Parent Support & Mental Health
When you hear the words Arthrogryposis for the first time, the world tilts. It’s not just a diagnosis it’s a landslide of questions, fears, and the sudden pressure to become a full-time advocate, medical translator, and emotional anchor before you’ve even finished your morning tea.
This page is for every parent who’s ever looked around a waiting room and wondered, “Am I the only one who feels completely unqualified for this?” Spoiler: you’re not.
The First Wave: Shock, Guilt, and Everything In Between
Every family’s story starts differently, but most of us remember the same gut-drop moment when a doctor first says something’s “not quite right.” Sometimes it’s during pregnancy, sometimes after birth. Either way, it’s a before-and-after moment.
You go from imagining your baby’s first steps to worrying if they’ll ever stand. From nursery colours to hospital corridors. And in between those two worlds sits guilt the kind that whispers maybe you did something wrong, or maybe you missed something.
Here’s the truth: you didn’t cause this. You didn’t fail. Arthrogryposis happens for reasons even specialists don’t always understand. You can stop searching your memory for the mistake that never existed.
The Weight of Advocacy
Once the initial shock fades, the paperwork begins therapy forms, appointment schedules, brace fittings, referrals, funding applications. Suddenly you’re fluent in acronyms you never asked to learn.
You become the voice in every meeting, the organiser of every plan, the person who remembers the surgeon’s name and the physio’s advice while still trying to keep dinner from burning.
It’s exhausting because it’s constant. You can love your child more than anything and still find yourself worn down by the system built to help them. That doesn’t make you ungrateful; it makes you human.
If no one’s told you yet.. you’re allowed to pause. The world won’t collapse if you need a day to cry, nap, or do nothing remotely productive. The appointments will still be there tomorrow. You matter just as much as your child’s progress does.
Finding Support That Actually Helps
People mean well. They really do. But unless they’ve lived this life the endless cycle of hope, therapy, and adjusting expectations they don’t always get it. That’s why connecting with other AMC parents can be such a lifeline.
Online groups and local networks offer more than advice they offer belonging. You can ask, “How do you massage around elbow splints?” or “How do you stop your baby from overheating in braces?” and someone will answer from experience, not theory.
If your hospital or therapist doesn’t already have a list of parent support organisations, ask them. Many families find incredible comfort through these supportive platforms below..
Arthrogryposis support groups on Facebook and Instagram we use Arthrogryposis mums and The Arthrogryposis group New Zealand TAGNZ
Give A Little and similar community initiatives for families needing financial help
Parent forums and blogs where you can read real stories, not medical pamphlets
Even one genuine conversation with another parent who gets it can lift the weight off your chest.
While it can be hard to ask for help, especially if you are not used to reaching out when you are in need, you may be a person of ‘we can make do attitude or she’ll be right till next week’.. its okay to reach out, you never know.. the person that reaches back may end up being someone you never knew you needed. someone to truly lift that weight off your shoulders so you can focus on more important things like some much needed rest, cleaning or spending time with your whanau.
We have found these local support agencies very helpful through our time having a new born
Pregnancy Help Dunedin Chris is absolutely brilliant to deal with!
Bellyfull are an organization run by volunteers who prepare frozen meals for new mums ready to heat and eat, so handy for when your tired and need that extra top up food in a hurry
Salvation Army have a lot of support from food parcels to budget advice, transitional housing, life skills and counseling available
Presbyterian Support Otago have some great resources available like Food parcels, Elderly Care, Family works support, volunteer jobs available and an op shop, they are such a beautiful caring team in there
Kai Food Pantries Check your local area for kai food pantry’s where you are welcome to donate or take as you need, these are popping up in most areas
Food support Wellsouth has set up a great food map to show where cheap food can be available for those in need
Churches if your into that sort of thing definitely find a church that aligns with your preferred beliefs and culture, through this journey I found a few moments where all I had was faith and it really helped at a time, we felt we were so hopeless.
Plunket are really helpful for quite a few things, weight check ins, any concerns regarding baby, milestone check-ins, family support
Mental Health and Emotional Burnout
No one wants to talk about burnout, but it happens. The constant appointments, the emotional rollercoaster, the sleep deprivation — it all adds up. Sometimes it feels like your whole life is lived on alert.
Signs of burnout can look like:
Snapping over tiny things that never used to bother you
Feeling numb instead of sad or angry
Struggling to make simple decisions
Crying randomly, even when “nothing’s wrong”
Feeling detached from people you love
If this sounds familiar, please don’t brush it off. It doesn’t mean you’re weak. It means you’re carrying too much, for too long, without enough rest or support.
Talk to your GP, midwife, or maternal mental health team tell them what’s really going on. Sometimes just speaking the words out loud takes the power out of them. And if someone offers help meals, babysitting, listening say yes. You don’t need to be the superhero version of yourself every day.
Little Things That Help More Than You’d Expect
Write things down. Not just appointments emotions too. It clears your head and keeps track of progress you might forget to notice.
Take photos of tiny wins. They become proof of how far you’ve both come when you’re too tired to see it.
Get outside once a day. Even if it’s just standing by the door while your baby naps. Sunlight resets your brain chemistry, apparently.
Accept mess. Some days, survival counts as success.
Talk to your partner or a friend honestly. Don’t sugarcoat it they can’t support what they don’t know.
And yes, professional therapy helps. Parents in medical worlds sometimes avoid counselling because they think it’s indulgent. It’s not. It’s maintenance. You can’t pour from an empty cup, and you definitely can’t stretch and soothe a baby all day while your mind is quietly falling apart.
Hope, Even on the Hard Days
You’ll see your baby do things the doctors didn’t expect movements that weren’t “supposed” to happen, smiles that defy every prognosis. Those moments are fuel.
You’ll also meet people along the way therapists, nurses, other parents who remind you that humanity isn’t lost. There’s a quiet army of kindness in this world, and it tends to show up when you need it most.
Progress might come slower than you hoped, but it comes. One stretch, one smile, one small triumph at a time.
And if you ever doubt yourself, remember: this isn’t the life you planned, but it’s one you’re building with courage, humour, and a love so fierce it could move mountains. You’re doing better than you think.
Why This Page Exists
Because no one tells you how lonely it feels to be strong all the time. Because some nights you just need to read words from another parent who’s walked this same uneven road.
If you’ve made it this far, take a deep breath. You are not alone. You’re part of a community of parents who understand what it means to show up for a child, even when it’s hard, even when you’re scared, even when the world keeps telling you to be realistic.
Realistic is overrated. Hope builds better futures.