30. We have to #trimyournails! No-way Mum! #Sensory Processing issues

Soaking the hands in the water of the bath softens the nails up so they are not hard  to the cut of the scissors. My dear son 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!

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.

 

 

 

29. Can we #washyourhair? #Sensory Processing issues

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.

 

 

 

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 my dear son (no, 2) 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 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 (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.