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.

[messmonster]

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

[StarlightMcKenzie]

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.

[dev9aug]

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.

[willowthecat]

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.

[willowthecat]

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.

[willowthecat]

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

[dev9aug]

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.

[dev9aug]

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.

[NoHaudinMaWheest]

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?

[SallyBear]

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

[StarlightMcKenzie]

It's amazing to read your posts Dev, as it makes me look back to how ds was and see how much we have acheieved. He is already doing what I never dreamed was possible (or at least allowed to believe by bonkers professionals).

I also need your posts to remind me of the effort it took to get here, as his rate of progress was so incredible that I have to make sure I don't forget WHY. It didn't just happen, and I can't just sit back now just because ds has come so far.

It's ridiculous to imagine when ds is in the midst of a frought argument with his sister as I open a bottle of wine in the bathroom, - that I was ever willing to give my life for such verbal reasoning skills. - Oh DS still has a LOT of problems, don't get me wrong, but keep enthusiastic and determined for them and our children can go further than you might have been led to believe.

[silverfrog]

it would take a while, but I could see if I could look out videos of her speech progression if you want?

I found some old film of her when she was about 3 the other day - I could hardly understand a word of it, when I know for a fact (and there is evidence of it in the film) that I understood everythign she said at the time. the only comprehensible bit was when she sang 'bbbeeeeeee bbeeeee sssseeeeeeeee raaaaaadioooooo tooooooo' (no prizes for guessing what I listen to in the car!) with massive over enunciation and exaggerated facial gesture.

she has (completely off her own bat) long used any reflective surface to help her - when she was little it used to be to practise the shapes her mouth had to make for certain sounds - she would study us intently when we were talking and then practise moving her mouth that way (grossly over exaggerated at first, then refined down to fine motor movements). she can find a relection anywhere - a window, the laptop screen, actual mirrors, her cutlery at mealtimes etc. it can be a real hindrance, as these days she practises conversations rather than speech sounds - leading to her talking/singing to herself all the time - it's eaiser than talking to people who may say the wrong thing in reply!

she now practises mini conversations, using appropriate facial gestures - downturned mouth for sad, raised eyebrows for surprise etc.

dd1's speech really came on after she went gf/cf - well, her communicative intent did - see above for her speech refinement!

she is 8 now, and I would say she has been easily understood by others (clarity of speech wise) for a couple of years now, probably since she was 5 or so.

[dev9aug]

That is really encouraging to hear Silver really encouraging. Thank you for sharing that. what you say fits DS1 describes ds1 to the tee.

I am very interested in what you say about the use of mirror to reproduce sounds etc, I am seeing Risca soloman for an assessment for DS1 to see if talk tools can be beneficial and one of the things she mentioned was the use of a mirror.
We have also started DS1 on a Gluten free diet on Monday so fingers crossed that should make some difference as well.

[dev9aug]

I don't think I will ever trust a HCP ever again, especially GP's. some of them are worse than chocolate teapots, at least a chocolate teapot looks good.

Hazey, yay to DS signing, this is brilliant, we love surprises in our house. I still remember the look on my wifes face when he first copied a sign from a video unprompted, priceless.

sally, sleep is much better than before. he is still waking up but is going back to sleep quicker. We are going tomorrow for our third visit. We have tomorrow with Kate and then final one with Deidre before this treatment is finished and she is going to recommend someone in London for the follow ups.

[silverfrog]

great news, dev!

dd1 started out singing - lots of babble as a toddler, then the odd (incomprehensible to anyone else) word.

then singing. lots of it. mostly identified by the tune at first, but then she refined and refined her word production through lots of practise (and the aid of a mirror/relfective surface - something she still does today for new words or facial experessions). and then expanded her song repertoire. and rinse and repeat.

yesterday, we had a full 5 minute conversation, with questions and new information volunteered from both sides - something I never thought would happen back when our only communication was singin alternate lines of her favourite song of the moment!

sounds like fantastic prgress with both ds's - well done you and Mrs dev.

[StarlightMcKenzie]

Yay!!! PMed you Dev!

[hazeyjane]

I think reading charts wrong, must be quite common, dd1 was referred when she was 18 months, because she was below any centile for height, according to our (then) gp, she had bloods taken, he talked about growth hormones etc, we waited for ages for an appointment to come through, only to be told when we finally saw a paed, that the measurements were wrong and that she was actually 2nd centile for height (still short, but i am 4'11" and, well lets just say that dh is no giant!).

Whilst brushing ds's hair this morning (he loves having his hairbrushed), he signed 'more', he has never signed anything spontaneously - it is so lovely when they surprise you isn't it.

[SallyBear]

Dev how is DS1's sleep now? Any small improvements??

Glad to hear that the microcephaly dx was shelved. You really didn't want that.

[coff33pot]

We'll the first pead obviously had her glasses on upside down :) I wonder how many other ppl she has worried before they trained her to read the charts!

It's no wonder we tend to trust our own instincts more as time goes on x

[schobe]

at reading the charts wrong. Great news re both DS2 and DS1!

[fanjoforthemammaries7850]

Great news!

[dev9aug]

Thanks zzzzz, it is certainly a relief because I don't mind things I can deal with such as CP, fortunately at the moment it looks mild, it's the bloody unknown which I hate so loosing that dx is a massive relief.

Thanks Hazey, it is so funny watching him sing, he has been babbling for over a year and a half now so it was so great to finally have something recognisable come out of his mouth. I think zzzzz had it spot on about working on their confidence and the rest will follow. Once he has realised that he got a couple of words right, then he is trying very hard himself to come out with more.

[dev9aug]

madwoman as I understood Microcaphely means small head, but it also means small brain which could have serious life limiting consequences.
Anyhow, would you believe it the last paed who saw him gave him the dx because she had read the charts wrong, ffs it's not like we have enough to worry about, oh no. I came out of that appointment with a shopping list of dx.