SEN PARENTS SUPPORT GROUP - Thread 1

[mumofoneAloneandwell]

Hey everyone

this is the original thread that was started for half term:
https://www.mumsnet.com/talk/_chat/5491563-half-term-sen-parents-support-group?page=1

but we’re carrying it on since it’s been helpful

all parents of sen kids are welcome - also those who’s sen kids are now adults!

safe space to vent, share advice, tips and tricks, share good news and bad, and just chit chat and be 🙂

i am a mum of one dd. She’s 6 and is autistic and not yet verbal. It’s just us, no support system so I am thankful for the people on here keeping me company through the journey ❤️

@mumofoneAloneandwell what's wrong my dear are you sick? Is anyone taking care of you at all?

did you decide what to do with DD’s school ?

DS really enjoyed his work experience at stables - the lady could only give him a few hours in the morning, but that was probably as well as I think he might have found a whole day overwhelming. He seemed to be really energised by it, he said when he finished on his last day 'I felt this feeling of not being tired that I hadn't felt before'.

I have just contacted a few tutors online about maybe having an introductory discussion about supporting DH's English. I've said in my message that he is really having a total block with writing as I want to be honest about what the issue is and only talk to someone who thinks it's something they could help with. I'm just hoping that having someone other than us or a teacher going through things with him might help somehow.

I think she probably needs medication tbh although we're reluctant because methylphenidate can cause sleep and appetite problems which she already has.

I don't know how well I am in control of my emotions. More than I used to be. I have more of a sense of humour about it than I used to. Sometimes DH and I find ourselves in such ridiculous situations.

Good luck! Age does make a difference usually.

Yes, exactly. PDA is v hard. She has said some dreadful, appalling things at times. The emotion she finds it hardest to deal with is excitement. She has a birthday around Christmas time and that time of year is so hard. There's always an explosion over something!

We had our first ever daycare at home from the hospice team today, we have the occasional in-house overnight stay at the hospice but this was the first time they have been to the house to care for him. It couldn't have come at a better time because his dystonia has really been ramping up this week and he's been in more pain than usual so having people who know him well come to the house to care for him gave me a few hours to get out. I took a friend's dog for a good long walk (7 miles) and got home just as they were doing his chest physio before bathing him and getting him into bed. Those few hours off feel life changing!

Omg a thousand percent this. NT families were like "but Christmas is such a lovely time of year!!" And I was like, exactly lights, sugar, excitement...I kept it low key activity wise but still ended up half of Jan in PDA hangover hell pretty much dysregulated 24/7. I did not start any new years resolutions other than survival 🧘‍♀️ (that's me pretending to be chill in the chaos)

Ahhh seawolves so good you got a good walkies in with a friend's dog. That sounds intense but helpful with the home team coming out 🩷 that sounds good that they know each other already

@Echobelly I am looking into horseriding for dd! Hope you hear back positively about an English tutor

@BrentfordForever Just getting over the flu - i am pulling her out!! In a few weeks time 🥰 - dh having a lovely time 🙄, will you get a break when he gets back?

Sorry about your boss - have you tried seeking an adhd diagnosis for yourself? xx

@Seawolves ❤️ that sounds so tough - what a walk you did though, you should see me googling the price of an uber after 7 mins of walking! Glad you just managed to get a bit of time and fresh air to yourself

@Tiramisuforone thank you ❤️ - i can imagine its hard not to take the comments personally 🥺

@mumofoneAloneandwell bless you!! Like you haven’t had enough to deal with 😔
well done for pulling her off!!!! Your life will change !

I do have my adhd appointment end of month ! Bring on the meds!! Yippeeeee!

Pls pls don’t be super reluctant about meds , there is a high chance your and her life will change!

sleep and appetite issues are all fixable (i give very high fat foods when he’s actually eating ). Also she might be given a non stimulant which doesn’t affect sleep on the contrary it regulates it

NRTFT, but next parents evening, try to speak to the other parents of children in the ARP and get their names and addresses to set up a WhatsApp group for parents. Then arrange Mums Nights Out, get togethers, etc.

@Newsenmum if you Google "local offer" and "your local authority name" you may find some groups.

I haven't ruled them out. GCSEs are marching towards us so I may have to consider it in year 9. Thank you though. I'd like to get her off melatonin first as she's been on that 6 years nearly.

Bless is melatonin non stop without breaks?

letting you know it’s worth looking into non stimulants , they’re regulating behaviour/sleep

its tough isn’t it ? Massive admiration for dealing with this without meds, I don’t know if Id been able to 😫

Ds has been on melatonin for over 2 years. It doesn't work very well. Was up from 1.30am until around 7am this morning. Im exhausted. Hes almost 6 and I keep thinking how do I keep doing this? What if it doesn't improve and its the same in another 10 years? I dont know that I can keep working. Im scared for a lot of things in the future. What if I die etc. Sorry feeling crap today

Is it slow release melatonin ?

melatonin needs breaks sadly for it to work, builds tolerance otherwise

6 is still going lots can change … is he more ASD or ADHD , does he have diagnosis? Sorry if you said before

sending hugs ❤️

Thank you. The slow release didnt work. Hes just gone on circadin which we thought was working but apparently not...

Hes asd, non verbal, high needs. At almost 6 id hoped he would have developed speech by now. Im still hopeful of course, but its so hard. Hes in a specialist school, diagnosed with ehcp. Suspected adhd too but too young to diagnose on my area.

If it’s any help whatsoever, our 9 year old has just started developing some level of normal sleep.

Up until around 6 months ago he was a very early waker, sleeping through to 3:30am on a good night. He was more routinely up between 11 and 12, and then stayed up for 5/6 hours before having a small nap. His worst nights he’d just get up at midnight and stay up.

All of that was with melatonin.

He now generally settles without melatonin, giving us “ammunition” to get him back off if he does wake up - when he does wake it’s now not for very long. He can now sleep through to 5ish without waking, though not consistently yet.

We think it’s hormonal, he’s started showing early signs of puberty - which does present its own challenges, but it’s had a real impact on his energy levels and ability to rest. He needs more rest now than before, and seems better at accepting that and chilling out a bit, where he did used to just “go” 24/7.

I know it’s a way off for you, but 3 years ago we were as sleep exasperated as you sound, and as he’s gotten older it has began to get better. Fingers crossed there’s hope for you too!

I thought circadin was slow release but might have got it wrong .. either way yes it’s not very strong. When my kid is on stimulants he’s supposed to take Circadin but I always supplement with Pukka sleep tea which does the magic

my kid spoke late (3.5ish) we thought he’d never speak but now he’s the opposite 😣. Admittedly we did a lot of work on him (followed biomed approach ) with massive improvements , and I don’t recommend anyone to do this but all I’m saying, don’t give up hope things do turn around ❤️

if you’re up for it , you could run a blood test on him to see if there is any certain vitamin he’s lacking , check thyroid, allergies etc … obviously just a thought perhaps worth having a look 🤷🏻‍♀️

@SleeplessInWherever thanks for sharing your positive story and im so glad youre getting rest now finally. Its the hardest part isn't it. Is your ds verbal? Just curious.

@BrentfordForever I asked for blood tests a while ago when he kept getting viral infections etc a lot and I was refused. What good do you think it might do? Please can you tell me about the biomed approach?

In certain cases “something” might be impacting/blocking a normal development. Common culprits are low vitamin D, hypothyroidism, low or too high B12 and a big one : allergies

with biomed there are many investigations you can do, and I absolutely don’t suggest you do (it’s US approach, MN very against these kind of things, so won’t go much into detail 😉 ) but it’d be interesting to see if something is blocking him , which perhaps is not that difficult to address anyway . My kid for example would never get fever (although he was getting infections ) which was really odd plus his TSH(thyroid) was higher than average

Id personally would push for it , you have nothing to lose, it ll give you good insights and perhaps something to work on x

@Helplessandheartbroke No, not fully. He’s cognitively around 3 years old, and had no verbal communication at all until he was around 6.

He has developed some language, particularly around his wants and needs, for example he knows how to ask for food (fud) and a drink (wahah), and he can tell you he’s tired (by asking for a “baff), but we’re a long way off conversational or fully communicative.

Just catching up on the thread with a diet coke for me now the PDA disaster from this morning is finalllllly settling.

They don't diagnose ADHD in under 8s in the area I'm from either, right PITA but the system is so back logged anyway it is just another part of dc1s profile so it's on a backburner

@Newsenmum I can't find your original pp just saw it quoted above just wanted to say yeahhh I can't relate to much of the rest of MN, anything from NT life I just can't apply to my life (posts about meal planning, food budgets for example, holidays etc) no shade to NT families at all, it's just a different life so try not to pile extra judgement on yourself 💐

Thanks for all your replies today. Its so nice to speak to people who get it. @BrentfordForever will do some research. @SleeplessInWherever my ds can communicate his needs too now which has been helpful (apart from when I can't give him what he wants of course) @Tiramisuforone sorry not sure what PDA is?