Aspergers/Autism/Sensory Integration Chatter #4

:hug: meow x

Brendan has regular hearing tests as he has poor hearing and ear health. We need to have two audiologists do the test, one sits outside the soundproof booth and does the actual testing the other is in the booth with us and distracts him and tries to keep his attention. The first 4ish (can't remember exactly, we've had too many!) tests were inconclusive, but they picked up fluid in the ears and the poor health, they also picked up that the drum itself wasn't responding well.

Early Intervention is definitely worth it. Without the last 3 years of speech and OT I'm certain Brendan would be a lot worse than he is now, especially his SPD.

I have been meaning to do this for a while. Just so I could lay it out. I feel like I am posting to no one though.. I know I am not and you ladies are just as awesome.. but damn I wish Lu was here to read it and tell me what she saw. :crying:

Snow Princess - Meet Princess

i'm hopping in here, as a maybe. Two people have suggested to me that bilby might have Sensory processing disorder or something like that. I don't know, but think i should have that idea checked out by a Occupational Therapist, to find out either way.

Many things, that i put down to quirks, apparently are signs of Sensory processing disorder. i have been looking at these things individually, not putting together the pattern.

i have no clue if it's even worth chasing up, but my inner voice says, what if it IS, and there are some answers to be had. so i'd better chase it up.

So i either might be a regular (if she DOES have it), or an embarrassed gatecrasher (if she DOENS"T have it), in which case, i will do a quick retreat and leave you all in peace.

cheers

It was strange, finding this thread, and seeing the posts by Lulu. God i wish she was still on this earth.

HA - :hug: Can't ever hold a candle to our Lulu, she's irreplaceable - but we will be here. It won't ever be the same, but it will be something. :hug:

Gigi - I read this thread and the previous one through last night and felt like she was still in the room with us. :hug:

If Bilby does have SPD (and remembering some of your posts when she was much littler she seemed to show some traits which, now I know more about it, could have been early indicators - I remember how hard it was to settle her as a baby and that she'd scream for hours - could have been a sensory thing? Euan was, and still is a bloody nightmare to settle and it's probably mostly sensory, we just haven't figured out exactly what yet), then early identification is going to help. No question about it. And if she's not, then it won't hurt either. So getting her checked out would be win/win. Ask for an OT to do a sensory profile. :hug: matey. Could also be that she has mild sensory issues and the recent changes in your lives have brought them to the fore. A friend of mine thinks her daughter may have mild SPD but it only ever manifests when there's big things going on - she noticed it most when they moved house. Euan's OT put it really well - we all have sensory issues to some degree, just that for the vast majority of people the threshold is much higher so it is generally manageable, but stress lowers the threshold.

I hope that you do end up as a (never be embarrassed) gate-crasher, but if not, you know we'll welcome you with open arms.

its not going to be the same in here any more is it :(

I commented to someone yesterday that having a spectrum kid second time round is easier...man :doh: what was i thinking!!!! We went to the water park last night and Tank screamed for an hour when we got home....I HATE the screaming!!!

Meow - im glad that our stories have been able to help you :hug: I should go back in there and post somemore

Gigi - best advice I was ever given, listen to your inner mama...if she's tellign you soemthing is wrong, then something is wrong.

Child is screaming again...god give me strength

:( I would have loved to spend more time chatting to Lulu in this thread. I'm not a very prominent member on the forum and I generally best get to know people in chatter threads I have joined so I'm sad not to have had more time chatting with her and receiving her guidance along with the rest of you. I'm really, really sad for the old-timers in this thread who have lost a dear friend. :hug: for you all.

I cancelled the hearing test and decided we can do that after the move when a pediatician to talk to about the results. Not much point with an inconclusive result otherwise. Good to hear how the test is done- thanks earlykids. Worried about the move now suse! I think my son has been worse since our baby was born so I'm sure an international move will really help:( Mostly not having his bed or his normal food is going to behard. He's an uber-fussy eater so it's stressing me a bit. People say it'll help him not be fussy but they don't understand. He just goes hungry and then goes mental due to low blood sugar if he doesn't get the foods he eats.

Good luck with the assessment Gigi. My son ticks more boxes for SPD than anything else so I think we'll be looking into that too. I guess even if that's not it then surely seeing a professional and getting some strategies can help still.

The screaming sounds really hard Maz. :( Hope today is calm!

Just got our speech pathologist assessment. It's amazing how much a simple sentence like "E's expressive communication is delayed for his age" can hurt :(

Argh all of those do hurt yes. I remember the first time I heard "abnormal".

Me, well I've gotta leave DD to get to Melbourne today. I find it so hard to cope in doing social stories with her to explain that I have to go and grieve Lucy. When I tried once she put her fingers in her ears and said no.

I explained that Cyclone's mum died of a broken heart. She understands that, but she doesn't understand how she is going to marry Cyclone without Lucy :( I cried but she really wants me to explain the logistics of it now.... I can't....

Oh Christy :hug: :( Now I'm crying too.

meow - you have a lot going on at the moment, don't you? :hug: DS was just diagnosed three weeks before DD was born, so I know how you feel in that respect. All of a sudden I worried how he was going to take it from a completely different perspective, and it was both better and worse than I expected. I guess that in terms of the move, all you can do is plan to make the transition as smooth as possible, know that there's likely to be meltdowns no matter what you do, get through them as best you can then come in here for tea (or vodka) and sympathy. The food issue would be stressful. Can you take a supply of some of his favourite foods with you? Or find out whether there are equivalents where you are going to be living (although spectrum kids are great at picking 'fakes', so this might not work too well)? I get that with the fussiness thing, so many people think that the 'eat it or don't eat anything' strategy works, but not with spectrum kids, they'll just not eat anything. Fortunately our DS is good with most food, his quirks tend to be texture rather than taste or colour related so I can work around that pretty easily, but when he does go through his rejection phases I nearly tear my hair out, because he's skin and bone.

And oh boy yes, the reports and the language they use can be a real kick in the teeth. And because they are technically worded there's nothing there to soften the blow, is there? :hug:

Whilst I'm in here, does anyone else have gut issues with their kids? I think I'm going to have to get E's gut checked out, or look into food intolerances, because his poo is just terrible. He generally poos 3-6 times a day, ranging from normal in texture, to what I describe as butt-vomit. Which is half digested, acidic smelling yeurk. Usually we get one of these a day. We've cut as much acidic food from his diet (tomatoes, kiwi fruit, grapes, he doesn't eat citrus, can't think of anything else), he does eat dairy but mostly yoghurt, he doesn't like milk to drink. I'm starting to worry that we're going to have to go down the GFCF path, poor kid won't have anything left to eat. But he doesn't seem to react specifically to either gluten or casein. It's really got me stumped, and I know that because it's so random, it's not going to be a cut and dried answer. Sometimes it's linked to behaviour, but not always. Dunno?

And Christy, more :hug: I wish... I wish this wasn't happening.

Suse we have heaps of food issues. I went to a allergist and yep Matilda is allergic to one of the proteins in cows milk. She's not out grown that. She's also intolerant to salicalytes. I found getting a good probiotic has helped her. I have to add it to her chocolate rice milk, but whatever... it gets it in her. She didn't react to all three different sorts of tests to gluten. She did show that she has an intolerance to oats though.... I have a list of her intolerances and milk. I feel she's grown out of her oat intolerance, but I don't overdo it just in case.

Okay, I said I was going earlier and I mean it, my bus leaves in 20 minutes...

Thanks, Suse. Lu was so incredibly helpful. I initially made a separate post because I had no dx and really no idea. She told me to come over here because it sounded spectrum and I could bounce it off the lovely ladies here. Sadly that thread vanished into the 2 week hole in the interwebz.

Its probably a bad time now anyway. Will see how we go with the paed.

Take care.

We have some gut issues here too. I second Christy. A good probiotic.

Christy- hugs!

Is anyone stressing about returning to school/Childcare will go? I am going to do some social stories tomorrow to start to prepare. He is saying he doesn't want to go back to kindy.

Eta-meow- I once had a report sent to me in the post. No discussing first, and it said J had a global developmental delay. I cried for days. I also gave the centre an earful about sensitivity to parents. I basically have no relationship with them now.

Apologies if I miss anyone, lots of replies here!

HA, I'm following your blog and had a skim read, will read it properly tomorrow (hopefully) :hug:

Gigi, you are more than welcome here x :hug: Definitely get onto the OT and do a Sensory Profile, Brendan (DS1) has SPD, which was diagnosed at 23 months old.

meow, :hug: I hope the move goes smoother than anticipated.

We have food issues here, always have had... we had food aversions and not tolerating solids when he was younger now we have intolerances. Currently dairy-free and most likely will go wheat-free too (we've already cut out heaps of wheat anyway) Both my boys have problems with dairy :( gut issues, poo issues and eczema flares up too. Because both my kids have weight gain issues, they are both on a multi vitamin and are both watched closely by a dietician and the CHN etc.

Reports I'm used to. We were told before Brendan was born that he would be delayed and he was at risk of a whole range of different things from being born so early. But they still aren't any easier to read. Being told on the phone or to your face is hard, but seeing it on paper is just so confirming. Brendan's ASD diagnosis report was especially hard, seeing the thing they wrote down about Brendan, even though I had said them and witnessed them, was really hard.

:grouphug::grouphug::grouphug:

Thanks guys - will look into probiotics for gut issues. Also will book a doctor's appointment and see if I can get a stool sample analysed. Might have some clues. One small advantage of him not yet being TT'd, at least it's not difficult getting a sample :D

lilima - yep, I'm a bit apprehensive. DS has been brilliant these last few weeks, lovely, funny, charming, affectionate and I've really felt we've got each other lately. When he started EI last year we had some full-on meltdowns for a long time - even though he was learning so much he was possibly responding to the challenge of it, I'm hoping that the change doesn't prompt it again this time but am expecting some difficulty. But he's seemed so happy these last few weeks, with less anxiety especially.

HA - I went to have a look at your blog and the link didn't seem to work. Maybe it's just me being dopey? Anyway, I'll try again next time I'm on.

Off to bed now, :hug: to all.

suse we had stool samples with Matilda as prior to the allergy testing she used to do 5-6 poos a day. I can happily say she's not lactose intolerant and did have worms.

That's what Euan's like - a literal poo machine. Worms - now that's a possibility...

Anyway, what are you doing right now answering my questions about poo my lovely?

I'm in Cai's loungeroom, in bed on my mac with Cai on hers next to me drinking tequila sunrises.... the way it should be :D

its uniquetoo.blogspot.com without all the extra stuff, lol.

tbh, the only real issue we have with princess' gut is that its apparently forever empty. Child just keeps eating.

I added DH as an admin to there too so he will be adding stuff. Its been a long time coming, but I have been in denial for a long - loooooooooooong - time. But really, with 2 teenagers, it was about time I dropped the charade that my girls were going to be diva roackstar surgeons and my sons would be walking around in camos and combat boots. I think in a way DH and I were feeding that line of tripe to each other too and so it took both of us to have that *ding* moment.

Now we have, its just time to get that help so she can be a diva rockstar surgeon if she so chooses to be.