Aspergers/Autism/Sensory Integration Chatter #3

[Olive]

following on from here:

https://www.bellybelly.com.au/forums...er-2-a-18.html

[Early Kids]

Sally!!!

have 3 main concerns for Brendan right now. 1) his ears, it's infection after infection atm and we are still yet to hear from the ENT about an appointment. 2) his weight and bowels, he has been the same weight for 12 months now and has never really had a firm poo (sorry for the tmi) I am under the impression that he has some kind of intolerance, but again the Dr here has said the paed is the best person to talk to, which is not till May. And 3) School.. I'm concerned that because he is already well behind his peers, he is going to be left further behind. And I realise that school is not for another year, and a lot can happen between now and then, but enrolments are in Aug!

I nearly dropped to the floor when I read that....

Matilda did not gain weight between 12mths and 24 months. She lost some weight before that as well. She did not do a formed poo until she was over 3 years old. At 3 yrs old, she was diagnosed with a cow milk protein allergy, and we went off all milk in our diets and... a month later she started doing normal poos and gaining weight. Maybe while you wait try to go off milk? See if that helps, at least drinking milk... Cook milk can change some proteins not all, but that often is all that you need to do. It can't hurt!!!

Thanks Christy! You actually got me thinking... Brendan had gastro end of May last year and lost just over a kilo in about 3 days. Two weeks later he had another bout of gastro and lost another kilo, but in that 2 weeks in between Brendan gained back most of the first kilo, so at the end he was only about 1.5kg down in the month. BUT he was taken off milk in that month and for about 2 weeks after and while he never had the formed poo, he did re-gain his lost weight. Then at around Aug he had another bout of gastro which saw him loose close to a kilo again, same thing happened came off milk and re-gained weight. Dec another bout and same thing happened... except he was put onto lactose free milk for 8 weeks following the clearing up of the gastro. I don't know how this wasn't put together sooner! Now to take out all milk... fun fun. Does the protein go through into powdered milk? He only has milk first thing in the morning now, and he doesn't really drink much of that anyway.

In regards to toilet training, we are taking it easy. We've found there is no use forcing the issue with him because that always leads to him going backwards. Brendan will go to the toilet, but it has to be on his terms, no one is allowed to be there with him he does it totally alone.

We've been meltdown free for about 5 weeks now, but in that time we've started a weekly group speech session and recently joined a kinder gym too. Brendan has also been ear infection free for about 3 weeks, so yay for that too!

[christy]

Sally!!! Matilda had 4-5 ear infections a year until she went off milk... since then she hasn't had any just when you mentioned ear infections it got me thinking about how the allergist said that milk allergy causes thickening in sinus' which block ears causing multiple infections. I sort of ignored him at the time, but she's not had any since coming off milk....

We have rice milk in our house, DD2 is allergic to soy, so we don't have soy milk, just rice milk. The Vitasoy protein enriched rice milk is out favourite so far...

For Matilda we had to take EVERYTHING out. And only now, 2 years later are we trialling cooked milk (when its heated up to a certain degree it changes the proteins) so this week we are starting on milk arrowroot biscuits (one every other day). I'll let you know how she goes.

DD2 who is allergic to milk as well, seems to tolerate cooked milk fine. She actually can tolerate heaps more than Matilda. She is worse with soy than milk products now. She can have small amount s of cheese with no ill effects, but we haven't tried anything else yet...

[*Efjay*]

I bought rice milk today to try Evan on. While we don't have major issues with his bowels I have noticed he rearly has a formed poo. Its always soft/runny. I have also noticed this with Isla. Dh can't do cows milk. Isla likes soy but Evan does not, so will try the Rice milk & see how we go.

[Early Kids]

Wow Thanks! Will def get onto some rice milk then, if I can avoid seeing the ENT altogether then I'm all for it! Makes me kinda mad thatb the Dr's here wont do anything other than keep giving anti biotics for ear infections... Generally Brendan gets a throat infection at the same time...

[christy]

Yep we had tonsilitis.... even to the point that our GP suggested we get her tonsils out and grommets in with a referral to the ENT. We were dealing with all the behaviour as well.... and then DD2 was born and I went to a LC who said that she was allergic to dairy... and took one look at Matilda and said "I can bet you that she is allergic to dairy as well" . We went on a waiting list to see an allergist who was a GP as well, he did heaps of tests on Matilda and found she was severely allergic to cow milk protein... 4 weeks later, no more ear infections, no more throat infections, her faeces became normal and her speech improved. Her speech stalled at 2yrs 5mths for 7 months.

We were nearly convinced that we would see everything disappear and that it was only a milk allergy, not ASD or sensory... but we were wrong, the milk allergy was responsibile for a lot of things, but not her ASD stuff. Having said that, her meltdowns went from 6 hours a day on average to 3 hours and even missing the odd day. It was a HUGE improvement. So much so that DH went on a "milk is evil" kick and tried to convert everyone . I still suggest it to breastfeeding mums who have reflux issues or multiple ear infections because really, what does it hurt to avoid milk for a while?

ETA: theres a huge movement amongst the ASD community that gluten and milk intolerances are common. Most of the kids are allergic or intolerant to one or both. In fact there's heaps of autistic T-shirts that people wear that say GFCF C=caesin protein that is the main allergen (not lactose which is commonly thought). This is also why A2 milk is suggested.

ETA2: if you google gluten free/caesin free autism you will find heaps of info out there, some of it is quite... ummm..... antagonistic? I don't necessarily believe it all, which is why we went through all the testing, but I promise you it works for us.

[tan32]

wow ladies I am learning so much.
Hamish is dairy intolerant and it causes upset stomachs, he prefers soy milk and will only have one type of it...
He has a lot of bowel problems but his is the opposite where he actually becomes extremely constipated, he has to take parachoc every day to stop the problems.

I had a question to ask, I am wondering if you find charts and reward charts on any benefit. I have seen how Hamish reacts with the homework chart in class and he loves placing his sticker on the spot.. Am thinking of setting up a chart at home to put a sticker on for when he completes his routines.like taking lunch box out of bag , doing homework, etc

We have our first appointment with the peads this week and I am still extremely nervous.

[Lulu]

Pead appt today. It went really well, I LIKEY this woman!

She agreed he sounds borderline ASD and wants to do the next lot of testing - hearing, IQ, psych x2 to confirm.
She is booked up till 2501 but says she will see him in her lunchtime to make sure we can get a fast dx and access the funding.

I also love her because she has a Childrens Foundation in India

[maz]

why do I stay away and then head back here when Mario is in his zone again!!!

I am getting so frustrated with the agression atm.....not pyhsically but the verbal and its always towards MIni me and myself..

Rice milk you say Christy...must get some again..soy worked well for us too.

Lu - the drops are working well to hon..I really cant thank you enough for them atm...that and incremin.

we had 3 weeks of wet beds...it was doing my head in until he told me on the way back from Melbourne that one boy is continuously telling him to shut up and another is lashing out at him...light bulb moment. thank god he has a great teacher who has taken him out of the special needs room and back into the mainstream.

We start school holidays next week...HELP!!!!!!!!!!!

[christy]

oh Maz I hear you on school holidays.... AND I'm working most of it!!! Soooo I get to pay for it the few days before school goes back when I am home looking forward to that.

I've tried to go through the schedule with her beforehand, and we've marked everything into the calender for her, she's spoken with MIL about what she wants to do on her days with her. She's spoken about how she won't see me much and how she may want to sleep in our bed during that time to be near me, so DH & I said that was okay if she needed too. Fingers crossed it goes okay!!! I'm going to be working at the Royal Easter Show for 11 days straight, big huge days.... so I hope we get through it alive!!!

Matilda had a bad day today, it was pretty full on, but we've gotten through it. It didn't help that her 3 yr old sister was screaming most of the afternoon about things we couldn't do anything about.... how can I get the clouds to move??? I just can't! *groan*

[Lulu]

Matilda had a bad day today, it was pretty full on, but we've gotten through it. It didn't help that her 3 yr old sister was screaming most of the afternoon about things we couldn't do anything about.... how can I get the clouds to move??? I just can't! *groan*

this is doing my head in too. DS can have good days totally spoilt by Miss 4 screaming about the same sort of thing or deliberately irritating him into a meltdown.

[maz]

Yep same issues here.
Mini me starts on Mario as soon as he gets home from school tellign him what to do and to stop copying her...grrr adn then he starts off goes to his room and the witch follows him chanting at him. I was ready to have wall mounted children last night....pacaso style!!!

This mornings drama....today is the last day off school not tomorrow.....and im a liar

dooby anyone?

[Lulu]

rollin rollin rollin...

DS isn't well and can't go to school today so we are already going off here.

[Early Kids]

I am so close to my edge with Brendan I find I am doing things which I do not like doing, in regards to parenting. I don't like smacking as an everyday punishment, I do believe that there is other ways to discipline without smacking. But I am having so much trouble finding them. Time out does not work for us, taking things away does not work. Brendan simply does not understand that his actions were naughty so the punishments mean nothing. His sensory issues are really playing up atm too. He has been dummy free for about 3 weeks now and since then he has started mouthing everything else! It's so frustrating this moving forward 1 step going back 2 thing, I'm over it

Anyway he was playing up in the waiting room for the CHN when his OT saw us. We had a quick chat and she immediately picked up the sensory regression and the behavioural issues. As she is leaving (which I'm sad about, she's a brilliant OT!) she is going to organise a group thing for just Brendan and his therapists to see if we can come up with more suitable punishments for his developmental age. I just hope it's soon, I'm so close to being pushed over the edge I have a constant headache from gritting my teeth and a sore throat from yelling. I hate yelling it proves nothing, but I just don't know what else I can do nothing is working.

I hate the looks I get when we go shopping and I hate going shopping at all. I've only recently (last 2 months or so) started to get out and join groups ect because Brendan was doing so well. I dread going out in public, even just checking the mail is a huge effort. I also hate how Coles and Woolies have lollies on their checkouts and where kids can reach them. Our Woolies has a stand of lollipops right in the doorway and of course the kid wants one! I know it's just a marketing scam but I refuse to pay for anything my child opens because they put them within their reach. I would spend longer and more money shopping if my experience was more enjoyable...
Sorry going off topic...

I hate this waiting in limbo crap. I just can't wait for May to hurry up and be here so we can get the ball rolling and Brendan and myself on to some proper help and assistance. Sensory Integration diagnosis means nothing for us, it changed nothing. We were already doing speech and OT we were already doing paed visits. Brendan has not gained any extra help and neither have I. The only respite I get is the day Brendan is in daycare and even then we will probably bring him out because it is starting to cost us too much.

Just needed a vent, not looking for answers or advice so please don't be offended if I don't take up on advice. Thanks

[Butterfly Dawn]

and my heart goes out to you. Big hugs. My DS1 is a handful and we found timeout didnt work for him just left him confused and still very emotional so we made the "manners chair" just a little stool in our main room and its used for both kids when they get too much. When talking wont work, when they are shouting at me, hitting or kicking each other, or even if I've askedthem to do something 25 times and its not happening. General bad manners or unreasonable behaviour earns them an amount of time on the chair. If mummy or daddy say a bad word then we have to sit on the manners chair- that way the kids see its not a personal thing against them
Sorry Im not explaining it very well, but I hope you get the gist of it and perhaps it will help you

[maz]

Sal...I remember that stage..its so horrible to not get through and have the stupid headache and tension in you at the end of the day. Yes I to went off my nanan, I smacked and owrked out it did nothing as well but stopped when i noticed I was using it as my outlet to get the stress out

We were referred to an educational advisor who taught mario to sit at a table, yes with force but after 2 months we had progress.

again hon, rememeber you are doing a wonderful job, even when you think the sky is black its actually blue

[Early Kids]

and my heart goes out to you. Big hugs. My DS1 is a handful and we found timeout didnt work for him just left him confused and still very emotional so we made the "manners chair" just a little stool in our main room and its used for both kids when they get too much. When talking wont work, when they are shouting at me, hitting or kicking each other, or even if I've askedthem to do something 25 times and its not happening. General bad manners or unreasonable behaviour earns them an amount of time on the chair. If mummy or daddy say a bad word then we have to sit on the manners chair- that way the kids see its not a personal thing against them
Sorry Im not explaining it very well, but I hope you get the gist of it and perhaps it will help you

Makes sense to me. I'm just not sure if we'd be able to impliment it or not. Worth a try though. Thanks xx

Maz, Thank you. I have reached that same stage. I went over my own boundary today and cracked it. It's just so frustrating, I feel I have exhausted myself trying to find something that is going to work.

[christy]

oh Sally you are not alone. There was a time there, when I was on the phone to Lifeline or some parent line for help to not hurt Matilda as I was at the end of my rope. Over and over again I was given parenting advice that JUST DIDN:T WORK! We tried the Triple P course and made a huge go of it. 8 months of going to fortnightly meetings and working together and we finally were told that Matilda didn't respond to it so it was beyond the social worker... There is now a Triple P course for parenting ASD children, and I reckon its pretty good for getting a basis of how you parent and how to work together. Just having "tools" to fall back on are helpful.

Matilda didn't cope with time out. If I started on time out, we would do a 6 hour drama over it.... and then I would give up, because 6 hours was my limit. Matilda fought to the death, and I just couldn't do it. Matilda would laugh if I smacked her in last resort because for her smacking feels good. I found in the end the only thing that has worked for her is doing OT exercises.... if she's loosing the plot I jump in quickly and squash her and do deep compression work (squashing is putting her between two bean bags and jumping on top of her and making her climb out), pushing her joints together and doing breathing races (we use a straw and push a ball down the hallway in a race... this makes her do deep breathing which helps calm her down). It takes a LOT of energy to get through. Its hard hard work... and if I don't have the energy, its not too good.

I am not saying this as someone who has found the answer... just as someone who is on the upside at the moment.... I'm not naive enough to think that it could not go downhill at any moment. Anything could set us off downhill again... but I'm living in the good time at the moment.