12. How to survive on a camp trip with Bear Grylls

I remember we had just got back from camping for a few weeks at our favorite camp spot by the beach. And we hauled up ther caravan. And Stephen went off to play with some boys. I grew concerned and thought I should go get him but was busy so left him to it! He would be fine. He came back very upset. Stephen didn’t know the social rules of engagement that no-one really tells you about but are implied. He had been playing with some boys in a cubby house. They had called him names that he did not understand or probably hear correctly. So we, as Mum and Dad,  had the parent talked to our son. “Everybody has different bodies and different brains Stephen, my love”, “Everybody is different”, “Nobody is the same yet everyone wants to be the same so as not to look different!”, its a very strange concept and hard to understand. “Don’t worry about it love!” “Go have fun! Enjoy!”, “It does not matter!” But all Stephen wants to do is sit in the caravan and watch DVD’s of Bear Grylls Survival Strategies and other favorites. Its predictable and safe and he knows the script, he doesn’t have to second guess what they are saying. Its a “How to” visual manual.

So we have a fun holiday. But when Stephen gets back home from holiday. I am trying to execute the rules and new reorganization of things to do in the house to make things simpler (What a joke! As in the short term, change made things very difficult!) which means limiting the amount of time on the computer to one hour a day. He used to have unlimited but this is the ideas espoused from therapy. Stephen hates it! My husband hates it and finds it hard to stand Stephen’s discontent! I’m getting screamed at my son for changing the rules. “Why can’t I go on the computer Mum! It calms me down!”. My husband can’t understand why I am listening to the therapist or doing anything she says. Stephen is storming around the house slamming doors, many times. Turning the TV up loud. What the Hell! is going on honey! Talk to me. But he can’t cause he doesn’t have the words. Did I know that? No! This is confusing !

In conversations with the therapist, who suggests my husband is on the Autistic Spectrum himself! So….. This goes down really well with my husband! This is something out of Monty Python!  He’s like, “Oh so this is blame the parent! Is it?” What to do. We all just laughed! It is one possible explanation of Stephen’s and Jack’s behavior. Is it Dad’s fault? Is it Mum’s fault? Oh dear we live in a society that loves to lay guilt trips at the door of the parents. “I’m digging a hole here!”. “I just want to put my head in the sand!”  like an emu. I’m no refrigerator mother. Either my husband or myself have held the child physically on me ever since he was a baby. Oh dear! It’s a painful process. I’m currenty doing a visual family tree.

What I did:

  1. Go for a walk with the dog, in the bush.
  2. Try to talk to other mothers
  3. Research support groups
  4. Facebook has a wonderful group called High Functioning Autism (HFA) – parent support group
  5. Local support groups in your council area, check with your council
  6. Your local council may have a disability/accessability committee
  7.  call AUTISMSA
  8. Local Dr

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

 

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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.

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