We just want the help that our child needs

In week four of our series, Lenore Good, whose son Bodhi has autism, talks about when things took a positive turn, thanks to the support of a home tutor
We just want the help that our child needs

PROGRESS: Bodhi thrives on routine and when he heard his tutor coming up the stairs, would be sitting in his seat waiting for her.

A BIG misconception is that your autism child will ‘just go’ to school.

The reality is, you need to always plan at least two years ahead. If our children all have different needs then not all teaching practices will work for them.

Some may need to attend a special school, some may need the one on one help in an ASD unit, and some may progress and be able to function with an SNA in a mainstream class setting.

The problem being there are no places available for our children and this situation doesn’t seem to be improving, so you are always waiting to hear if your child will be accepted in the setting they need that will embrace their individual needs, which is not always attainable.

You need to have your child on a list in many schools in your locality, you need to have all your I’s dotted and T’s crossed, so to speak.

You have no clue what the next two years holds in terms of progress or what he will need education wise, so you have to cover all bases and try and get his name on to as many lists as possible.

With six places in one unit and the possibility of five of those children staying put, that means one possible place opens up every year. One place when hundreds are looking, that is the reality of education for a child with autism in Ireland right now.

We found a fantastic tutor while we were waiting for a suitable placement, which gave us four hours a day which he spent with her one on one and this was the beginning of his progress and where things took a positive turn.

She was blonde, which obviously helped, he thrived on the routine, he soaked up all the work put his way, he would hear her coming up the stairs and would run and sit at his seat and wait for her. He rose to every challenge.

He had his bad days, don’t get me wrong, some days he would try to fall asleep two hours in, but she persevered. My heart felt so full, listening to her sing with him and try and encourage him to join in, he would belly laugh constantly with her. Then, one day, he said his name and her name.

We were overjoyed, things started happening from here. My husband and I were so thrilled the day he took a ball and initiated play with his sister by throwing it to her and taking turns. Then, if his cousins came to play, he would participate and they would run up and down the hall for hours. The smallest of things were everything to us.

It was around this time that he started communicating through lines from movies, he was really into Finding Nemo and Ratatouille at the time. This involved watching the same movie repeatedly for months at a time. He would obsess over the same, the ritual, the routine, he knew what to expect next and it was a big thing for him to even entertain the idea of watching something else and trying something new.

I will never forget sitting with him as he was watching the movie. He started to repeat a line, as I happened to be sitting right there, I stopped and realised at that exact moment what he was saying, so I paused the movie and repeated what he said, which was “if nobody wants it, then why are we stealing it?” and Bodhi turned and his whole face lit up.

Someone finally understood him, he was ecstatic, it was as if someone had lifted a huge weight from his shoulders, so we sat and repeated that phrase for hours and hours.

What my son taught me was that through patience, understanding and praise he would try again and he did. I also learned that by acknowledging his attempt it gave him the confidence to try again with me as I was the one person who actually “got” him. If he made this huge attempt at asking for something then you had to give it to him immediately to reward him for his efforts, to encourage him to keep going.

He would know if he used words he got what he wanted, slowly but surely we were both learning.

The reality is, you have to leave your ego at the door, put your own dreams and desires to the side ,which can be a very hard pill to swallow, which I believe one parent will struggle with massively more than the other.

It is the idea that your child won’t necessarily rise to the occasion when it comes to the parent’s expectations, they are still focused on the scaremongering aspect. Here, though, is where you need to deal with your own issues and not project them on to your child. Educate yourself, is this about them or you? Do they really want a close friend? Do they desire a big birthday party? Do they prefer to play alone? Are these wants theirs or yours?

Ask the questions, figure it out, if they are happy, leave them be. A sociable independent child who goes to every activity possible five days a week isn’t necessarily happier. Every child is different.

The other parent will automatically go into autopilot, look at things logically and throw themselves into the constant reams of paperwork, appointments, doing all the research and making it their mission to get proactive and keep busy.

Yes, life is tougher parenting wise but doesn’t every family have their struggles? What about single parents out there who have no support in the home, no one to take over? What about those families who have more than two or three children who have special needs, no help, no end in sight? The list of different circumstances is endless.

With zero services available to us, as parents you have to gauge from your child what therapies you think that they might benefit from. The HSE will have no problem in telling you a list of therapies he needs, but have no means to provide any of it to you. Keep in mind that any therapies you choose are all out of your pocket and any one assessment can cost the bones of €150, any additional sessions will be at least €80, that he will need at least one a week of to make any sort of progress.

You really need to pick and choose when you are paying out that kind of money, what he will tolerate and what will work for him. There is this misconception that all special needs parents are receiving handouts from the state. Bull***t, we don’t and aren’t looking for them, we are a one income family and my husband works around the clock to provide for us. We just want the help that our child, that all children around the country, need.

See next week for more

Lenore writes a blog on Out In the Sticks with Six

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