#Sub categories list

 

53. Autism and Problems at Mainstream school.

52. How did the kid learn to read so early?

51. Autism: Sensory Processing Disorder and Socks!

50. Murphy’s Law! Today: It’s ones of those days!

49. Autism Siblings.

48. Writing for writing’s sake!

47. Car Troubles and Laughter!

46. Comedy Radio, Laughing and walking to school!

45. Mum! Stay still I am putting a chip up your nose!

44. The 5 year old.

43. Let’s take our Xbox controller to school!

42. Autism and the 2 km walk to school!

41. Where is the demarcation line?

40. My son wants an X box!

39. Life in another Language: Auditory Processing Disorder.

38. Drama and the kiddo!

37. Don’t Let The Bastard’s Get You Down!

36. Useful Bedtime techniques for our kids.

35. Laughing and a loving family life.

34. Calming ideas for a stressed out kiddo.

33. Respite for Parents.

32. Feeling Isolated, Parental Depression, Feeling overwhelmed!

31. Autism: Clothes and Socks.

30. We have to trim your nails: “No Way Mum!”

29. “Can we wash your hair?”

28. Autism: Gloves and Bandaids.

27. Autism: Shoes, Socks and Clothes.

26. Cost of Education and Autism.

25. Swimming week 2014.

24. Autistic Meltdown 2014.

23. Diagnosis Days 2014.

22. Autism and School Socialization.

21. Why? Why? Why? Diabetes 2!

20. 9 yr old. I want an X Box.

19. Real life experience in the caravan.

18. Singing lessons? Martial Arts?

17. IPad Parental controls and Daily household chores.

16. 3rd pregnancy: Miracle Baby Jack.

15. 2nd Pregnancy: Miscarriage.

14. “No, I don’t know want to take my shoes off!”

13. Pregnancy no. 1: Birth of a miracle boy.

12. How to Survive on a camp trip with Bear Grylls!

11. Understanding signs and symptoms of Disgraphia.

10. “New Shoes! It’s Groundhog Day!”

9. Useful resources: Autism Support Groups/Reference books/films.

8. I am so proud of my Autistic son.

7. Autism and bedtime techniques.

6. Law mowing and being tired!

5.Writing therapy for parents.

4. National Disability Insurance Scheme (NDIS) and coordinating therapies.

3. Ok! Let’s talk about Autism, Poo, Toilet training and Sensory Processing Disorder.

2. Ok, let’s talk about Autism: Fixation and Obesessive Compulsive Disorder.

1. A full on Meltdown: I did not expect!

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

 

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53. #Autism and problems at mainstream school

It is my underwstanding there is approximately or more 3400 children with Autism in South Australian Schools.  More than 50% of children and students with Autism are enrolled in a school without a  specialist unit or specialist education teacher. The Department of Education policy for a mainstream school is to have  between 21 and up to 36 students per class with one teacher and a school services officer.

I am feeling raw. I feel like I coudn’t organize a chook raffle! Things are fraying around the edges. I’m starting to get cynical.

What is the bigger message here on the grand scheme of things? Is it to learn to fit in, so the societal machine keeps working? Is it that you have to learn how to deal with your sensory processing issues or else? Or is it that you are doing something if anything so you can fit?

My darling 5 year old child having trouble at mainstream schools. It’s not the child’s fault. It’s not the teacher’s fault. It’s not the principal’s fault. Class sizes and the price tag associated with educating your child is a systemic problem. 5 years old. Autism Diagnosis. There is a policy of inclusion in mainstream schools but can schools provide if resources are already stretched. If classes are too big. If there is not enough attention given for the child with special needs. Is it because of money! I am Mum and advocate for this little Dude!

Do I park money with a limited budget myself, to start a treadmill of tests which will tell us what? Haven’t I done this before?  I take him to get his hearing checked. Heavens above! What good will that do? It’s all a matter of  perception. A two day suspension disrupts the life of a busy/stressed special needs parent. The little treasure says he gets bored with what the teacher says. So he wanders off. “Be where you are meant to be” is the mantra repeated at school.

I’ve told both of the kiddo’s if there is no school duties for the day/ then there is home duties. As a deterrant! But it seems to be a sweetener!

Each child has a bucket and they put a rocks in bucket for duties completed. A certain number of completed duties. Then they get some free time. Who is familiar with this positive reward training method? Wash the dishes. Wash the clothes.  Mow the Lawn,. Take the rubbish out! Thanks kiddo!

Turning myself upside down and inside out to try and make things fit! They don’t. Trying to do all the different suggestions from respective therapists. I’m worn out! Where is the coffee because I am already tired of this crap!

Occupational therapist ($120/wk) says that his sensory needs are met at home as the house has been turned into a play sensory gym as much as possible. Pay more attention to his emotional needs. Well, kiddo is telling me that he hates going to school. How do you deal with that little pearl?

I feel as though I am walking through quicksand! What to do? I guess, we will find out his hearing level from the audiologist ($80 one off appt). Oh yeah, we have to get an IQ test ($100-300 one of appt). I feel as if I’m sending therapist on a holiday to Accapoco. I’m already doing the $167 Psychology, Speech Pathology and $57/wk Social Skills group. Therapy costs a fortune.

It’s Mum’s taxi, on steroids, driving them to this that and the other. Where’s all the money for the petrol coming from! Hold on I’m losing the plot, doing all the driving, here there and everywhere. Co-ordinating school and therapy timetables making sure that therapists all talk and understand the plan of action. I’m not even sure what the Plan Of Action is but I am doing as I am afraid of not doing anything.

The kid is very smart. He is starting to snort like a horse over the last month or two. I have a little trotter running around the house. I wonder if I did assemble a race track around my house if that would do us any good.

I make a booking at Dr’s because maybe he has some difficulty with ears, nose and throat. Knows how to work the teachers. Knows how to not follow the rules of engagement by dancing on the cupboards and table-tops. Knows how to not do what one is told.

Parent: What is the matter child? Kiddo: I don’t want to go to school. How do you tell a 5 year old that they cannot stay at home all day. Chores or else! No problem Mum! It’s a joke! How do you tell kiddo in a way that he understands that as an adult you need to look after yourself/ have time for yourself to exercise/knit/do your thing to stay healthy for them? And also most importantly stand up for yourself.

The 5 yr old kiddo is abit easier to get out the door than his brother. Both anxious when they leave the sanctity of the house. He does not pick up on the rules of engagement. He doesn’t see the social cues. He finds it difficult to understand that the things he does at home, generally, he can’t take transition objects to school. He doesn’t have any emotional attachments to kids or the teachers to make him want to go to school and want to be there.

 

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

 

28. #Autism and #Sensory Processing: #Gloves and #Bandaids

Dear Mums! If you think bandaids and gloves are a good idea to cover hands: think again as the glue on the underside of bandaids can irritate kiddos skin if left on too long. Leaving gloves on can also make hands sweat depending on material of glove. The kid does not get the sensory input from using bare hands.

My experience  with my kid is this:  The kid would have a minor abrasion on hands or other body parts and a bandaid would have to go on to cover. This happened again and again until we were going through so many packets of bandaids. Kiddo would not like to take the bandaids off either but preferred to leave them on. So: doing regular maintenance health check Mummy notices the bandaids are getting old and dirty and there is quite allot on the kids hands. This was not a good look. I find out that the bandaids are there to cover minor scrape and falling injuries (nothing to worry about but very) hyper painful to the kiddo. Mummy also notices that skin is peeling and irritated redness on fingers underneath the sticking part to bandaid.

Being a kid with Autism and sensory challenges is not easy by any means. The bandaids are kiddo’s attempt to armour himself (with bandaids) against an abrasive world. I understand this, but also not wanting the bandaids to get out of hand and turn into a fixation or Obsessive Compulsive thing I limit supply of bandaids. I’m also “caught between a rock and a hard place”  because I don’t want to injure a developing self esteem and self preservation ideas in kiddo.Its a double edged sword. I look for alternatives. I think, well its cold and winter is coming on and the obvious solution is the wooden gloves for winter.

I thought it was a great idea . So kiddo wore them everywhere, at school, at home, to bed. The hand was warm and protected in the glove. He was happy. I thought it was a great solution until  I realised that getting the glove off him for washing was going to be a big deal. We eventually worked out that I was to wash the gloves at night when he was in bed. HE was to take gloves off while in bed to let the skin on his hands breath. If I didn’t wash them at night then there would be problems.

If you are going down the glove road with your child just beware that if the fabric of the glove is made of a polyester or polyfibre then your child’s hands are more likely to sweat underneath. This can be a breading ground for bacteria leadings to infections if not properly maintained.

To avoid this hand sweat thing kiddo would clap hands and demand that Mummy blow dry them at a certain place in the house many times a day. I got sick of this quick as it became time consuming and not functional in the daily routine. I tried to envisage myself doing this routine for a long time and I just did’t like what I saw. So that moment, I just said “No I am not doing this any more!” I got all the pairs of gloves from that had accumulated in the house and I drove to a bin somewhere, I don’t know where, and I just dumped them in the bin and went to my piano class. I did this in full view of my kiddo so he could see there were no more gloves ever to be in this house again. Kiddo did not like it one bit.

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

 

 

10. #New shoes! It’s #groundhog day!

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 Stephen 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 am bracing myself for the eventual marriage of foot to the internals of the 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 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.

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

 

 

 

 

26. #AutismandCostofSpecialEducation

It is my understanding that there is atleast 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?

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?

 

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

 

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