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 organisations or they don’t have the training for it or they are not equipped with the appropriate resources.
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
Do 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? 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.
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.
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 trailer 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.
It’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.
My Kiddo did not like to wear his socks. He hated feeling the seems in his socks. This was frustrating for me! So instead of tearing my hair out:
So I turned the socks inside out! When I finally did get online to order the seamless socks that you could buy, which people talked about, Well, I could not order them anywhere and they were pretty much always out of stock. I just turned the socks inside out which did the trick!
By the time I had gotten a pair of seamless socks my son said he did not like them anyway!
I was finding it hard to get my kiddo’s shoes and socks on, I was finding it hard to get clothes on my child until I realized that the weave of the fabric of the clothes was not suitable for him. The material weave was not breathing enough. What I mean is that polyester fibre weaves of clothes nowadays make people hotter. Cotton clothes breathe easier and they absorb perspiration. This means if the clothes the children are being told to put on are not feeling right because they are too hot well then this is why the don’t feel right. The clothes may feel itchy, hot, etc. and the child does not have the words to explain this to you.
My kiddo had a few thermo regulation issues, it could be freezing outside and he would be walking around in a pair of boxer shorts. He hated putting his socks on, I looked at the label which said polyester. Its hard to find cotton anything nowadays. But cotton and wool weaves it must be. I have found a few cotton socks in Target, David Jones has pretty expensive cotton ones too.
Also cutting the tags off kids clothes may help if kid is bothered by tags.
Hopefully this will be a helpful hint for parents/caregivers of your child with similar sensitivities. Cheers Jane
Moral of the story: My experience has taught my regardless of crying at home: keep nails short as Stressful Shit can happen with nails when out in public.
Soaking the hands in the water of the bath softens the nails up so they are not hard to the cut of the scissors. Hates his nails being cut! He dreads it and Dad and I dread it because he perceives the cutting of the nails as painful! It’s agony for him. But, I as a Neurotypical do not understand I know it is painful for him. It would be great to leave them but we can’t as we have found out from experience that he can scratch himself or the nails will grow too long, get brittle and snap off!!! Oh for goodness sakes!
Once when we were putting on his wetsuit to go in the ocean at Port Elliot, we were getting ready for a surf-lifesaving class. While putting the tight suit on, his nail of the big toe totally snapped off exposing the fleshy underbite. It Bled! This was all too much. It was painful! The associated screaming and crying went on for longer than you could have reasonably thought possible. We only had a day tent for him to curl up into.
Eventually he did join his group much to encouragement of his Mum. In order to join the group he had to do some walking. He would not walk on the sand. He’d had to take the most difficult of paths to get there and I was worried he might injure his foot again. I did not want him to embark on the loud exposee’ again. Regardless of what I think, he has worked out that raising his voice and screaming demands at Mum is going to get him what he wants.
He was encouraged to put his damaged toenail in the water to help it heal and this of-course pre-empted another explosion of loudness (screaming and crying) from my dear son. Oh, this is so boringly normal to us! As I had been commanded to go back to campo and get his shoes or something, I was not there when it happened and came back to find a sobbing little boy on a rock! I know that sea water would help but to my son (with broken toe nail!) it was devastating and a bad day!
NO! Ok well your hair needs to be washed and your nails cut. When my dear son was young he would scream through a hair wash, Mum: It’s upsetting but you have to do it! Kid: I don’t want to get water in my eyes! And the screaming…it rattles you! We realised that putting a towel to his forehead to protect his eyes was somewhat helpful. The quickest wash possible was always the best. Getting a two in one shampoo/conditioner was much more preferable than individual shampoo and conditioner bottles. This is normal for us.
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 my dear son (no, 2) therapies. So there may be a number of reasons for this that are buereacratic and administrative. NDIS may 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 NO. 2 son, 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 (appproximately) Psychologists, $176/session (approx) Speech Pathologists, $55/session (approximately) 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.