33. #RespiteforParents

My husband thought getting the children looked after by anyone else was a no-no.  But certain organizations can do in home help/care. So that is great and preferable to me  and DH. It took a long time to organize.

At the time I had just got accepted to the National Disability Insurance Scheme so was pleased to be able to take my son to the Occupational Therapy and Speech Therap/Psychology that he needed. I spent allot of time driving the kiddo to alot of appointments plus home duties and school. DH was at home looking after the younger son.  I remember that DH got ill, some atopic virus that no-one knew anything about, and had to go to hospital, I remember my Mum was just out of hospital for a serious issue. And a few months later my father was to be admitted to hospital for  cancer.

While I called around and kept on making repeat phone calls to ask for appointment times some agencies weren’t prepared to do respite with Autistic kids. Either they don’t have the training for it or they are just not set up for it.

When I finally did get some help organized it gave me a few hours where I did not have to worry about the children. Where I could do something for myself.  Finding good carers trained in Autism is hard, when you have a good one, you don’t want to give them up easy.

My husband and I thought sending the children away to a variety respite house was too weird and uncomfortable, it’s too out of our parenntal control. We can’t see the children or check up on them. So things are good at the moment.

Autism Respite assistance:

AutismSA respite services, has a respite house and does in home assistance

Anglicare also do in home assistance and have a respite house for short stays and they have school holiday programs.

Domestic help with DirectCare who also do in home assistance

“MyTime” for Parents support group funded by Australian government, eTrinity Gdns group on a Wednesday morn

Carer Support agency has Parent Support group once per month

 

 

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

 

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32. Are you an #AutismParent and feeling #Isolated, or #Depressed, or #Overwhelmed?

Don’t you hate it when you get up in the morning. You did not sleep that great! And there is this piercing/jabbing pain by your right shoulder, and when you raise your shoulder blade to test it out ouch! Oh I need to do some movement exercises I need to get a wheat bag on that. I need to take a panadol for that. And you don’t because you forgot because you get up and do the regular motions and all the time there is this niggling pain in your shoulder.  You have to go through the action sequences of morning routine w/time management skills too! I’m thinking maybe my shoulder is linked to Tennis elbow, hell! I don’t even play tennis! But you know I had the same thing before when I was only carrying my baby so ……yeah! Chew on that!

Wow! I have been down in the dumps about  how hard it is  being a mother of two kids with Autism.  I have felt like a robot. And I was just going through the motions of daily life because I had to keep things going. While I wanted to fall apart and just stop! Trying to keep my ship afloat with all my family in it. Trying to keep the bills paid and buy the food as well as get the petrol for the car. Trying to encourage my children to actually be social and play with other children. It has taken some time. Or even quite possibly be on time to school, which much to the kids credit they do try hard to do what I say and we are at school, on time, allot of the time. There just does not seem to be enough time. Does this cycle ever stop!

And it is nobodys fault there is no-one to blame or thank for my hardship! I decided to have two children and was lucky enough to be able to. It’s just bloody well hard.

Rushing out to the shops to buy groceries or  trying to fit in picking up wood from the woodshop for the fire inbetween drop off or picking the kids up from school and something else! Always having  one million things that could be done. Being tired, needing a rest but not being able or feeling able to. I prefer to do the shopping by myself as when I take the kids they always want something. I don’t have enough money to buy anything in the shop for them.

Not being able to get a goood nights sleep because the boys Nanna or Grandpa are having health issues and hospitalizations or clinic appointments. Or Hubby has gone to hospital for something. The support base is crumbling away from me at times. What to do? Well I recognize that we all need to take care of ourselves so I got respite care services in to help.

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

 

 

2. Ok, so let’s talk about #AutisticFixation or #ObsessiveCompulsiveDisorder

My son finds it hard to get out the door to perform the daily routine. It’s hard for him. He gets physically anxious and repeats a number of rituals before he attempts to cross the thresh-hold between inside and outside of the door. Is this a Sensory Processing issue or Anxiety or a bit of both? Once over the mantle of the front door Anxiety spikes. From my observations the rituals  seem to be re-enactments of the Pixar movie called “Wally”, where when Wally wanted to leave his trailor he went on top of the roof and opened himself out bearing his chest and arms to the sun to get energy from the sun ie a solar battery. Our trailor is our house. And yes he would get up on the roof if he could, he loves it up there when he gets a chance.

This process does take some time and can be complicated by his little brother, who when feeling mischievous little brother knowingly upsets the door routine, the result is “Oh no! Now I have to do it all again!”. I can feel the clock ticking cause its time to go to school but I also understand that if he does not go through the beginning ritual then he thinks “Oh no! I’m going to have a bad day!” and although I point out that things are changing all the time and nothing stays the same it doesn’t matter. He is fixated in his head that he will have a bad day . I point out that good and bad things happen all the time and whether or not he does the ritual does not make bad things happen. Doing it makes him feel better! To cope with a day at school filled with variables that he can’t control.

Its’s hard to see him go through this but this physical action that he seems to need to perform for self motivation to do something seems to be what needs to happen and time just went out the window.

Sometimes he will not go in the class room or into a door, or he will not move and demand that other people do certain things and when told they will not do it, he just stands in one place barking orders! Also he seems to need to walk/pace in school class, this is a sign of coping with anxiety of being at school, or learning. He does not sit down sometimes at school.

When he fixates on some idea that he just can’t get past I question him and say “Are you fixating…?” Or “Are you respecting me?” and this seems to cut through the fixation and bring him into the here and now or whatever I am asking him to do.

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