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9 Things I Would Say to a Parent Dealing With Their Child's New Diagnosis

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We have been on this journey of parenting a child with a disability for almost three years now. Roland, my son, has taught my husband and I so many things in the short amount of time he has been here. He continues to teach me every day about myself, about love and about compassion. I want to pass on some of that knowledge to you, new parent of a child with a disability.

If your child was born with a disability, if your life as a parent isn’t going as you thought it would, this is what I have learned:

1. Allow yourself to grieve.

Grieve for whatever you need to grieve for. Do it for as long as you need to, as often as you need to.

Remember that grief is a cycle. Think of it like a circle, and not a straight path. One day you will feel like you have a handle on this whole parenting a child with a disability thing, and everything will be OK, and the next you will want nothing more than to spend the whole day in bed sobbing. And that is perfectly normal. Having periods when the grief/mourning comes back is not a setback. As we continue this journey as families of kids with disabilities, there probably will be things or events that happen that can open that wound you thought healed, and it will bring you to your knees. Let it. Then get back up and kick ass like you always do.

That being said, I understand this was not what you wanted for your child, and this makes the getting back up part especially difficult. I know it can be difficult to watch your child struggle with things other kids don’t. But please know your child’s happiness is not contingent upon them doing everything their peers do. They will find their own way of doing things they want to do (even if it means you have to help them).

While you’re grieving, keep in mind: this life isn’t bad. It’s just different. Your child’s disability doesn’t have to be a tragedy, unless you choose to look at it that way.

2. Forgive yourself.

None of this is your fault. Your child’s disability is not your fault. Say it out loud: it isn’t my fault. Remind yourself of this every day if you need to.

Next, forgive yourself for any and all of your shortcomings as a parent. As parents of kids with disabilities, some of us beat ourselves up, put ourselves down, tell ourselves there is more we could be doing for our child. But being a parent is exhausting — physically, mentally and emotionally. Add parenting a child with disability and it is a little bit more exhausting. We do the best we can with what we have, at any given moment. That is all we can do. So if you didn’t make a few phone calls today, or you had to cancel a therapy appointment, or you sat and played games on your phone while your child watched cartoons instead of doing flashcards with them or sensory activities — or any of the other countless things we plan on in a day — that’s OK.

3. Self-care is so important.

Self-care is probably the most important thing I want you to take away. Self-care is key to surviving, thriving and staying sane while being a parent of a child with extra needs. So much is counting on you. We tend to deal with more stress than the average parent. Because of this, self-care is absolutely necessary (and usually needed in more copious amounts than the average parent). As the saying goes, “you cannot fill others from an empty cup.” You cannot be the parent you want to be if you do not take the time to take care of yourself first.

Besides, you deserve it. You deserve to have time to yourself, to spend it doing whatever you want. You deserve time where you are not “mom” or “dad,” where you are not taking care of someone else. You deserve time dedicated to nourishing your soul and to taking care of you. Self-care is not a luxury; it is a necessity, just as much as washing the dishes or taking out the garbage. Do it! Pencil it into your planner, put it on your to-do list if you have to.

And remember, some of us require more self-care than others to stay calm, happy and healthy; this is because each one of us has a different threshold for stress, and that’s OK. Do not compare yourself to others, or think the amount of self-care you require is, in any way, a reflection of your self worth.

4. Follow your instincts.

Follow your instincts. Trust your gut. Listen to that inner voice. However you want to put it — do it.

For me, I think of my instincts as the little voice in the back of my mind. If, at any time on this journey, a little voice in the back of your mind speaks up — listen to it. It may be quiet at first, barely recognizable, even. But I guarantee that voice is almost always right. Hear it out, and go from there.

5. Be the mama bear/papa bear you are meant to be.

Often times listening to that inner voice or following that gut instinct leads us to letting mama bear out of her cage. Being a mama bear means being an advocate for your child. Sometimes this looks like educating your child’s medical team about what he/she needs, fighting for therapy services, pushing back against a school district, etc. Being a mama bear is about standing up for your child, fighting for what is right (for them), not letting anyone intimidate you or write you off, and also not caring what others think of you.

6. Adapt.

You might feel like parenthood hasn’t turned out how you wanted it to (or even expected it to). But you will adapt to this life, and so will your child. Your child will do things in their own time, in their own way. And that’s OK.

Never underestimate the power of human adaptability (that goes for your child and you).

7. Find your support system — and cling to them.

A support system can be made up of family, friends, your child’s medical team or therapists, or even online friends. These are people who understand your struggles as a parent of a child with a disability, or who are always willing to listen to you vent, or who will sit with you while you ugly-cry, or will offer to bring you a cup of coffee or help with the housework that can be so often neglected. People who just get it.

8. Remember: you are enough.

You are doing the best you can.

You are doing enough for your child.

You are a great mom/dad.

9. In the midst of your survival, don’t forget to live.

It can be easy to forget how to live, when you spend each day just trying to survive. But you have to. Take time to shut off all the worries, the fears; put off housework for another day; make those phone calls tomorrow. Slow down. Enjoy your child as they are right now, for everything they are.

Follow this journey at Raising Roland.

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Getty image by Thomas Northcut

Originally published: December 12, 2017
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