Meeting Matilda....Meeting Autism

[christy]

Okay so because I love Maz so much, and imitation is the best form of flattery.... I'm going to cut & paste what I've been writing lately.

Today (Tuesday June 14th 2009) we went to another behavioural paediatritican appointment. Once again we had to start from the beginning. Starting from conception. DH and I decided to write it all down, so we don't have to endure the emotional outpouring that has to happen with every new appointment we have. That minute of silence where we look at each other and breath. Neither of us wants to start, neither of us want to say anything negative about our child, neither of us want to cry (yet we are both clutching tissues), and neither of us want to hear that we are bad parents.... again.

So the beginning....The first year....

I was having an ultrasound on my breast, the lumpy one, to check and make sure it wasn't something scary. I found out that I was okay, so I grabbed some chocolate and wine for a celebration at home. 3 weeks later, I was pregnant. I had yucky morning sickness. I lost 7kg in my first trimester, and was vomiting until 23 weeks. I felt pretty miserable. At 40 weeks, my ESTIMATED due date, I went for a drive up the mountains with my mother in defiance of DUE DATE. At 42 weeks, I was pacing the floors going over all the lists again on what I could try and I tried castor oil..... nothing. The next day I went to the hospital for an induced labour, unfortunately baby moved off my cervix so they wouldn't do it. The next day they suggested a caesarean, I refused and was induced the next day. After 20 hours of labour, with which the last 6 hours were stalled or stopped, I had an "emergency" caesarean. I was traumatised by the birth.

Matilda was perfect. She was not distressed during labour, and had apgars of 9 and 10.

At 6 days old, Matilda started screaming 6-7 hours a day. She slept at most for 30-40 minutes.

At 6 weeks old, she was diagnosed with reflux. We choose to medicate her as per the GP and later paediatrician's advice.

At 7 weeks she started smiling.

At 10 weeks old we went to sleep school as she still only slept for 45 minutes. We were told she was a difficult baby. She started rolling this week. She also starting having more severe reflux as she was screaming more.

When she reached 16 weeks, she was still sleeping for 45 minutes at a time, but overnight started sleeping for 90 minutes at a time. I developed PND and began medication.

At 20 weeks, we were advised by paediatrician to start weaning and start formula as the reflux was not responding to medications. I tried to express and thicken my breastmilk prior to feeding but my supply dropped tremendously. This was the age Matilda started commando crawling.

5 months, we commenced weaning. She refused to be fed while being held. We had to put her in the pram and hold the bottle for her. We were not allowed to cuddle her without extreme screaming.

6 months, Matilda sat up unaided and began crawling normally. She was on solids and entirely weaned off breastmilk. 2 weeks later, I tried unsuccesfully to relactate as it obviously wasn't breastmilk causing the reflux and the thickened formula wasn't helping that much. I wasn't successful because breastfeeding meant holding Matilda, and that wasn't something she wanted.

At 7 months Matilda said her first word "Hello" Yep thats right, not Mummy or Daddy, but Hello....

At 9 months 2 weeks Matilda stood up and walked down the hallway. She did not stumble, but stood up and walked.

At 11 months I realised that having 4-5 sloppy poos a day was not normal, and loosing weight wasn't a good thing.

So in the first twelve months, she reached some major milestones in regards to movement. But she hated to be held. She would laugh and smile and try to interact with people, but hated to be held and still screamed 4-6 hours a day. It was hard to work out what was going on, but I knew I wasn't able to go anywhere like shops or loud places without the next 2 days being full of screaming. She still woke 4-5 times a night and took an hour each time. To say it was tiring would be an understatement.

We went back to sleep school.... To be continued

[rufalina]

Thanks for taking to time to put your story out here for us too. It means a lot to me that you are willing to share and show us a family life so different, and give me an insight in your world.

[Epacris]

Hooley dooley, wow, what an amazing creature you have there. She did very well to choose the most amazing, kind and strong parents to help and guide her through her life. Thanks so much for sharing her story so far.

[~Saram~]

Christy - good on you for getting it down on paper. I look forward to reading the rest of your and Matildas story.

[LoriRae]

Christy, this is so interesting, thankyou for posting it. I'm very interested to read the next part of the story too.

[christy]

12 - 24 months

We went to sleep school at 13 months, as we were up for 2 hours everynight between 2-4am. She also screamed daily up to 6 hours. At this time, we did a series of blood tests, urine tests and faecal tests checking for immune issues and anything. She was loosing weight and we worried about lactose intolerance. Matilda was not lactose intolerant **see her 3 yr old history!** and there was no obvious reason for her loosing weight. She was considered a candidate for Failure to Thrive.

At 16 months, Matilda was sleeping better, and putting 2-3 words together. She also developed a past-time of holding her breath until she passed out. She started the first time at 16 months, right after I told her that she was not allowed to climb into the oven.

At 17 months she developed roseola, and had high temperatures for a week. She did not have one tantrum the entire week. She had minimal screaming, she watched TV for 15 minutes, a record for us.

At 18 months she was regularly breath holding if told "No" or "uh uh". She also started running into corners if she disagreed with what I said. She would run, head first into the wall.

DH & I went on a waiting list for parenting workshops for Triple P. I attended a "strong willed" child seminar.

At 19 months we were all sick. Bronchitis. Matilda was sick with temperatures again and again, no tantrums or screaming. I was pregnant with DD2.

20 months, we began Triple P. We met fortnightly with a social worker learning how to handle behavioural episodes. We did this for 8 months. Matilda never responded to any techniques trialled.

At 23 months, we were once again up for hours in the middle of the night. Matilda would cry, or scream or laugh for hours....

So ends or time until 2 years. Matilda was often bruised. She'd also endured 4-5 bouts of tonsilitis and 3 times of ear infections during this year.

ETA: at 18 months, Matilda was obsessed with the oven. She used to scream and tantrum everytime I refused to let her climb in the oven. She often did her breath holding exercises at this time, and this made me phone lifeline and other help lines to understand what I could do.

[Mummykins]

Thank you for sharing your story. It must be so difficult getting it down.
I look forward to reading more.

xox

[*becstar*]

Same, I am waiting for more too, Christy. Much of this was going on when I first joined BB when I was having trouble with DD sleeping, and you were with Matilda.

Mum's with SN kids are true troopers. It's tough, but you do it because you love them.

xxx

[Pony]

I feel exhausted just reading that. You're both amazing parents. I'm always impressed by the grace with which you handle difficult times.

[jasp]

wow... it's so good of you to share this.. I look forward to hearing more of your story.

[bjrose]

goodluck getting it all out.

[ajm mum]

Thanks for sharing your's and Matilda's story.

[christy]

I've been writing a lot of facts down because this is what the doctors want to hear, they don't want to hear how it affected us emotionally.

I can say DH & I can't remember much of the first or second year of her life. I can remember nights when we would sit in bed and cry together while she was screaming for the third or fourth hour. I remember sitting on the floor next to her room sobbing while she screamed inside because I had just held her and rocked her for an hour & she just screamed & arched her back.

I remember feeling worthless as a parent, fragile as a person, and devestated. My little girl hated being held by me, wouldn't cuddle.... and then would smile these beautiful amazing smiles.

I would sit in the GP's office and be told to smack my 14 month old, or that I didn't have "control" over her. I was told to put her in day care full time as she was a difficult child and it would be easier on us. I was told NOT to have anymore children as I obviously couldn't control this one. My family told us that we were too hard on her, but should smack her at the same time . We were a mess with trying different things. That is why we did the Triple P thing, so we could do the same thing at the same time for a while to get our parenting on track, so we could say "we know what to do next". We started sitting on the end of her bed so she would have us there with her but wouldn't be holding her and she fell asleep within 45 minutes which in itself was a major miracle.

I lost nearly all my friends where we were living. No one understood what I was going through. Everyone offered parenting advice and told us what we were doing wrong, no one, offered to come and spend time with us to see what was going on. DH & I walked around like zombies for a few years there. We were used to being very social with having people over and eating out etc etc, but no one wanted to come over when they had to listen to screaming the entire time. No one wanted to watch how it affected DH & I. We had a few friends who came and I think that was what saved us.

When I got pregnant with DD2, our focus split into birth rights as well. We had a doula and did calm birthing (but we had to have them come to our house as we couldn't leave Matilda with anyone for 2 hours over 4 weeks). I found the calm birthing helped me calm down and relax during the screaming and I would put on my ipod and sit and try to breath.

[christy]

I forgot two things!!!

At 11 months, Matilda was moving chairs to doors and climbing up and opening the doors.

At 18 months, she climbed her first 6 foot fence. It was a wire fence.... there was someone at the other side.

[~Trish~]

Wow Christy, I don't know what to say apart from - you are amazing! I don't know how you got through the first two years you have described so far .

I really look forward to reading more, it's so good for you to put your story on here to give us all a better understanding. I hope putting it all down helps you too.

[~Raven~]

[Astrolady]

Oh Christy I remember you posting about the first time she climbed the fence, and doing so many other things that you have mentioned. It is like all your old posts have come flooding back.

[Santosha]

Christy, thankyou for sharing this with us. What an amazing resilient Mum you are. I can't imagine how tough this has been for you and DH. I'm finding just the standard level of baby wailing and night waking tough enough. I so admire you for working through what has been a far tougher journey than this and I'm so glad that amidst all the screaming, you've had some 'beautiful amazing smiles'.

I look forward to reading more about your amazing family and your beautiful girl.