Some good news at last, well sort of :-)

[dev9aug]

You might remember that I posted about ds2 about a month ago. Well, ds2 had his follow up paed appointment today and the good news is that the paed reckons that he does not have Microcaphely. Thank god for that.

She confirmed the CP but he has recently started to try to crawl and take a few steps with support so I am sure that we will lose this dx if we keep up the Physio.

Dev I am so pleased that his sleep is improving. Deirdre changed our lives where DS4's sleep was concerned.

So pleased to hear about improvements in so many areas with both Dcs. I am in awe of the amount of work you and your partner must be putting in to achieve it all.

Reading charts wrong and giving parents a worrying diagnosis on that basis - have they never heard of double checking?

Thanks Silver, I would love to see those videos but only if you can have any time spare to find them and it is not too much trouble. we think ds1 is going through a developmental surge and we want to make sure we do everything possible to support that.
and thanks for the info re hop scotch, we saw suzi at starjumpz instead and were very impressed. we have been taking him to soft play since then and he surprises me every time with what he is capable of physically.

star & zzzzz I totally get where you are coming from re our dc's expectations. Thankfully I had the support and knowledge from here to allow me to try new things and Ds1 has surprised me every time. I am still amazed at HCP reactions when I tell them the amount of things we do with him, such as eating out, soft play, going on holidays etc. They are amazed because they don't think it is possible with children with ASD.

Thanks Nohaudin, I am embarrassed now. Really it is no great achievement, we are fortunate that I was able to give up work and effectively live on savings for two years to allow us to do what we are doing right now. we have a great team of people working with us. Granted we will be bankrupt when we finish, but hopefully by the end of it, we would have made a positive impact on their life now to reap the benefits later. In my eyes, the real achievement is by people who are doing it alone and have done with little or no support in the face of opposition.

sally, when we first went, she did the treatment with ds1 and when we were leaving, she noticed that my dw was holding her wrist in pain, it was hurting quite badly at the time. she took her wrist and spent 10 seconds doing something with it and that was it, pain gone. dw was amazed and she is normally quite cynical, tell it like it is kind of person.

Ds1 cannot communicate whether it worked or not, but that was enough to convince us that it will definitely be useful and it has been proven to be the case. so for that little find.

We had the now you see it now you don't microcephaly dx too. DS was born 3 weeks premature and underweight but age adjusted hc close to 9th centile - said at the time to be borderline normal range. At the time, I only heard what I wanted to hear, normal range and not borderline. The 4 months measurement showed a surprising jump up to 50th centile ( I now think this measurement was likely to have been wrong). The next two measurements before 12 months were back on the 9th centile. The issue really went away (after 20 months we were on the autism track) but at the age of 4 years, the paed said 'oh he has a small head' before measuring it and then after a not very successful attempt to get the measuring tape round his head, said that the hc was on the 2nd centile . I did not find out that a diagnosis of microcephaly had been made until I got the letter. I was not very happy that such a diagnosis had been made on the basis of one not very good attempt at measuring his head so I phoned to query it and she agreed she would re measure at the next appointment. When she did re measure, it was back on the 9th centile on the 0-5 age range (he was five by then) and on the 5-12 years chart well above the 9th centile and so the diagnosis of microcephaly was removed. So all in all a bit confusing and although he is not technically micro, his hc is at lower end of normal so I do feel there is a link to the brain development

Stereotypes about ASD are very annoying. We have actually had praise from strangers about how well behaved ds1 is but if I tell some professionals this, I get the feeling they are a bit miffed that he is not conforming to their expectations.

Well maybe not miffed but they seem to have an idea that almost nothing is possible when a child is autistic and are not really sure what to think if you tell them something different.

zzzzz so true. It was only when we realised that it was us who had to do the work and got stuck in, we really started to see progress in ds1.

willowcat so worrying for you. It is a shame that we had to go through this because of a simple mistake. yy to dc's not conforming to their expectations.

I guess it just doesn't fit into what they were taught in their half day optional ASD training.

It is scary to think that in a one day moondog workshop we learnt more than pretty much any professional working with/for our children, and it wasn't even about autism.

But what is more scary is that these professionals are hailed as experts whilst parental knowledge and expertise is ignored and denied.

Following on from Star's post, do you think Moondog might be up for doing another workshop - I feel the need for another injection of to-the-point, totally useful stuff (as well of course as the chance to meet up with Dev in a car park again and make Star teary with my effusive thanks for all the inspiration she's given on this board