Advice on refusing to leave the house

Deborah75

Hi there, I’m new to the forum, any help is very welcome and I apologise for such a long read, I have a little girl age 10, with autism, also waiting on diagnosis for adhd, as from the Easter break she has refused to go out anywhere and to school, which we are shocked at as she’s always loved going to school…She has high function anxiety but thought it was under control up until Easter, iv asked her why she doesn’t want to go out and she’s told us because it makes her have a funny tummy and she feels sick. Tried and still trying all the strageties that were given from Autism advisory intervention services, referral also sent in to Action for Children, we should hear from them just after 27th May as that’s when the meeting is, iv listen to podcasts about transitioning back to school, but nothing is getting her to come out of this, its like a fear of leaving home to get to where we want to go….we manage to get her out to the back garden for some air and use the trampoline and her swing. Adhd clinic are doing their best to get her fitted in soon as they said the medication would help her anxiety, I’v explained to them on how she is, so when we do get her appointment how are we getting her there when itl just cause another meltdown, which can be really bad, as today she had one and it absolutely drained her all because I had put my shoes on because she agreed to go see her gran, but then changed her mind, she looked so frightened and it took me a while to calm her and said we can try another day. I just don’t know what to do, social stories, visuals nothing seems to help any advice or anyone who’s experience this I’d appreciate any feedback please…gp has said it could be a mixture of things along with hormones, but can’t give her anything itl be the adhd clinic that can do that, school have been good keeping in touch, they will plan a home visit soon and I asked to get some work sent through the seesaw app which my little girl is happy to do…..thank you for reading, I hope someone can help

Mary_Scope

Hi @Deborah75 and a (belated) warm welcome to the community!

So sorry this went unanswered for so long, it must have got lost in the forum. It sounds like you have tried lot of different strategies and are doing your absolute best to help her😊

How have things been since this post? How was the meeting on the 27th May and have you heard anything back from the Action for Children referral yet?

Deborah75

Hi, thank you for the reply

The meeting went well as they accepted her referral we now have a 12 week home visit course, this started on Friday 18th July, the lady comes to our home, so hopefully she can help with more strageties. Daughter still won’t go any further than front / back gardens, but once every now and then she would venture out to the street for a brief walk around, but this is only been a few times, she still won’t go a short drive in the car, as she’s scared incase she gets motion sickness (last time she was in the car she had a headache and didn’t feel well) so we can pinpoint that’s the car journey reason, but a couple of times she has sat in the car while engine off and just parked in drive, those are the small steps but it’s only when it suits her she will do this. We finally got her adhd diagnosis which the docter accepted myself to attend the appointment, so after 4 years we finally got that, daughter has now been on 10mg of medikinec for the last 4 weeks and we can start to see a little difference in her focus and concentration but still early days. She has been on a multivitamin and also a magnesium gummy everyday for quite a few months. I think if her anxiety levels stayed down and she got the courage to try a very short drive I think this will let her see she won’t feel sick in the car all the time and also help get over the fear of getting out again, she knows we also have medicine in the cupboard to help with sickness for travelling etc. My one wish at the minute is just getting her out again and let her see she will be fine, thank you

Mary_Scope

Thank you for the update @Deborah75. It’s good that you are getting some support and it’s lovely to hear some positive steps like the referral being accepted and the 12 week course, hopefully this will be really helpful!

From what you have described though, it does sound like you're already seeing little sparks of progress, especially with your daughters focus improving on the medication.

How did the first home visit session go? Did the lady share anything helpful or new you might try next?

I understand why your daughter would link the car with feeling unwell (and being sick can be a big fear for kids!) but having the travel sickness medication ready and not pushing her sounds like you're doing a really supportive approach.

It sounds like you’re doing a brilliant job of creating the space for your daughter to feel safe and it sounds like she knows that you’re in her corner so if/when she does decide to try and get in the car, or go out into the garden or venture further she knows you're going to support her all the way😄

Deborah75

Thank you so much. First session was mostly all paperwork, signing forms etc, but the lady will have some new strategies to try in the next few sessions, we will stay positive and hope with the family support we will get there with her.

Catherine21

https://forum.scope.org.uk/discussion/comment/1051729#Comment_1051729

For hormones look up pmdd closely linked to adhd and of ten days before menstrual cycle if anxiety and other symptoms become more extreme severe and once cycle complete become more calm then should definitely read up about pmdd not many doctors know of this and they should do very debilitating hope all support works well amazing getting support

Deborah75

Hi Catherine21,

Thank you so much for your reply, I will look into this more….strange that myself and oldest daughter spoke about hormones etc again yesterday, even though my 10 year old hadn’t took her p yet, we know it’s definetly working on her as we both took ours young, we have noticed around a certain time in the month the anxiety can be a lot higher than the rest of time, we too believe that this is the cause. Thank you again!

Catherine21

https://forum.scope.org.uk/discussion/comment/1051804#Comment_1051804

When I started mine at 13 it was horrific i won't say all that happened but this patten repeated throughout my life always ten days before cycle I would be on my knees anxiety depression anger rages once I started period all symptoms went and I'd have a good 12 days a month always to doctor who's meant to understand female bodies after years turmoil I connected after research pmdd as by that point had been diagnosed with bpd bdd more research body dismorphia pmdd is closely connected to adhd I'm 53 awaiting adhd test I would never want anyone to go through what I did especially as a teenager note there is not much help for pmdd and lots of GPS ect don't even know what it is I'd suggest for. Hormones magnesium look up histamine intolerance and if do think maybe Hormone based that triggers adhd more loads of pmdd groups with great information also antihistamines they say to take around cycle to take inflammation down sorry I'm awful at explaining but I can see similarities that I experienced let's us know how you get on

Catherine21

Ps I repeat myself alot I forget what I write originally pls excuse waffling

Deborah75

Thank you so much Catherine I really appreciate your reply’s, I will keep an eye on everything and look into it! Myself and older daughter where diagnosed with Pcos in our teens, bad p’s every month for couple of years then only took a p once or twice a year but still got all the symtoms, pains etc which was a nightmare cause we rather have it come and get it over with. I’d always trouble with fertility and now the oldest daughter (26) is going through the same. My rainbow baby who’s now 10 and is the one I write about, I dread it all with her, but if it is bad il get her on the mini pill when time is right as she’s too vulnerable and younger at mind and with her autism, special needs and now adhd I’m not having her suffer like us, I know it’s not nice saying this but I doubt she will ever be able to have a relationship or children. The oldest has now been told her results of her mri and has endometriosis too…iv been perimenopause for 5 years now, and surprise surprise I get a painful p every month, just waiting on my appointment to start HRT….honestly Catherine, a woman does not get it easy! I wish you all the best for your adhd diagnosis and thank you for your advice I will take all this on board x