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6 Things I Wish Someone Told Me When I Became a Special Needs Parent

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When you receive a diagnosis for your child, your life completely and irrevocably changes.

The life you expected and the path you laid out for you and your family is now a maze with no clear direction or conclusion.

I can still vividly remember all the overwhelming feelings that hit me with the first diagnosis we received. There was shock, disbelief, anger, guilt, dismay, panic, denial and confusion.

I felt each and every one of those emotions all at once. Over the following weeks, months and years, those feelings remained, in one form or another. And with each subsequent diagnosis we received, they hit me again with renewed force.

Over 10 years on, I now know these feelings will never completely go away, and I have learned to manage them better. But for someone new to the special needs parenting world, it can be a huge shock to the system.

So I want to give them the advice I wish I had received when my journey began.

1. Don’t be afraid of your emotions.

You need to recognize and accept that everything you feel at first 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 that will follow.

It is fine to seek professional help if you feel you aren’t coping. It is fine to take some time out to try and work through everything. Don’t fight your feelings. Accept them and then use them to move on.

2. Know that you are not alone.

There are other families out there with special needs, and it’s important to connect with those facing similar challenges as 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 has only been in the last few 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 have the courage to join up.

If it’s too raw and confronting to meet with others in person, find an online group to join. There are countless local, national and international support groups on Facebook and they offer 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.

4. Make time for yourself and your partner.

This is not easy, but you need to give this a try. You will not be an effective caregiver 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. The daily demands of parenting a special needs child can be strenuous. At times you have to consciously set that aside and devote yourselves to each other, or else you may lose yourself and your relationship.

5. Regardless of the diagnosis, your child is still the same precious person he or she was 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 and support their efforts.

6. Believe in yourself and in your ability to make decisions regarding your child’s treatment.

You will feel powerless and overwhelmed at first. 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.

Follow this journey on My Home Truths.

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Originally published: February 9, 2016
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