Autism, a story worth telling

autism and happy kid

Jo is back for a follow up to her article where she introduced us to her family, and gave us an enlightening insight to how Autism affects her, her children, and their immediate support network. This time, she discusses how Autism has affected her family.

Jo, through her blog, offers an insight to Autism, the trials and tribulations experienced by families of Autistic children, and also offers help and support for other parents.

Joanna Henley wrote..

The last piece I wrote, I was trying to explain how Autism affected my children. In this one I will try to explain how it feels for us, as a family unit.

My eldest son is what Autism parents tend to call NT, it stands for neuro-typical. This description, is basically saying that he is ‘normal’, but as a parent, I hate that word. After all, my other children are NOT abnormal!

I feel incredibly protective toward all my children; however I worry about the 2 youngest more.  My eldest knows when something doesn’t feel right. He knows to tell me if someone is picking on him. He knows the difference between teasing and bullying. As do all parents, I worry each and every time my eldest steps outside the door, but it is different.

I remember when my middle boy was young and I found it hard to take him anywhere. He would act up in most places. When he was older and the penny had dropped, that he had ASD traits. I realised, he wasn’t acting up, and he was trying to tell me something…..just in a different way.  We, as a family have learnt to understand the language that he speaks, but we still sometimes struggle, and each day we learn something more.  This is why, by ensuring that other people are more aware of the traits of Autism, we help our children feel safer, and that other people feel more at ease with their interaction.  It is crucial to help spread the awareness.  It is currently estimated that as many as one child in 100 has some form of Autism, so imagine how many lives would be made easier, if more people understood.

In the beginning, before we understood, it was hard, and I cried a lot!

When my youngest came along, I was the first to realise that he wasn’t responding properly, or to the same level of other children of his age. My mum was the same, and supported me when I decided to bring it up with our health visitor.  My husband wasn’t with me, and at that time, couldn’t accept that something wasn’t right.

I realised that my son may always be a little bit different to other children and that RJ may be the same. The day I actually got the diagnosis, the wind was knocked from me, I was numb, but just for a couple of minutes……..then MAMA BEAR was born. I am a social, easy going person, but you even look at my children the wrong way, and I will fight back!

It took some time for us as a family to adjust, and for a while I would insist on doing everything when I went out with them, to control any melt down. It’s hard when people stare, but then you gain this tough outer shell, you ignore it. If they don’t like the way my child just spoke to me, well tough! I know which arguments to pick with them, and which arguments to ignore.

My hubby took a little longer to adjust.  As I have already said, he couldn’t accept that our children weren’t all NT. He has now accepted it, and he is the most amazing father, it just took a little while. I still catch him looking a little sad sometimes.

My hubby works a lot; he had a lot of time on his hands, driving buses. He would feel guilty being away from the house, but that goes when he gets home and sees our children smile.

I asked my eldest how he feels. He said the hardest thing is, when he is out with his friends, he feels guilty. Guilty that he is out, doing things that his brothers may not be able to do unsupervised.  He often takes his middle brother out with him.

I’m incredibly proud of my eldest and his friends; they get very protective of RJ.

Sometimes I feel a little sad that KJ, the eldest, has had to grow up so much. I had to grow up quickly in my teens, coming from a broken home you adapt very quickly. I didn’t want that for him, but no choice was given.

The hardest thing for us as a family unit is the routine and planning that has to go in to everything. Going on holidays takes a lot of planning. We have to have pictures weeks in advance, so that the little one knows what to expect.  Our recent holiday sounds like a disaster to anyone that asks, but to us it was fantastic.

We stay in caravan every year now; the children understand that a caravan is a ‘holiday home’, so that is one hurdle.  No matter how much we try to prepare them, the reality is, when we arrive, it is still different to their home routine.  Our first night on our latest holiday, AJ had a major meltdown at about 4am! RJ couldn’t settle either. So my hubby ended up on the pull out sofa-bed with the youngest, I had the middle one in bed with me. The eldest slept through the whole thing!

The next night I slept on the sofa bed with the youngest. Middle boy and eldest shared one room and the hubby slept in the double on his own.

By the 3rd night, things finally settled. Eldest had one room, youngest 2 shared a room. My hubby and I shared the sofa bed so that if anyone came out of their rooms, they could find us straight away.

We tried to visit the town one day, but there were too many people and it was too noisy. Neither of the 2 youngest liked it.  For the whole family, it was exhausting.

We spent most of the week in the pool on site. It was wonderful. All the children enjoyed it, and it wore them out a bit, so sleep got easier as the week passed.

That is a typical holiday for us these days. We can’t go abroad, I have no idea how we would cope with the children on a plane. The idea of a boat gives me goose bumps!

Another issue that we face is financial.  I am unable to work anymore.  I am now classed as a full time carer.  Full time it may be, but I wouldn’t have it any other way.

Everything that we do with the children takes a lot of planning. I don’t really have much of a social life, but I do have excellent friends that understand, and visit often.  I find it hard leaving the boys with anyone else, but taking them out with me takes so much preparation, it makes it difficult to do often.  Going out doesn’t just affect me, but also anyone that joins us.  My mum tries to help as much as possible; she has even come to a class in a special school with me, just to learn a little about how my children see the world.  She can’t manage the little one, he’s too fast. However, she spends a lot of time with the other 2, which gives them a break from the house.

I know I have made it sound incredibly hard, but it’s not always like that. When the sun actually shines in the UK we can get in the garden.  My children will bounce on a trampoline all day, and I can relax knowing they are safe, I even get to read.

I remember asking a working colleague that had twins, how she managed? At that time having 2 children at the same time sounded impossible! Her answer is the one I now use.

I don’t manage, they’re my kids.

I am going to end this one with a list of things NOT to say to an Autism parent.

They’ll eat it if they’re hungry.

No they won’t, my youngest is very fussy with his food, he won’t eat anything with colour. Chocolate even has to come in a certain colour wrapper, as do crisps.

Is there any medication he can take?

He’s not sick! He’s autistic!! aggghhh!

He’ll grow out of it.

No, he won’t. He will always be Autistic; he will just learn how to ‘act’.

Oh so that means he doesn’t get upset.

Yes, he does get upset; he’s still a human being! He just may not understand why you are feeling a certain way.

Oh, he just needs a firm hand, he’ll learn.

You have no idea! He will calm down as soon as I can find out what the problem is. Something is upsetting him. Smacking/shouting at him will make it 100 times worse.

Autism can be very positive for a kid if properly managed. As One of my dearest human being is autistic I got help from my dear friends Rachel Shovelton and Jo to better understand and handle kids with autism and how to best get the best out of them.

The article was written by Jo who will hopefully be back soon with more insight in to her world.  We look forward to reading more, and appreciate her sharing her experiences, and helping spread awareness about autism.