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Thread 14 - Autism and any other SEN

503 replies

dimples76 · 15/08/2024 18:56

Thread 13.

For parents / carers of disabled children, autism, adhd, and all other related neurological conditions. Most of us have children in primary school. But everybody welcome!

Chatting about anything and everything related to SN!

Links to previous threads.

Thread 12
www.mumsnet.com/talk/special_needs/4816294-thread-12-autism-and-any-other-additional-needs?page=1

Thread 11
www.mumsnet.com/talk/special_needs/4711291-primary-school-auties-11-2023-is-here 

Thread 10
www.mumsnet.com/talk/special_needs/4592899-primary-school-auties-10-summer-and-beyond-2022?page=1

Thread 9
www.mumsnet.com/talk/special_needs/4502988-Primary-school-auties-thread-9-spring-summer-2022

Thread 8
www.mumsnet.com/talk/special_needs/4422100-Primary-school-auties-step-into-Christmas-and-the-New-Year-thread-8

Thread 7
www.mumsnet.com/talk/special_needs/4303826-Primary-school-auties-summer-and-the-new-academic-year-thread-7

Thread 6
www.mumsnet.com/talk/special_needs/4166833-Primary-school-auties-spring-2021-and-beyond-thread-6

Thread 5
www.mumsnet.com/talk/special_needs/3953023-Primary-school-auties-summer-and-beyond-thread-5?page=36&reply=104240251

Thread 4
www.mumsnet.com/talk/special_needs/3748449-Primary-school-Auties-into-2020-thread-4

Thread 3
www.mumsnet.com/talk/special_needs/3628263-Auties-transition-to-Year-1-thread-3

Thread 2
www.mumsnet.com/talk/special_needs/3451020-Reception-auties-2018-19-thread-2

Thread 1
www.mumsnet.com/talk/special_needs/3080753-DS-with-ASD-starting-school-Sept-2018-I-am-feeling-overwhelmed

OP posts:
carriebradshawwithlessshoes · 26/04/2025 22:16

@dimples76 DS loves you very much. Open said a while back that this is most likely his way of testing your reaction. I would try and not take it literally, I know that’s hard. I’m glad you sound to have had some good times over the Easter hols.

@Ahna65 I am not offended either, talk away to us. Your situation sounds very hard, I’ll answer as best I can. Re the meds, do you have a good line of comm with DDs dr, can you ask if these are side effects, settling in symptoms etc? DS has tried a lot as you know over the years and is super sensitive to everything. Even his current lamotrigine was terrible as we were ratcheting up the dose. Is the dose right for her, another thing to ask. DS takes only 2 thirds of the drs recommendation, we just couldn’t get him to the full dose and it took him ages to settle on this. I think you have to give it a good shot but also think it may just not be the right thing for her. When’s your next appt?

re your pregnancy it’s such a personal decision isn’t it and what’s right for you may not be right for someone else. Do you have anyone to talk to irl… a trusted friend? I don’t have lots but do have 2 who I could have that discussion with. I really relate to what dimples said. Although DS presents differently to your DD I am absolutely, totally, probably irrationally consumed day in day out with stress, fear, worry and so on about him I would not have the emotional or physical or mental capacity for another child, even an NT one, as much as I would have loved one. If DS had been my first I would not have had another. However you do manage a lot more than what I could with your work, amazing job, working full time etc so you may be able to cope better than what I ever could! I think whatever decision you make will be the right one and you always have to tell yourself that. Keep talking to us if it helps.

carriebradshawwithlessshoes · 26/04/2025 22:27

In terms of us we have now tried the PANDAS stuff which really comprised only 3 things… an AB, an anti histamine and an anti inflammatory at a v high dose. DS has v bad hayfever and it calmed that down which generally calmed him down but beyond that nothing earth shattering?? I’m not sure what I was expecting really… him to come wandering down the stairs one morning talking to me? Well actually yes I do hope for the start of this so tell me I’m being ridiculous…

openupmyeagereyes · 27/04/2025 07:59

dimples teenage hormones are starting to kick in which I’m sure doesn’t help.

carrie I’m sure you’ll never stop hoping for Ds to speak. It’s not ridiculous at all.

It does strike me that AB’s and high dose anti inflammatories have probably caused havoc with his gut health. Have you got him on probiotics?

openupmyeagereyes · 27/04/2025 08:00

Will the redo his bloods to check if these markers have gone?

Ahna65 · 27/04/2025 09:13

Yeah @carriebradshawwithlessshoes everything you say chimes with me tbh already very much at / sometimes exceeding capacity. I guess the one thing that gives me pause is thinking about DD2 in the future but have to think about me / DH / DD1 too. I haven’t shared w many friends at all, my very best friend has difficult fertility situation and I didn’t feel I could burden her, there’s very few ppl who I think have enough of a window into our life to understand. I did speak with a counsellor (together with DH) for a couple of hours who I got referred to by GP which helped in a way. I definitely feel like I’ve thought things through at length so although I can see myself feeling sad down the line I don’t necessarily see that ‘regret’ is a risk really (if I terminate).

interesting re DS being sensitive to medication and yeah it does feel like DD is reacting, but almost the opposite of what the medication is expected to do (make sensory stuff more manageable), so I hope it’s just a teething period. We have having a follow up and bloods to test kidney function etc this week.

i think it’s great that you still hope for speech @carriebradshawwithlessshoes , tbh I struggle to expect / hope for it now and I think that’s not good from me

@dimples76 yes of course he loves you but that must just feel so hard hearing those things and it often seems to come down on you after a nice day / a good period and must just feel really deflating.

carriebradshawwithlessshoes · 27/04/2025 09:58

@openupmyeagereyes no he’s not on a probiotic… I think your DS is, you have mentioned before? Which do you use?

@Ahna65 i totally agree re the opp side effects to what the stuff is supppsed to do! This is abs what we see every single time. Usually things to calm him down send him haywire. Even the AH which ‘may cause drowsiness’ has massively affected his sleep. We had to stop the first AH recommended (ketotifen) because he was having constant meltdowns and up all night. So yes, great stabiliser and sleep assist…what pisses me off is when the drs then just huff and say ‘well it shouldn’t do this.’ Well… I’m not making it up here??!

I also totally get you re DD2. One day I’m going to be questioned as I’m permanently staring at siblings when out and about having sibling chat/ banter/ interaction. It’s the one thing apart from kids that talk that really kills me. There were 2 the other day in the supermarket, both blonde and prob 5 (the boy) and 8 (the girl) so just like DD and DS re looks and age gap and older girl. They were with their dad and I was mesmerised (not in a good way.) it’s just awful.

I don’t think I will ever give up on speech because DS does really try. We had an assessment done recently and dyspraxia (speech and motor generally) was shown to be his no 1 challenge… then directly affecting behaviours and demand avoidance etc. He is hugely expressive and interactive when he wants to be and I can imagine those same situs with words. But just never thought it would be this hard. I know cognition is often linked to speech issues and that was tested too on his assessment which was at age range. The assessor actually said she had never seen a child with no speech with the levels of cognition/ understanding of DS. Said it was a v v odd profile. So somehow, at some time, I kind of just hope that can break through. How and when though I do not know.

openupmyeagereyes · 27/04/2025 10:19

I get Optibac kids sachets from Amazon.

carriebradshawwithlessshoes · 27/04/2025 10:38

Thank you. Sorry didn’t answer re tests. The ones he had done were private and ££££.. just can’t afford that again. We have a cons appt on 1 July to follow up. I’ll mention but the nhs wouldn’t even prescribe the AB so I doubt will do anything re the blood tests!

dimples76 · 27/04/2025 16:56

At the risk of sounding like I am having a pity party there is very little sign that DS loves me at the moment although he certainly needs me. Feeling particularly negative just now as when I announced that it was DD's turn on tv he started throwing stuff at me. One of the hard plastic toys caught me on.the forehead and it really hurts.

Absolutely no judgment here @Ahna65. I know how you feel about friends not seeing the whole picture of home life. DS is generally so charming and entertaining in company. Even when the police came out after my neighbour heard him threatening to knife me they commented on what a sweetheart he is ......it is very isolating.

We're back to the psychiatrist the week after next but as DS is currently refusing all meds and vitamins I am not sure what, if any help they can offer.

OP posts:
openupmyeagereyes · 27/04/2025 19:03

Sorry dimples, that’s really difficult.

dimples76 · 29/04/2025 20:00

I attended a free online Mencap seminar on wills and trusts today. It was really good although it did make me emotional at times - the thought of DS trying to navigate the world without me kills me. Fortunately I had my camera and mic off so just had a little cry. Now, to get sorted and put the plan into action although first I need to do DLA renewal form.

OP posts:
openupmyeagereyes · 29/04/2025 20:07

Do you recommend it dimples? We really need to start looking at this.

I try not to think about this scenario as it’s just heartbreaking otherwise.

openupmyeagereyes · 29/04/2025 20:08

Also not looking forward to DLA renewal towards the end of the year.

Ahna65 · 29/04/2025 20:15

Agree it’s a topic we haven’t addressed as it’s too hard. But I know we need to pick guardians and such for a worse case scenario, but I can never go ahead with thinking about it in depth. I thought that was just me tbh.

I probably need to listen to a webinar or something too (I guess the lay of the land is different here too).

hope you’re ok @dimples76 - definitely a reasonable topic for a cry if there ever was one!

dimples76 · 29/04/2025 20:28

Yes, I found it very useful. Just focusing on the financial aspect of things I can see a clear way forward and I am going to set up a trust for DS's half of my estate to go into. I am keen to protect DD and try not to put too much pressure on her. So I think that I am going to use Mencap as professional trustee but put it in my letter of wishes that she should be consulted about significant spends ...then I think that she can choose to be involved or not.

I do have a will and have named guardians. But my original plan was for death in service and life insurance were to go to my Mum and sister to help them with extra expenses of raising my two then house sold and money held on trust. Think that I need to give it a bit more thought and get some more advice.

Almost finished the DLA form so must get that finished and sent off - imagine that it might be the last one before PIP ..

OP posts:
dimples76 · 07/05/2025 20:07

How is everyone?

I am going into volunteer at DS's school's VE anniversary activities tomorrow so I am hoping to gather more Intel re DS at school then. School sent me a gorgeous pic of DS today looking v proud of his work - wish that I could share it with you.

OP posts:
openupmyeagereyes · 07/05/2025 20:26

How lovely dimples Smile

We are ok, thanks, not much to share.

Lydia how are you? Long time no post!

Ahna65 · 11/05/2025 09:34

Aww have a mental image of the picture @dimples76 sounds lovely

we are doing ok. DD had a decent week. It’s been nice weather so lots of outdoor time with her.

I decided to terminate the pregnancy which came with some relief (I got to the point where I was fully sure w decision) but an unpleasant experience physically and I feel quite emotionally drained too.

beautiful weather here today, hope for you all too x

openupmyeagereyes · 11/05/2025 15:13

Hugs Ahna. I’m sure it’s difficult even when you know it’s the right decision for you Flowers

carriebradshawwithlessshoes · 11/05/2025 16:46

@Ahna65 i think whatever decision you made would have been the right one. Sometimes the worst thing is that in between time when you feel in limbo. At least now you have made the decision and that must give a lot of relief. Take care of yourself.

do you think DDs decent week is down to the meds? Are you seeing anything from them?

Ahna65 · 11/05/2025 16:55

Thank you both.

re meds @carriebradshawwithlessshoes , maybe? She had her first swimming lesson in 3 weeks and the teacher found her much better re attention etc. Interesting bc I find it hard to judge when we see het daily, but maybe it’s kicking in? She does often have a good week followed by a bad one tho. Maybe i should keep more of a diary.

carriebradshawwithlessshoes · 11/05/2025 17:02

I think you should keep a diary. It’s great if it is. We have had so many things presented to us re DS that we have tried and nothing really has ‘worked’ usually resulting in a lot more hyperactivity and behaviours like hair pulling and biting. So this is really interesting, let us know!

Ahna65 · 11/05/2025 17:15

Yes will absolutely keep you updated! And even if the good week is just down to more being outside and evening swimming in the lake, not complaining. A good week is a good week!!

we are trying to decide on summer plans. Had kinda resolved not to travel w DD for foreseeable but now it’s coming into planning we don’t know what to do really. What are you all planning?

carriebradshawwithlessshoes · 11/05/2025 17:24

Our hols tend to all fall over a couple of months @Ahna65 ! I am taking my DD to Portugal for a few ‘girls’ days. The following week we are all going to the south coast where we self cater. We know the area really well and if you can drop on good weather it’s really like abroad (but no guarantees!). I have a cousin who is coming with us this year which is good as she has offered to have the kids whilst me and DH eat out one night. He has a ‘big’ birthday whilst we are there so I’m looking for a v v child unfriendly restaurant to make the most!! 😂😂. Then early Sep we are doing the same hol as last year to Dubrovnik in a hotel.

dimples76 · 12/05/2025 20:21

@Ahna65 I am glad that you were able to make a decision and move forward but I am sure it was tough. Good to hear that DD has had a better week.

We have 2 mini breaks (had one to Drayton Manor at Easter and the other is to Yorkshire Wildlife Park in May half term). Both 1 night hotel stays. Then we have a week booked in a cottage in Scotland in August in a seaside village. It will be our 3rd stay there as the last two times went very well. My Mum is coming too. It's just v chilled and very beautiful, the first time we went we only took the car out once as we spent most of our time at the beach. Hoping for good weather again!

OP posts: