Aspergers/Autism/Sensory Integration Chatter #4

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.

Christy - *Suse gets a little smile on her face at the thought, and raises glass to you and Cai*. And sends these :hug: Big squishy hugs. Love you guys.

:

---

seeing the thing they wrote down about Brendan, even though I had said them and witnessed them, was really hard.

---

That's SO true. I read this bit and felt gutted... but I was right there and go through this everyday. I think it was the realising that other people noticed. Makes it real.

He crawled behind his mother and then sat and hit his head against the wall making distressed sounds. He used gestures and sounds to ask his mother for his dummy.

*sigh*

I have been researching foods we can get in the states and I think we'll be okay. Theyhave corn thins, peanut butter and apples so that's 95% of his diet anyway. Only thing they don't have are squashed sultana biscuits and nimbin cheese (no, he wont eat any other type of cheese!)... but now we're wondering if we might try and cut the biscuits anyway to see how he fares gluten free.

We have awful poos here too- seems to be a trend?! It's always been that way and after a bout of gastro where dairy caused major poo issues we cut dairy for ages and it didn't improve the poos to normal so we figured dairy wasn't the issue and slowly reintroduced it. But I was reading about regressive autism and it said that may be an autoimmune condition similar to coeliac. I'm looking forward to starting some allergy and stool sample testing though- we need to work this out. And a good probiotic huh? Have to work out how to give it to him... he's random with drinking milk and there's nothing else to hide it in. He used to eat yoghurt (well, he used to eat LOTS of things) but he keeps rejecting more and more foods.

I'm nervous about the fact that he keeps getting worse- when will it stop? I cant stop watching this video of him at 10 months.
http://www.youtube.com/watch?v=hjbelAbYiKw
He's asking where the dog is- never asks anything now. He is still very smiley though :) Today was a bad start. Took him to FDC and he melted down. First time ever his carer saw him hitting his head. We ended up coming home again. So now he's home and the naps I was hoping to have with the baby who was up all night are less likely. It's going to be a TV day.

I've started following your blog Honey Aspen- it's a great start. Thanks for sharing! I think I need to do the same.

Thinking of you Christy :hug:

They have squished sultana biscuits hun, they are just called something else... they don't have sultanas, they have raisins.

meow, where are you going to be? I grew up in the US and there are heaps of things/organisations/shops that can help. I am from California, and was just there 6 weeks ago. Shops: The shops there are enormous. If you think the section for baked beans and spaghetti tins is big anywhere in australia, you haven't seen anything yet. A whole isle... its crazy stuff.

Runny poos.... Like I said Matilda had 6 loose poos a day until she went off the milk and went onto probiotics. It took her 2-3 weeks. She is now a once a day girl, and if she does more it generally means worms or she's had a milk product. She was given a slice of cake once... the next day she did 6 poos and I couldn't figure out what happened until my MIL told me it happened on her watch by accident. She caught M with the last bite in her mouth. Now MIL doesn't keep milk based products at her house except her milk.... We've recently trialled milk in cakes again and found that she is okay with a little bit here or there, but if she has say a biscuit or muffin two to three days in a row... bums away...

I'm here and as long as I don't think too much I'm okay.... but I'm allowed to think here and grieve without worrying about M. Thats okay I think.

I have to be quick as I'm having a bad day today...

DS loves kinder, i know he has a great time when he goes there.. but every day when we get there I have a problem with getting him inside.. Getting out the car is normally fine (occassionally he asks for mummy day's, but normally I have a dr's appointment so I say we won't be doing anything fun anyway), and we walk together through the grounds, he is normally fine, but then just outside the kinder building he baulks, and likes to do this hiding thing.. I think he thinks it is funny.. he does it at my mum's also, likes to ring the doorbell and then run away and hide... I don't want to drag him inside, but it gets annoying every day, and I like the try and settle him inside and see that he has started an activity not a meltdown, and he starts prep in 2 weeks, and I'm supposed to drop him at the gate, they try to say the parents shouldn't come up to the classroom with them.

Any ideas?

I'm feeling so lost and overwhelmed at the moment. So much to do and no time or energy to do it. Haven't even applied for my FACHSIA funding yet, let alone the billion calls I have to make to therapists who don't return my phone calls or do what they say they will.

I had to come in to post today.
I have thought alot about LULU this past day or two for sure her advice and humour was always welcome.

Well I am not sure how I am going to get through today I am seriously losing it. I cannot take the screaming and hitting and yelling it is driving me insane. I can't get the 2 yr old to understand to leave his older brother alone, how do I get my aspy to understand that his brother is 2 . How do I get them to get along without the constant screaming fighting and yelling. I just want it to stop.

Brendan was a 6+ times a day too, no more dairy and he's 1-2 times a day now and a thicker consistency too (LOL about discussing poo) Must get a new jar of probiotics too, I just buy the Inner-Health Plus. Is that what you guys use?

OH MY.... ASD meltdowns I can deal with.... I know why they are there and mostly what I can do to help, but Tristan is just grrrrrr.... he starts a tantrum and then sets Brendan off! All day today, Tristan just woke in a bad mood and he's been in Brendan's face and of course he hates that so he's lashing out and then having a meltdown because he has no space. gah...

Have been thinking about making a space in the house where Brendan can go to be alone when he needs to. Like a personal cubby house. Not sure how I'll keep Tristan out though :shakehead:

We did our FaHCSIA funding thing yesterday with the Autism Advisor. Just waiting on the letter. Only problem is just about all the providers are in Perth... only 2 come to here and it's not very regular. Am hoping to be approved for DSC funding as that I can use here with Brendan's current therapists. Also have claimed for Carers Allowance, just need the OT or Speechie to fill it in for me so I can get it back to them. Am hoping in the very least for the HCC, Brendan's antibiotics are getting expensive :( The most important thing right now will be the help he gets at Kindy though and the support I can access now too.

:grouphug: hoping tomorrow is a better day x

ah Early kids I hear your pain.

Hamish retreats to his room when things get to much, it has and always will be his sanctuary. The problem is Lachlan can now open his door and will go in there constantly just to touch things.
This drives Hamish crazy, he hates his things being touched, he hates anyone in his room unless he has invited them. The door to his room is always closed whether he is in there or not but Lachie opens it all the time..
I have been thinking of how to deal with this but have been coming up empty......any ideas anyone

Riley reacts badly to 320 which is an anti oxidant in heaps of foods. He drinks heaps of milk its one of the few healthy things he eats but seems OK bowel wise LOL

Having an interesting sensory day here LOL Matilda and Riley have only had to be separated once LOL . Erin my 11 yr old is an angel- she is looking after all the kids and being so gorgeous. Christy- your girls are being fabulous!!! They are happy and haven't been upset about you being away at all- Matilda is very keen to eat the jelly she made but has been fine when i said "after dinner"!!

My boys share a room atm, was hoping to split them up when we move, but it's not going to happen... but what I thought was putting one of those play tents in the corner next to Brendan's bed so he has a 'corner' space at least. Still have the issue of keeping Tristan out, but I guess when Brendan needs his alone time Tristan and I can have 'our' time together.

So far today hasn't been too bad. A few meltdowns.... Tristan is right into sharing atm and Brendan loses it when Tristan 'shares' his food (Tristan puts food on Brendan's plate and then takes other food off to eat...) when we get our kitchen table and chairs we wit them at opposite sides so that we can help prevent that from happening though.

I wish there was a guide to ASD proof a house lol

Im going to post an update even though I keep thinking its bad taste - I know Lu would slap me and tell me to get over myself :lol:

We had a Ripley meet the psychologist session yesterday. I sat outside for most of it but he kept asking her where I was (I was listening at the door!). She's a bit confuddled by our little guy; on one hand he has some interesting traits that DONT mesh with an ASD diagnosis................but then he has some interesting traits (like echolalia that I never noticed) that DO mesh with an ASD diagnosis. I asked her what she was hinting at and she said he could be ASD but she wants to be absolutely certain it isnt something else before we pay out thousands of $$$ for the ADOS assessment. She feels he may be cognitively delayed more like years than months; maybe even permanently and in no measure. He's definately not normal. It was hard to hear that and I feel incredibly guilty about it being from something that Ive done (even the psych said it isnt, the other two boys are right on track for their age so obviously its not our parenting or anything, he just IS that way).

So at this point in time our plan of attack is to have the Griffith testing done to assess his cognitive abilities. The main psychologist at the practice has just been trained to give the test and because she needs 6 tests done for feedback purposes we get it for free. I cant tell you how happy I was to hear that. From there we will know where to go. Kimberley (the head psych) is quite experienced, esp in ASD, so if she feels he is possibly on the spectrum then she'll recommended we do the ADOS too.

So I still dont fit in here exactly but I hope you'll let me stick around. Not really other threads to chat in for these kinds of issues.

:hug: to everyone.

Kimberly is lovely, but blunt as well. I found it so hard to hear the words when she was giving us the results from the ADOS she did with Matilda.

I'm so glad she is giving the test for free. What a relief... Freya, I think you do belong here. That is why I put the title as Asperger's, Autism and Sensory Integration... they all overlap and affect the kids similarly... I should have put Global Developmental Delay as well but the title was getting too long, or PDD-Nos.... there are so many things which overlap and you know what? We ALL need the support together....

Freya, you def belong in here :hug: Good luck with the griffiths testing, I find the assessments quite interesting and it's good to know where the kiddos sit with development.

We will start seeing two sets of therapists soon, we will keep our local ones (allied health) which are focussing on his sensory processing disorder and those issues and we will start seeing some in Perth for the ASD issues (my priority for this is currently the violence... he head butted me in the face and kicked Tristan during our Autism Advisor meeting and I was soooo embarrassed! )

Hope everyone has a good day. Better go DS2 is crying

Freya - I really hope you get some concrete answers soon. It is so hard living in limbo.

Early Kids - I am sure the autism advisors have seen it all before and wouldn't have even batted an eyelid.

Did up some social stories for the return to activities. So far J doesn't really even want to read them as he ha said that he doesn't want to go back to kindy. Topped with E starting CC at the same time, I have a feeling I wil lbe dropping off two howling kids

Freya- you belong here more than I do so don't fret! I agree with Christy that these issues are all similar and we can help each other. Lord knows reading all your posts helps me. Though my son's similarities to already diagnosed children is scary at times. Oh and I hear you with the guilt. I keep thinking I have let my son watch too much TV, haven't talked to him enough, rotted his brain :( My H and sister tell me otherwise but in my dark moments I wallow on these points. I think there's a chicken and the egg problem too... I used to try and engage my son so much more but after constant disinterest/comprehension I guess I eventually stopped doing as much. He jsut doesn't do any craft, or dramatic play, or games, etc etc. I need professional advice to get us back on track though- I'm wondering if I should be pushing some interest in these areas more?

We decided 2 days ago to go gluten and dairy free for a few weeks and see what happens. He found a clix biscuit and had half ofit today though. And wont touch the gluten/dairy free clix style biscuits I had bought.

Meltdowns out and about are getting worse- he loses it when we go to someone's house and I've been trying to visit friends to say goodbye so this week hasn't been much fun. Oh god the 24 hour plane trip is going to be hell! :lol:

Christy- we're moving to Seattle. I looked up squashed sultana biccies and couldn't find any on the online supermarket shopping and found a blogpost the US used to import UK squashed raisin biccies but doesn't anymore. I have a recipe to make them- which may be good if we find gluten or dairy need to be cut out anyway. Thanks for mentioning Matilda's reaction to milk in cake, you made me realise my son has never been dairy free as even when we cut milk & cheese he was having dairy in biscuits.

Sorry- no advice on sibling issues!

All the best with testing Freya, and with new therapists early kids!

Girls, do you mind if I print off these threads and highlight Lu's posts and mail them to nick, Cyclone's dad? I was just taking out all of Lu's posts to print off, but I think he would like to read this and it could help in his journey.

I don't mind mine being printed, LuLu was such an awesome help and inspiration to me, she was always there when I needed questions answered (not just in here either)

Christy I don't have a problem, if it helps cyclone and Nick then I am all for it.

I have to say yesterday things came to a crashing head for me. I was struggling to deal with the sibling issues with Hamish and Lachie. The constant screaming was driving me to the brink. Hamish has massive sensory issues. He also has sensitive skin and therefore does not like to be touched and of course Lachlan being 2 just wants to touch. If lachie squeals or screams Hamish hates it , so it just goes on and on non stop from the minute they wake till one of them goes to sleep or leaves the house.
Then of course I have my older daughter to deal with as well, although she is a massive help to me.
Sometimes the stress of running a household drives me crazy let alone when you add an aspy in the mix.
In one way I am looking forward to him starting school but then I know its going to bring a whole new level of meltdowns, a new teacher, different class room, different area of school and different rules and kids are going to mean loads of time at the school I feel.
Autism SA have told me they will go into school on the 2nd week, i just hope they do as this is when it will hit and hit hard.
We are also going camping with friends for a week and I just know we are going to have a few problems, their daughters are very in your face something of course Hamish hates. Argh I am going to have to try and set up a cool down stay away area. Problem is the parents don't get it. Actually I am at the point where I don't care what they think he is my priority they can deal with it.

:hug: you said it perfectly, it's their problem not yours (that they don't 'get' it). We took our boys camping and Brendan had his own little spot he could go to and he loved it. Thankfully the only kids were mine though x :hug:

I hear you with the sibling thing too, my two clash too. Tristan is cuddly and Brendan will only accept a cuddle if it is on his terms, it causes a lot of issues for us :( Especially as Brendan is the one seen as "naughty".

I hope you have an enjoyable time away :D

I had SPD as a child and no-one was able to pick me up. I was lucky I just had a quiet, older sister so we didn't have sibling issues but when I was 2 my older cousin picked me up despite being told not to and I arched out of her arms, hit my head on the coffee table and still have the scar on my forehead to show for it!

I agree you can't worry about pleasing ignorant people tan. If they can't managa to try and understand then that's their loss.

I dont mind at all Christy, anything for Cyclone!

Of course Christy - anything to help.

:

---

I had SPD as a child and no-one was able to pick me up. I was lucky I just had a quiet, older sister so we didn't have sibling issues but when I was 2 my older cousin picked me up despite being told not to and I arched out of her arms, hit my head on the coffee table and still have the scar on my forehead to show for it!

---

Ouch!!! If you don't mind me asking, do you still have issues (with the SPD) now or is it something that's under control?

TBH I'm self-diagnosing as I'm not sure SPD was diagnosed 35years ago? My Mum was just told I was sort-of like an autistic child and I had therapy for speech & general early intervention through specialist kindergartens.

I had tactile issues and screamed/arched at touch. I have no memory of that so I guess I grew out of it quite young. I am still very sensitive to touch. I'm ticklish & have major aversions to certain areas being touched (wrists, collarbones & throat).

I used to scream and have meltdowns to noise too. My Mum couldn't take me to the shops as I would flip out but she said she trained me into it by taking me for soome chips then home again. Then quick shop, chips and home etc till I was happy to go. I do remember being sensitive to noise & covering my ears at times but I was also hearing impaired so it could be more related to my buggered ear drums. I still find some tones hurt my eardrums when they don't bother other people.

I was a very, very fussy eater. No foods touching, no sauces or spices etc. Very limited diet. No grains, no vegetables... I kept that up till I was 19 and realised it was all in my head. Slowly started eating more & more foods till 4 years later I became a vegetarian! Complete turn around. I mix up my food & love sauces, flavours, spices etc.

So I mostly seemed to grow out of it- maybeit depends on why you have the sensory issues in the first place? ie. the underlying cause.

Thanks so much for sharing :D I'm glad that for the most part you've grown out of it and learned to cope better as you got older. Certainly gives me a lot of hope with Brendan and his sensory issues. I think you are right regarding underlying cause. I'm hoping that's something the child psych can help me with.

Thanks again xx

Thanks for sharing meow! Sally, DS' OT had a good perspective on sensory things, that most people have sensory issues to some degree, and the threshold at which it starts to bother them fluctuates depending on stress, it's just that spectrum people experience a much lower threshold. I can identify with this, I have tactile and auditory sensitivities, and I actually think that they are getting worse as I get older, but I am more aware of them and better able to manage them.

Yep I understand SPD, I did a two day course and learnt a lot about myself and DS. It's the future that worries me, no-one else understands him the way I do, and as we are all aware I just can't be there every second of the day. It's just good to hear that it does get better for them.