Beautiful garden full of tulips
I live with my wife Brittany and our two daughters, Gemma aged 11 and Sophia aged 8. Gemma is clinically diagnosed with ASD, and Sophia has been partially diagnosed at this stage. The clinician advised us that Chloe does have a processing disorder, but she may not have autism, because her social skills were pretty good. At the time we put her through the assessment, her social skills weren’t too bad and she did have a couple of friends, but two years on, she doesn’t have close friendships anymore. That was the only aspect that prevented her from getting an ASD diagnosis. We are currently on a waiting list to get her retested.
Getting our diagnosis
When Gemma was about four or five, we took her to see a Darwin psychologist because we felt that she wasn’t meeting her academic and social milestones. There were lots of little indicators such as having delayed speech etc. We could see how other people’s children of the same age were progressing and we started having some concerns and thought that we needed to check it out.
In the first thirty seconds, we were told that she didn’t have autism as she had excellent eye contact. We paid almost $2000 for that misdiagnosis. A couple of years later when she was six or seven, Gemma was seeing her paediatrician for some different tests. After meeting with Gemma over a number of weeks, Brittany asked him a question and he said, ‘yes well that’s probably due to her autism’ and she replied ‘what?’ He answered ‘oh sorry, yes, she has autism’. He apologised by saying ‘I thought I told you that on the last visit’. That’s how we found out that she had ASD .
It was a bit numbing at first, but we knew in our heart of hearts that there was something that wasn’t quite right and the diagnosis did explain a few things for us. We then thought ‘okay, we now know what’s going on, so what can we do about it to make the journey as positive as possible?’
Gemma is a very caring person. It would break her heart to know if she had made someone upset. Especially someone she loves. Her character is sweet and kind, and she tries to do the right thing. But she can also be frustrating for us as parents. She always has to have the last word and struggles quite a bit at school. She just doesn’t “get” mathematics; she is okay at spelling and reading but is a good few years below where she should be academically. Socially Gemma has also struggled, however as she is gets older she seems to be getting better in that area, albeit with children younger than she is.
The psychologist told us that she had low IQ, and that won’t change for the rest of her life. The “rest of her life” comment we are taking with a pinch of salt as it was performed by the “30 second” diagnosis psychologist, still though, she is well below her peers academically and socially. But she is making constant progress.
Chloe is completely different to Gemma but they both have beautiful hearts. Sophia, is generally smiley happy child but has a very strong will. With Gemma on the other hand, it is a little bit easier to get her to do what’s required, whereas with Sophia, you need to be a lot more patient. We have to give Chloe plenty of warning, such as ‘the TVs going off in five minutes’, then ‘three minutes’ then ‘we are turning the TV off now’, ‘why don’t you turn it off’. We try to empower her in that way so she won’t have a meltdown.
Chloe is probably doing a little bit better academically than Gemma was at the same age. As with Gemma, she struggles with friends. They are both intense when they find a friend. They don’t know the delicate balance of just being a friend and they tend to be a bit over bearing, annoying or too enthusiastic.
What the girls like to do
Chloe likes to play make believe a fair bit. Normally it’s a school scene and there’s a teacher and three or four students which sometimes are fury animals. There’s always one child that misbehaves. The game doesn’t progress unless the class rules are made clear at the start. She also plays spies and dress up’s just like any neurotypical child.
Chloe loves playing backyard cricket, or kicking a soccer ball. She is quite good at those things. If there’s nothing to do, she will generally find something else to occupy herself such as drawing or playing with Lego.
Gemma on the other hand doesn’t enjoy doing things on her own that much. She needs things to look forward to, for example going to grandma’s or going for a drive etc otherwise she gets bored very quickly. She also needs to know in detail, what time it’s going to happen. Gemma regularly goes to swimming training once or twice a week. She has low muscle density, so her power isn’t fantastic, but she has got a beautiful stroke and I think it’s great that she’s doing something that makes her feel good about herself.
Chloe has probably got more potential at school because she has a good memory. She does seem to retain things a lot better than Gemma. My heart bleeds a little bit for Gemma in that situation because we will do quizzes at the dinner table such as naming the capital cities of Australia, Chloe knows them off by heart, but her older sister doesn’t, she generally will think about it, have a couple of guesses and she may get the answer eventually.
Chloe and Gemma are both very easily distracted, so if there is something else happening when they are supposed to be listening to the teacher, they will be looking over to see what’s going on. I don’t think they get in trouble too much at school. They seem to be pretty well behaved. We haven’t been spoken to by the teachers about their behaviour.
The girls go to a local government primary school. Gemma was at first getting some great support, the head support person is fantastic and Gemma loves her. But there’s a lot of students that require support nowadays so the support staff have to spread themselves around a fair bit, which means we don’t get the support we once did.
Gemma does have an education plan but unfortunately the other casual support teacher who fills in isn’t very patient, they have had run ins and that has affected her education this year. I said to her regular teacher a few years ago, that I was brought up getting a smack on the bum if I didn’t do the right thing, and that worked for me. I warned him that this approach just does not work for Gemma. I remember giving her a smack one day, then she just smacked herself even harder and roared at me, I quickly realised that is not the way to go with Gemma.
So what works with Gemma is the carrot not the stick. It’s like trying to push a horse into a horse float when you’re on your own, you are just not going to do be able to it. You can push as much as you like and get as frustrated as much as you like, but it’s not happening. But if you get a carrot in front of the horse, there’s a good chance that it might even walk in on its own and that’s how you get the best out of Gemma. Sophia doesn’t get support at this stage but that may change as she gets older and the work becomes more challenging.
Gemma and Sophia are always open to friendships, however they both struggle with the delicate balance of just being a friend and being overbearing. Friendships don’t seem to last.
I don’t know what the school does to support them socially as individuals. They have a nice area at school called the Friendship Spot, where if you have no one to play with, you can sit there and kids will know that you are looking for somebody to play with. It’s not specifically designed for kids with special needs. Unfortunately, I think it’s got a bit of a stigma attached to it and nobody wants to sit there so it’s not working that well. Kids do not want to admit to the whole world that they haven’t got any friends.
I don’t think Gemma and Sophia sit at the Friendship Spot. During lunch times etc, I think it’s a matter of fending for yourself. The support teacher is aware of Gemma’s struggles and she gives Gemma some good advice about it. That particular support staff member has been fabulous, guiding the her in :what you should do in that situation, maybe you can do this or that and the other. She is a bit of a go to person for Gemma. Chloe is just fumbling her way through at the moment and learning the hard way. We as parents are constantly trying to educate them in this area.
Outside of school, the kids do have one girl that lives close by that comes over from time to time. They also have their cousins and the children of family friends that they interact with.
Grandma is great with our kids. She is really our only ‘go to’ for babysitting. So we are pretty lucky to have her. It means Mum and Dad get to go out from time to time.
We don’t really have friends that we can talk to, that fully understand what we have to go through and fair enough too. It’s like trying to explain what it’s like having a child to someone that’s never had one. How can they possibly truly understand the experience? That’s why when we bump into other ASD parents it’s great, they really understand, and never judge you. I think there’s also a strong feeling of comradery.
Having children with ASD can give you a sense of isolation at times, but you just need to stay positive and keep things in perspective. “It’s not a death sentence”, a cousin in the medical field told me once and I have to say, she was right. ASD families are just on a slightly different journey that’s all. We still love our children, we still delight in their success’s, we’re still living.
The journey analogy reminds me of that essay written by Emily Perl Kingsley called ‘Welcome to Holland’. I’ve always remembered these very wise words:
Welcome to Holland
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…
When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."
The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
Written by Emily Perl Kingsley
Chloe is very sensitive to loud noises, so is Gemma, but not anywhere near like Chloe . I remember the first time I realized it with Gemma was when we went to the Carols by Candlelight, and they had fireworks, and I think Gemma was about three, she ran straight into my arms and buried her head in my neck and shoulder and tried to block that noise out.
Chloe on the other hand, has always been like that and she absolutely lost it with the fireworks. I went to the shops yesterday with her, she put her hands over her ears just before we entered the shop. I wondered what she was doing that for, I knew there was something triggering it. I thought maybe it was when went through the doors of the shopping centre, and there’s a loud noise that I hadn’t noticed or maybe it was he loud noise from the air-conditioner going ‘whoo’. As I continued through, there was a rumble strip. As the trolley went over the mat, it was making a ‘duf duf duf’ sound, and I realised that was what she was reacting to.
Chloe does need speech pathology, but it’s $170 an hour, we have paid for quite a few sessions and I think we received funding for six more at half price. The girls have also gone once to an occupational therapist once. Again it’s very expensive.
If we have a problem we contact Autism NT, because we know that the staff speak with a lot of parents with children of all ages and abilities, and they have basically seen it all before. For instance we were wondering if we should hold Gemma back a year at school since this year was a write off educationally. We were able to brainstorm the pro’s and con’s with them before raising it with the school.
There are resources online and on Facebook. When the kids are in bed, you have the time when you can do a bit of research but you also kind of want to switch off a bit as well, and just be you. Don’t get me wrong we have done heaps of research in the past, but we know our kids pretty well. We only use those resources if something new happens.
One of the main things we focus with on the girls is their food and rest. We keep them well fed with nutritious food as much as possible and get them to bed at a reasonable hour, providing them with good rest. With the educational side of it, the school is there to help in that area and you as a parent can assist educationally as well and hopefully pick up some of the slack.
Self-care for us is the odd night out, thank goodness for Grandma.
How life has changed since the diagnosis
I always say that, when I first met Brittany, before we had kids, the stress level line was at our ankles. To have that stress level reach your head and then to have it turn into an argument, would take a long time, it would take something fairly substantial and even then we would talk our way through it. But now, I would say that our stress levels are constantly at about waist height. We do argue a lot more but who’s to say that wouldn’t have happened even if we had neuro typical children? Raising kids is a tough job universally.
What I like the most about my daughters
They have got the most amazingly beautiful smiles, and they are good kids, they really are. They care about people and their feelings. When they say something slightly awkward like, ‘oh Dad, you can really notice that mole on your eyebrow!’. If I put on a sad face, they just about cry, so I can’t put on the pretend sad face. That’s how sensitive and caring they are, I love that about them, I love their hearts and spirit. I also love their courage. I think they are both very courageous, with what they have to endure. I am so proud of them for their positive outlook on life even though they are facing more obstacles and hurdles than most of their peers.
Hopes and dreams for the future
In regards to my hopes and aspirations for my children, I don’t try to look too hard into the future, because they are still pretty young and still learning. I just hope they’re happy. Judging by what the professionals say, girls on the spectrum can be easily manipulated by men that will take advantage of them. We will be on the lookout for that of thing, but they are going to come to an age where they are going to want their own independence, and that’s a bit of a worry. Just like everything else with autism, we will take it one day at a time, one week at a time, and when we come to those sorts of problems, we will ask what other people about what to do and what to look for.
Don’t let other people bring you down. Be patient, you are doing a good job. Don’t worry about what other people think, they don’t know, so don’t be too hard on them either. Don’t be too hard on yourself.
Well and truly celebrate those little milestones, really delight in them. You don’t have to tell anyone else, you can just go, ‘you know what, that’s a punch in the air right there’.
If you’re a teacher…..be patient, be calm, be respectful and find things to praise them for. Not only do our children need this from you but other children in the class will follow your lead. Your lead is so important.
I would also like to say, it is a lot harder for a child with autism to change than it is for you. So if something’s not working change what you’re doing.
Autism is real, it’s not an act. Trust me.
If you are a parent of a child with autism, don’t be too hard on yourself and don’t be too hard on your child. Yes, it’s a journey, but there are highs as well as lows. Don’t think it’s just going to be low the whole time, because its most certainly not.
You have a beautiful garden full of Tulips. It’s just going to require a little more maintenance, that’s all.