Flashback Truths: Advice I Wish I’d Received as a Special Needs Parent

I’m currently enjoying a blogging break so I can soak up the joys of the season and spend some quality time with my three little bears (in reality I’ll probably be physically intervening in their arguments and trying to find some peace and quiet by sneaking off to watch the tennis…but you know what I mean!)

While I’m away I’ll be re-posting some of my favourites for you to enjoy all over again. Today’s post was originally published here.

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Recently a few people I know have received various diagnoses for their kids, changing their lives in an instant. In trying to work out what to say to them in response to this news, I thought back to when I first became a special needs parent, and relived, in a way, the swirl of all those emotions that welled up in me after Gilbert Bear’s diagnosis of albinism when he was 11 weeks old.

In a moment your life completely and irrevocably changes. In that moment, you go from being the parent of a “normal” 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 conclusion.

I can still vividly remember all those overwhelming feelings that hit me with the first diagnosis we received nearly 8 years ago now. 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, although they varied in prominence and severity – but they never went away.

Obviously Gilbert’s subsequent diagnosis of high functioning autism nearly 4 years ago now, plus Matilda’s recent Aspergers diagnosis also hit me hard. I confess, I grieved these feelings out again for each diagnosis and it never got easier. I try and put on a brave front but I still feel all these emotions to this day.

Now, I just manage them better. I try to put them to one side and I focus on the positives and moving forward and giving my kids the best I can. But those feeling will always be there – I’ve come to realise that’s just how this whole special needs parenting gig rolls.

So, hearing about others receiving similar news, I wanted to find the right words to help them on the start of this journey. I want to give others the advice that I wish I have received when I first hopped on this unexpected ride.

With this in mind, here is my take on the things special needs parents need to know when they embark on this fork in the road.

1. 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.

2. 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. I was not comfortable with this at first – I didn’t feel I needed help and thought I could do this on my own. But it is only in the last couple of years (coinciding with finally joining some groups myself) that I have felt more at peace with the diagnoses and how we are dealing with them.

3. Find a support group and find the courage to join up. If it’s too raw and confronting to meet with others in person, find an online group to join. I have found an albinism group as well as many autism support groups on Facebook alone 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, 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.

4. Make time for yourself and for your partner. 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 are in a relationship you also need to find time to spend with your partner. This is what we have struggled with the most but it’s something I am determined to get right. The sheer strain of dealing with the daily demands of a special needs child 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.

5. Remember, regardless of the diagnosis, your child is still the same precious person they were yesterday. 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 it.

6. Believe in yourself and in your ability to make decisions regarding your child’s treatment. You are your child’s best advocate. You will feel powerless and overwhelmed at first and you will wonder if you will ever be able to 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.

I hope this lists helps you as a special needs parent or helps you assist others in adjusting to this journey.

This is not an exhaustive list by any means and I would love to hear from you too. What advice would YOU give to someone in this situation?

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