#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

 

3. Ok, so let’s talk about the #Elephantintheroom: #Poo, #toilet training, #Autismand #Sensory Processing Disorder.

My Kiddo no. 1 did not toilet train  early or before turning 3 years old. Yet Kiddo no. 2 toilet trained at 1.5 years.While he eliminated in the loo he needed reassurrance that everything was alright and he was following the correct way to do it. If you are a parent or caregiver and hearing  “Mum, is all the Poo off my bum?”, “Mum, wipe my bum!” and you know they can do it themselves,  then in our cicumstance I felt this was a Sensory Processing Disorder and part of Autism Spectrum. It was a worry for me because I was scared he was asking and showing people at school or in public and I had to find a way to  fix this. I did it by using a wall mirror in the bathroom so my child could self check. Hopefully this would instill in him a sense of self confidence.

It took me, as a parent, a while to realize that a mirror in the bathroom may do the trick. The bathroom idea was not an idea that had been provided to me by any therapists I was seeing. It was not until aged 7 and a half he was totally independantly toilet trained and he did not ask me those questions. I think Sensory Processing has allot to do with it. I feel for parents going through this issue with their child. I know I felt isolated when I was going through this issue with my son. I would like to share a few strategies that I used  while toilet training my son, which you may find useful.

    1. A corner mirror  in the bathroom so your kiddo can visually see the state of his cleanliness. (So when the kiddo has finished wiping and says  that he still feel unclean and perhaps wiping many more times than he has to. A problem because kiddo may irritate his bottom tissues through abrasive toilet paper, you may run out of loo paper and toilet drain becomes blocked.)
    2. Reading favorite stories to your child while they are on the loo to make the experience of sitting on the loo more emotionally comforting.
    3. Realizing that the kiddo may feel there is material still left on bottom because of Sensory Processing Disorder difficulties. So  an explanation to the kiddo about what he is feeling or some cream may help. The kiddo may feel very frustrated by the whole loo process and not want to go at all.
    4. When the kiddo says “Mum, wipe my Bum!”, Mum says “No, you do it! and the kiddo says “But I forgot how?” you can use laminated compix or photo’s in bathroom for bathroom routine.

Realize that the child could be getting Bum sweat, which possibly could be percieved as feeling like there is something remaing. And also when kiddo gets anxious the body can sweat.

  1. Cartoons are also great instructional routines to set the bathroom routine in place.
  2. Finally, I was right there with him, to help him, and I told him how proud I was of him and then when he looked at me with those beautiful eyes I just repeated the mantra over and over, I know you can do this, I trust you. And it did not work all the time for fully independant toileting experiance. But one step at a time is all you can do.

Toilet training your Autistic child can take a long time, longer than usual and two Autistic siblings can develop at different rates and toilet train at different times. I felt as though I had explained to my son  more than 1000 times how to do it then I realized that by challenging  the Sensory processing difficulty with the his own visual input may be helpful, and it was and we use it all the time. Hopefully this is helpful to some other parents.

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

 

 

 

4. #National Disability Insurance Scheme (#NDIS) and #Core funding and #CB daily activity funding

It takes a long time to get National Disability Insurance Scheme funding.  We have been registered with NDIS since October 2015 and have an NDIS number and yet no planning meeting to roll the funding out for Jack’s therapies. So there may be a number of reasons for this that are bureacratic and administrative. NDIS smay be waiting for the new financial year as reported in the news. Or for whatever reason. We are paying $160 out of our weekly budget every week to get the therapies for Jack that he needs. It’s $620/mth. This is allot of money for therapy and out of the monthly budget. If you are on a low income it’s hard. And it’s allot of driving your kid to sessions here there and everywhere, you can get worn out.

Therapies are also really expensive if you do not have (NDIS) National Disability Insurance Scheme assistance. You have to apply to Medicare Australia. Or sit tight with Bupa Private Insurrance with a %40 rebate. Your local Dr can help you out with a Mental Health Plan entitling you to 5 Medicare paid visits for you or your child. The local Dr can also apply for an MGFP which is a plan which gives you 5 free Speech Therapy visits. Also you can go see your paediatrician who can help by entitling you on a plan 135 to 20 Occupational Therapy visits on Medicare. If you have financial assistance for one child and not the other well you have to look at budget savings. Which is what we are doing right now!

It’s allot of work because  there is a 6-12 month waiting list to see reputable therapists so you have to plan and book ahead. Then you have to co-ordinate therapy sessions with your own working day and the school day of your child.  We have found it too distracting to pull him out of school and then take him back to school in the middle of the day. $ 125/session  Occupational Therapists, $150/session (appprox) Psychologists, $176/session (approx) Speech Pathologists, $55/session (approx) Social group workers and any other recreational activity he wants to do is done in the afternoons so he can get a block of core learning and socialisation at school.

We have also found that we can only manage 1-2 therapies a week per child as there is only 24/7 and the kiddo’s needs downtime.

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