Hello world – remember Alex?

I’ve had a few people enquire as to how Alex is doing, and what is currently happening as far as the situation with the NDIS. Well, a lot has happened, and even more hasn’t happened, so it’s time for an update!

Our boy – now

For those who are new – since December 2018, our son Alex has been living at Irabina Autism Services in Bayswater, Melbourne. Irabina are not an accommodation provider, they are a therapy provider, but as no other residential service was willing to take Alex (10 years old at the time) they offered to provide accommodation for him so he could also receive therapy. As we live in Bendigo, the 369km round trip would be a bit much to do every day while living at home!

Irabina use a particular type of ABA (Applied Behaviour Analysis) therapy to deal with severe behaviours and eating disorders (amongst other things), and Alex has absolutely blossomed. Some of the changes that have happened are:

• He is now wearing clothes all day, every day. Unless he gets them dirty or wet, then all bets are off!
• He will wear socks and shoes while outside.
• He is using the toilet consistently, and not engaging in fecal smearing anymore.
• He is eating regular meals throughout the day – including 4 fruits, 4 vegetables, 4 starches and 4 proteins. Huge!
• Since he has started eating properly, he’s also been sleeping at night – go figure!
• He is tolerating haircuts and having his finger and toenails clipped.
• He is verbalising what he wants to do, and making choices about his activities.
• He is not hurting himself. He will occasionally return to behaviours of self harm, but it is no longer on a daily basis.
• He is not harming others – it will happen on a very rare occasion.
• He is cooperating. Wow. For those of us with kiddos with severe behaviours, this is life changing. Having a child actually cooperate with reasonable requests opens the world up so much for them, and Alex has progressed in leaps and bounds since.

When Alex finished the Severe Behaviour program, he progressed onto the Eating program. Once that finished in August 2019, he has basically been waiting for the NDIA to make decisions regarding his future. Irabina have used that time to fill his day with group based learning sessions, ABA therapy, Occupational Therapy sessions and Speech Pathology sessions. Who would have thought that daily, intensive therapy would make such a difference? (Spoiler – we did)

He is now holding a pencil with an appropriate grip. He is drawing over shapes with that pencil, and completing upper and lower case letters. He is riding a Trike, and is able to skip and hop. We knew he was able to read some things, but he is now verbalising the names of the alphabet letters.

Alex (now 11y 8mths) has been completing activities that most children would do at Kindergarten or Preschool, as that’s where his physical capabalities lie. He does have an intellectual disability so is still catching up on many, many things that his peers learnt years ago. But he is capable of learning and progressing – as we always knew he was. It’s taken the help of the Irabina therapists to prove that to the outside world as well.

Alex is thriving on a very strict routine within a structured environment. Certain things are difficult for him to cope with, and by minimising those triggers he is able to control his behaviours much better. During one of our visits, we attempted to read a book with him, but this is a huge trigger point for him. He ended up losing all control and it took four of us to remove all books from his vicinity and to hold him back while doing so. He was extremely upset afterwards that he had lost control so badly, and none of us want him to go through that again, so access to books is monitored very closely and restricted.

His obsessive / ritualistic behaviours still lead to behavioural reactions that are not helpful for him. If he is currently on a fixation for spinning loose parts on chairs for example, then those items often have to be removed from his vicinty so he is not ‘tempted’. It is an obsession that makes him upset and prevents him from doing other activities that he enjoys – not a stimulatory behaviour that helps to calm him down.

Certain activities are preferred items for him and he has access to those – such as spinning pieces of wooden jigsaw puzzles by their pegs. These are self-soothing behaviours that he enjoys and that help to calm him, as opposed to the obsessive behaviours above.

Where does this leave us?

As you can see, Alex has made some amazing gains. He can continue to make those with the right supports in place, which will lead to a more fulfilling life for him where he will have more opportunities and choices. For now, he needs a daily, structured program to learn new skills, within a controlled environment. He does not tolerate change very well and needs additional supports for changes to his routine and environment.

This means his living enviroment needs to be just right and that the people supporting him need to know how to do so in the right way. It means that he needs to have one on one support to help him learn new skills and concepts. Alex needs a dedicated team of supporters who will cheer him on and encourage him to continue being the best that he can be.

And all of that takes money – great big bucket loads of it. And that’s not the sort of money that your average 11 year with Autism receives from their NDIS plan.

You now have an update on our boy – who is going through puberty so I will soon have to call him my young man, although to me he will always be “my boy”. The question of, “so what is happening with the NDIS?” will be answered in my next blog post. Stay tuned!