22. Autism and Mainstream School Socialization 2013

I took Zak to school the first day. This was a small school more suited to Stephen and prepared to be innovative in teaching we thought it the best suit. The layout of the school was open and the philosophy was nwhat we liked.I was worried and anxious how he would cope, I can remember saying to him on the Oval ,”I love you. School is an exciting journey, so go run into the field of life!” or something stupidly romantisizing the notion of school.I was assured by the principle I had to step back as a parent and let Zak develop his own sense of resilience. Within the first couple of days of school he was coming home terrified.

When I picked Zak up in the car he would not talk. He cried allot. When I dropped Zak  off one morning he really did not want me to leave him and he was actually petrified and shaking. I could not endure to see him like this. I got Zak to point to the kid that was hitting him and pushing Zak’s hat off of his head.

I was angry and spoke to Zak’s  father. I organized a parent/teacher meet to clear this through school policy. I didn’t realize this was the non verbal behaviour of Autism.  We had a meeting with the parents of the other kid, teachers, our kids to get an outcome which was that the other boy could not play in the schoolyard at lunch and recess time. Zak was to have a buddy supervize him in the yard.

I didn’t even know about Autism per se at the time, I didn’t know that one of the ways Autism presents itself through non-verbal communication. According to us, as his parents, and extended family,  there was no developmental issues for our child. I was busy at home bringing up a new 2nd baby.

I didn’t see the anxious pacing in the classroom. I knew that my son could read very well and was above the reading level of allot of kids his age, called Hyperlexia. But I didn’t know that asking him to describe the book back to me was an issue for comprehension. I wasn’t too bothered about his writing as he was a good verbal storeyteller. I did not see the  blank gazing, that he just did in front of him instead of following task, I didn’t know he was not hearing her instructions. All he heard was a jumbled mismatch of conjunctives because there was a glitch in his processing speed. Things didn’t match up. I couldn’t put this jigsaw puzzle together. I didn’t know that his core functioning was not strong and that this is why he was finding it hard through a weak pen grip.

Zak was getting teazed in the school yard because when he spoke he had trouble pronouncing his “L’s”, “R’s” and “W’s”.  So we had to fix that. Although, Autism is a lifelong condition, you can’t fix it but only work towards passing in public. In the school yard other kids teazed “You sound like a baby!” and Zak would say “I’m not a baaby!” I didn’t know that all he was playing in the playground, was one particular game, “cops and robbers” which the other kids found boring. I didn’t know that Zak would get upset that when he told other kids what to do then they were bored and would not do it.

The teacher took me aside in mid 2013 indicating that there are learning difficulties, I stupidly said to her. “Do you think Stephen has Autism!”,  I grew increasingly upset. The teacher seemed to be indicating this. I cried to the principle in the schoolyard. It was the end of the second term and his birthday I had arranged for the next day at a play cafe with most of his school friends from school and a few from kindy. I didn’t want my children to go through the crap of trying to navigate the maze of disability in their young lives. I didn’t want them to be hurt. I cried on the phone to my dad, he told me to stop worrying and do somethng about it.

So I did investigative work to get a quick result. Little did I realize I had to get a quality diagnosis.  How to pay the $1500 or so that it costs to get a diagnosis, a set of three therapists who concluded that Zak didn’t fit the categories yet? This made it hard for relevant organizations to give a definite diagnosis as Zak was not yet 7 years. Another load of money, he was diagnosed by a speech pathologist and psychologist, Occupational Therapy was sort. Application was made to the National Disability Insurance Scheme to help pay for therapy. Paper, paper and more paper. All the therapies take simply ages to organize as everyone is booked up 6 months to 1 year ahead. I really went into overdrive to try to help my son. Zak was so demanding of my attention and that I do things for him. I found it difficult to focus on my second son, much to my dismay.

Written and Authorised by  Jane Muras, 4 Henry st, Hectorville, SA 5073 Candidate  for Hectorville Ward CCC 2018

 

 

 

 

 

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15. 2nd Pregnancy, Miscarriage, 2009

I was so happy that I was pregnant the second time, you start to build hopes and dreams of what the baby will have and what you hope for the baby. I remember, did I perhaps drink too much coffee at the time? I’m sorry about that. I think I remember picking up a pot-plant and I started to bleed after that. Oh dear! Maybe the pot plant was too heavy. I’m so sorry that I picked up that Pot Plant as what happened was I started to bleed, I couldn’t stop it. I was getting ready for a local market. I was trying to look for a reason that this happened. Its’s ok to cry.

I rang the hospital and they said I was probably having a miscarriage. I remember a great pain  in my uterus, my cervix was opening to let the sac fall out. The body will discard what it does not need. It’s Darwin’s Law. I went to the toilet and my baby fell out or the sac of tissue that  was the start of something new. I was very distressed and this happenned at the same time that my much loved grandmother died, Oh dear!

I remember feeling worthless/like a piece of rubbish/ I was very hard on myself. I thought I was a bad mother. My loss engulfed me and I was angry and negative. The hormones of a lost pregnancy and  the rebalancing of my hormones made me very tired and depressed.

I still remember this and being angry that this happened and I vented my grief/anger at my husband who was going through his own grief about the situation.  I didn’t feel that I could talk about the miscarriage and when I did talk about it some people dearest to me did not believe me. Which hurt allot!

I wanted to scream at the world but it fell on deaf ears. I did have some people to talk to who listened. If this happens to you please take care of yourself, don’t be too hard on yourself, find an association of women where you can share experiences safely. The grief/emotions are hard to deal with. If you feel you are getting depressed, please talk to someone. Be with someone who supports you and know that you are not alone.

POSSIBILITIES OF WHAT TO DO:

  1. Call Lifeline
  2. Call SANDS 1300 0 72637
  3. Get information of miscarriage support services from your local hospital
  4. Research for local support groups at your Local council
  5. Research Bub Hub/Internet for local agencies
  6. Garden
  7. Do something loving for yourself

Written and Authorised by  Jane Muras, 4 Henry st, Hectorville, SA 5073 Candidate  for Hectorville Ward CCC 2018

 

19. Our time warp machine (the caravan)

Holidays

2007 December, Bingara Paternal birthplace and home of paternal Grandparents (Nth Eastern NSW) with new baby

2008 Kangaroo Island (SA) with  family annd step daughter  in car and stayed at Pennneshaw. Saw and heard the penguins and Sea Lions. Cuddled a Kangaroo. Went to goat milking factory.

2008 December, Bingara (Nth Eastern NSW) with family and stepson

2009 Flew to Bingara, with family Stepdaughter for brother in law’s birthday

2010 December, Drove in (SA) York Peninsula, Ardrossan, Moonta Bay, Port Victoria, Marion Bay, Stansbury, The Gap (Vic) visited Maitland, Corny Point, Point Rickaby, Edithborough, Troubridge Scenic Drive, saw the Wind Turbines.

2011 March, Port Elliot (SA) Caravan Park

2011 8th August, Drove to Darwin through Port Augusta, Coober Pedy, Kalgyra, (NT) Ayers Rock Yalara, Kings Canyon, Alice Springs, Tenant Creek, Daly Waters, Mataranka, Darwin, Hidden Valley Caravan Park, Lee Point rd Caravan Park, Free Spirit Caravan Park and then flew in plain back to Adelaide.

2012 12th December, Port Elliot Caravan Park

2013 July, Melbourne to see relatives/friends and Zoo

2013 September, Normanville Caravan Park

2014 December-January, Hay  Plains Caravan Park, Big4 Mildura Caravan Park (NSW) with family and Step grandaughter

2015 Flew to Darwin, stayed with Friends, lived in a Winnebego bus for a week touring Kakadu, fly home to Adelaide.

2016 January, Port Elliot Caravan Park and then drove to Bingara, Byron Bay, Tamworth, Melbourne to see family and friends, flew home with children to Adelaide

Written and Authorised by  Jane Muras, 4 Henry st, Hectorville, SA 5073 Candidate  for Hectorville Ward CCC 2018

 

 

 

13. Birth of a miracle boy, 2007

Zak stephen  was born 19. 07. 2007. Shane and I captured the whole birth on video. Zak was born with both Shane and my mother in attendance with midwife at the hospital. An amazing moment in time where I was listening to a compilation of songs produced by Shane for the birth of his son. I sang this baby out of me, so happy to have this baby although the reality of childbirth at the time involved  screaming. I tried to stay calm and I tried really hard not to push, but my body took over in the end and pushed the baby out itself.

Zak did not like his fingernails trimmed right from the start. I remember his nails growing fast I wondered why and thought it was a newborn thing. I was worried baby would scratch himself so I asked my husband to cut his nails, which he did lovingly. I would not do it as I was worried the tremor in my hands would mean I would cut the nails too short. My baby was so uncomfortable and screamed so loud, it made me distressed and cry. I could not watch. Was this a sign of Autism that I mistook for normal babyhood reaction? I had no knowledge or way of knowing.

Also my baby had difficulty attaching to my breast for breast milk and had unstable weight gain/loss for a few weeks there. He eventually understood the sucking motion.

I was a hormonal new mum, everything that I had lived for was happenning, I was finally a mother, everything that I wanted to be in my life. My baby that I had dreamed of was finally lying in my arms. Produced through the sexual union and love of his father and myself. I was totally amazed.

I remember he had a weepy eye, we thought it may be infected but it was not. The weepy eye did not clear up with anti biotics or other. It was found that Zak Stephen had a blocked tear duct that needed to have a minor operation to unblock. So my son only months old was taken to the hospital when he was months old to have this minor irritation cleared up and thankfully it was all ok.

 

Written and Authorised by  Jane Muras, 4 Henry st, Hectorville, SA 5073 Candidate  for Hectorville Ward CCC 2018

 

16. 3rd Pregnancy #Miracle Baby Jack 2011

#Atopic Exzema and #Crusty Scalp?

It’s hard work trying to get pregnant and its hard work after they are born. 23.4.2011 Jack is born and I am delighted, I know abit more about babies. Right from the very start of my son’s life he cryed and cryed signalling some sort of distress. My goodness sometimes he was like a little red beetroot. His skin was so itchy, he scratched all the time. He scratched his face ripping his skin, it would get infected with a bacteria and then anti-biotics were needed from the Dr to control this. my husband and I were tired. I was afraid that my baby would scratch himself so severely. I remembered one time in my own childhood, that my mother  and grandmother used to bind my hands when I had chicken Pox so I would not scratch. So in desperation I bandaged Jack’s hands , and lovingly put mittens on his hands, so he could not scratch. It was not until another mother said, that it looked like Eczema that I knew I had to do something about it.

I called the hospital everyday to try to get an appointment to see the specialist. My son had skin prick tests and more tests and I got creams and lotions. I stopped drinking cow’s milk so it would not come through my milk, I started to drink Soy milk. Jack drinks soy milk to this day. The hospital Dr said that by bandaging him for 20 minutes a day in wet cloth so the moisture would absorb in the skin would be a good method, so we lovingly did this. I can remember my baby sitting with my all in cloth, he looked like a little mummy.

Jack was born and did not grow hair for the whole of the first year. What happened instead is that  hard scabs would grow on his head which his father and I peeled off in the bath every day. It was visibly distressing to look at. I had never seen it before and didn’t know that babies had these sort of reactions but with abit of research I understood it was the bodies protective mechanisms trying to cope with this  skin condition. So while we were wary of Cortizone prescribed by the Dr  when as parents, we were at the end of our tether, and we didn’t know what to do, we asked the Dr and applied the prescription. None of the natural remedies seemed to control the discomfort of the itchy eczema skin  fast enough.

Gradually over the years the itchy skin has got less and less.  He was waking up  between 3-5 times a night with angry dry skin. My friend, Michelle Tyson from SEED Skincare suggested that I use Avocado oil and Macadamia oil which has the Omega 3 fatty Acid in it that seems to be what my son’s skin needs because he has been sleeping. It’s fantastic.

I first used straight cold pressed extra virgin Avocado oil bought from the Grocery store which I love, but it does have a tendency to sit on the skin and take a while to absorb so it can get on your clothes and linen, which means it stains. Working it into a lotion may b e preferable for some.

 

Written and Authorised by  Jane Muras, 4 Henry st, Hectorville, SA 5073 Candidate  for Hectorville Ward CCC 2018