To be really bloody offended by this?

[alloalloallo]

My 16 year old DD has Tourette’s

Recently she’s been having these odd episodes that the paediatrician thinks are absence seizures and referred us to a paediatric neurologist. We’ve been bounced between the neurologist and CAMHS for a few weeks and it’s been quite frustrating, but we’ve finally got an appointment for the paediatric neurologist.

A few days ago I met a friend for a drink.

We were chatting about general stuff and she asked me how DD was getting on. Friend has witnessed the episodes and knew we were having problems, I replied that DD was fine and we’d finally got an appointment sorted.

Friend then asked if I thought I was becoming “obsessed” “what good does all these labels do?” and “does it matter if she doesn’t get a diagnosis?”

I replied that yes, DD wants to know what is happening to her and why.

Also, her secondary school were great, put access arrangements and stuff like that in place before she had a formal diagnosis, however, she’s starting college in September and wants to know that they have all the formal information and can work out what she needs before she starts.

DD has always had tics, but they were always simple tics (blinking, sniffing, etc) and we were always told it was due to her anxiety. A couple of years ago she went on to develop quite severe complex verbal and physical tics - again it was felt it was due to her anxiety and we had to wait a year before they would begin further investigation.

DD has struggled with anxiety in the past. Back in the first lockdown, she couldn’t leave her room without having a panic attack. Over the last year or so she has had CBT with a brilliant therapist that she really clicked with and is feeling pretty good. She says she now understands anxiety, can recognise what she’s feeling, has been using the CBT techniques and feels like a fog has been lifted - she’s out and about with her friends, is looking for a summer job. She now sees her therapist once a month for a check-in chat and the therapist is really pleased with her progress. DD has occasional bad days with it, but the good vastly outweighs the bad and is thoroughly pissed off with everything, ever being blamed on anxiety.

Apparently friend is worried () that I’m making DD’s anxiety worse by pursuing this. That DD has probably got used to living with anxiety so doesn’t notice it anymore, that she doesn’t need a diagnosis as it won’t change anything, that labels will follow her around for the rest of her life, “she doesn’t need a diagnosis as it’s not like she’ll be medicated”.

I now feel like I’m some kind of over anxious mother, pushing my DD into labels and diagnoses she doesn’t need, making her anxious, and that we’re doing the wrong thing.

Tbh, CAMHS made me feel like that too

I fell out with a friend, permanently, because she felt it was her place to tell me what to do with my ill teen. She got really angry when I declined to take her advice, which funnily enough, was to not treat and force dc “to get on with it”. She was an absolute cow anyway but that was the final straw. I always gave her the benefit of the doubt before because she had so many ishoos, but she tried to sabotage (that’s not too strong a word, that’s exactly what she was doing) my child’s wellbeing. Took bloody years to shake her off too. Other people have no right to comment on your child’s medical treatment!!

Yeah, I'd be a bit I think it comes from that very old school attitude and stigma surrounding anything remotely related to things such as metal health/ASD/ADHD and others, which unfortunately lots of people haven't moved away from yet. Ignore her and keep fighting for your daughter, sounds like you're doing everything possible which is in her best interests

My sister has absence seizures but wasn't diagnosed until into her early 20's after about 6 years of experiencing them. They had to rule out lots of other potential problems before they could be certain. While it's not very important to her everyday life (she's not medicated because of it) it still means she can't do certain things such as drive and she received extra help at uni (even though she was still in the diagnosis phase) such as a computer and support to keep an eye on her and extra time. For her a diagnosis was very important for those extra little bits of help it's also just useful to know exactly what was going on and that it wasn't something more serious.

I think it's always useful to know more about your own physical health and mind not less.

Your friend is a knob. My son was diagnosed with Asd and someone I thought was a friend said, we are all on the spectrum 🙄. Some people are a bit weird.

I'm so sorry this happened to you, OP.

I'm not neurotypical and have an "invisible" physical disability so this hits hard for me.

My view is that your friend's attitude is simply hate/discomfort towards disabled people by another name. Some people feel like "all these labels" will take away their power to exclude or discriminate against differently abled people, something that was very easy to do back when you could call someone like me "lazy", "weak", or "weird". They're right! Labels legitimise conditions, identities and difficulties, and that's very unsettling to biased or bigoted people.

I agree with other posters who say that it's not worth your time and potential distress to try to extensively educate your friend. I would let her know that you don't agree with her, though, and leave it there.

These friends sound terrible. I would be tempted to make light of their own concerns about things, see how they like it. (They won't).

YANBU - my DS's school told me they would treat his SEND exactly the same with our without a diagnosis as he showed many of the traits. They did put things in place, but since his diagnosis they completely changed how they treated him (he went for 7-10 behaviour comments, for things like dropping his pen, swinging on his chair etc to 2-3 a week).

Plus he finally feels that there is a reason for his struggles and isn't just 'useless' as he often said. I feel more able to advocate his needs because I have a formal diagnosis rather then he has a 'suspected SEND'.

I don't balme you.

You're clearly trying to do your best for your child with support and investigating to find futher support and treatment options.

IME with a family member and two different medicaly conditions they have odd views on - it's only HCP or a suffer letting rip publically at their complete ignorance that gets to them re-think. So for blood pressure reasons may be best to limit contact.

@FawnFrenchieMum

YANBU - my DS's school told me they would treat his SEND exactly the same with our without a diagnosis as he showed many of the traits. They did put things in place, but since his diagnosis they completely changed how they treated him (he went for 7-10 behaviour comments, for things like dropping his pen, swinging on his chair etc to 2-3 a week).

Plus he finally feels that there is a reason for his struggles and isn't just 'useless' as he often said. I feel more able to advocate his needs because I have a formal diagnosis rather then he has a 'suspected SEND'.

Yes! Exactly!

School were great, and put in place everything she needed, but for stuff like access arrangements for GCSEs (they were expecting to the take exams as normal then), school needed more formal stuff.

She’s starting college in September so wants it all put in place before she starts

And she feels more confident being able to say “I have Tourette’s” - people know what that is, whereas complex physical and verbal tics used to be met with blank faces all round

YANBU. There is a lot of ignorance around SN. You expect it from the general public a bit but when it comes to friends and educational and medical professionals who are supposed to help you, it is a really lonely path to be walking. I have been in limbo with DD17 all of her life with my concerns brushed off.

Labels are the passport to proper support and they give carers and their children some sort of closure in that all the other stuff such as guilt, low self-esteem, frustration can be explained away and put to bed.

Your friend doesn't know what she talking about.

I would make it clear your DD isn't a topic for discussion.

@Paddling654

Your friend doesn't know what she talking about.

I would make it clear your DD isn't a topic for discussion.

This.

I have a child with autism.

I honestly cut people like your friend a wide berth or get rid of them entirely.

"Friend" is being an officious & ignorant twat.

Apparently friend is worried (hmm) that I’m making DD’s anxiety worse by pursuing this.

Yeah. As a non-medical person, I always worry when someone breaks a leg, then some nurse turns up to make the leg worse by pursuing bone-setting & plaster casts.
Obviously, with my superior laywoman skills, I 'know' that leaving the leg alone would be the wiser action, & because I value my ignorance over professional competencies, I feel the need to point that out.

“she doesn’t need a diagnosis as it’s not like she’ll be medicated”
Your friend has an issue with non-neurotypical conditions.
When she uses words like "labels" she is showing that she believes there is stigma attached to such conditions, & as such things like "diagnosis" should be avoided.

She also has comprehension difficulties.
Diagnoses are not handed out in order for the diagnosed party to receive medication.
Whether meds are required or not, a diagnosis is necessary. It's the entire reason a patient looking to understand & manage symptoms consults the medical profession FFS!

What she is really saying here is "your DD's condition is an uncomfortable topic for me, & I would prefer you to ignore her symptoms than deal with them, because I don't like feeling awkward about it."

She can fuck right off with that attitude.
The only one fearing "labels" is her - that's her bigotry, not yours OP - don;t let her infect you with it.

& very well done to DD btw - learning to manage anxiety is hard, even for adults, & the fact that a teenager has lifted so much of the oppressive 'fog' as you describe it is a major achievement to be celebrated.

Your friend is very rude calling you obsessed and trying to put blame on you. Not how a friend should behave. You are doing the right thing. A lot of people find that CAMHs tries to make it a parent problem rather than treat it, so don't let them make you feel bad either

My DD (12) has had anxiety for about 4 years, with occasional tics, so I understand a bit about where you are coming from. Your friend is a dickhead, please don't listen to her. She is not your DDs parent, you are. She does not know or understand your DD even a fraction as much as you do. She does not live side by side with your DD as you do. She does not witness to your DDs anxiety, tics and seizures, you do. In short she doesn't know what the hell she is wittering on about, she just thinks she does. Carry on as you are, you know best, not her. I also had anxiety as a child, really quite badly, but nobody helped me and I didn't start to get past it until I was well into my thirties, that was about 25 years of needless suffering. You are helping your DD, that is the right thing to do.

PS A friend would be supportive

@alloalloallo have anyone mention FND (functional neurological disorder)?

Your daughter sounds a lot like my wife at that age and she’s just this year got a diagnosis of FND (she’s now 36). She was treated with anticonvulsants for year when it was disassociative episodes not seizures.

Good luck to your daughter and your friend needs to butt out.

You are not an "over-anxious mother" OP, & your friend's attitude drips poison. I could cheerfully slap her for this alone:

DD has probably got used to living with anxiety so doesn’t notice it anymore

As per my broken leg analogy above.
"DD, you're probably used to the pain & inconvenience now, & have become accustomed to not being able to run, dance, or walk upstairs, so I have decided - on your behalf - that you don't notice it anymore. So we won't try to understand how to fix it, or get you any treatment."

I suggest you tell your friend that when she has her medical degree, & has spent several years specialising in anxiety & Tourette's, you will welcome her input.
Until then, can she please STFU, because her negativity & interference are making you miserable, & yes, that's an Official Diagnosis, from the clinic of Dr Buck

I think that because camhs are underfunded and can't manage the huge workload they just try and sign people off any way they can so they don't have to treat them and making out it's a parent problem is a way of doing that

As someone with a long term mental illness I can say my life and the way I cope with my illness has vastly improved since receiving the right diagnosis.

I really struggled as a teenager because I didn't understand why I was like I was. I would go round in circles asking myself why I was depressed or anxious. It was anyone ever asked me. Now I have an answer. I have depression because I have an illness and that means some times my mood goes low or high just like diabetes can mean someone's blood sugar can go high or low.

It really annoys me when people say labels don't matter. They do (at least to a degree). The right diagnosis has opened up the right treatment for me, allowed me to gain a good insight into how my moods can change and allows me to access appropriate medical support when needed.

Your friend sounds ignorant. It's very easy to be dismissive when you're not dealing with an issue on a daily basis.

And I'm sorry to say that there's a possibility that your anxiety could be adding to the issue with your dd, depending on how you're approaching things. My younger brother has autism and is developmentally delayed. My mum has spent his whole life trying very hard to help him, but in doing so has accidentally done the opposite. If he says he can't do something, she believes him, instead of encouraging him to have a go. For example, she always tied his shoes, assumes he won't be able do stuff so doesn't ask much of him, finds it stressful and embarrassing when he tried to awkwardly achieve things in his own way. I took him to a Japanese restaurant and over the course of the meal he got the hang of using chopsticks. Not perfectly, but he got food into his mouth. My mum was gobsmacked, really couldn't wrap her head around her "poor boy" struggling to eat with sticks. He's 20 years old.

Are you perhaps giving her too much leeway? But being able to leave her bedroom is extreme, how long was it before she got to that state?

Not* being able, sorry.

I can sort of see both sides
Dd has tics- head movement, shoulder shrugs, arm movements.
If we draw attention to them in anyway they increase.
One will disappear eventually and another will take it's place.

But getting a diagnosis for her is not a bad thing. It isn't the end of the journey but it can be a battle and without a diagnosis then help is harder to access.

That DD has probably got used to living with anxiety so doesn’t notice it anymore

This is utterly batshit. If you "didn't notice" anxiety it would be an indication that you didn't have it, not that it's something fairly trivial that you've learned to live with". I'm afraid your friend is really quite thick.

Your friend is not a friend. She is being ableist and rude.

I have a LOT of labels and most of them are neurological ones. But without those, it was harder for me to find personal acceptance and to believe that I wasn't just a huge failure.

I get ignorant comments like that all the time. But I wasn't able to access the right support without my diagnoses. I cannot explain myself properly without them because it's awkward saying "I'm autistic, I need xxxx" without the diagnosis.

Epilepsy is comorbid with other neurological disorders and divergences. If it is epilepsy then there's medical treatment. It could also change, worsen. So if course it needs assessing properly.

I'm so sorry you've had to experience this ignorance. Your poor daughter.