of things he should have done that he didn't do (apply for extra time in exams for example) but I decided I had to leave him to it!

There were some worrying issues - he burned himself cooking and didn't go and get medical attention - but he did all the right things (I had sent him with a very extensive first aid kit etc.!) and treated it himself.

It is so so hard. So hard. He was also desperate to do it himself. I still wonder whether if he had a massive deterioration in his MH whether he would tell me - he said he would but I don't know if that's completely true. Now he's over 18 though and in a relatively stable place, I think you end up having to let them try.

Good luck with it all - I hope she gets on ok!

Your DD sounds great OP
Totally agree with her - partula snails are great!
www.zsl.org/conservation/regions/oceania/partula-snail-conservation-programme

She should reach out to ZSL for internship/project opportunities if she's in the London area

Lots of Uni towns/cities now have private dedicated student "halls" which are remarkably similar to Uni halls, but without all the same rules/regulations. It's usually second and third year students (and beyond) who rent them, but first years can too. They usually offer a choice of studio flats (own bathroom and small kitchen area) or communal facilities, i.e. a "cluster" similar to Uni halls of a number of individual ensuite bedrooms around a common kitchen.

I'm sure they'd be more accommodating to tanked pets.

Trouble with some Uni accommodation is that you literally can't plug anything into your room sockets that takes more than a minimal amount of power as it trips the circuit breaker (to help prevent fires etc, and no doubt to keep the electricity bills down for the Uni!). At my sons, he literally can't plug in anything other than very low power requirement equipment, i.e. phone charger, laptop charger, desklamp, etc. He took a travel kettle but that tripped the switch. He took a large widescreen TV which tripped it. He can just about use his XBox and his newly purchased small LED TV but it still trips if he has anything else plugged in. If he wants to vacuum, it has to be plugged into a socket on the landing. He can only iron in the kitchen.

Just to say - I admire you stepping back and letting your daughter figure this out herself. You sound completely brilliant. I also think that as someone who has a vulnerability, it is fair and right that your daughter has someone help advocate on her behalf…so don’t worry about being THAT parent if it is absolutely necessary.

I'm autistic and have had severe OCD since I was a young child but I would not expect to be allowed to keep a lizard in my rented uni halls.