Saturday, March 3, 2012

When your baby is different to every one else's: Cody's Story

Cody's Story & Journey

Cody at a few hours old.
The above left photo was taken when i was approx 6 months pregnant with Cody. He was born at 41 weeks, weighing 8lb 15oz, 54cm long.   His birth was not the ideal birth many people talk about, 17.5 hours of labour, combine with a truckload on intervention and no one actually supporting my wishes. I was a scared young mum ( I was 6 weeks off being 19 years old) and i had people telling me horror stories and that "I would HAVE to have drugs " and when Cody was born I was told "he should have been a csection".... Ah yes support people are awesome aren't they??
I had a failed vaccum suction twice, he wound up being a forcep delivery, i also had a drip in my arm for GBS and apparently it was also to keep my hydrated, i had also been given 2 shots of pethadine and an epidural , because that is what is suppose to happen right?

While i was vomiting and trying to keep fluids down in the delivery room after cody had been born, My partner was feeding Cody (yes i had chosen to formula feed from birth), I didn't hold cody straight away, there i was struggling to not vomit, i was worried i would have to quickly hand him to the nearest person if i needed to vomit. My partner didn't get to hold him straight away either, it had taken just over a minute to resuscitate him, as he did not breathe straight away, part of the cord had been wound tightly around his neck. When I did stop vomiting I asked for someone to bring him to me (I couldnt feel my legs).

When I was transfered to the maternity ward, I was told I couldn't go home before 2 days because I had lost a litre of blood and they wanted to monitor me, incase i needed a transfusion. I also got told nurses would come in to check my many stitches from my 

Cody at 10 days old still in SCU.
So I was put in a room on my own with a baby i was still dazed about giving birth too, I didn't know how to change a nappy let alone look after babies, i was amazed i was allowed to be left alone with this little baby.  During the 1st night Cody developed a fever, so the nurses took a note and started hourly checks on him to monitor him when they came to check on me.

By the early evening the next day, Cody was not well, nor feeding even when nurses tried to feed him and a peaditrician came to tell me my baby was going to go to the Special Care Nursery (SCU) 2 floors down (it was right near the birthing rooms).  When I got down there the next morning I found Cody in a humicrib, surrounded by tubes and lights, things seem to be coming out of him everywhere. All i could think was "Did i do something bad or wrong during my pregnancy? did i cause this?"  I kept thinking only the babies born early are sick not the big full term ones, why was mine sick.

It turned out, after a few dr's explained it to me, Cody had jaundice he needed to sit under the lights to treat it, he also was being fed via drip but they had hopes he would be well enough to feed normally soon, i had to give consent for a lumbar puncture the next day. They tried 4 times before they got the stuff they needed , he had meningitis. They started treatment right away. 

me with Cody when he was approx 7 months old.
At 7 days old, Cody was well enough to try being tube fed via nose tube, a few days after that he didn't need the lights for his jaundice anymore, slowly he was getting better and stronger.  When he was 10 days old , I was discharged from the hospital, he was still in SCU. I had been in there everyday i was there that often the Ob and nurses looking after me knew where to find me if i was not in my room.

Leaving my baby at the hospital tore me in two. I got home and went to my room and cried for hours.  No one knew how to talk to me since Cody had been born, just what do you say to someone when their baby is ill and in SCU? I had visitors come to my room in the hospital asking "where's your baby?".

When Cody was 14 days old, I got the best mother's day present, he was discharged and given the tick of approval to go home. His team of nurses had grown fond of him and seeing me, they joked they didn't want to see us come back as patients anytime soon.

Cody had follow up appointments to check how his progress was going, it was during these appointments, it was discovered he was deaf in both ears. So we had hearing tests done every month to see how his hearing levels were going. 

By the time he was 6 months old, we had figured out why his hearing levels were at deaf level it was fluid on both ears, but he was too small to have any operation they could only monitor it till he was bigger. He developed physically like most other babies, rolling at 3 months, sitting at 4.5 months and by 6 months crawling.  But he lived in a world of silence, he couldn't hear me singing him to sleep at night.

Cody learnt Sign language and mastered signs by the time he was 12 months old he could hold a conversation using signs and by using gestures.  When He was 9 months old I discovered I was expecting our second child.

Cody aged almost 3yrs, Tyson aged 1year.
Cody and I in 2007
When Cody was 15 months old He was given the all clear, his hearing was within normal levels. My baby Could hear! He wouldn't need any operations. He still had appointments with specialists to keep an eye on his development. He was seeing a speech therapist, who taught me how to teach him a few more signs and some makaton, he was not talking.  He also did not like change.

Cody had a little brother born when he was 18 months old. He adored Tyson. I tired going to playgroups and mother's groups to socialise a bit with other parents, but once they had clucked and gushed over Tyson, they would soon move to Cody and when they noticed he was not talking they would ask "why is he not talking?  what is wrong with him?"  I couldn't give an answer, I did not know why my baby was not talking like the younger kids, he knew sign and could talk to me without words was that not enough? I developed a mild case of PND as Tyson started to learn things Cody didn't know how to do, things i had never noticed till Tyson did them, building blocks etc.

Cody was non verbal till 3 years old, no one could explain why he was non verbal, they could tell he understood very well, but couldn't explain why he wouldn't talk. he could follow directions and hear us, he just didn't talk.  I had tshirts made saying things like "Not talking is not the same as being stupid or retarded"  and "I am a good listener i just don't talk much over the top of you" and "I may not speak much but i can dance well", after people questioned if Cody was slow or retarded. yes those were there exact words. His "label "from the specialist at this time was Global Developmental Delay.

Cody at approx age 3.5yrs
Cody potty trained within a a week day and night, we just had to show him once and he instantly knew and didn't need much help. I knew he was clever, but it wasn't till he was in preschool in 2009 and i was thinking of schooling options that we found out how clever, his iq made him not eligible for special schools or to ever have an intergration aide. Yet I knew he needed help.

By age 4, I couldn't take him anywhere with bright lights or crowds, he would scream and cry and cover his eyes and ears. We had his hearing checked and his eyes checked, both came back perfect. for a while he had been putting socks on his hands for no reason, he couldn't explain why he did it, he just did. At this age he was diagnosed with an Expressive Speech delay.

He hated preschool, the class size was 31 children with 3 teachers. The children would spit on him and tease him, he withdrew inside himself for ages, the main teacher wouldn't work with his Early intervention team either. Then i discovered this thing called Homeschooling and knew that was what he needed for schooling, his early intervention team gave my idea the thumbs up. But his preschool teacher was unsupportive of the idea. I had, another child in september 2008, apparently if you have more then one child you cannot homeschool nor should you try according to the teacher.

I did not have many in real life friends, leaving the town i had been living in, was hard as i had become friends with a few mums who went to a playgroup for ASD children, and it was a haven for me, Cody wasn't viewed as naughty or weird there. he was just Cody. 

We ended up moving to Queensland in early 2010. We started distant education with him, he blossomed, the old Cody who loved to learn and smile was back. With the help of the distant ed teachers, we worked out how to teach him some new skills that would help him as the year went on.  I got him linked in with an occupational therapist in 2011, and it was then we got told He had Sensory Processing Disorder.
on the way to australia zoo in 2010

cody in 2011
In Mid 2011, he asked to go to school so after 18 months of homeschooling, he started attending a school not far from our house. it was hard sending him knowing how he had gone in preschool. But his teacher was lovely, she worked with his occupational therapist and other specialists to make sue he did well in school. 

He had made friends with the children in the local homeschooler group and was now at school, making friends with other children, i was proud of how far he had come. 

He is now in a local school, after we moved back to Victoria. (so his second school) and he enjoys it.  

Every day, he teaches me new things, having a child like Cody has taught me so much. Before I had cody I would never have known sign language, or even understood how parents with a special needs child felt. he opened up a whole world to me of compassion and I am proud he is my child. he sees the world differently, and that is awesome.

Cody with his 2 younger brothers Tyson and Charlie in 2012.

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