Hello!

If you have just received a diagnosis for your child, you are facing something that no parent should have to face.

I went through this twice, with both my children, and have put together a Survival Guide to help others in the same situation. I hope it helps you:

1. Connect with your community

Whether your child has been diagnosed with a relatively common condition or an extremely rare disease, you are in good company.

My youngest child Charlie has CDKL5 Disorder, a condition that is extremely rare (1 in 100 million). But when he was diagnosed, I did a Google search and quickly found a global support group on Facebook. I have even met other CDKL5 families living in Australia.

Families like this are an amazing source of information about medical treatments, therapies and importantly, emotional support.

You could even make lifelong friends with fantastic people you never would have met otherwise.

2. Get the professionals involved

If your child is diagnosed with a profound disability, you experience a kind of grief that is quite unique.

Some specialists call it “Chronic Sorrow” because it is a lifelong process with no end point. There is another kind of grief called “Anticipatory Grief” which is experienced by parents who have a child diagnosed with a terminal illness.

My particular kind of grief was a hybrid of these two types. My son will be profoundly physically and intellectually disabled but to make matters worse, his condition also comes with increased risk of sudden death.

So not only do we fear for him in the future when we are not around, we are also terrified that he won’t outlive us.

I don’t say this lightly but this situation is best left to the professional counsellors. If money is tight, as it often is for families caring for a child living with a disability, there are children’s charities (e.g. Variety) and other not-for-profit organisations (e.g. Carers Australia) that can provide respite services and counselling.

I really recommend this especially in the early days after the diagnosis.

A counsellor provides something that friends and family can’t provide – a person to listen to your darkest thoughts without judgement and to help you learn to live with the grief.

If you are anything like me, you also don’t want to overburden your friends with your negative feelings. They do play an important role in your recovery but for me it was more about distraction and reminding me that I can still have fun.



3. Stop the negative spiral in relationships

The divorce rate shows that marriage is a tough gig at the best of times. Add a child with a serious diagnosis into the mix and you have the perfect storm for divorce.

When two heartbroken parents grieve differently for their child, this can cause terrible friction in the relationship.

Some people are overwhelmed by anger and take it out on their partner. It’s important to note that this is not the case for all families – many couples feel that this experience has brought them closer together.

From personal experience, I know that the pure exhaustion from sleepless nights worrying about your child can mean that you simply have no emotional energy left for your own marriage.

Then there are also the siblings. They can be severely affected by the diagnosis too and will feel a mixture of emotions about the situation – but they lack the emotional maturity to handle it. This can lead to all sorts of issues including depression, anxiety and anti-social behaviour.

The good news is that all these relationship problems are predictable and that means you can be proactive to stop the negative spiral.

Get a sitter or respite carer to go out with your partner at least once a month – even when you don’t feel like it.

Take this time to reconnect and build intimacy in the relationship. My counsellor recommended that we set aside time each week to tell each other what we found helpful that week and one thing that the other could do to make life better.

This process can help stop small issues from blowing up into problems that are unmanageable. Parents also need to spend time one-on-one with their other children and encourage them talk honestly about their feelings without reprisal or guilt.

4. Put the happy back into your life

You definitely need to give yourself time to grieve for the child you expected to have and the massive changes to your life.

One of the best ways to start the healing process is to take back control of your own happiness. They say that the secret to happiness if a positive outlook, and I agree.

When I look at my situation with positivity, it makes the difficult days more manageable.

I started by writing a list of the things that make me feel happy and then I made a concerted effort to allow them into my life. It doesn’t have to be expensive… it could be as simple as a walk by the ocean, a picnic with your mothers group or cooking your favourite meal. But you do need to make it happen and enjoy it. I have found the power of music is incredible. When I am listening to upbeat music I never feel upset. No matter how hectic your schedule is, there is always a little time to put the happiness back in.

To give you an example of how you can put the happy back into your life, I developed a community program called The Magical Bears that donates a teddy bear to children living with a disability on their birthday. I have set up an online store to sell Magical Bears and books to fund the donations. I get so much pleasure from knowing that I am supporting these families – it keeps me going on the darkest days.

If you have anything else that has helped you cope with your child’s diagnosis please SHARE with others in the comments below.

  • There is lots of support. You just have to search out what you need and get in contact.

    Reply

  • Avoid support groups until you know your child’s diagnosis fully!
    I joined one the day after my child was diagnosed. I didn’t know much about the diagnosis. When on the support group page I found out that it can be fatal for some. Naturally that stuck with me and unleashed a whole world of emotions. I found out that it’s fatal only in extreme cases and my child only has a mild case. Best to spare yourself the unnecessary heart ache and hold off on the support groups.

    Reply

  • I have 2 Autistic Boys and they claim there’s help but i no otherwise. Smashed tvs, holes in walls, broken windows yet they call safety equipment ‘restrictive practices’ and we have been trying for over a year to be able to be allowed to spend there funding on things to keep them safer. Took 18 months just to get a OT who’s frankly done nothing. There’s not enough workers out there and there giving us a ‘break’ is a hour at the park?! Once a week. Ridiculous. We have no family and im sure there many other families out there like us all they need to no is your not alone. Where all struggling and soldiering on doing what we gotta do.

    Reply

  • Good points but this is not possible for all.
    I’ve a friend who has 5 foster kids, they’re all on the NDIS scheme, but she can’t find the support due to the severity of the cases eventhough she has a support coordinator; so frankly she has no respite whilst she has the funding for it.
    She needs lots of repair done to her house as walls and doors are broken due to escalating behaviours of the kids and neither the Department nor NDIS wants to fund for it.
    Her marriage broke down and she lost many friends due to the behaviours of these kids. My heart aches so much for her

    Reply

  • As a therapist this is a really good summary

    Reply

  • Really great things to remember

    Reply

  • I couldn’t imagine going through what those parents go through. I hope everyone gets the help and support they need whether from family and friends or complete strangers. Every life is important.

    Reply

  • Great advice

    Reply

  • I hope this helps others who may be going through something similar. I can’t imagine what it’s like to go through this and I am thankful every day that I don’t.

    Reply

  • This is really helpful article. Thanks for sharing.

    Reply

  • All these are really good suggestions – particularly respite! You can’t be the best carer you can be if you’re not rested.

    Reply

  • Great article but thank goodness I have not had this happen to me

    Reply

  • Great tips for all you mums out there. Pity there wasn’t any google when my family was growing up, but word of mouth back then also put you in touch with like-minded problem children, thank heavens. It might have been harder, but it was still available.

    Reply

  • We were given the worst diagnosis and we did unfortunately loose our son at only a few days old. we were ready to face the original diagnosis head on but due to complications it ended horribly… we leaned on each other, our family’s, and our friends who stuck around. You don’t realise how many people to loose when you are faced with something like that. Talking to a family counsellor can be a big help, both together and seperate. And just be open and honest with each other


    • Aw bless Mumofboys, so sorry to hear you went through this, that must have been so hard. I’m glad you had family and friends surrounding you.

    Reply

  • Real friends will help out in difficult times. Go to those you love for support.

    Reply

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