Hi girls!!! I just got home from work, I just have to say thank you for caring I'm tired, smelly and exhausted but I know you know what a big deal it was to take M to the shops this week..... HUGE.
I just got back from shopping then, and on the way out I thought WOW - Matilda went through this and did so well!
I was nearly curled up on the floor in the fetal position myself and it reminded me what an amazing job she did xoxoxo
I hope its OK to join you guys?
I am about to embark on the journey to find a diagnosis for Riley. We are going to see an OT who specialises in sensory problems who has been recc. by a number of people including the Early intervention teacher at school and Christy!
I am in some ways relieved to think that there is a reason for his behaviour and that it isn't because he is spoilt and badly behaved but teary and sad that he isn't perfect/normal all of those words which we think our children "should" be. I know he is still my beautiful little man but its taking a bit of time for me to process.
I hope that makes sense and I don't seem like a horrible person.
This is the bestest place to come in and ask those questions about those funny little quirks, meltdowns or fears. I get far more out of this thread than my OT most days!
of course you are welcome!!! I have used this thread to feel normal on most days... and as our two seem to act normal around each other its good to know we have the support when we aren't together.
For those that aren't on my facebook... Matilda is having surgery tomorrow. She's having a GA and collegen injected into her bladder wall. We "should" be home tomorrow night, I'm not holding my breath though...
MrsMac - welcome! It is a hard journey but yes it is nice to have a reason behind the behaviour! The day DS was diagnoised was a fantastic day as now we had something to go with to help him and it meant we weren't in the "bad parents" or "naughty kid" category which is where we were putting ourselves before.
Christy hugs for Matilda tomorrow - hope all goes well. Will be thinking of you
MrsMac- welcome to the nut house were bouncing of the wall's, hitting our selves in the head and crying are all part of the game . Atleast in here we can be each others shoulders on our journey's into the unknown.
Christy ...have been thinking of you guy's all night. that M doesnt have melt downs and it run's smoothly...remember a GA can sometimes give you some normaility .
We've been having wet beds.....and outburst. WHY? because I went to Melbourne saturday without him, and only took M . Yesterday he kept telling me we had to get his school stuff ready for tomorrow (today) cause its monday and then I said no hon...no more school until next year when your grade 2.....to which I got High 5ed . But its still wacked him out. The boysw also got a new cupboard in their room....atleast he took that positively.
off to have a quick shower before the day starts......anyone want to crawl under a rock with me
Hi all, sorry i've been MIA...life has been crazy and busy busy busy!
my big news is that we finally got a diagnosis for Ethan! I am so relieved and truth be told a little sad as well because i guess it makes it real IYKWIM..but mostly relieved.
Well the the appointment started off bad...we only moved here 3 weeks ago so i got lost on the way to the dr.s office...i was nearly in tears, we'd waited so long to have the appointment and i was freaking out that we'd miss it...not to worry though the receptionist was lovely and we ended up getting there a little late. I took along a huge folder full of OT, speechy and dr. reports on ethan as well as info on all his quirks, milsetones and the ones he didnt reach, etc etc dating from birth till now and the effort paid off because the paed read through it, watched ethan for a while (who was bouncing of the walls, destroying my wallet etc etc) and gave us a diagnosis on the spot he said in most cases he gets a second opinion but not in our case... apparently Ethan was pretty text book autistic if there is such a thing. I even asked him where on the scale he thinks ethan sits and he told me not to call it a 'spectrum' as that leaves doubt in the mind...he looked me in the eyes and said 'Celeste, your son is autistic' its funny because i went into the appointment expecting to have to push for the diagnosis but apparently Ethan is so text book i didn't need to...its a little sad you know, i guess there's that part of me that wanted the paed to say 'oh he's autistic but he's really high functioning and he'll be fine..' but then i guess i don't need him to say that, i know what Ethan is capable of and i know he's making small improvements all the time. I don't know what the future hold but i have faith and i have so much hope for my little man
Anyway so now i'm trying to get my head around all the funding and stuff... the paed is sending me a copy of the diagnosis so i can fill out the paper work for the advisory program but what do i do about centrelink?? Apparently there is a carers payment? I had a look on the centrelink website and it says that the paed who diagnosed Ethan needs to fill out a Carer Allowance – Medical Report (For a child under 16 years) so do i have to ask him to do that? If someone can shine some light on that it would be very much appreciate
Hey lesty and yay for diagnosis!
Call Clink and they will send you a big packet to fill in. There will be a separate form for the paed to do. It's mainly tick boxes etc. It's up to you to give it to the paed, follow it up and hand it back in.
It must be a relief and a difficult thing at the same time lesty. I know even as I booked the OT for Riley today that I want to go there and have her tell me that I am overreacting and that there is nothing wrong (denial anyone LOL)
Riley has been much more settled lately with less melt downs as we have been much calmer with him and I have been avoiding situations which set him off. He and christy's Matilda had a great time together last week although she was more interested in his big sister LOL It was so relaxing to be with someone who wsn't going to judge me if he had a melt down naturally he was an angel LOL So was Matilda- together they make some sort of zen where all is good, we may start bottling it LOL
Avoided catastrophic meltdown today...ooh it was so close.
Santa was at the shopping centre and ds wanted to talk to him. He hid behind me at first but warmed up fairly quickly. When it was time to go Santa reached into his bag and said "there are 4 colours of lollies in here can you guess the colour of the one in my hand". Oh no...you can't do that to Mitch . It puts him on the spot and he gets nervous, then he thinks people are laughing at him so he goes postal...if he got it wrong he would be mortified and go freakin nuts. I was already imagining Santa being called every name in the sun for tricking him .
But NO! he guessed right PHEEEEWWW! Then Santa asks him to guess again - I'm thinking you are KILLING me here Santa - but he guessed again correctly. Phew!
Well done in avoiding a meltdown Mitch!!! Whew... thank goodness he guessed correctly!
lesty, well done on getting a diagnosis. I remember the first time I heard that Matilda was autistic "officially". It was after the ADOS assessment, and the psychologist said "Matilda is autistic" and DH & I just looked at her blankly. I mean, we were pushing for it, and knew it, but hadn't had anyone say it officially to us. Then later the paediatrician saying "So now you have the autism diagnosis, what do you want to do about the ADHD?" and I just stared at him... and said "Nothing"
awww mrsmac, I'm pretty sure that Riley will put it on sooner or later in front of me But to be honest, it generally takes ages before Matilda feels comfortable enough in front of someone to melt down. Unless its Mitch she didn't really melt down, but was uber sensitive.... to the way that she was just being wussy in a way I've never seen her act before.... crazy stuff. Mitch won hands down!!!! I appreciated the zen as well.
Well us.... surgery.....
Matilda came through surgery with flying colours. When we arrived and they were doing all the admission stuff, the nurse said "oh Matilda, I remember you woke up a bit grumpy last time? Do you think we could wake you up with an ice block and start out happy?" I held my breath and Matilda said "What kind of ice block?" LOL
It was the same nurses, same bed, same thing as the scope. So she knew what was happening next. DH got her a new DS game and she was soooo into it (thank GOD!). Then when she woke up, she looked at me and said "Where's my ice block?" She said "I know I have to wee, but I'm a bit scared... will you come with me mummy?" and when she wee'd she said "Its a bit stingy, but not too bad" what a freaking star. Last time when she woke up she wanted a different ice block, wouldn't wee and wound up kicking, biting and hitting me whilst screaming and they sent us home because they aren't equipped to deal with it. She was just such a star and just ate when she needed too and did everything without screaming or fighting it so we got home super early. It was awesome. Her recovery has been a bit touch and go, but its expected. Today she's nearly back to herself!!
Unfortunately the results aren't what we expected, so its taking us a while to accept stuff. We sort of thought our journey with everything would be finished after Monday, but we were wrong. She apparently has significant kidney scarring and some damage. For the next 2 years she will have to have a GA and scope every 6 months and ultrasounds every 3 months. So its worse than DH or I expected. No surgery or drugs can repair the damage, its something we have to keep a very close eye on the rest of her life.... and that isn't easy to swallow right now. My poor poppet.... she's so beautiful, and so scarred.
Lesty - congrats on the diagnoisis - I know that doesn't sound exactly right but you know what I mean. I'm happy you got some answers and now have a pathway to take. As for the paper work our pead had it all filled out for us and gave us a call about a week after our appointment for us to pick up??
Lulu - omg! well done on avoiding the meltdown - I hate moments like that
Christy - massive hugs to you!!! I wish you and Matilda didn't have to go through this and hoping you get the best outcome available and that it happens soon!
My child has autism. The reality continues to hit as times goes by. I thought at first that the diagnosis was wrong and I wasn't doing it for a label that I was doing it for the financial assistence to get her the help she needed, but now....
Let me backtrack to last week. Last week I signed her up for week long swimming lessons. 30 minutes a day. I thought it would be good to have some routine or something regular for her during school holidays..... well..... she was tired every afternoon, which meant rotten behaviour. She flapped herself to sleep two nights in a row, last night it took her 2 hours of which I had to be sitting with her to get to sleep whilst flapping and kicking her legs.
She's not attacking us at the moment, which is fantastic, we have seen progress over the last few months of her aggressive behaviours. But this stimming, or as I see it "De-stimming" is hard to watch. She's so riled up, she has to flap and kick to get her body to calm down. I tried to do OT stuff before bed, but last night that made it worse. I feel bad because its still an improvement in her behaviour, but its hard to sit and watch her unwind physically.
Last night she let me put her weighted "cuddle friends" on her to help her settle, but it still took 2 hours! We took her to the beach in the afternoon as a reward for her behaviour during the day, and I think it was just too exciting. She swam heaps and should have been wasted.
Ahhhhh well.... she's tired and a mess today, but we aren't going to the beach today for this reason. Its 30 and perfect beach weather, but we will stay at home and put some water in the wading pool for her....
hon....we're having a rotten time atm to
I know this is gonna sound silly, but you know how the new shower heads have that 'hard' setting...could you try letting her have a shower with that setting at all hitting her back? just cause of the pressure you know? W loved water...still does and if he was highly strung..flapping ect shower it was, even if it was half an hour...I just had to for him and for us
no pyhsical attatcking atm...its more mental. The nasty names, taunting, crying, backchatting. Every day he tell's me what day it is and how many sleeps until he is '2010 8' - meaning its 2010 and he's 8 this year.
I had my brother here last week who we see once every few years. My brother isnt use to kids, let alone special need ones. He took all my attention for 5 hours the first day and then 4 the next. By day 2 W had had enough and flipped and J and I. We had to ignore the phone day 3 and go out to the splash park so we would have no visitors. Christy hon...your girls would LOVE the splash park...W runs and runs, giggles, screams with all the rest of the kids. Friggen awesome!!!!!
Best take someone out to our pool, he's pinging again as water is calling
I am nearly at the end of my mind/tether whatever ATM. Riley seems worse this week, he hasn't been to FDC since before Christmas and Erin has been away so things are out of whack but he is driving us to despair.
He seems to get so overwrought then scream and screams and kicks and hits and won't calm down for ages and ages. Last night he sat behind my bedroom door and screamed "go away" if anyone went near.
Shopping has been difficult too, he seems to lose it really easily there and having my dad tell me that its just cause he's not getting his own way doesn't help. (apparantly I should have "crushed his spirit" by the time he was 18 mths - thanks dad)
I have tried to explain to a good friend about the sensory disorder testing and she says "I really don't think he has a problem" but then in the next breath says maybe i need Supernanny which makes me feel like she is blaming me for his behaviour.
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I'm tired, smelly and exhausted but I know you know what a big deal it was to take M to the shops this week..... HUGE.
of course you are welcome!!! I have used this thread to feel normal on most days... and as our two seem to act normal around each other
its good to know we have the support when we aren't together.
. Atleast in here we can be each others shoulders on our journey's into the unknown.
that M doesnt have melt downs and it run's smoothly...remember a GA can sometimes give you some normaility
.
. Yesterday he kept telling me we had to get his school stuff ready for tomorrow (today) cause its monday and then I said no hon...no more school until next year when your grade 2.....to which I got High 5ed
. But its still wacked him out. The boysw also got a new cupboard in their room....atleast he took that positively.
he said in most cases he gets a second opinion but not in our case... apparently Ethan was pretty text book autistic if there is such a thing. I even asked him where on the scale he thinks ethan sits and he told me not to call it a 'spectrum' as that leaves doubt in the mind...he looked me in the eyes and said 'Celeste, your son is autistic'
.
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