Autism Diagnosis Days, 2014

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I can’t write today! I love it and need to blog. I’m tired! It’s very cold outside blowing a gail. Its freezing. It’s been bucketing down overnight. I can’t believe how much actual rain there is and my dear son is going on a school excursion, to the Zoo today, with assistance of his father.

Confusion. “He doesn’t have Autism”!  And the teacher at school is waving a red flag. Get his hearing checked. Go to Speech Pathologist. Go to Peadiatrician. Does he have enough traits to fit the criteria for Autism Spectrum. In the grand scheme of things does it matter? No! This piece of the jigsaw doesn’t fit here. It fits there. No it does not but ….?! You are supposed to do this and you are doing that?! Its ok, I accept my son’s as they are. To be realistic, I don’t understand.  I don’t understand and this is driving me crazy.  It doesn’t fit. My kids struggle at school. I can’t hear. I can’t process.

O rightio! So can you hear me? Yes Mum! But I think you can only hear parts of the words that I say and not the complete word. Is that it?!

The Speechy helps me understand that my dear son only hears parts of words and it is the same for kiddo no. 2. I find out that instructional video’s o “How to..” do things is what is needed. I find jollyphonics. I find many things and some of them are useful.

 

 

 

Autism and Mainstream School Socialization 2013

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I took my dear son to school the first day. This was a small school more suited to my son and prepared to be innovative in teaching we thought it the best suit. The layout of the school was open and the philosophy was what 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!”. I was assured by the principle I had to step back as a parent and let my son develop his own sense of resilience. Within the first couple of days of school he was coming home terrified.

When I went to collect him he would not talk. He cried allot. When I dropped my sweet boy 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 my son to point to the kid that was hitting him and pushing my son’s hat (and his identity/transition object) off of his head.

I was angry. 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. The strategy to address grievances were to  have a buddy supervise 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.

My son was getting teased 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 my dear son 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 my dear son 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 he 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 my son didn’t fit the categories yet? This made it hard for relevant organizations to give a definite diagnosis as my son 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.  My son 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.

The 9 yr old. “I want an X-box!”

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I want to help my children to learn. Am I wrong in wanting to do that? Am I wrong in wanting them to read and write. Am I wrong in presenting alphabet in different forms, holding wooden blocks and rolling them to blend letters, or building playdough letters for the sensory feel or putting letters in the pond and fishing them out with magnetic rods. Perhaps I could bake some letters in the oven, then we could eat them.  LOL!

My goodness, Autism Spectrum means it is harder for them to learn. Maybe I am expecting too much. My husband says “They will do it when they want to!” I guess I am feeling the  comparisons with other kids. “You can do this!” I say. “I believe in you!”, I say. Does it even matter what I say? Do my kids just think that Mum is just saying Blablablabla! I know the 9 year old listens to me.

He gets frustrated with me. He thinks that I don’t understand him. He thinks I am asking him to do the impossible! “Writing is something I am not good at Mum!”. “Practice love. You must make time to practice everyday. My love.”

Right now he is fixated on earning enough money to buy an X-box. “How are we going to do that Mum?” Can’t you just buy one Mum?” “No”,. I say. “I can’t eat a plastic X-box, can I”, “We need to spend money on food!”

“If you want an X-box you will have to earn some money by doing jobs around the house, or wash a car or two or mow lawns/walk dogs etc!” “You could do some writing? Or do a show. Do a painting/Drawing.” We sold the last X-box because there were behavoiour difficulties around it. Why on earth would we want another one. Am I crazy? Do I love groundhog days? I am thinking that if he goes through this process of learning how hard it is to earn money he might actually appreciate the process of having it and using it. He may grow through it!”

Am I kidding myself!

“I want an X-box!”

 

 

 

Grief from Miscarriage, 2009

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Happy. Second pregnancy, happy times. Building hopes and dreams of  baby.  Did I drink too much coffee at the time? I think I remember picking up a pot-plant. I started to bleed after that. 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 must be a bad mother. My loss engulfed me. Anger and negativity. The hormones of a lost pregnancy and  the rebalancing of my hormones. Very tired. Depression.

I vented my grief/anger at my husband who was going through his own grief about the situation.  Where to go to debrief about miscarriage. I did talk about it some people dearest to me that  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. 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

 

Birth of a miracle boy, 2007

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My first son was born in the usual way. Shane and I captured the whole birth on video.  My son 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.

My young son 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 my son 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.

 

 

 

Singing lessons? Martial Art? 2015

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Hello again! I have been trying to think about: “what can my son do with this extroadinary gift he has?

I thought “Well, you certainly get the Autism melt down cry going so can we train your voice into it sounding actually pleasant?” The Autism cry is shrill and kind of like the effect of a mosquito buzzing around your ears when you are really tired and trying to sleep. Raising your panic/stress levels.  Singing Lessons only lasted 3 times but Brian Gilbertson, Opera singer taught DS1 how to feel the sound of his own voice by laying on the wooden floor and humming which is a self soothing technique to remember.

We started learning Piano together so DS1 would strengthen/use his hands. When we play  I hoped DS1 could feel the vibration of the piano strings resounding in the Piano.

I thought “Well, if you must do repetitive actions as a means of self soothing well then lets start Martial Arts, Karate Jitzu. Lets practice your Kata’s every day, lets do it together. This worked for 7 months and then DS1 is on a break from Karate. I am hoping that DS1 and DS2 will start back at Karate.

 

 

Ipad parental controls and Daily chores 2015

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I’m so happy, I went to SERU, the Special  Education Resource Unit. I was shown how to put limits of time on the IPAD. I’ve put parental time controls on iPads and computer and my DS1 knows that he must do chores to earn rewards so he just mowed my Lawn which is excellent for his upper body strength, sense of self satisfaction, also strengthening his hands. Way to go DS1. All good for executive functioning. Mowing the lawn is good, relaxing, chop wood, get on the rowing machine, repetitive movements using energy and build strength.

 

 

 

Miracle Baby, 2011

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Hard work trying to get pregnant. Hard work after they are born.  My second child is born. I am delighted, I know a bit 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 got infected with a bacteria. Antibiotics were needed from the Dr to control this. Tired parents. Afraid that baby would scratch himself so severely. My grandmother used to bind my hands when I had chicken Pox so I would not scratch. In desperation, I bandaged his  hands , and lovingly put mittens on his hands preventing scratch. It was not until another mother said, that it looked like Eczema I was prompted to action. Off to the Dr.

Called the hospital everyday to try to get an appointment to see the specialist. Skin prick tests and more tests and I got creams and lotions. Stopped drinking cow’s milk so it would not come through my milk, started to drink Soy milk. The 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. I wet bandage mummified my baby 20- minutes a day.

My second child was born and did not grow hair for the whole of the first year. What happened instead the hard scabs would grow on his head. 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 this sort of reaction.  With a bit of research I understood it was the bodies protective mechanisms trying to cope with this  skin condition. Wary of Cortizone prescribed by the Dr. Parents at the end of our tether. 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.  He was waking up  between 3-5 times a night with angry dry skin. My friend, who owned a skin care company suggested that I use Avocado oil and Macadamia oil which has the Omega 3 fatty Acid in it that seems to be what my sons 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. 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 be preferable for some.

“No, I don’t want to take my shoes off!” and Sensory Processing Issues

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Annual assessment wit Occupational Therapist.  Son would not take his shoes off when asked to do some standing/balancing tasks! He said he did not feel comfortable to do it so …. He was not pushed to do so and that means???… He was trying to manipulate me (his mother) to buying him an x-box . I won’t buy an X-box. I sold the last one as I thought my son was getting too anxious using it.

I thought the X-box and  computer  raise his anxiety level and he is acting out  content seen on the X-box.  The $400-$600 X-box is not worth it! I remember from times past having to ask him over and over again to turn the computer or x-box off! “Just one more minute!” he would say. There is only so many times you want to say that to your son.