Martens family
Tell us a bit about your family
Just after we got married, Jeremy and I (Kathryn) moved out of Sydney to near Kiama on the South Coast of NSW because we wanted to be closer to the river and the beach, but still not too far away from family. We are both self-employed – Kathryn as a business and life coach, and Jeremy in the film and TV industry. This enables us to work around the needs of the kids and offer ourselves to church ministry. We have built a wonderful, local community of fellow parents and friends who we juggle the demands of life with. Our kids, James and Sara, are in the local school not far from our house. Our favourite things to do together as a family are fly kites and eat ice-cream!
Tell us a bit about your son
James was first diagnosed with additional needs when he was four (ADHD), and then another ‘label’ was added when he was six (ASD). I just knew something wasn’t quite right from the start, though. He constantly screamed in the maternity ward, and couldn’t go to sleep without screaming for hours for the first few years of his little life.
In many ways, eventually getting a diagnosis has helped us a lot – in adjusting our expectations of ourselves, and of him, and in seeking the government support we so desperately needed. Now, I readily tell his teachers and others as the diagnoses help them too. Having said that, we do not let these diagnoses become his identity. To us, he is our beloved boy, a gift from God, and first and foremost, God’s child.
What are some of the joys of parenting a child with additional needs?
Kathryn: I delight in being James’s mum. I waited a long time to have children as I married at 40 and had many fertility issues. James is our miracle as he was conceived straight after a healing prayer retreat. His extra challenges mean we celebrate even the smallest achievements that many would take for granted. When he chooses to look at someone and greet them, or when he chooses to walk away when he feels upset so he can calm himself, or when he eats a new food – we are so proud of him. I am also aware that having James has meant I have connected with the school community in more ways than we probably would have otherwise. The school counsellor, learning support teacher, principal, and the front office staff all know us now!
Jeremy: James has a unique perspective on the world, and a voracious appetite for information. You always know exactly how he feels about a day, a food or a particular activity that we want to do! Some days, when I am at the end of my tether, he suddenly runs up and hugs me and tells me “I love you daddy.” This was a long time coming, and I can’t ever hear it enough. But I do also have to remember in those times to ‘just be in the moment’ so that I “hear it” and “feel it”.
What are some of the challenges that you have faced while parenting a child with additional needs?
Kathryn: James is a smart boy, but has great difficulty regulating his emotions, controlling his impulses, and understanding or responding appropriately to his own and others’ feelings and needs. He is usually so caught up in his own world that it’s hard for him to take instruction or direction. This affects every part of every day – from getting ready in the morning, mealtimes, making friends, learning at school, etc. Wanting to be the best parent I could when he was a baby and toddler, I read books, subscribed to podcasts, and did parenting courses. From “positive parenting” to “attachment theory”, I just wanted to love on my child and thought if I just showed him enough love, everything would sort itself out. Though all these were helpful, they weren’t enough. It soon became very clear he needed more than what other kids did, and even my intense love for him was not enough. The next phase was to immerse him into every early intervention therapy I could, such as OT, physio, speech therapy and psychologists. No surprise looking back that I exhausted myself year after year running from here to there, seeking out the latest and greatest therapies for him – even driving to Sydney and back four hours per day at times. By the time he was five, I started to realise that no matter how much therapy he gets, he just isn’t like the majority of other kids. I slowly started adjusting my mindset to one of acceptance and embracing him just the way he is.
I am a great believer in ‘playing to your strengths’, which aligns well with the idea that God has gifted us all in different ways. So now, although we still do some therapies, we also look for outlets that James enjoys and is good at – things he can succeed in and that build his confidence. He’s tried horse riding, music and art lessons, but these haven’t been “it”. The next things we’ll try are probably robotics and chess. He is his own person, and I want to allow him the freedom to be who God intended him to be. Proverbs 22:6 (ISV) says “Train a child in the way appropriate for him, and when he becomes older, he will not turn from it.”
Jeremy: It is so easy to compare our family to others who don’t have kids with ‘additional needs’, but it’s not fair to our journey. I also have to remember to ‘not just acquiesce’ to James’ demands and requirements, but to remember the other members of the family too. We have particularly had to work hard at making sure we do special things with and for Sara as well, as she was often dragged around with James to all of his appointments and can often feel neglected. Another challenge is that there have been a number of times that I have wanted to do a special activity with James, and he’s lost interest quite quickly, which has been disheartening.
How has your faith been stretched or grown on your parenting journey?
Kathryn: I continue to pray for James to be healed. Seeing his lack of empathy for others and his difficulty to self-regulate, I know this is not God’s best for him. I have seen others healed miraculously through prayer, and so will not give up hope that James too will one day be healed. I know the Lord accepts him just the way he is, and yet at the same time He has compassion for him in his challenges and wants to see him overcome them. I wonder if his healing may be a gradual one, overcoming one challenge at a time, with the Lord’s help. We choose to see each development as an answer to prayer and thank God for it. God sees and knows the anxiety James feels every day and is there with him in it.
Personally, my own healing has also been an answer to prayer. The Lord has had to put me back together a few times already after the stress and burnout took me to the edge of despair. I am learning more and more how to rely on His strength, look to Him for wisdom and provision, and to be my friend along the journey. No matter how traumatising it can be at times, Jesus is always there with me.
Jeremy: I have really struggled with a desire to follow the “Healed in Jesus’s name! The Bible tells me so,” or “God made him this way” mantras. I have settled in a place where I do not believe that James was designed by God to struggle with ADHD or ASD, and I am praying and believing that God has healed him already, and that we will eventually see a restored relational empathy as one of the confirmations; but I am still curious about how God is going to work this all for His glory, and I am more regularly taking moments to share difficult situations and emotions with God and give them to Him to hold on to. I hope that He will manifest His healing one day.
Do you have any words of encouragement to share with other families of children with additional needs?
Seek support! It is so isolating when your child doesn’t play well with the other kids and you feel it’s just easier to stay home with them. Reach out to government services, neighbours, and church friends. Don’t be afraid to ask for help, or for a friend to listen over a cuppa. Join or start a support group of other parents with kids who have a similar condition. If you need mental health support, see your GP for a Mental Health Plan for counselling and/or medication.
Lower expectations of how much else you can do on top of being a carer. For example, work, volunteering and church commitments often just have to be let go, and that’s okay for a season. Right now, your child needs you. You are the best support for them.
Respite! It may only be an hour here or there at first until you find alternative carers who can take them for longer, but make sure you take breaks! Whether it be long walks on the beach, a massage, a prayer retreat, or a coffee with a friend, take the time to recharge yourself regularly.
Men: Remember to spend quality time with your spouse. You need to be ‘in this together’. Squeeze in a sneaky coffee or lunch during your work day. Go the extra mile to find a babysitter and book them regularly, even if it’s only for after the kids have gone to bed. Just 15 minutes and a gelato out together (because you are both super exhausted and want to go back home to bed) can make the world of difference.
You’ve got this! You have Jesus with you, strengthening you. He says “I will never leave you or forsake you!” (Joshua 1:5).
How can the wider church support your family?
When we come to church, don’t expect us to fit into the routines and expectations of the other families. Our boy may look just like other boys on the outside, but he is like no other boy you’ve ever met. When he is acting out, take the time to get to know him, and don’t judge him as “naughty” or “making bad choices”. Instead, ask the questions: “What is making him behave this way?”, “What is the unmet need right now that is making him do that?”, “What is he worried about?” and “How can I help him?”
Allow him room to move! He won’t sit down for long, so don’t expect him to.
Offer respite help! We could really do with a break from our boy sometimes. Can you take the kids to the park for a couple of hours? Or a whole day?
Understand our desire to be involved in ministry and/or help out on a Sunday may not be able to be realised as it’s just not practical with our son. Don’t judge this as disinterest or lack of commitment. Help us look for ways we can still be involved, for example, coordinating prayer needs remotely from home.
Most of all, join us in simply walking through life. Don’t avoid us because we are more bound to the house or because our home is loud and chaotic most of the time. Be our friends, come over for a cuppa, and stay connected through relationship. Join us in the mess of it all.
Where are you based?
Kiama, South Coast of NSW
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The views and opinions expressed on this site are those of the authors and do not necessarily reflect the official position of The 139 Collective. As a collective, we seek to humbly learn from each other’s experiences and remember the unity that we share in Christ even when our current viewpoints on the difficult topic of disability differ.
