New shoes! It’s groundhog day!

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New shoes mean allot to us. It’s not simple. Being a child  child with Autism and with sensory challenges is not easy by any means. The shoes have to look exactly like the previous pair because the visual change (in look of shoes) is too much to visually process. The new shoes have to feel the same and of course they are not worn in. So they don’t!

I need the kid to wear his shoes to protect his feet from weather conditions. The kid needs to wear his shoes. Shoes we have bought have always been Velcro shoes instead of laces for ease. Some time in the fit of these last pair of shoes kiddo has decided that he will not undo  the velcro, (which means putting strain on the design of the shoe and increase to its eventual demise)  but slip them on and off such as in slip on shoes. If anyone even tried to undo the velcro of his shoes the result will be that the kid will get upset. And very loud!

Why will he get upset? Because (whoever it is will be changing the internal environment of his shoe). In other words: pressure of shoe on foot will be different. The brand spanking new shoes are lovely and leather and all of $80 which is expensive to us one our budget. They are brand new and do not have the give or flexibility of the old worn in ones. Stephen tried to slip the new pair on. It’s too hard.

The growing foot needs new size shoes at different times. I know there will be an element of discomfort for  him in coming to terms with his new shoes. I brace myself for the eventual marriage of foot to new shoes… It will be a time of transition.

I think perhaps trying new shoes on, and wearing them 10 minutes  every day for a period of a few months until we have realised the entropic nature occurring with the old shoes. We will have to “ride the new shoes “in”. Riding around  the coral enough times to “break in” the new shoes making them submissive and lenient to us. Kick them around bit and soften them up.

It will be a struggle to accept the new conditions but will slowly and hopefully mellow into acceptance and comfortability. Is it the right fit. I mean is the sensory  experience of the foot  in the shoe: just the right pressure. And adjusting  the shoe to the right tightness around his foot….. Wait!….. I think I need to meditate on that one a little….. its all so very zen.

Essentially its a marriage. It may not be perfect but hopefully it may be ok, he may grow eventually to love his shoes. We live in hope!

What do “they” say  about shoes? Some say “Just throw the old shoes away!”! He will have to get used to it. I know there will be loud protestations about that from the young person in question if we so that. I think he loves his old shoes that don’t fit anymore and now have holes in them. It is raining and the old shoe’s have holes in them. Result: wet socks.

Where’s my Nanna’s old sayings! She always had a witty retort to counter harsh words. I need those words to stoke me up now. To get my spirit heated up like the coals in a fire, to give me warmth in this freezing winter.

 

 

 

 

 

Cost of Autism Specific Education

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It is my understanding that there is at least 3400 students with autism in South Australia and rising. The government of South Australia has let the Aspect Treetops Autism specific school use the old Ashford Special School site at a peppercorn rental. The local school zoned in our area means that there are government subsidies available to help pay school fee’s. Does this apply the same at Ashford? Can I apply for the School-card? What subsidies are available to me in my situation? How much transport assistance can I get for my child? Is there long distance education?

When Treetops first began the facts were that you could not go to this Treetops Aspect Special School if you did nott have atleast $232/wk spare cash and thats for 1 child. If you have two children then it was $500 approximately. Fee’s have dropped to around $120 per week per child as of 2019. This is compared to $40 per week for Services and materials charge at the local mainstream school. It’s prohibitive for a large number of Austistic families because they simply do not have the cash.

The thought of HomeSchooling has always been around but not something I have wanted to get excited about! I don’t know it! Although, when I was a kid I did corrospondence schooling for a while. So how much money can I afford out of my budget to send my children to a school specifically oriented to teaching kids on the Autism Spectrum? I am excited about the Satellite Programs the Aspect treetops Autism School is proposing and the Distance education Proposed Program. The issue is how to pay for it?

It seems that the affordability of education equates to class sizes! Am I wrong? Does a kid with Autism who prefers to be by himself need socialization? I think I as a parent need to make our living arrangements bearable for both parent and child.

What happens to a child if they are bullied at school? Bullying and its effects at school have been well studied. Nobody wants that for their child to go through hard times. What is the criteria for entry point to Department of Education Autism Intervention Programs at Blackwood Autism Intervention Program and the Heights Autism Intervention Program, Modbury, Adelaide? What is the criteria for entry to the Aspect Autism Treetops School at Ashford, Adelaide? Would Montessori be good? Tick it off, for a try. What about Steiner education? Not that fussed about it! It can be overwhelming to consider. Do I want to stick my head in the sand about it? Do I have the energy to get excited about the idea?

The school fees at Treetops  have lowered to approximately $120/wk per child. Annual fee’s  are in the order of $7- 10,000 or so PA which may be prohibitive for 90% of ASD cases as it may be more unaffordable for those on lower incomes.  How much does it cost to educate a child in a Department of Education school?

 

 

 

Swimming week 2013

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Another situation: Kiddo at the pool as a part of school swimming week. He wanted me to be there. He fell over and stubbed his toe. It was a horrible mess and flies were attracted to the moisture in the wound. Kiddo  lost it! He was totally freaked out by it! He screamed and shouted. It was almost like those flys suddenly became enormous garagantuan monsters. He was terrified of them.

His eyes huge with fear! He wanted me to do something and I went to help him cover the wound or wash it.

He just screamed.Right in my ear and so much that if I couldn’t do this or that I would just take him home. I swept him up in my arms, dumped him in the pram aside his baby brother as Kiddo so upset he wanted to be carried. I drove them both home in the car, me so very angry because I was totally confused as to why my son was not doing what the other kids did. I did not understand.  I could not control how he was feeling or what to do about it.

I needed to look after him as if I didn’t then who would.

 

 

Autistic Meltdown, 2014

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Another mother thinks my dear son 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.

The prospect of my son’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 my son! 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 my son did not have Autism because as previously stated in the post of 2013, where the therapist (referral from  the Dr) said my son 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 my child 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 my son is to go school outing, for a walk  at Morialta Falls, and its a very cold morning. He has done it heaps of times before. He is used to it! 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:  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 with my son!? 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.

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.

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.