Primary school auties thread 9 - spring / summer 2022.

[danni0509]

Thread 9.

Links to previous threads below.

For the parents / carers of children with additional needs, most of us have asd / adhd children in primary school, but anybody is welcome to join us to chat x

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

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

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

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

Thread 5
www.mumsnet.com/Talk/special_needs/3953023-Primary-school-auties-summer-and-beyond-thread-5?pg=1

Thread 6
www.mumsnet.com/Talk/special_needs/4166833-Primary-school-auties-spring-2021-and-beyond-thread-6?pg=1

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

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

When did you start training him carrie?

It’s been a painful 3 years here, first day of Easter holidays 2019 is when we took the daytime nappy away, I posted on here all about it, ds was 5.

I can’t believe it’s been that long already, he is more reliable now but it’s taken such a long struggle to get here. He of course goes backwards too, which I find so frustrating, no accidents for months then regresses loads for no obvious reasons!

Im on a good run with him at the minute, so I’m firmly touching wood as I say this, I do need to get the Pooh on the toilet sorted out tho! as he’s not had one on the toilet for years, nappy only! And night times is another thing for me to keep in the back of my mind with regards to getting him out of nappies overnight, but Pooh first! And Rome wasn’t built in a day as I frequently tell myself 🤣

I’m just grateful the wee side is going well.

Carrie I feel the toileting pain. It is day 3 of reduced screen time for DS to see if that helps as that is when nearly all of DS's accidents occur. He only had 1.5 screen hours yesterday (which is a lot less than our norm on a non-school day) within that time he still had 2 accidents - agghhh!

Open hope DS is well enough for (and willing to go to) school tomorrow.

Danni so upsetting re the trip. Sounds like progress in other areas and good to hear his intelligence being recognised.

Re covid jab I am in 2 minds. DS was poorly when he had covid but not worryingly so. I worry a bit about new variants developing which might affect him more severely. I think that on balance I probably will get him jabbed. Sadly he's v used to medical procedures - 6 operations, MRI, EEG, ECG, kidney and bladder scans, x-rays and numerous blood tests and he is normally a trooper.

At nursery DD's key worker stopped me to ask if we could have a meeting re DD's behaviour (hitting other children without any warning).

I wrote a post yesterday and lost it. I can't remember what I wrote.

dimples I hope toileting is going better today.

Ds went into school this morning but was pretty much a waste of time as he wouldn't go in the classroom and didn't even want to play outside which he usually does. I have asked if the school can refer us to CAMHS as we've made such little progress in three months now.

He's been in a strange mood today. I was going to take him to a NT place but he wasn't interested. Possibly due to his illness at the weekend and not feeling 100% still but he was fine yesterday.

CAMHS have just rung me, the adhd nurse passed everything to the remote psychiatrist and after reviewing ds notes and comments from the meeting she’s stopped methylphenidate straight away. She said it’s made his anxiety worse and he needs to come off it immediately.

I’ve got to take ds to CAMHS Friday after school to get weighed and they are prescribing atomoxetine to start.

in 6 weeks they’ll review him with me and then phone school for their comments and if his anxiety hasn’t reduced then they’ll add fluoxetine that day (with no need to have completed the phycotherapy first)

Atomoxetine is a non stimulant one.

I’m crossing my fingers this one works for ds!

Open I hope CAMHS can give you some advice / therapy. (They do all sorts, they gave me a leaflet at ds first appointment with the programmes they use)

I know they get a lot of stick, but I can’t say anything bad about them really, other than the psychiatrists leaving recently (but it’s not affected us) and the initial waiting list, but since we been under them they have been helpful.

Dimples do you have any suspicions about any future diagnosis’ for dd?

Ignore the fluoxetine it won’t be that now, it’s something else in 6 weeks, to go alongside atomoxetine, can’t think of the name! But it’s another anti anxiety one.

danni that sounds really positive, I hope that this works better for him.

God knows how long the waiting lists will be. We will most likely end up seeing someone privately. the problem is what and who exactly.

Danni that sounds v promising - fingers crossed the change in meds will help.

Open at the moment I get letters every month from CAMHS apologising for the delay and giving emergency contact details. However one of my friends whose son is waiting ADHD assessment with the same team phoned them after he tried to strangle her as she was driving and they offered her nothing.

Danni re diagnosis DS still just has 'global developmental delay' some of his medical probs have been resolved/partially resolved through surgery - the glue ear and undescended testes. So main medical issues now are growth issues and epilepsy although hormone issues are likely as surgeon is not expecting DS to start puberty naturally and also is most likely infertile. In the past the paediatrician has said that she is sure a genetic explanation will be discoverable at some point. However, my current theory is possibly fetal valproate syndrome (having read the leaflet which came with DS's medication). DS's birth mother has epilepsy but I have no details of her diagnosis or meds. Children with the syndrome often have glue ear, undescended testes, ASD, ADHD and learning disabilities. He does not have the facial characteristics though. The urology surgeon definitely indicated that exposure during pregnancy might have caused testes problem - but no real evidence of drug or alcohol use. Also as DS had repeated moves from primary carer he has suffered developmental trauma and it is hard to unpick that and attachment issues from ASD/ADHD traits. Going back to what Open was saying before about who to consult I feel that there is not much of a holistic approach - the therapists through post-adoption support that sees everything through a trauma/attachment lens (eg when I was suspecting epilepsy they were saying disassociation) and then the CAMHS team is all autism.

Wow that's a lot to unpack dimples. I can also see how different specialists would want to champion their own specialism. It must be very frustrating for you though.

Open I hope you managed to get a Camhs appointment for ds.

Danni it's great that you are getting more support!

We're just pootling along here. Forgot that Monday is a bank holiday! As if they haven't had enough time off recently!

Sorry dimples I meant your dd! I wondered with the hitting incidents and other things you mentioned previously with her, if you suspected dd had any upcoming diagnosis’ on the cards? I hope your meeting at nursery goes ok. Sounds like your ds is a complicated little guy too, why do they always have to have a variety of needs?! rather than just one to crack away at!

I never know what behaviour is caused by what with my ds with so much going on! It’s like 5 for the price of 1, which in a supermarket I would be buzzing at, but not real life, they can shove their Bogofs!

liv tell me about it, not teaching bashing but Jesus Christ, get to work! 🤣 if I was education secretary kids would be in school every day apart from Xmas day!!!!!

I just realised that DS has an inset day on the Monday after the May half term hols too.

Sorry Danni with DD completely open-minded at the moment. She reminds my sister and I a lot of my niece (who was later diagnosed ASD). On the other hand have her social skills been really hindered by the pandemic and are a lot of her behaviours learnt from her big brother? Her key worker described her as fiesty and also said I must be exhausted (she used to look after DS too). She was quite late with a lot of gross motor skills. I guess time will tell

Dimples I can’t remember if you’ve previously mentioned so forgive me if you have, are ds and dd biologically related? Like adopted from same birth mother?

Im not sure if I mentioned on here before but my nephew is deffo autistic, he’s just turned 1 but he’s like my ds as a baby,. Does the same weird hand and foot movements, noises, identical quirks ds did as a baby, nephew just spins wheels on toy cars all day long on another planet, it’s so strange it’s like having ds as a baby again. My sister has loads of videos of ds as a baby and she sends me them and then one of her ds doing the same things. He’s really delayed motor wise too, only just about wobbly sitting, not crawling, doesn’t weight bare so no way near walking, he had some skills and has regressed a few months ago and honestly he’s like a newborn baby just a massive version of , he has loads of problems feeding and is tube fed full time now bless him, doesn’t sleep at all just screams day and night, he has been referred for a brain scan / portage are starting work with him next week and he’s on the waiting list for developmental peads. My sister has to keep taking him down to Sheffield children’s hospital, a couple of professionals have said autism without her saying so, then she mentions my ds and they have wrote it down.

I find it so fascinating genetics, my dad is definitely aspergers, clear Mile, my grandad which is his dad is, I think the same for me, then ds and now my nephew.

Im no dr but I’m an expert in diagnosing autism after ds 🤣

That’s interesting danni, does your sister think she’s autistic? How is she doing with it all? She knows how tough things have been for you.

I definitely see traits in my family and dh’s too.

I’m looking forward to the the long weekend, always nice to have dh around during the day.

Danni DS and DD are not biologically related. Two completely different birth families with 2 completely different sets of problems. DS's birth parents both have learning disabilities and BM is diagnosed with ADHD and epilepsy. DD's birth family have no diagnoses - she is meant to be my 'straight forward' child!

With my blood relatives it is weird as all 3 of my sister's children are diagnosed ASD (the twins are half siblings to her eldest). Her eldest has a genetic deletion but that comes from his Dad. My Mum is convinced that my brother's middle child is also autistic. There is no one else who has a diagnosis but on my Dad's side of the family there are a few - my grandfather, aunt and cousins diagnosed as bi-polar. My Mum was just musing the other day that maybe that cousin is autistic rather than BPD.

How worrying for your sister Danni. I think regressing is one of the most stressful things that can happen.

Open she’s completely normal, so is my brother and other sister, no indications of autism in any of them. This is why I find it so strange, skipped them, but got me (I’m sure!) ds (diagnosed so 100% sure) and my nephew (I’m almost certain)

Shes not coping at all, my mum has him 1 night a week, my other sister helps but her babies due shortly, I’m limited in what I can offer due to ds, her partner helps but he works, I think it’s his high pitched screaming that’s sending her over the edge, I’ve never heard a a baby scream like it. He’s in hospital next week for a 4 night stay for a sleep study, as they think he has sleep apnea too. She asked them if she could go home and leave him with the nurses so she could get some sleep, they said yes, so she’s over the moon! She’s going in the day but leaving at bedtime.

Genetics are so weird, we have autism all over my side of the family and also dh's family (although none of them are diagnosed). My favourite story my mum told me was my great-great grandfather who was a chess master and concert level pianist. One day his wife told him the music annoyed her and he never played piano again!

Honestly ds had no chance of being nt and I'm quite surprised dd is.

Ds regressed and it was the weirdest thing, because dd was a newborn we didn't pick it up for ages. just realised one day that neither dh or I could remember when ds last spoke. His behaviour also got very extreme, including smashing his head through a window.

I hope your sister gets some respite danni.

Hopefully dd is just copying ds's behaviour dimples. When dd was younger we ended up with the salt team because her language was delayed she also had atypical behaviour like toe walking/spinning but she grew out of a lot of it.

Thanks Liv, it could well be copying...I guess time will tell, nursery is on it and have interventions in place to help with social skills. Her speech is v good and she is meeting targets other than social and emotional (only the most important things in life!). She seems v bright and she is v loving and affectionate (when not hitting, biting and kicking).

I got a call from our most local special school earlier where I have been on the waiting list to look around. They had a cancellation so I can go tomorrow. Fingers crossed - it is under a mile away and goes up to 19 so it would make things a lot simpler if it is the right place for him.

Bloody hell my ‘new format’ mn has been not working and I’ve been stuck in March (story of my life.) I keep thinking ‘hasnt this happened before’ ?? Then realise yep,… I’m still in March…

anyway good luck Dimples, I hope you feel the positivity we did. And try not to worry about DD. It could just be terrible 2s.

Not a thing in our family on either side re any development issues. Makes me very ignorant really and just generally very depressed about DS. I had a lot of stress when I was pregnant very early on with him and DH swears it was that. I’m a big believer in cause and effect but find the shrug of a paediatrician with the fleeting words ‘oh it’s all neurological’ quite hard to accept.

dimples I hope the special school visit was good, do let us know.

carrie I see traits having read more about autism but it doesn't really help me with ds and he's definitely not a mini-me. Most of the more helpful information I have got from reading books or articles and from other parents.

Ds had a mostly positive morning at school and stayed for some time after a shaky start, refusing to go into the classroom for nearly half an hour. keeping my fingers crossed for tomorrow.

School visit went pretty well. The school had a lovely calm feel and it was clear how individualised the approach was. I could see DS fitting in. He would however, be one of the most able pupils which makes me think that I would struggle to get a place there and is it the right one. The main other options are all autism schools and DS is still waiting for assessment. The head was saying in recent years they had more intake of severe/profound learning disabilities.

Open glad school was ok today.

Great about the school visit dimples. Do the LA know about the move to special school? Doesn't sound like there's much option if all the others need a diagnosis.

Liv I think that they would just say that he can manage in mainstream. We don't have any school refusal problems and his behaviour at school is not disruptive. But I want him to do more than 'manage' and there is a lot of masking - they don't have to deal with the explosive behaviour after school. He is also being removed more and more from the classroom as he cannot access the main curriculum. LA Ed Psych assessed him on Tuesday but there's been no feedback so far.
Hopefully ASD assessment will be this Summer.
I have been feeling emotional since the tour thinking about DS's future.

dimples it sounds like you have good reason to move him, I hope you can find somewhere suitable. Are there some other schools you can look at. IMO when a child is spending a lot of time outside the classroom, it’s inclusion in name only and not necessarily in the child’s best interest. Children should be taught by teachers not TA’s, especially as they get older. Just my opinion though.