This post is an edited version of one of my most popular posts at My Home Truths. I wrote it many years ago, when a friend of mine received an unexpected diagnosis for their child. Like many of us, they were lost and felt the world give way beneath their feet when they first received the news. I wanted to share this advice with them so they could ground themselves again and regroup, to better support their child. These are 5 things I believe all new special needs parents should know.
When you receive a diagnosis for your child, your life transforms instantly.
In a moment, your life completely and irrevocably changes. In that moment, you go from being the parent of a “typical” child, with typical hopes and aspirations, to having those hopes and dreams dashed and crushed beneath your feet. The life you expected, the path that you had laid out for you and your family is now a maze with no clear direction or end.
I can still vividly remember all the overwhelming feelings that hit me like a wave with the first diagnosis we received. There was shock, disbelief, anger, guilt, dismay, panic, denial, despair, hurt and confusion, all there, all at the same time. Over the following weeks, months and years those feelings remained. They’ve ebbed and flowed since, but they’ve never truly gone away.
The feelings will overwhelm you in the beginning but try not to lose yourself in the storm. You will be battered and bruised but the storm will ease. Trust me. You will ride it out. If you can anchor yourself tight in the beginning, you will be okay and you’ll be able to guide your child and your family forward.
You will learn to better manage your emotions. I’ve learned to recognise them and put them to one side so I can concentrate on my kids and their needs. I’ve made the decision to focus on the positives, on moving forward and giving my kids the best I can, rather than dwelling on my own feelings. But, I’m human and those feelings will always be there – I’ve come to realise that’s the reality of special needs parenting.
If you are a new special needs parent, know it will be okay. It’s not going to be easy and it’s certainly not going to be the parenting experience you expected. It can seem overwhelming but here’s some advice that I wish I had received when I first hopped on this unexpected ride. Here are 5 things new special needs parents should know when your child first receives a diagnosis.
Don’t be afraid of your emotions
You need to recognise and accept that everything you feel when your world is first thrust upside down is natural. In order to accept the diagnosis and move forward to give your child the best possible outcome, you need to acknowledge your feelings and move through the stages of grief that will follow.
It is fine for you to cry everyday – I did. It is fine for you to seek professional help if you feel you are not coping – I did. It is fine to take some time out to try and work through everything – I took 5 weeks leave from work when we received Gilbert’s autism diagnosis. Don’t fight your feelings. Accept them and then use them to move on.
Know that you are not alone
There are others out there dealing with special needs too and it’s important to connect with others facing similar challenges to you. If it’s too raw and confronting to meet with others in person, find an online group to join. I have found albinism and autism support groups on Facebook and they are a wealth of information, personal experience and support.
There are also fabulous special needs parent blogs out there, not to mention the many specialist pages providing advice, assistance and support to the families of the newly diagnosed. Find them, join them and take in information at your own pace.
Make time for yourself too
This is not easy but you need to give this a go. You will not be an effective carer for your child if you are mentally and physically exhausted. You need to look after yourself and that means trying to find some time away AND not feeling guilty about it.
If you’re in a relationship you also need to find time to spend with your partner. This is what we’ve struggled with the most but it’s something I am determined to get right. The sheer strain of dealing with the daily demands of additional needs is unbelievable. At times you have to consciously set that aside and devote yourself to each other, else you’ll lose yourself and your relationship. It’s that simple.
A diagnosis doesn’t change your child
Do not let a diagnosis or a name or a label change how you love and cherish and protect your child. Your child is more than just a condition or a diagnosis. Celebrate their achievements, recognize their strengths, support their efforts. They will be all the sweeter, particularly if you never expected them to achieve them.
Believe in yourself
You are your child’s best advocate. You will feel powerless and overwhelmed at first. You will wonder if you’ll ever have the knowledge to make treatment and therapy decisions for your child.
Never forget that you know your child best and you will always be their best advocate throughout your journey. Believe in yourself and trust your instincts when it comes to making decisions for your child. You may not be an expert in your child’s condition but you ARE an expert in who they are, which is just as important.
This post is part of our new series “5 Things Special Needs Parents Should Know”. If you’d like to submit a guest post, or if you have a topic you’d like covered as part of this weekly series, send your idea to email@example.com