Meeting Matilda....Meeting Autism

[thepixie]

Just wanted to pop in and take my hat off to you Christy - Wow.... what an amazing story. You and your DH are doing an incredible job in a really difficult situation. Glad you could find some support in Sydney and look forward to reading more.

[PinkPalace]

*Hugs Christy*

You told me a little about Matilida when we used to meet up.
BUt reading this story is such a journey for you.
You are a strong an wonderful woman and such a great mum to your girls.

You know when i think about Matilida - you remember what i think about.

When i had told you about the trouble i had with DD, and how she wouldnt go near other children and was too scared to be touched for the fear of another child hurting her... do you remember?

And we went to the park for the BB meet up in brisbane on the north side.

I was getting Ethan out of the car (ashley had only met Matilida once or twice) and i turned around and there was Matilida - holding ashleys hand and the two of them walking towards the park together.

I could have cried. It was the first time in months i had seen her allow another child touch her that she didnt really know closely.

I dont know why that stuck in my head but i can still see it in my mind.

xxoo

[lestyrox]

Thank you so much for sharing Christy. You're such a strong woman
The screaming is what i find the hardest.. and you had to deal with it for 6 hours day in day out! My gosh how did you survive? The next time Ds has his usual screamfest (he just finished one 5mins ago) i will think of you. Reading your story (and others going through the same thing) makes me marvel at the human spirit. Its amazing what we can endure for the people we love most. Thank you for sharing

[ezymay]

Christy how amazing of you to share this with all of us! You are amazing!

[christy]

AWwwww PP that is a beautiful picture of Matilda, that was one of those good days.

[MistyFying]

I've loved reading yours' and Matilda's story Christy. It's very generous of you to share such a personal journey with us. Thanks so much

[christy]

So Saturday I did an entry, but it didn't get through.... but I thought I'd share a bit before I continue our journey.

DH took the girls to the park so I could dye my hair. It will be another two weeks before I could get to a hair dresser, and my grey is too obvious. So I did my hair and DH took the girls for a play. When I got out of the shower, I checked my mobile and found a text "Can you hear her? Want to come help?" so I stuck my head outside and heard her going nuts in the park down the street. I took off running. When I got there, I found him having to physically restrain her while poor DD2 was in the swing. I got to them and he told me "She's been like this for 20 minutes, apparently she wants an ice block".

A Fricken Ice Block????? We dont' have them in our house, but apparently she was taking herself to the shops for one. When DH tried to stop her, it turned into a battle for her life.

I had to throw her over my shoulder to get her home, and once there, I had to lock all our doors at the top locks and DH stood outside holding her windows shut so she couldn't climb out them.

Over an hour later, she was still trying to bite me. DH got bite marks down his arm, he was bleeding. DD2 was screaming her head off because it was all too much. The dogs were hiding under the beds. I was physically restraining her because she kept smashing her head into the windows.

Up to 90 minutes, and I accidentally rubbed her side to which she started laughing hysterically. She decided it was fun. 30 minutes later and I had her in a tickle fight and calming down.

I sat there afterwards like a zombie... I mean how are you supposed to function after that? How are you supposed to be okay while you help your DH disinfect bite wounds from his daughter? How are you supposed to give your DD2 a "normal" life when it just isn't?

Matilda and I spoke about different tactics I will have to try next time. I told her about how she will sit in her bed & kick and scratch and scream into her pillows and if she does that without hurting anyone or escaping, she will get a sticker for her book.... she seems keen, so we will just have to see how she goes next time. It seems funny, rewarding her for her next meltdown.... but I want to reward her for handling it the right way. Because its unavoidable her having another meltdown.

[CeCe]

Christy, I'm in awe of you and your DH. I once asked a friend who was going through a divorce how she coped and her answer was 'I just have to'. I guess this is similar but to cope and love the way you do is incredible.

Thank you for sharing. It really is an eye opener to the life of people with sensory issues.

[maz]

Christy hon......I have no words....ive stood were you are and all I can do is cry in frustration and heart felt pain for you hon.
xx

[christy]

April 2009. My birthday was early on, and it was lovely. Matilda was amazing, so well behaved for 3 days in a row! Our life was changing and we were esctastic. I actually took our name off the psychologist's waiting list for Matilda.... (how silly, after only 3 good days in a row....). Then we got sick with colds. DD2 had croup and that was pretty sad and hard. DH stayed home from work and took DD2 to the GP, while he was there he brought Matilda with him as she was a bit "off". When they got there DD1 had a cold & croup... all okay, but the GP was concerned about Matilda. She had a temp of 38.9 and didn't like the lights. DH said "She doesnt like lights shined in her eyes at the best of times, but we will keep an eye on her" The GP said she was concerned about viral meningitis and went through the "what to do's" and wrote it all down for him.

*** bit of a side note *** often kids with sensory issues, or on the Autistic Spectrum don't feel pain the same way... sometimes a touch can feel painful and sometimes slapping hands feels good....Their perception of pain is completely different to ours.

So when the GP was manipulating Matilda's neck and asking "Does this hurt?" Matilda giggled... DH caught that and made sure to keep his eyes on her.

They got home and Matilda laid down for a sleep (she doesn't sleep at the best of times still). But her temp never got about 39. DH gave her panadol and nurophen as directed and she kept some food in. That night we actually set up the toddler bed in our room and had her sleep in there so we could keep an eye on her. She wound up vomiting all over her bed, our bed and everywhere. Her temp was 39.2. I phoned the hospital and was told that it was up to me, if I was concerned to bring her in. She had fallen asleep while I was on the phone, so I left her.

In the morning, Matilda's temp was 38.0, and she just wanted to sit on the lounge and watch TV. I was fine with that so we sat around and had a pajama day. At 10am, I decided to jump in the shower as she was calm for once! I locked and deadbolted all the doors and windows. Jovie & I jumped into the shower as she was still snotty from her cold. When we got out, I found Matilda under 3 blankets shaking. Her temp was 39.5 and she was white. When I pulled the blanket off her, she screamed.

I wrapped her in the blanket and carried her straight to the car. I chucked some nappies and snacks in the backpack and we went to the hospital.

After 5 hours her blood tests showed she had an extreme infection. Her white cells were through the roof. Her urine was clear... we were admitted to the ward for a lumbar puncture the next day. The ED team were not game on sticking a needle in her, as even though she should have been acting very very sick, she was sitting up and climbing the walls. She was telling knock knock, smelly fart jokes... She refused to talk too or look at the staff at the hospital, but the minute they left our room (we were in isolation) she would chat away and they would watch from outside and see how she was.

We spent 5 days in hospital. For the first 3, Matilda was like a normal child. She looked at me in the eyes and told me how she felt, she was beautiful. They didn't do the lumbar puncture because they didn't think they would be able to do it with her so well. The paediatrician came in one morning, sat me down and said "Do you know that there is something different about Matilda?" I said "Yes.... we've been through a lot and don't have a diagnosis" He sat there and grabbed a resident to come in. The resident had been working at an assessment centre, so they both sat DH & I down to discuss the fact that they felt she would be able to get a diagnosis now. The resident wrote a referral to a private paediatrician who specialised in the Autistic Spectrum and was only 10 minutes from our house. It was going to cost us, but we decided to go for it. The referral was worded "A second opinion of undiagnosed ASD" So he thought she had it... I felt like someone recognised it without us pushing our agenda in their faces.

The waiting list was 3 months, but we didn't care... we've waited years for this to come.

We left the hospital with Matilda being very weak, and very very off. Her whole life was turned upside down being in hospital, and her routine was disrupted. Her rhythm was off and she was a mess.

[rachel6188]

iv got no words just amazing respect and admiration for you.
you do a amazing job with m.
never doubt yourself as a brilliant mum.
love rach xxx
m sound like a beautiful and amazing little girl - be proud xxx

[Gracious_Goddess]

It has been a real eye opener reading yours and Matilda's story.
Thank you for the insight into your life, you are a truly amazing woman and mother and Matilda is a very beautiful little girl.
xxx

[christy]

I appreciate all the kind words it is lovely. Especially because most of the time, when we are in public with Matilda we get less kind words spoken to us.

We went to a birthday party of family at an indoor playground. After an hour, Matilda started to lose it and we had to leave. She ran out of the building and straight into the carpark... then she ran back in. My best friend picked her up and carried her out to the car kicking and screaming. The thing that hit her most was the other parents comments. People staring at us, some saying things out loud and judging. She still talks about it months later.... the thing is.... I get that everytime I go out with her. Everytime we go somewhere.... we went to the paediatrician the other day & had to walk to the building and go up a lift etc. I had a guy in the lift say to me "you should stop her from pushing the buttons". I nearly said back "You should live a minute in my life mate..." but I was too horrified to say anything. I mean??? Why do people feel the need to comment?

I've had other parents come up and offer parenting advice, I've had grandparents tell me to control her, I've had people wonder why I don't sweat the small stuff..... I can't.

I hope that in reading some of this, that next time you see a mother struggling with her child. The next time you see a child hitting their parent. You don't immediately blame the parents. Or the child. Sometimes being out of control is just that, out of control. Being completely unable to control themselves.

[Santosha]

Well said Christy. I hope more people think before they judge. What you said made me think of this... I was in Kmart yesterday and I heard a little voice demanding a particular DVD (couldn't see him from my vantage). His dad was saying 'no' and trying to distract him and the little guy threw a massive tantrum. The Dad tried various tactics but the screaming escalated and was fast progressing to a physical outburst.

A woman walking past made eye-contact with me and rolled her eyes as if to say 'he can't even control his kid'. Other people were standing at the checkout staring and looking disapproving. It was really full-on and I could tell from their looks that most people seemed to think that the Dad was handling it really poorly or that it was somehow his fault.

As the screaming got even louder I saw the Dad pick up his son under one arm and walk out of the shop... and saw the little boy's face. He was a kid from my early intervention centre. A bright, gorgeous little guy with ASD and major sensory processing issues who is an absolute angel when he's getting his own way... and when he's not, even those therapists who I regard as amazing, talented experts cannot get through to him. I felt like shouting after the Dad "I know what he's like!! You did well even getting to the shops!". Poor guy. I'm sure he would have had a battle on his hands all the way home and probably a pretty stormy afternoon.

Parenting is hard enough without all these additional issues to contend with... and judgmental people DO NOT HELP.

Hugs hun. Really appreciate you continuing to share your story... seems like you're starting to get some answers.

[Erin_25]

Wow, thanks so much for sharing this with us....it's really opened my eyes. You are an amazing & strong person & I admire you for sharing this. I also admire you for not saying anything to those who judge.......we've often had trouble with Charlie in public & if anyone judges me I'm afraid I tell them like it is.

I wish you all the best and hope things are working out for you & your family.

[murraysmum]

darl i know ur pain i get those looks and its heartbreaking i almost want to curl up onthe floor and cry i still dont understand why ppl asume autisitic kids arnt autisitc i know its not visual but its still a disabling disablity


big big hugs hun ive laughed and cried reading your story and i can relate to you cause ive lived some of it

big hugs again u are a verry strong woman and ur husband is a verry strong man

[christy]

So I forgot to bring you all up to where we are... it will take a few more entries but I will continue from where I left off in April.

2 weeks after we left the hospital in April... 2 weeks. We were just starting to get back into a routine. We were working hard with Matilda to keep on top of it all. We couldn't go to OT because it was too hard on her little body so we just did some of it at home. But she had no bladder control at all. We know that to be part of our journey and her issues with her core muscle strength. Usually doing OT exercises helps her. Her bladder issues were huge, she was completely incontinent. So we started working her harder in her core muscles.

On the Saturday... 2 weeks & 5 days after we left hospital, Matilda's temperature went up again. I freaked out and took her straight to the hospital. There was a huge wait with people with "swine flu" concerns. We got in & saw the paeds who took a wee sample and we waited for an hour. While we waited, Matilda's temp dropped and she started terrorising the Paediatric ED. She was jumping off the roof... so they sent us home with nothing.

That night my friend's water broke. I was supposed to be going to her birth... I was so excited to get to help her with her VBAC. The plan was she was going into hospital on Sunday, and I was going to meet her there.

The next morning, DH was out at church playing music and I stayed home with the girls as Matilda's temperature went up again. I was packing my bag to help with the VBAC and preparing myself to go. At 10.08 Matilda had a febrile convulsion, her temp at that time was 37.9. As she came too, I phoned DH and told him to come home now as Matilda had a fit and I needed to get to the hospital... TBH I never even thought of calling an ambulance. I work with animals and it didn't phase me too much. I repacked my bag to include her stuff as well, I got enough for 5 days again, but this time with toothbrushes and everything.

Matilda as post-ictal for ages, she was groggy and floppy. When we got to the hospital I grabbed her and ran in to a waiting room full of people, no seats and heaps of people with masks on. As I got in the door, Matilda projectile vomited everywhere. All over me, the floor, everywhere. People actually gasped out loud at our dramatic entrance. I sat on the ground in the queue for triage with Matilda in my arms. Everyone was staring at us. We had phoned ahead. The nurse called the paed dept straight away and we got put on a wheelchair and taken straight back. Matilda's temp was 39.8 by that time. We got put in a bed and I didn't let go of her.

The registrar recognised us who talked to me about Matilda being on the spectrum. He came over, concerned as we had only been out of hospital a short while. I said that Matilda had a fit... they were in rounds but would be with us in a bit. So I got us changed out of our vomit covered clothing and we waited. Rounds seemed like forever. When the pile of people got to us, it was the Paediatric neurologist on rounds (who would be the ideal person to see when your child has had a convulsion), a urologist who is studying paediatrics (perfect for urinary/kidney issues), and our registrar who has worked with Autism. Amazing.... The perfect trio for our journey. They did blood tests and urine tests to find that Matilda had a massive urinary tract infection. They hadn't had results the day before from the wee other than that there was protein in her wee. They hadn't cultured the wee yet. It takes a few days to do that. Her blood tests however, showed another raging infection. The fit was just a febrile one, so it was pretty inconsequential. But its what got us there quickly .

So another hospital journey with a very sick sausage. Matilda wee showed a raging infection with resistent bacteria, so we had to swap and change antibiotics which had to be given intravenously. They did an ultrasound on her bladder which gave us another shock. Matilda has two ureters on her left kidney. That is the tube that goes from the kidney to the bladder. We weren't told anything other than she had two ureters.

We were told it would mean more visits to the hospital to make sure her kidney was functioning well. So I tried to focus on getting us home.

Finally, after another 5 days we were able to go home. I packed our stuff up and was getting ready for them to take the catheter out so we could go. As I was about to take a trip to the car, someone came in and said "I'm here to take Matilda to radiology" I stared blankly at them. Apparently they wanted to do the nuclear scan that day. Before they had a chance to tell me, there was a cancellation so they shoved Matilda in the slot. It freaked me out entirely... I mean, why fit her in the first cancellation? Why rush us through unless there was a problem? When we got there I was informed that Matilda would have to lay on a table for 20 minutes and then get up to urinate and then back on the table for 20 minutes, and then break for another 5 minutes and another 20 minutes on the table. Can you imagine my concern? My child who can't sit still when she is extremely sick, is suddenly supposed to stay still on a table while a massive piece of equipment moves over her and then get up and urinate on cue? I grabbed a lead blanket that was there & threw it over her legs. I sat next to her and they put on a terrible kids DVD. I held her arms down and cried as she screamed. She had to be taped to the table.

She stayed still , she wee'd on command .....

Unfortunately I work with internal medicine specialists with animals and know how to read certain things on scans/ultrasounds.... I'm used to seeing CT scan results etc etc and know what I am looking at. Matilda's results weren't the same. The left kidney didn't empty the way the right one did. It did a bit, but not as much.

We were told we would get the results in a week or so, luckily we got to go home.

[sneakysparkle]

I don't think I breathed through the entire post!

Wow... hats off again Christy. Can't wait to read the rest xo