Sayitso
VIP Member
We have what we call a soft opening, at the moment that means my daughter goes in and does her physio first rather than jumping straight in to schoolwork, it’s working so far.
- Notice
Molly Polly
Active member
It's heartbreaking isn't it? I'm sending you a virtual hug x. Have you managed to pin point from your son/daughter what's happening at school to make him/her not wanting to go?
When my eldest son had problems and he eventually told me a particular boy was calling him names and mocking him (my son has autism, ADHD and tourettes and goes to a mainstream school and has a 1 to 1 support) we had a meeting with the senco, 1 to 1 and head of year. We discussed what this boy was doing (I was so angry and upset that my son was being subjected to this) and I was really lucky that this boy was moved to another class. If it carried on then we wanted a meeting with the head and the boys parents. I was worried that this boy would continue to mock him in around the school but he kept his distance. It's incredibly hard and stressful but if you do know what's causing your child's distress then definitely speak to the school to find a solution. Take care xxx
Sorry me again.....we are currently in a hotel room as we still don't have electricity (6 days now!) caused by the storm. It's so stressful as my son has got a particular routine anyway does you son/daughter have an EHCP? X
Last edited:
LittleMy
VIP Member
Sending hugs your way. It sounds like you’ve all been through the mill. I’m so sorry for the loss of your son’s father.
That’s such a tough decision to have to make, but it’s like you say; you have to think of everyone on the scene and what’s best for all of you as a whole. I can only imagine how difficult it must be and the guilt you feel, that so often comes with being a parent of any child particularly those with additional support needs, must be intense.
That’s strange that the “expert” had to Google ADHD. Doesn’t sound like an expert to me. Have they said why they recommend your son stop his medication? It sounds like he really needs it so I can see why you’re both against that idea.
My sons are still very young so it’s hard to tell where they will be at or how they will cope as they get older, but my mind very often wanders there and it worries me that one day they might become too strong for us to manage by ourselves and their meltdowns become too much to cope with. You’re a good mum, you’re trying to do right by all of your children and it’s not easy. Take care of yourself, you’re doing the best you can.
TwooTwooTwitTwitTwoo
VIP Member
There seems to have been a switch around over the years in terms of willingness to diagnose Adhd. My eldest was diagnosed with Adhd before he was diagnosed with autism (this was in 2005 ish). Whereas last year they would only diagnose my middle one with autism to start off with, despite the questionnaires from both home and school clearly indicating he had adhd. They wanted to reassess him a year later. We didn't have to wait that long in the end because things reached crisis point and the school contacted his consultant, making it clear that they would have to expel him if he wasn't diagnosed and medicated. I'm not really sure why things have changed so much. Thresholds? Targets? Who knows but it's such a pain to navigate. Especially when the referral and diagnosis process is such a wait as it is.
Linda La Hughes
VIP Member
My [almost] 3 has her first portage meeting tomorrow 
She doesn’t talk and even though they won’t elaborate i think they are assessing her for autism
She doesn’t talk and even though they won’t elaborate i think they are assessing her for autismI'm amazed that the school arent pushing for an ehcp as they would get extra funding which would be great for them in terms of paying for the TA. Definitely look at applying yourselves. I dont have advice for that as school applied for my sons.
Thankfully we have a new teacher who I was very nervous about but hes amazing. Hes previously worked in a special needs school so he knows what hes doing, I know when hes not been around based on my child's mood!
Molly Polly
Active member
How frustrating this has been going on for 6 years. I would still speak the senco at secondary school as they may be able to match a like minded child to sit next to your daughter in class. My youngest son has mild learning difficulties and is starting secondary school in Sept so my worries will start all over again!Thanks for your replyshe has no diagnosis of anything. Academically she is fine and behaviour great as she is practically mute so nobody at school notices her anyway. Various people have been in to observe for example an educational psychologist and emotional wellbeing. They say they will return again (which they do) but they just say leave their notes for me and school and then come back later. This has been going on for 6 years.
School said to trust them that she will be fine as the secondary school we've chosen are particularly good at settling in year 7s by giving colour coded timetables and lining the corridors with older pupils etc (not that my daughter would ever speak to them)!
I'm so glad to hear your son is doing well
I know it doesn't stop you worrying but your daughter just might surprise you. When she's a bit settled in school an after school club may be a good idea? Our school will be doing a school summer transition for a week in July (cancelled last year due to covid) so they will do fun activities on school grounds and meet other new year 7 pupils. Do you know if your school will be doing something like this? They may be able to partner your daughter up with a like minded child? Good luck for Sept. X
We aren't there yet with secondary (currently arranging to view our local ones) so I really sympathise with you. My son has always hated school and often refuses to go. He literally has to be dragged in by his head teacher. No advice I'm afraid as we still haven't found a solution.
TwooTwooTwitTwitTwoo
VIP Member
That's what we went for originally too with the middle one. We'd had vague suspicions about autism when he was younger but had put it out of our minds really. Then he started having a major problem with how clothes felt amongst other things (I've lost count of the amount of shoes that have been abandoned forever after one wear because they weren't 'right'). His difficulties really ramped up over the next two years though, so we were pretty much certain he would get an autism diagnosis after the ADOS. Even then though, I expected it to be toward the HFA/Aspie end of things so I was shocked when the results came back saying he'd need a really high level of support. The ADOS report was a real eye opener too.
I was also genuinely surprised by the initial suggestion of ADHD because I presumed the presentation of that would be like my eldest. It's really quite different though. I felt guilty for ages that I hadn't picked up on it earlier because it's just so obvious. I think the majority of my household have ADHD tendencies though so it just sort of blended in and got lost.
I don't know much about dyspraxia. My eldest was assessed for it because he had (and still has) issues with things like buttons and he can't tie laces but they said he didn't meet the criteria.
Molly Polly
Active member
Ah thank you. We've been told that the electric may be on this Friday! A fallen tree has pulled the cables down in the village. It very hard work with my son not being in his own space etc. It's just so hard isn't it? I'm so pleased the school have put measures in place and if it helps your son I hope it continues after Christmas.
What a shame Sendiass couldn't attend. I know they had an emergency but your meeting is just as important. Another representative should have attended instead. I would definitely get them on board with regards to an EHCP because your son would always have the back up he needs. We found without one the school changed their mind on so many different aspects of support aids and there was nothing we could do but with the plan we had the back up.
My son takes medikinet for his ADHD but is unable to swallow any tablets so I open the capsule and sprinkle on yogurt and his nightime melatonin I crush the pill and again sprinkle on yogurt. The medication has been a godsend as I've not had a full night's sleep for 15 years! (Nor has he). I expect you have already tried crushing the pills? I don't give him the medikinet at weekends or on school holidays to give his body a break from it and the difference in him is astonishing. People just don't understand how hard and helpless you feel as a mum.
I'll be honest, it took us 6 years to get an EHCP with primary school support and we took the council to court who faught tooth and nail not to give my son any support. But we won the court case and the council still tried to give him less support hours than he deserved and that was another battle. We had to take that route because the school could only support my son for only a few hours a week and he clearly needed so much more.
Four years ago we left South East London and moved up North. The difference in the services from my experience is vastly different. In London we got absolutely no support at all from CAMHS, I know they are under an extreme amount of pressure due the vast amount of people that live there. I needed emergency support for my son and we wasn't seen for 2 1/2 years!! The service we get now from CAHMS is fantastic and I can get an appointment quickly. I would strongly push for an EHCP as it's opened more support from the school.
So sorry for the waffle, hope it makes sense? I've just stopped and started a few times as my son has just had a huge meltdown (in a hotel room and not his own space it's very difficult for him) and woke my other 2 kids up and trying to calm him down.
Hope your week goes ok for you and your son. Will check in again when we get back into our house. Take care xxx and remember you are doing a fantastic job fighting for your son! Night xxx
How did you get a diagnosis for hyper mobility? I only ask as our paediatrician mentioned it during his assessment but that's the last it was mentioned. Also, anyone whose child have dyslexia - any pointers? I dont want to sound like I'm trying to label my child with any old thing but his writing/spelling etc is poor
Thankyou! I worry anyway. I thought it would go better than it did as I work as a 1-1 for a child with autism so know what to do in terms of helping with school work, but obviously it's different when its your own child. I'm just disappointed with the schools approach. The senco just tells me to do all these parenting courses and I find it quite insulting and have voiced this! X
Oh no I'm not sure
we have limited meal choices here too, but in all honestly hes not too bad. He likes fish fingers and fish (battered birds eye), loves broccoli, pasta, spag bol, chicken korma. If we have roast he will have broccoli, carrots, cauliflower and the meat. He actually doesnt have a bad range of foods he will eat but hes extremely reluctant to try new things.
Molly Polly
Active member
My heart goes out to you and your family. The amount of worry and stress you are under is just awful. Sorry you are going through this, it is just relentless.
In my experience having an EHCP for my son gave us more of a voice for my sons needs to be met at school. I think going through the process of applying for your son is such a positive step and will benefit him so much.
I think it's the right decision to look for another school so your sons needs are met. Research schools when you get a chance and visit them in the new year and start the ball rolling, don't wait as it can take time. Hopefully the break over Christmas will reduce his anxiety.
If you don't mind me asking how old is your son?
My son is now 15, had the stress of primary schools (3 different ones) got the current stress of secondary school and I'll have stress next year for college.
Take care x
TwooTwooTwitTwitTwoo
VIP Member
Sorry to hear you're stuck in a hotel. Hope you're able to go home soon!
It's a combination of things that are stressing him out. Moving around the school, greater demands on him, sensory issues causing problems etc. He finds it so hard to explain what's bothering him though.
We've had a meeting with the school today and they are putting various things in place for him; a teaching assistant in most lessons, time out passes, access to lunchtime club inside amongst other things. All on a trial run until Christmas.
He refused to go in again today so hoping for a better day tomorrow. He's sky high with anxiety though, meaning his hyperactivity is through the roof. I wish he'd take his ADHD medication but he just can't tolerate the sensory aspect of it. It's so hard to see him struggling so much. I'm hoping that the Christmas holiday acts as a reset for him and reduce his anxiety levels before he goes back to school in Jan.
School are being really resistant with regard to an EHCP. They've said they will only apply for one if he needs a change of placement. The whole EHCP system has changed so much since I went through it with my eldest, back when they were still called Statements. We keep being told over and over that we won't get one so there's no point applying because the school can put things in place to help him without one.
We were meant to have a representative from Sendiass with us today but they had an emergency so couldn’t make it. They seem more positive about an EHCP so we are going to get some advice from them about doing a parental application for one.
Thank you for your advice, I really appreciate it x
Rodneytrotter
Chatty Member
Ah really well - thank you for asking
. She has settled in well to the school life and the senco has shown her someone she can go to if she needs help but can't talk to anyone. The only thing is that she sits alone at break and lunch as she doesnt have friends yet. She is desperate for friends. Children have tried to befriend her but they don't get much back from her so they probably assume she doesn't like them.
How is your son getting on? Xx
TwooTwooTwitTwitTwoo
VIP Member
Thank you. You have my sympathies also. It's so hard isn't it.
TwooTwooTwitTwitTwoo
VIP Member
You're not waffling! I totally understand and can't thank you enough for taking time during a really stressful period in your life to offer kindness and support to a stranger on the internet!
We have tried two types of medication. Equasym XL which we have tried sprinkling in a variety of things; milkshake, yogurt, squash, chocolate spread etc and recently it was swapped to a liquid form of Strattera. He managed four days before complete refusal and we tried giving it straight with sour sweet chaser, mixing it in milkshake, mango juice and orange juice. He just can't cope. He does manage to take Slenyto occasionally which helps. Like you, we take medication breaks during school holidays. We did with the eldest too. Although at one point, when he would take it, we did get him to have it when we went away on holiday because it made life more bearable for everyone (I hope that doesn't come across as too awful but he has siblings who are really struggling to cope with his behaviour).
Something has changed somewhere and I can only think it's anxiety due to Secondary transition because for the bits of year six that he was at school (Covid not school refusal) he took his medication without issue. The anxiety ramps up his sensory difficulties.
We are going to ask for a referral for CBT from CAHMS which I think could be helpful, especially as he has OCD traits as well (they won't diagnose it as a stand alone condition until he's older).
I'm away for work next week and I've realised that I feel guilty. I started a new career earlier in the year, full time, as oppose to working from home part time like I was previously and I feel like I'm failing him by not being around more like I was for the eldest. I need to work though. Not just financially but for my own well being. I also really love my job. I was unwell for a number of years and waited a long time to be able to be physically well enough to work full time.
Sorry, I'm waffling now! x
Molly Polly
Active member
@Rodneytrotter , how is your daughter getting on at secondary school?
TwooTwooTwitTwitTwoo
VIP Member
I've recently been recommended this book. It arrived today and genuinely after only reading the blurb on the back and the first few pages I think it's the best book I've ever found. I feel hope that I may be able to learn more ways to help my children (and I already recognise bits of myself).
It's written by someone who has all the right qualifications but crucially she also had ADHD.
Sorry, I think the picture might be a bit big bit I'm not sure how to sort it.
It's a bit pricey at £20 ish but I think it'll probably be worth it. I also really appreciate the title!
It's written by someone who has all the right qualifications but crucially she also had ADHD.
Sorry, I think the picture might be a bit big bit I'm not sure how to sort it.
It's a bit pricey at £20 ish but I think it'll probably be worth it. I also really appreciate the title!