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.
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!!!!
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!!
hon....we're having a rotten time atm to 
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