24. #AutisticMeltdown, 2014

Another mother thinks Stephen needs help while we are on our walk at Morialta Falls and intensive support at school. “Thanks for sharing your opinion! Grrr!) I’m annoyed and upset, I was angry and I wanted to the person where to go,  but I can’t be rude!!! Maybe, I should get some guts!! And I should be. I have got to stay positive.  I am already defeated. But in the end I’m pathetically thankful because she helped me investigate how to afford the financial help I’m going to need for therapists. The idea of the paperwork associated with Disability/Learning Difficulty services/getting the help was something I did not look forward to. I don’t believe how hard life can be at times! I feel that this is unfair. I want to so much stick up for myself and my son. I feel defeated!

The prospect of Stephen’s Autism diagnosis scared me when I was dealing with health issues where my own mother (Nanna) nearly died of a pulmonary embolism in the aortic valve of her heart. My own father  (Grandpa) arriving  on my front doorstep in July 2014 literally with Renal Cell Carcinoma Stage 4 and no supports in place. I went into complete overdrive to get them supports. I used my social work nous. So the grandparents got attended to with appropriate housing found. So  thankfully the grand parents are fine and kicking on!

I wanted to believe that everything was fine with Stephen! I wanted to support and love and be proud of my son! My husband says, “In the grand scheme of things …. yadayadayada…!” I wanted the happy moments of mummyhood! I chose to believe Stephen did not have Autism because as previously stated in the post of 2013, where the therapist (referral from  the Dr) said Stephen did not fit the criteria for Autism. The teacher at school waving her red flag! I can’t stick my head in the sand! By 2014 he had developed enough noticeable quirks to fit the diagnosis of Autism. Quite a few different opinions about what is up with Stephen from family, extended family, therapists, and members of the public. I was trying to find answers. They did not help. Go with my gut as this is my child.

This morning the schedule is Stephen is to go for a walk  at Morialta Falls, and its a very cold morning. He has done it heaps of times before and he is used to it, so why should anything be different! (He is used to doing it with his family and not in a group context!) Did I understand this before he went on the outing! NO!

Another over the top behavior: Stephen  screaming/crying because of his cold hands or maybe it is because he thought his hands were turning blue. Is this Alice in wonderland movie? I can’t ignore it! “Rub your hands together my love!”, but he would not. I show him how to do it! I rub his hands for him and cover his hands with his sleeves by pulling them down.

He could not understand that he would create warmth in his hands by doing so. He was lost to his meltdown. He would not even try! I was annoyed! I can’t ignore the magnificent exhibition of behavior and something must be done, some calming strategies. My Yoga upbringing all out of my head.

Should I take him from the group. Should I just let him be miserable on this walk and alone/suffering and is taking him from the group going to set up an expectation that if he gets upset like this he will do it every time he wants to exit a situation. This is not a good day! I want to rewind. Should I just say, “That’s enough!” and take him home? Everyone in the group, on the walk avoiding him because they did not know how to deal with it. Another mother offering some help. I felt so alone. “What is wrong Stephen!? I am feeling like a completely incompetent mother because I, as his mother, can’t contain his meltdown. I have an Aquired Brain injury and am feeling very incompetent because of my history. What to do? I took him home in the end.

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

 

 

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23. #AutismDiagnosisDays 2014

I can’t write today even though I love it and need to blog. I’m tired and it is 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 Zak 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 because Zak and Oscar are my sons. I accept them 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 Zak only hears parts of words and it is the same for Oscar. 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.

 

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

 

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