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.
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 causing skin irritation. 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. I notice 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.
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 poly fibre 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.
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 kiddo 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 brace myself for the eventual marriage of foot to 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 its 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.