By Julie Fisher
People often tell me they don’t know how I do it when it comes to my son Darcy because he has Down syndrome. Well, at least I think that’s why they say this. It’s actually never mentioned.
I’ve always found this quite puzzling because he is, first and foremost, my son. The Down syndrome doesn’t even come into that part at all when it comes to caring for him. Don’t we all do whatever is needed and whatever we can for our children? I’ve never thought of any of it as hard work actually, just extra things that need to be done.
Even though there are hard days and there is extra work, it’s just what needs to be done, and even though it can be difficult, you just do it because they’re your child. I’ve had hard days with my other kids as well, but I think people think of it differently when special or additional needs come into it.
I have three sons and a stepdaughter. Whenever any of them have needed anything, I’ve tried my best and do what I think is the right thing. Everyone I know with children does the same thing no matter what the problem is. We don’t always get it right, but we do our best.
So, this is why I find it puzzling when people say they don’t know how I do it.
Is it because of the label of Down syndrome? Is it because they know he needs extra assistance with daily living? Is it because he has ongoing appointments with speech therapy, physical therapy and the like?
Maybe it is. Or maybe it’s because it’s the unknown to them.
I guess, when I think about it, it is much how I was feeling when I was pregnant with him. I guess I wondered how I was going to do things when he arrived because of his brothers having all their activities and school. But I think that was more a time thing rather than because of his disability.
I worried about things he wasn’t going to be able to do before he was born, but once he arrived, I cared for him the same way as I cared for his brothers.
I do extra things for Darcy than I did for his brothers at similar ages because he needs to learn so he can become independent. He needs the assistance because it’s important to teach him and for me, it doesn’t matter how long it takes.
It is extra work because it’s ongoing for quite some time, but I enjoy doing things with him and I really enjoy the satisfaction he gets when he accomplishes something. It’s actually one of the best feelings in the world.
But, if you have children, you will already know how good it feels when they accomplish something. You feel immense pride because you helped them learn and they achieved.
So, it’s no different to when you have a child with a disability. Yes, there is extra work involved with a lot of things, but it’s not a problem because that’s what you are there for. To teach and guide them. That’s how I feel with how things are here.
Darcy loves doing things everyone else does. He loves to play, learn, relax, have time with his family, go to school, take part in competitions with his basketball and bowling – everything we all enjoy. With love, support and guidance, he is capable of many things.
A favourite moment for me is when people see Darcy do things and can’t believe he’s doing it. I love the looks on their faces and I love how it changes their perspective.
When I wrote my first book, The Unexpected Journey, I received a lot of different feedback. One of the most memorable was from a gentleman who said:
‘Reading your book has opened my eyes. I have never had disability in my life and I’m glad I read your book. I saw a group of people with disabilities shopping the other day, and I found myself looking at them differently. I couldn’t work out why.’
I told him that maybe he was seeing the ‘people’ rather than their disabilities first. He told me that was exactly what it was when he thought about it. That, in itself, made me feel so proud. It was wonderful to see how happy he was when telling me the story.
There are lots of things that we have helped Darcy with and fought for him to achieve. I hope to have shown people HOW I do what I do. It’s the same as when any of our children achieve something. That’s why we do it.
It may not be exactly how we expected things when we were planning to have Darcy initially, but he is our son and I think everyone would do the same. I mean, you have to really, don’t you?
When we were getting ready for Darcy to go on his first school camp with the mainstream school he was attending, we had meetings and a lot of conversations about why it was okay for him to go. Why was that needed? Because he has Down syndrome? Because he needed extra assistance?
I must admit, I didn’t understand why we had to have extra meetings for him to go on camp. And I didn’t understand why I had to justify any of it. He was having his assistant go with him and she was more than happy for him to go. I’m pretty sure she had extra meetings at the time too.
After the meetings, we all agreed he would go to camp on the Wednesday and if he didn’t cope, I would pick him up on the Thursday. This was the same for everyone attending the camp.
I also had a couple of upsetting experiences before he went to camp, even after the meetings we had and the agreements we had made.
One was when he was going on an excursion and one of the principals was amazed at how well he was going with all the other kids. He was amazed at how happy and excited Darcy was to go with everyone. Darcy had been on many excursions by this stage, and I told this man that yes, Darcy loves to go with his friends just like the rest of the kids.
I then told him I was excited about Darcy going on camp and when I said this, his whole demeanor changed. He put his hand up towards my face and said, ‘don’t talk to me about camp’. What was that about? I found it very rude and didn’t really understand it. I hoped that would be the last time something like that happened.
The week before camp, this gentleman asked me what time I would be picking Darcy up on the Thursday. I was confused by this question because we had agreed that Darcy would go to camp and if he didn’t cope, I would pick him up on the Thursday.
The camp was Wednesday to Friday, they hadn’t gone yet, and I hadn’t received a phone call. We didn’t know what was going to happen the following week. He seemed confused so I told him the plan we had come up with, and he didn’t seem happy at all. Why wouldn’t he want to see Darcy at least try camp? And how did he know how it was going to go? Why did he think Darcy would fail at this?
I couldn’t understand the way he was reacting to everything. I wouldn’t have even talked about sending Darcy to camp if I thought it wasn’t going to work. I don’t think any parent would put their child in any situation they didn’t think they would cope with.
The following week came, and Darcy went to camp with his peers. The man I have been talking about went on the camp as well. I must admit, I was very worried because I thought he would send him home without giving him a chance.
Thankfully that didn’t happen. He was so impressed with Darcy and how well he went on camp. When they returned, he told me Darcy did so well and he was very happy. Future camps were the opposite of what happened the first time. This man made sure everything was set up for Darcy to attend and he did all of them very successfully.
I did have to do a lot more for him when going to camp, but I did it without thinking it was extra. I did it because he’s my son and I wanted him to be able to experience school camp like everyone else. He was a student at this school, so he had the right to at least try. I think every child deserves the chance to try something like this. If it doesn’t work, then that’s fine. At least they were given the opportunity.
Many kids don’t cope with being away from home, especially the first school camp. But we do what we need to so they can at least have a chance to experience it. If we have to pick them up early, so be it. Who cares?
We all do what we do because we are their parents.
The hardest thing for me is not the extra care I give Darcy, but the judgemental issues we have faced, and still face, from time to time.
I don’t know if I notice it less now, or just don’t care as much about what other people think. But sometimes, people really need to think about what they are saying or how they are behaving. My son doesn’t affect their life, so why do they think it’s okay to pass judgement?
Do they realise it’s my son they are talking about? Do they realise I love him with all my heart just as they love their children? Do they realise he is a person with feelings just like them?
We have worked really hard with Darcy to teach him about the world and about community access, and he is an absolute pleasure to take out. But the world needs to learn to be more accepting of people. They need to be the ones that are taught how to behave at times.
I have done a lot of extra work with my son Darcy, but the sense of pride I feel when I see him achieve the goals he’s worked very hard at is amazing. It’s extremely fulfilling.
We all work hard with our kids. We make sure they get a chance to try whatever it is they want to try and for me, it’s no different with Darcy.
I have friends with kids without a disability that have lots of appointments with their kids and face challenges all the time. I face different challenges with my other children, but it doesn’t stop me from doing whatever I can for them to help them.
There are many extra things I do with my son Darcy, and I also provide extra care for him but I wouldn’t change it for the world.
So, how do I do it? I’m his Mum and he is worth every second of it.
