'Family Matters': A Mothers Experience of Supporting Her Children with Multiple Diagnoses

A courageous mother who has supported her multiple children presenting with a range of complex issues including Obsessive Compulsive Disorder, Anorexia Nervosa and Autism, shares her difficult and inspiring journey. She also offers advice for parents who may be in similar circumstances, and stresses the importance of self-care.

Firstly, can you please tell me a little bit about your experience as a parent with children who have a variety of mental health issues and disorders?

Very overwhelming at first. At the beginning, you know that something is wrong with your child, but you don’t know what it is. It can be overwhelming in the sense that you aren’t really sure where to begin, and that sense of panic arises from not knowing how to help your child in the best possible way.

After you find out what’s wrong, it gives you a sense of relief. However before that stage, it can feel very scary, and you can feel like a bit of a failure, questioning what you have done wrong. Not knowing is very scary, and can make you quite emotional.

What did these disorders/mental health issues consist of, and to your knowledge how did they develop?

Melissa & OCD

With Melissa and her OCD and anxiety, I think it was a combination of a stressful pregnancy and a stressful birth. I suffered from Post Natal Depression, which took me a long time to deal with, even though I did seek help early on compared to a lot of others I know of. I think my state of wellbeing in relation to her, and the way we connected, almost contributed to her condition in a way. It was a combination of multiple stressful periods from when she was born, and the fact that it took me a while to get the right help I needed and to connect with her fully as I dealt with my own mental health issues. Unfortunately I think she suffered a lot from this, and it contributed to her anxiety and OCD, especially since at the time I myself felt quite miserable.

Being older than her siblings, Melissa noticed a lot of things, and it was almost as if the umbilical cord was never cut between us, in the sense that she would feel a lot of what I was feeling most of the time. I know it took quite a toll on her emotionally as she wasn’t really sure how to deal with a lot of things at the time.

She was around 13 years old or just a bit younger, when things had gotten pretty severe. She wouldn’t talk to anyone except for me, and she would always appear withdrawn, as if she was missing out on the world around her. I remember saying to myself, "something is wrong here". A couple of teachers had said a few things to me about her behaviour at school which now looking back were displays of OCD tendencies, and I finally decided that I needed to get her some help.

The school psychologist was helping at the time, I also went to see doctors and got in touch with Austin Childhood and Adolescent Mental Health Service, where they undertook an assessment on Melissa. They talked to her, myself and her dad, eventually confirming Melissa's diagnosis of OCD, especially since she was engaging in a lot of excessive compulsive behaviours. In my opinion, being able to put a label on it helped me to better be able to understand Melissa’s disorder and move forward in knowing where to go from there, and what to research.

Afterwards, Melissa was put on medication (antidepressants), and as a parent, it is a really hard thing to do, especially to a 13-year-old girl, it isn’t something you want to do as a parent. But once we did that, things started to settle down a lot, and as soon as I made the decision to get a divorce, it was as if a weight had been lifted off of her because it had been lifted off of me.

Year 9 (Melissa's early high school years) however would stand to be a very hard time for her, school wise, friendship wise and emotionally due to the OCD and anxiety. Some days I worried if she would even come home because I knew she was miserable, and it broke my heart to see that every day during that time. However in the next few years things started to get a lot better, she made new friends, and she started actually being happy to go to school. I could see her emotional health getting a lot better, and I was incredibly happy for her.

From then onwards, we moved forward and even though there were ups and downs, good and bad moments, we managed to get through quite a rough patch in time. Now she is 23 and able to better deal with her anxiety, and she recognizes when she needs help and where she can get it. I still get emotional thinking back to that time now, as it was a very difficult time in life, but we are very open with each other and can learn to move forward despite the difficulties faced in the past.

Blake & Autism

When Blake was born, he seemed pretty normal, doing everything he was supposed to do as a baby and everyone loved him, however, when he was about 3 years old my sister kept bringing to my attention to that something was wrong. I would always deny this and say that he was fine, and I think a lot of that was because I felt that I couldn’t deal with anything else on top of what I was going through with Melissa. So I would get frustrated whenever someone drew my attention to it, because I think deep down I knew that something wasn’t right. I could see that he was changing, as a baby he did everything he was supposed to, but over time that began to deteriorate. I won't forget the day that we were at my partner's aunts house, and Blake was there doing some odd things, and I just looked at his aunty and said “there’s something wrong isn’t there?”, and she just looked at me and nodded her head, and just burst into tears. We went home that night and I turned to my partner to say “there’s something wrong with him” and I think I cried for about 4 days..just cried.

I knew there was something wrong with him, and I didn’t know exactly what, but he would do things like chuck massive tantrums in shopping centres, clinging to the doors begging not to go in, if we put the blinds up or changed the channel he would just be hysterical. We didn’t know what was wrong, and I think a lot of people thought he was just spoilt and a bad kid. Eventually, I rang a friend whom I had known for quite a few years, and she had a son with autism, which I had a feeling is what it was. I told her what I was experiencing and surprisingly she said: “I was just waiting for you to call me”. It was good that I had her, because if I didn’t I wouldn’t have been so sure as to where to start.

When I had taken Blake to the health centre when he was 3 years old, after a cognitive test which he failed severely, the nurse had said to get his hearing tested. Because of that experience, I developed a stigma, and never went back I thought that her response was ridiculous. I was thinking that this woman didn’t know what she was talking about, as from my perspective there was nothing wrong with his hearing at all. The problem however which I learnt later on, is that they don’t want to say that something is wrong with your child. What I now know is that usually when they assess a child with autism, they get their hearing checked first and that is a telltale sign. Not knowing this however I turned away because she wasn’t as upfront, and I think that’s something I would’ve appreciated, whether I was ready to hear it or not.

Eventually, we got onto the right people, thanks to my supportive friend, and we self-referred into an early intervention service. From there we were given a great amount of resources to help us, the hardest part was getting the diagnosis because it was a lot of running around to get signatures from varying health specialists. In the end though when all of it was done, and we got the diagnosis of Autism, we were relieved because now we knew where we could go from there. Its obviously hard for any parent to get that information, but for me especially since what I had been through with Melissa and her OCD, and as it is kind of a shadow of Autism, it helped me better understand how I could help Blake. It was almost as if Melissa had to go through her own journey with OCD so that I could deal with Blake and his autism.

Once we did that, we took things slowly and began to understand the triggers for Blake and did our best to limit or avoid them so we could limit his stress. Things like being mindful of large groups of people, loud noises, and waiting until he was ready to do certain things.

Of everything I’d say it was the most overwhelming having to fill out heaps of paperwork, and find out what works and what doesn’t work for Blake and getting on to the right services that we knew could cater to his needs. After we got the supports we needed and looked at specialty schools for Blake to enrol in, we got him into the Northern School of Autism and after that, it was smooth sailing. Things were definitely better after we knew how we could help Blake and what was available for him.

Courtney & Anorexia Nervosa

Courtney had always matured very quickly for her age, and was on the thicker side. When she was older she developed an interest in swimming, so she started doing squad swimming and was doing very well and enjoyed it quite a bit. We had just moved to a new suburb when she started her first year of high school. I think there was a bit of anxiety for her going into Year 7, you usually see all the other girls who are quite petite, and Courtney we had to buy a large uniform for because she was quite developed at that stage. When we went to buy bathers for her swimming, we could no longer get her child sizes but instead we’d shop in the women’s section, and I know she noticed all of this and was embarrassed, especially going to an all-girls school, she could tell she was on the bigger side compared to most her age.

One day, she brought it up to us that she wanted to lose some weight. We were all for it because usually we could recognize that she was clearly overeating, so we understood and supported her. So my mother and I said to her, “you can lose the weight, as long as you do it properly”. So we would keep an eye on her, and at first, it started off where she would eat her own meal, and not any leftovers or extra food, and because she was swimming and also cutting down on food, she slowly began to lose the weight.

Courtney was very excited about it because she could see the changes, and especially because she was swimming she could see we kept having to buy her smaller bathers. Eventually this excitement turned into an obsession, and it wasn’t until we moved that it got worse and she started to become very skinny. Then she started saying “mum, I’ll cook my own meals” and because I had moved away from my mother and had other kids with varying high needs to monitor, I told her that doing that was fine.

Eventually she got skinnier and skinnier, and I was worried but I think that there was so many things going on at the time that sometimes not all my focus was there. Then one day the school rang me, saying that they were concerned about Courtney, "we notice that she’s been really tired and is falling asleep in class, and that she’s lost a lot of weight". Then it became another one of those situations, where I didn’t know what to do, or who to turn to. A thought that was always in the back of my mind was, "are people going to think that I’m just always looking for problems in my children?" Because there were already so many issues there.

The school psychologist had eventually contacted me asking me if I wanted them to get into contact with Austin Childhood Adolescent and Mental Health Service, which I was familiar with having gone through similar contacts with Melissa. Once we established that there was something wrong, that not only I saw, I could finally put that thought about if I was looking for problems or not in my children at rest. They assessed her as having Anorexia Nervosa, and told both me and her that she couldn’t go home. We both burst into tears, and I was so heartbroken just to think that she was swimming not long ago, and that any moment she could've collapsed from pushing her weakened heart so far. That was really scary and lonely, and produced a whole lot of emotions to resurface. But hearing that she couldn’t come home, almost gave me a sense of relief because I knew that she was finally going to get the help and attention that she needed.

Courtney’s journey to recovery was a very long and hard process that lasted for about 3+ years. I am kind of glad that the other kids were where they needed to be in that point of time, because they were organized and it gave us some time to focus on Courtney. Family therapy was the worst, most of the kids felt like they couldn’t be completely open in front of their father (divorced) because they didn’t want to hurt him. Thankfully over time, however, as a family we managed to support each other and Courtney continued to receive the help she needed in order to recover and that’s just what she did.

How as a parent did you try and support your children whilst they were experiencing poor mental health or learning to cope with their disorders?

I think by communicating with people and widening your networking circles to be able to really learn more and get the most out of people who have experienced similar issues. Speaking to other mothers who had a child with autism or a mental health disorder, they were able to give me a lot of resources and contacts I wouldn’t have known about.

Asking for help was the best thing I could do for myself, and for helping my kids, because there is always something someone else will know that you don’t that could really help the situation. Honesty and communication is fantastic, it helps not only yourself, but other people.

What was your initial perception at the start of their mental health journey and did this change over time?

Before you know what’s going on it can be very overwhelming and scary because you don’t have all the answers, you want to fix it but you just don’t know how. Eventually, you come to terms with the fact that it's going to take time, it's going to take years, and it's going to take a lot of work. Going through it especially more than once can be very debilitating at first, you say to yourself “I can't do this again”, however, at the end of the day they’re your kids and you’re going to do what you can for them. Once you know the diagnosis, and learn about the condition its also almost as if you can breathe, at least in my experience. With Blake having autism, I did mourn the child I thought I was going to have, and I went through periods of sadness. However, once you get through that initial phase, you learn to accept things and it opens up your eyes to a lot of other possibilities and dreams for your child. Sometimes it’s a blessing in disguise, that teaches you more about life, and we’ve all come out stronger for it.

What were the biggest struggles in your opinion, whilst supporting your children with their mental health issues?

A lot of the struggle I think, is as each child was going through their particular disorder, still focusing on the other kids and dividing your attention accordingly. That was something I found hard, trying to keep the child who is having a hard time afloat and not drowning, while still remembering that you have the other kids there to take care of, and making sure that they were okay. It can just take up so much time dealing with the mental health issue, getting the diagnosis, finding out information on how to better support your child, that sometimes unintentionally your priority shifts and you tend to lessen your attention to others. I think my oldest son got left behind quite a bit whilst we had to deal with the mental health of my other kids, and I just look at him now and am so proud of him, considering everything we’ve been through as a family and not once has he complained.

Another big struggle is trying to find time for yourself, and practising self – care. People would always say to me, “you need to make time for yourself”, but I always laughed internally saying to myself “really, how, where?”. My kids took up so much of my time, and they were my top priority, it was the last thing I was ever thinking about.

Were there any specific times where you thought to yourself, “I can't do this anymore”?

A lot. I would cry a lot and say to my sisters “I don’t know what to do anymore”, because at a couple of stages it felt like it wasn’t going to get better for my kids. I was often heartbroken that my kids were suffering so much, and it really got to me. I was off and on anti-depressants a lot because I just couldn’t deal with a lot of stuff. Before the diagnosis was always hard for me, and even after at times when you would run around from appointment to appointment, and trying to juggle taking care of the rest of your kids, it was never easy. There was a lot of self-doubt and saying to myself “I can't do this”, however the fact that there were people supporting us and that our family was quite accepting made it easier on me. Each child came with their own struggle, to be honest, it feels like I’ve been on an emotional rollercoaster for the past 23 years. Looking back now it’s weird talking about it and looking back on everything we’ve been through, I often wonder how I am still here after it all.

Did these mental health issues improve over time, and if so, what made you realize that they were?

Well like I said, Melissa is able to identify when she’s having severe anxiety, and I still notice when things get to her sometimes. But I think now, she has developed her own support network where she knows she can get the help she needs. She’s a lot older now and knows how to identify things for herself. I truly praise her for that because she easily could’ve just gone, “you know what, I’m done”. Every day can be a struggle for her sometimes, but I can see that she is getting there and is a lot more open.

Blake is where he needs to be right now, he is in a great school for autism, has the supports he needs and we are doing the best to manage his triggers. He is a beautiful kid, who has opened our eyes a lot to different things. We know that there are things that are going to come up, but we also know that we are going to just do our best in dealing with them. Everybody keeps an eye out for him, and he knows that he is loved and supported.

Courtney has made it out on the other side of Anorexia, she truly made it and now has a beautiful baby boy which I know has helped her grown up a lot since. She is a fantastic mum, and even though she does have some of her own issues and struggles a bit, she is very open with me now, and we know whatever it is we can work it out together. I think we are the closest we’ve ever been at this point in time.

What was the best way to communicate with your children in regards to their mental health?

I think we’ve always been quite open with communicating with each other. All my kids are generally able to come up to me with an issue or to confide in me about something, and feel comfortable enough to speak their mind. Going what we have gone through as a family, could’ve tore us apart, but in the end, I think it made us stronger and much closer. Sometimes though when they were going through some of their darkest days with their mental health disorders, they didn’t want to discuss things and almost wanted to pretend it wasn’t there but in those moments I did my best to show them that I cared and gave them as much love and help as possible.

In terms of communicating with them and getting them to open up, I found that picking the right time and place was very important. I always chose to speak to them about things in the car on the way to or from things, because they couldn't run away, they cant slam doors and it almost forces them to say something or else have a really boring car ride, by the time you got home with them they sort of had to be over it. Music can be good also.

At any time whilst supporting your children with their mental health issues did you need support for yourself, and your own mental health? If so, did you receive that support?

I did, through family first. When I was supporting Courtney with Anorexia, they had support groups for parents which we would go to once a week, and that would really help with issues and understanding. It was good to bounce ideas off of one another. I also got onto a psychologist I would see in the local area, for a little while, just because I felt like at the time I couldn’t handle things that well. So I guess that was a bit of self-care. It was still hard to find time to do it, especially in between everybody else’s therapies but I did do that for a while. I think you definitely need to though.

Did you find any positive coping method’s for yourself during this time? If so, what were they?

I found the group therapy very good at the time because you didn’t feel so alone. You could see that other families were in the same boat as well. We’d all cry and laugh together, it was good. Sometimes being with strangers was easier than talking to family at times, because they understood what you were going through and you could laugh about it from time to time. Sometimes also just removing yourself for a little bit of time, and giving yourself space to breathe was good. Going away for the weekend or sending the kids to a relatives for the day. When you are In the thick of it, it’s definitely hard trying to find any positives, but over time you will learn to laugh about things even though times were hard. Hanging onto the little joys also was a big thing, whether it was something silly the boys did or a funny joke made.

What advice do you have for parents going through supporting their kids with a mental/physical health disorder?

Talk about it, as much as you can. and if you have really good supports, use them. If you need a break, whether it's them taking that child for the day or whether it’s you going to spend time with them whilst someone else looks after your child for the day. Taking some time out for yourself, because you can't expect to help your kids when you’re running on empty.

Don’t hide. Sometimes the more you talk about it, the easier it becomes. Over time it doesn’t so much feel like a weight on your shoulders, you kind of share that weight with others. Use your supports as much as you can, and find groups if you can and talk to other parents who will be able to relate and offer you some good advice. Sometimes knowing there are other parents in the same boat, makes you feel just that little bit better and less alone.

Be there. You have to know and always have it in the back of your mind that they do love you, despite what their actions or words might be. It's just something that they are dealing with, it’s their disorder not them. And I know that can be difficult sometimes, especially when they lash out at you, but you really do have to constantly be telling yourself that. Or it will wear you out. Sometimes thing get ugly, but it's up to you to decide how to react to that.

It's very overwhelming which is why you definitely do need to take time out for yourself, but besides that just be there for your kids and never give them a reason to think that you’ve stopped caring. Don’t ask too many questions, wait for them to come to you, and even when they’re mad just hug them and tell them that you love them.

What if a parent is suspecting that their child has a mental health disorder?

Definitely go and talk to someone right away. Don’t leave it, don’t let it fester. If you feel your child isn’t behaving in the right way, or they have suddenly changed in their behaviour it generally means that something is going on. Whether its depression, drugs, alcohol, go with your gut and don’t deny it. When you deny it, it's when you give the potential for things to get worse.

How important do you think self-care is for a parent?

I think that it is very important, but also very hard to do. Because you are also dealing with supporting your children. It’s good though to attend family therapy and groups so that the parents can be supported, and I highly recommend for families to do that if they can. To me, that counts as self-care because you are putting the issues out there and talking to other people. You can walk in and genuinely say what’s on your mind without fear of disappointing anyone or saying something wrong, because everyone understands.

Even finding the littlest bit of time here and there to do things can help and count as self-care. I used to go to the shops and spend ages walking through the isles just because I wanted some time away. Play music in the car, sing, dance in the shower whatever you want to do. But it is really important to take time out for yourself, because it can consume you. In the end, it could be you who suffers, which is not only bad for yourself but for your kids.

Besides that, hang in there. There is light at the end of the tunnel. Remember to take things day by day.