Sashybo - Back Again

dawnybabes

the diagnostic tests that the private will do should be NICE complaint, if they are you shouldn’t have a problem getting it accepted. The issue is if they think ADHD and you go down the medication route most GPs will not take a shared care agreement so you’d either have to go on a waiting list (about 2 years here - that’s after the 4 year wait to get the ‘label’) or you pay privately for the drugs whilst waiting.

sashybo

Hi all, again been ages since I was here! Finally having a meeting with school next week to discuss both DD & DS and get their support for ASD referrals. If DS is already on a waiting list that would be great but I don't think the referral went ahead 3 years ago as he settled down in class and we didn't chase it due to DD being stressful.

Recently had parents night and DD's teacher said she is quiet, works hard and is kind to the other children in the class, she hasn't seen any of the behaviours we see at home. We weren't surprised by this as we're pretty sure there's heavy masking going on at school. That meeting felt a bit pointless, she's also only had DD in her class for a month so doesn't really know her well either. Although we did learn that DD is apparently behind with her maths as well as her handwriting, we knew about the writing as it is terrible and she is really not interested and rushes through any homework. We have brought it up previously with school but still no huge improvement. Her reading is also not great which I was surprised by as she is not far behind her brother and he is a few years behind in his reading so we assumed she was doing well!

DS's teacher is a new teacher and very young, it was her first parent's night and she was quite nervous, bless her. She said DS is trying hard and will ask for help but he is still not where he should be for reading and maths which we knew. He has improved massively in the last year but is probably only around a reading age of 7 and is 9. I brought up his anxiety as it has been getting really bad recently, especially around time - we have had several crying fits when leaving for school as he is so worried about being late. This is usually when we leave a minute or two later than normal! Nothing we say helps and he just panics so much that he cries.

DD has been her usual self, one minute a delight and the next an absolute menace. The hitting has been escalating at home and she has bruised me really badly a few times, one bruise has taken well over a week to start fading.

We went to another private clinic for an autism pre-assessment and they agreed she shows quite a few autistic traits. This time we took DD with us and the therapist saw the stimming behaviours and agreed it was likely DD was masking as the school have never seen that behaviour.

We have started the assessment process and she did an activities based assessment last week with a speech and development therapist. She has a cognitive assessment with a clinical psychologist in the next few weeks then DH & I have an appointment with the therapist to talk through all the background history. We also had to fill in very big forms about her behaviours and whether she did things often/sometimes/never etc. That took the full hour when she was doing her first assessment!

Once all that has been completed they will then decide if she meets the criteria for autism and we get a report and a feedback appointment. The clinic have been very pleasant to deal with and we've had a completely different experience compared to the first place we went to.

However it's very expensive and cost just under £3K all in. 😮 Surprisingly the outlaws actually gave us half the money towards the assessment. We've still had to take out a 0% cash transfer on my CC but at least it's a lot less than it could have been. I think we'll probably need to get DS assessed at some point as well but when I brought it up with him he got very defensive and said no because his brain isn't crazy. 😔

sashybo

In slightly happier news, we have decided to adopt another cat as we're worried about Old cat departing and leaving Big cat on his own. Old cat is 18 now so he realistically can't have too many years left 😭although I'm hoping he will make it into his 20s. He's still fairly fit and very noisy but sometimes you just can't tell with cats as they are so good at hiding pain/illness.

The new cat is being adopted from abroad as we have had problems adopting locally as we want to keep the cats indoors and a lot of rescues don't like that. Quite a few are also fussy about rehoming cats with kids under 10 as well.

Our new boy is 3 and we're hoping to get him over next month, we have sorted out his flight fee and just need to pay the adoption fee. He was rescued after living on the street but appears to be a BSH and wasn't feral, the rescue think he was a pet who was dumped. 🙁It is costing a fair amount of money but is still cheaper than buying a pedigree kitten.

alipops1986

Sashyboo,

Great to hear from you, and well done for the progress regarding a potential autism diagnosis - not easy or cheap but will pay off in the longer term ensuring your DD gets the support she needs.

Once you have the report back, and assuming she is diagnosed with Autism please do then fill out the Disability Living Allowance (DLA) forms. I didn't for a while as felt we could manage financially without, but actually realised the additional money each month would support my son - we've used it for him to have some additional speech & language therapy we paid for privately, focused on understanding communication, amongst other areas. However, there is a long wait for them to process your paperwork but it's then backdated. We waited 6 months for it to be processed, but then received a back payment of over £1500 from the date they received the paperwork and now we receive £428 a month to support his needs. I wasn't keen initially to apply, but it's been so helpful to us to support our son - it would definitely help with paying off the money for the diagnosis as well. You could apply now, but I think having the report which you'd send a copy of with the paperwork would support your claim, and there is a section for information from the school as well. There is a lot of support online regarding how to fill out the DLA paperwork - just give it a google when the time comes.

Alipops x

Sun_Addict

I’m glad things are progressing with the ASD diagnosis. Hopefully you’ll eventually get some answers. Took 3 years for my DGS to finally get his.

I hear you with the rescues being too picky. I think they shoot themselves in the foot sometimes. One of my friends recently adopted two cats from abroad after being rejected by UK rescues because she works full time. As long as the cat is loved and looked after what does it matter 🤷‍♀️

sashybo

Thanks Alipops, I will definitely look into it if we get an autism diagnosis - although at this point if it isn't autism I don't know what is going on with DD!

Hi SA, yes hoping we'll have some answers soon, DD must be as exhausted as us at this point! Yes the rescues seem to be over the top sometimes, I understand they have to be careful when rehoming and have the cats best interests in mind but imagine rejecting a potential adoptee because they work full time. 😦 I don't understand it, we would happily take a cat from a local place but they're not interested!

My twin nieces just had their 18th birthday, I feel really old typing that, their big brother is 25 - in my head they're all about 6!!! My sister was stressed out her head as she was throwing them a party. It was a lovely place but we could only stay for 2 hours as we had the kids with us and DH had been working early shifts all week, was falling asleep and had to get up again for work in the morning. DD was also freaking out at the loud music and had a falling out with another little boy and hit him.

sashybo

Another long break without posting, have been lurking around but just not up to it.

Both kids continue to be difficult, DS is very anxious and is getting very controlling over small things like what they both watch on tv, he absolutely kicks off if DD gets to choose and he doesn't like it. DD has been nothing short of a nightmare most of the time, very shouty and aggressive. I'm exhausted.

DD has been ill the last few days and is a nightmare patient, she just screams, cries and moans and expects me to make her better. She starts hitting herself in the face when she can't breathe properly due to the cold and is in general an absolute pain. She started with a headache (I also had one for several days, wonder why) then a high temp and was sick twice in one day. She's still got the high temp but hasn't been sick for a couple of days now, still not eating properly though and saying her stomach hurts.

DS is adamant that he is fine although he has had a bit of a temp and was exhausted yesterday, very pale and tearful. He was also hitting himself in the face but that was because he was angry at not getting his own way about something. I forget what because it's been one fight after another all week with both of them.

DD had her appointment with the clinical psychologist, we were in the waiting room so no idea what was going on and she didn't want to tell us anything! Have an appointment next week for just DH & I to go over her history and behaviours etc.

The meeting with school was good, they were very open to DD possibly being autistic despite them not seeing any behaviours but are a bit stumped on how to support her as she doesn't act out for them. They did say that they don't generally see any autistic behaviours with girls until ages 9/10 etc due to heavy masking slipping with hormones etc. Both teachers I spoke to have autistic sons so were very understanding.

They were also supportive about DS, as I suspected he wasn't previously referred but they will do that now - not that it will do much good as the waiting list is at least 5 years.

They also said they're pretty sure DS is dyslexic which is something they have never said until now. It does make sense as his spelling is terrible and usually phonetic when he has to guess how something is spelled. Most of his reading seems to be him memorising words and then recognising them rather than being able to work them out. He already has support at school but they do want to up it and DS is refusing so they are trying to work out how to help him and get him to accept the help! He is very stubborn and doesn't want to be "different".

I been talking to both kids about autism generally and got a book called "All cats are on the autism spectrum" that my friend recommended and that seems to have helped them understand a bit more. DS is coming round to the fact that not all autistic people are the same as the one non verbal autistic child he knows but are in fact all different.

sashybo

DD also turned 7 last week and was unsurprisingly hard work on the day - one of her presents got launched away as she said she hated it. No filter there. Luckily it was a gift from us and not someone else but we did speak to her and remind her to just say thank you even if she doesn't like a present. 😒 There was a meltdown within 20 mins of getting up - she just seems to get overwhelmed at birthdays and Christmas.

She had also begged and pleaded to go to a particular zoo for her birthday, we were unsure as both kids tend to kick off on any sort of outing, especially when it's somewhere unfamiliar. We thought it might be okay as they both love animals - it was not okay. Within an hour both kids were moaning saying they were cold and wanted to go home, DD hit and kicked me then ran away screaming that she hated me, I'm the worst mum ever, I'm fat and ugly and she hated the zoo etc (several times) whilst DS just whined and DH was raging and embarrassed.

Had to bargain with DD to at least let us see the last part of the zoo but we were on our way back to the car within 90 mins.

We had another outing for lunch a couple of days ago - DS was almost crying from anxiety within the first 10 mins as he felt pressured by DH to choose something to eat. Had to try and calm him down before he lost it in the busy pub.

I told DH to chill out and take it easy on DS, so then he was moaning that he always gets the blame and he's obviously a !!!!!! dad as does everything wrong. Sometimes it's not what he says to the kids but the way he says it.

Would quite like to run away atm really.

DancingInTheRain

Oh Sashy sorry to hear you're having such a rough time at the moment, my heart goes out to you as it really does sound a lot for you all ♥️

Your posts show just how amazing you are, parenting can make you forget that at times, especially when our little ones need extra support. Sending love & strength 💪

beanielou

Jeez. That’s tough. I would want to run away too. Keep plodding xx