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

If she has epilepsy then she'll need medication - so surely that's the reason to investigate

Your friend’s stance is quite odd. Imagine saying someone with depression would feel worse if they sought help for the depression, it makes no sense. She’s talking nonsense, you’re absolutely doing the right thing.

Sounds like she's never had to deal with anything stressful like this,lucky her. I would be offended too but try not to take it on board too much, don't waste your energy.

I think YANBU. Sometimes these 'labels' or diagnoses help access support and treatment.

Also, my own personal experience (non neuro typical child), is that schools and people in general are more understanding of issues if there is an official or diagnosed reason behind behaviour.

You're doing the right thing. Anxiety can be fuelled by uncertainty so helping your DD get the answers she needs could make the anxiety better.
Plus, as a responsible parent you want get the appropriate help for your DD.

You are absolutely doing the right thing. It's the not knowing that leads to mental health problems later in life.

@DingDongDenny

If she has epilepsy then she'll need medication - so surely that's the reason to investigate

We don’t really know what they are, which is why we’ve been pinging between the neurologist and CAMHS.

It could be absence seizures, or it could be a tic.

DD tends to go in phases with tics, a tic will be quite prolific and then fade into the background after a couple of weeks - this one hasn’t really faded yet, which is why they’re looking at the absence seizures.

Is your friend not that bright?
Unmedicated epilepsy is dangerous and illnesses aren't labels they are the physical realities of our bodies.
I have a physical chronic disease and am my mother's eldest child.
I was undiagnosed until adulthood partly because my DM listened to people telling her I was just lazy/malingering when I said I wasn't able to do things/was in pain.
I am middle aged now and my DM offers me help/money on a weekly basis trying to assuage her guilt over this.
I don't take it and I reassure her she didn't know but you don't want to be her kicking yourself for not getting your daughter treatment early enough to make difference to disease progression.

YANBU and you are doing right by your daughter. And as crap as it is, it’s best to do it now while you can fight for your daughter instead of waiting for a transition into adult services

I had a broken leg. Not getting help doesn’t mean that I wouldn’t have a broken leg. Getting help meant I had a broken leg that healed well.

Your friend sounds like one of those ' we didn't have autism / adhd etc in my day ' , totally ignorant but not worth the time of day to explain stuff to.

Thanks all!

I’m really pissed off, but then CAMHS also seemed to imply that I was, while not making it all up, making it worse as I was anxious.

I’m just advocating for my child and following her lead.

Not everything is due to anxiety

I suspect that your friend only asked how your DD was so that she could share her fucking stupid and dangerous opinion rather than coming from a place of genuine concern or with any educated insight whatsoever. That friend should be told to get back in her box. (I’m furious for you!)

I'm a mum of a kid with SN. I got this, both barrels, from my family members for a long time. They meant well, and some of them, I think were just coming from a different generation where neurodiversity was really heavily stigmatized. So they were worried. Others were so convinced of their parenting prowess that they gave me long lectures about where I was failing to provide adequate discipline etc. All my fault apparently.

It was pretty upsetting and I struggled with self doubt a bit as a result. But it is very common to get this kind of feedback. Ultimately, as another parent pointed out to me, if your kid is behaving in ways which seem odd to others (because they don't understand), then they are going to get labelled anyway. So what would you prefer the label to be? 'Benefits from specific kinds of extra support and understanding' or .. take your pick from a whole host of nasty, blaming, shaming labels ranging from 'weird' and 'difficult' to much, much worse.

It is very lonely being the parent of a kid with 'extra' stuff going on, so if you haven't already, reach out to a support group, think about it. It's wonder to have a group of people who completely 'get it'!

YANBU! You sound like you've done a bloody amazing job of fighting for your DD.

Are there any issues your 'friend' is currently struggling with in her life? I'd be tempted to express faux concern that she's making a complete balls up of those, and then ask her whether she found that in any way helpful. I'm a right cow, though.

If your child couldn't weight bear and her foot was swollen, you'd see a doctor for a diagnosis, wouldn't you? This is exactly the same.

And it's none of your friend's business. She can butt out. You sound like a great mum, with your dd's interests at heart.

I absolutely disagree and believe your daughter would feel much better if diagnosed just having that understanding of why.

I have however, seen a child who has autism (mild) do a complete 360 and regress horrifically when her mother explained things to her and basically told her that it’s all the adults that needs to change, not her and now not challenging any behaviour because she has formally been diagnosed. Before the child wasn’t aware and just the adults knew.

Her mother is lovely, and really tries but I think sometimes you can create more issues unintentionally.

I think normalising and not over dramatising but being fully aware and having an understanding is a good approach. It’s easier said than done when you are a mother though.

Thank you!

We both belong to a Tourette’s support group locally, but with the lockdowns it’s been closed for over a year - we both miss it.

A different friend was horrified when DD & I laughed at a funny tic a few weeks ago - she was shocked that I’d laughed at her disability. I tried to explain, but I don’t think she really got it.

DD herself prefers to have a proper diagnosis. Back when she developed the complex tics, she found that people didn’t know what complex verbal and physical tics were, so she’d say she Tourette’s, because it was easier and people knew what it was, but she always said she felt uncomfortable as she hadn’t been diagnosed. The diagnosis gave her confidence - she could say, truthfully, I have Tourette’s

Obviously a completely different situation than your daughters but just highlighting that the anxiety it created did seem to worsen things for a while.

I think the problem is the word 'diagnosis'. You appear to have that, and are now investigating possible underlying physical causes. A perfectly normal thing to do in the circumstances.

Your friend is an arse.
Of course you and your daughter need to know the reason for the absence seizures!
Your "friends" opinion was not wanted or appreciated and I don't blame you for being pissed off.

Your friend sounds a bit insensitive and I can totally understand why labels can be helpful.

What I will say though is i old a lady who has a teenage daughter with various difficulties and we (as a group of friends) sometimes wonder if the way our friend deals with her DCs demands, whether she’s making it worse.

For example they’ve moved house 3 times, because DS didn’t like ‘the feel of it’. I mean, IMO they’re facilitating his fears and adding to the issue. I wouldn’t say anything because it’s bond lf my business.

Not saying your situation is the Dane of close but perhaps friend is concerned so try not to be too hard on them. I’m sure it’s coming from a place of care

Can I just say that I completely get how you feel. I’m having some issues with my daughter and family always think I’m making a mountain out of a mole hill and try to play it down. My answer always is I am just being honest and no one ever wishes their child to have any issues so all I doing is trying to help her.

Sometimes people who don’t have to deal with things don’t realise what they say is upsetting.

I completely understand this but the negative comments were from the actual therapist! Eldest ds was referred by GP to therapist with tics and Tourette type behaviour. She spoke to us both together for about 5 mins then spoke to him alone for about 20 mins. The result was her basically saying she felt that he was able to cope with it and "may grow out of it" and she insinuated that I was putting my anxieties about the social aspect onto him. I actually was just worried at how I saw him withdrawing into himself and not wanting to do things/becoming self-conscious etc. And worried about how it would affect him if it got worse.
He had gladly gone along to the appointments with me with no objections so 🤷‍♀️. I tried to get help and faced a brick wall basically.
That was about 6 years ago, he's grown up now and still has quite bad ticks but doesn't make many noises from what I've noticed any more.
I'm happy so long as he's happy but I do understand that horrid feeling when someone insinuates you are not "accepting" of your child's tics or whatever. She was very patronising and it pissed me off il tell you.

You do what is best for your dd, so long as she is happy and willing, and tell your "friend" she has no right to comment as she hasn't walked in your shoes.
Living with a child who is badly ticking and making noises can be really unsettling for everyone and I think you owe it to them to at least try to get them some help. I hope you have a better experience than me.

Friend has a son