Sashybo - Back Again

alipops1986

My son also has ASC diagnosis. He's now in Year 7, but as he moved through Primary School we started to have concerns. He really struggled with playing nicely with others, and had a 'strong moral compass' as the school used to say. We had some concerns at home as he'd get very tearful, but the description of him at school was like a different child - refusing to work, trying to 'police' other children and at times lashing out - usually from misunderstanding social situations/social cues.

When he got into Year 5, he was taught by the SENCO but still had struggles so we decided then to get him assessed, the school were a bit on the fence to be honest and felt if we went via NHS he probably wouldn't be deemed 'in need' enough to be assessed. So, we went private because the NHS waitlist was going to be so long, and with secondary school on the horizon we felt we needed some answers/understanding before that transition. We had an initial free 30 min conversation with a clinical psychologist, explained our concerns and what school had been reporting - Dr agreed to move forward with an assessment - I think from the start to getting the assessment done was about 4 months. The most helpful part was we got a 17 page document all about our son - from what he'd said during the assessment (some of which was quite sad, about how he felt he was annoying to others but didn't know how not to be & how at times the 'red mist' comes over him and he just reacts but afterwards is so upset as wishes he could have reacted differently), our feedback from literally when he was born up to the day of the assessment, the outcomes of the assessment our son completed and then the most important part - x2 pages of how he could best be supported, at home and at school with the diagnosis.

Whilst, I'm not a big fan of labels, it really has ensured he has since been supported effectively - by us as parents but also by school. We have been able to advocate for him, and to understand his perspective/responses better, and know better what information he needs in order to prepare himself for situations. We were nervous about the transition to secondary school, but it's been really positive for him, and I do put this down to him having a diagnosis. He doesn't have an EHCP, as unlikely to meet that level of need as they're particular in our local authority, but having the diagnosis and a pupil plan has made a real difference in school. Also, it's enabled him to understand himself more - which has been really valuable, as he had such low confidence & self-esteem from being in 'trouble' at school, and then we'd put in consequences at home, which just made things worse we realised after the assessment. Academically, he is working at the right level of his age.

This was all in 2024, and it cost us £1750 but really was worth it - definitely worth exploring, particularly if you can find a clinician offering 30 min free consultation as a starting point.

dawnybabes

check to see if your area has a CCI or Autism outreach team - if you want to message me the area I can look for you, these can come into school, normally without huge waiting lists and generally they can pick up on the tiny things that schools always miss. (I work in this area 😃) and I’m also surrounded by peeps, son, niece, best friend etc etc

sashybo

Thanks for all the input, it's been really helpful. I have been researching clinics and have booked a free 15 mins consultation for tomorrow afternoon to see if they think booking a pre-assessment would be worthwhile. They screen for both autism and ADHD and looks like there are pre-assessment appointments available end of July/start of August.

We haven't spoken to the school so far but I'm going to try and speak to them this week, I will probably send an email in the first place just so I remember everything I want to say. I know it's a busy time of year for schools so I'm not sure if we will be able to get a meeting with them but hopefully can get something sorted before the summer holidays.

I'm worried as they haven't seen any issues or this behaviour with DD that they might dismiss our concerns but they are generally a nice supportive school so hopefully not. They had previously thought that DS might be autistic and although they seem to no longer have any concern about this he has had a lot of extra support and continues to have this as his reading age is quite far behind. I do suspect he has autism as well but he is coping very well at present and has improved massively in the last 2 years at school. I do think we will need to look into diagnosis for him at some point but DD's behaviour is so much more extreme and affects the whole family every day.

sashybo

DS is 9 today and was very excited when he woke up, he was very happy with his presents but not so happy at having to go to school!

DD of course kicked off because she wanted presents, my mum had given us a colouring set for her which calmed her down but she then kicked off again when gave her a switch game as she has decided she hates playing games on the switch (that she asked for and has hardly touched, we thought a new game might encourage her to play with it). Then she started throwing her school uniform everywhere saying she hates her summer dress for school (she wore it quite happily last week) and generally having a screaming tantrum for about 15 minutes. She was also hard work at bedtime last night and wouldn't leave DS's room to go to bed, I had to bodily carry her into her room as she kept going limp and refusing to move, of course with more screaming and kicking and I want my dad. As soon as dad goes in it's I want my mum and more screaming and crying.

Poor DS was very stressed out and not happy with her for ruining his birthday morning and then started crying because he was worried that we were going to be late for school. We ended up taking the car because he was so worried although we would have made it walking. He has a real mania/worry about being late for school even though we never have been.

So a good start to the day. 🙄

DancingInTheRain

Sorry to hear that, hope the day gets better ((hugs)).

Happy birthday to DS, pleased he was happy with his presents.

Willowtree222

Happy birthday to DS.

My story reads pretty much the same as Alipops. From the report to the timing and how it has made a difference to the level of emotional support she gets. We wouldn't get an EHCP either.

Hope the 15 minutes is beneficial for you.

Sorry things are so tough.

beanielou

Happy birthday to DS.
Hope your day improves 🤗

jwil

Happy birthday to DS. Hoping the day got better.

Sun_Addict

Happy 9th birthday to DS 🎂 Hope the day ends better than it started.

sashybo

Thanks all, the day did get better as both kids were much happier after school. We went to swimming lessons and DD has just moved up a level so she's now in the big pool. She was delighted and said it was amazing, they are both quite natural swimmers and enjoy it which is good as I'm not a strong swimmer and am still quite scared of deep water.

DS wanted a McD's for his birthday dinner (how expensive is that now 😵) and then we had his birthday cake. He asked me to make a lemon cheesecake so did that with a ginger biscuit base and topped it with dolly mixture, milk bottle sweets, mini marshmallows and melted white chocolate drizzled over it all. He was very pleased and gave it 10 out of 10. DD had to then give it 1000 out of 1000. 😂

Watched them both at sports day at school today and they both seemed happy. DD hasn't had a meltdown today (yet) which is good.

We had our 15 minute talk with the clinic and have decided to go ahead with a pre-assessment to see if there is any need for a full one. We have booked an appointment for the start of August which DD doesn't need to attend due to her age. Hopefully this will give us some clarity, I still feel like maybe I'm overreacting and it's just temper tantrums but it doesn't feel like that. Maybe I'm still hoping it's just something she'll "grow out of", we've been using the same excuse to ourselves and everyone who has witnessed one of her meltdowns since she was 3. No one believes what she's like in a meltdown until they see it as she's so well behaved everywhere except with us.