26. #AutismandCostofSpecialEducation

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?

The facts are that you can’t go to this Treetops Aspect Special School if you don’t have atleast $232/wk spare cash and thats for 1 child. If you have two children then its $500 approximately. 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 are in the order of $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. $200 per week for 1 child. How much does it cost to educate a child in a Department of Education school?

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#AutismSiblings, Dec 2014

By the end of December 2014, Stephen’s speech pathologist (who has witnessed and experienced Jack’s behavior on the occasional routine visit with Stephen) says that I should have Jack assessed for Autism as well. What types of Autism? Do you mean a “Classic Kanner Autism”? or a “Low functioning Autism”, or a “High Functioning Autism” or a “Savant”???  or “PDD NOS”. Oh yeah baby! That’s a classification that is Not otherwize specified. It means a pervasive Developmental Disorder not otherwize specified. The categorizations are changing in the DSM 4, to the DSM 5, (Diagnostic Manual). I have many questions and not many answers, or  everyone has a different opinion according to their values and philosophies and modalities.

What! I don’t believe it. Jack is only 3 years old. How can you tell? I speak to his father who basically is incredibly protective of Jack. My husband doesn’t like the Speech Pathologist saying that she is trying to ” push her own agenda”, my husband is very critical of the whole Autism diagnosis idea. “The child is the way he is and if everyone else doesn’t like it, well to heck with them!” “How does she know! He’s just being a kid!”, and “They all develop at their own rate!” Both of my husband and myself still trying to come to terms with Stephen’s diagnosis let alone another one for Jack. I can certainly see a price tag attached to an assessment process.

I had read a few books about Autism. I knew what the debates were, or I thought I did. One was being around the vaccinations and whether they caused Autism, Jack was due fo a vaccination and me wary of  motherly discussions around the issue. I told the Dr of my worries and that if Jack had the Autism Gene then it might make him more susceptible to an Autististic onset.  We vaccinated anyway because I thought “Autism is no big deal for me! I can handle this !” It would protect him from more serious conditions.

I remember taking him back to the Dr’s and he licked the wall! Honey, Don’t do that. You might get sick! How curious was that, Holy Moly. “Jack, my love! Don’t lick  things in the Dr’s rooms.” I can remember wanting the kids to be still, instead of investigating  what Dr’s got in his draws, his patient bed and stethoscope. Holy moly! We need help on how to pay for therapy for both my sons. Dr we need help. Therapy takes a long time to organize. There is allot of paperwork. I need the National Disability Insurance Scheme as well. Therapists charging at an agreed fixed price, Speech therapists and Psychologists at $167.13, Occupational therapists around $125, Social Skills groups and the list of therapies and sensory toys goes on. They all cost a lot of money.

 

 

25. Swimming week 2013

Another situation: Zak was 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. Zak 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 Zak 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 1. doing what the other kids did. 2. my son would not let me look after him. I needed to look after him as if I didn’t then who would.

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.

 

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.

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.

 

 

 

 

 

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.