Hi all,
Thank you so much for posting, I really appreciate it! We're trying not to tell many people because we don't want anyone to say anything to DS, so I feel quite isolated, & scared because I'm taking advice from GP, school etc & I'm worried they may not be giving me the right advice, however well intentioned they are.
I'm writing this in haste as they've just gone to the park. I'm very grateful for everyone's advice & support, & hope I don't seem rude by not agreeing with everything!! You've really helped me think about things. I know this will be long, so sorry about that too!
DH doesn't really believe in the milder side of ASD & has refused to believe DS could be on the spectrum until fairly recently. He's finally open to the possibility that DS may have issues that he needs help with, but I can't discuss it with him, so I just tell him what the 'specialists' say & what I'm planning to do. DH thinks I'm incredibly dramatic about DS, it's very frustrating. It also makes me question myself a lot - am I being demanding of the Dr etc. My mum is very opinionated, so I have to do the research first & then discuss with her, although she's very, very supportive.
School completely freaked out when I told them about the strangling incident, the head called us in urgently to discuss it (DS has a sickness bug so we had to wait until after the w/e), but conversely it took her 3 or 4 days & 2 reminders to send me the school counsellor's number/ed psyche. I feel that school (it's a private one) are meeting DS's needs better than any other school could, except possibly a school that specialises in Aspergers/emotional/behavioural issues, although it's not perfectThere are 5 kids in DS' class, they are very involved & very caring with all of their children & their families, there's a lot of outdoor play, DS's attitude, behaviour & learning have dramatically improved since he started there, we had a 2hr long meeting with the head & SENCO, they have offered lots of advice (get a dog, don't have play dates longer than 2hrs, only speak English at home...) etc. They aren't happy that we don't want to have the Aspergers screening & then get all the support that will come along with it straight away, but I think they will accept waiting to see what the EP's advice will be. There is another boy in DS's class who is waiting for an assessment (DS's teacher said they're very similar), but unfortunately his parents are thinking about moving him to a school closer to their home as they will need to start taking their DD to school as well in Sept (she does have Special Needs). I really hope they don't as I think it's really good for DS to spend a lot of time with someone similar to him. DS is behaving badly in 3 classes, & I'm worried school will say they can't keep him because of this. We feel that if school think DS has Aspergers they can work with him as if he has, they don't need a confirmed diagnosis immediately.
At Reception I tried to get him into a local state school that had a really good special needs dept because I felt he had issues, but they were full (I appealed their decision too). I paid for his first private school with my credit card (& with my mum's help) because I don't earn much & DH felt he'd be fine in any state school he was offered. When he was diagnosed with possible dyslexia DH agreed to pay for his current school, but was talking about putting him in a state school over Autumn (he can afford private, but he doesn't think it's morally right, neither do I, but I felt there was no option). Now I would be very surprised if DH said he wanted to take him out.
School's ed psych called a couple of days ago. I had a long chat with her. We have a agreed that she will do a short assessment on DS. 1st session with me to discuss the issues, 2nd & 3rd with DS, 4th with me, DH & my mum, & 5th with the family, head teacher & teacher. This will be to make sure we are meeting his needs at home & school until Sept (when I'm planning for him to have the Asperger's Screening). Unfortunately she can't see him until the end of April, so we will have to wait. I feel very positive about her. She will tell us if there's anything she thinks we need to do as soon as she sees DS, she won't wait until the assessment is completed. She agrees about his gut impacting his behaviour, so hopefully she'll persuade school that waiting is best.
I don't want DS to be screened for Aspergers until his gut health is better as I feel he will behave different when his gut health is better & I know the Asperger's label with stay with him throughout school so I want to be sure his gut doesn't have any involvement in the results, but I want to be sure we're meeting his needs. I know this isn't everyone's school of thought, but I believe DS's vaccinations (combined with his genetic disposition & a couple of other factors) caused his severe silent reflux, Aspergers traits, poor gut health etc.
I'm a bit all over the place re CAMHs. GP said I should go with them rather than privately because private will be hugely expensive & If I go privately CAMHs won't offer much because they will feel we can pay to go privately, Ed psyche said CAMs won't be able to offer much in terms of counselling because of budgets & that they will want to do the Asperger's Screening straight away to best to put off, & my mum thinks CAMHs are a complete nightmare & that we could end up with SS being involved (SS became involved with our family yrs ago because of a member outside of our immediate family & I found them very ignorant, I definitely don't want to have anything further to do with them). I have decided that I will see how it goes with the EP first.
We had a rubbish paed gastroenterologist for DS until recently. He did a PH study (found no reflux, but I've realised from researching that sometimes kids can go 24hrs without having an episode), colonoscopy & endoscopy. He found the ulcers, but offered no advice re the bleeding & prolapsed. He put DS on antacids for 6wks & said come back in 6mths. We've emailed & called about 8 times since Dec & he hasn't got back to us once. DH finally agreed that we could take DS back to Dr Shah @ GOSH who specialises in allergies. We saw him in the Autumn (before we realised DS had ulcers) & said he thought the bleeding & prolapse were caused by allergies & said he should go on a soy, dairy gluten & egg free diet & put us in touch with a paed dietician. We couldn't keep seeing him (it's complicated to explain), but have now been referred back to him & DS will see the dietician in a couple of wks.
I'm afraid it's not possible to know when he's really not safe as it could happen at any time. We have to just not let him ever be alone. I thought about putting his mattress in our bedroom, but he might realise he'll get more attention because of the behaviours & our bedroom's on the top floor so I'd need to go to bed at the same time as him. I've removed everything that he could harm himself with & will keep on nagging DH to
Moosemama, are you tried taking out dairy, egg & soy (apparently they tend to be the main culprits)? I did a Yorke Test on DS when he was 18 mths, but our naturopath says that & blood tests in general aren't able to flag food issues unless they're allergies (DS was allergic to egg, he would vomit, he stopped vomiting so I assumed he had grown out of the allergy, foolish me).
Thanks so much for your help, advice & support!!!!