Sibling Support: Navigating The Journey of Caring for A Child With Special Needs

As the parent of a child with special needs, I often felt so torn between the ever increasing demands of my child with a chronic illness (PANDAS), and the needs of her younger sister who was just 3 at the time her sister was diagnosed with PANDAS.

This is something that at the beginning of our journey was actually really hard for me to talk about, because I felt like I was consistently in this position where I was never enough.

No matter what I did, it felt like it was just a drop in the bucket for my youngest daughter: supporting her emotional, physical, and spiritual well-being while having to deal with this immense crisis of pandas that completely flipped our life upside down.

Now it's a little bit easier for me to talk about because we've we've got some breathing room, but then? No. I was trapped in a web of shame and disappointment over all that I was unable to do.

And I think at the heart of every parent of a child with special needs is this deep desire to make it fair for everyone, make life fair and good and easy for everyone.

Generally speaking, if we have a child who has a complex medical condition, a health condition, a terminal illness, what have you, there is no way to make it fair. But that doesn't mean that it can't be good.

In order for me to figure out a way for life to still be good even if it wasn’t fair, I had to dig into our core values. I had to ask myself the question of: what are my core values as a family unit? How do you want people in your family unit to feel being home?

I know for me, that was pretty easy for me to to define because I've gone to a lot of therapy to recover from my own childhood, and I really wanted to give my children a childhood that they did not have to recover from, and I felt a huge sense of injustice over my youngest child because I felt like she was going to have a childhood that she couldn't recover from, and that was a devastating thing to experience.

However, it really did prompt me to dig in to what are our core values as a family? How do I want my children to feel in our home environment? No, I cannot change the fact that my oldest daughter has pandas. No, I cannot change her behavior. And I cannot change how that impacts her sister.

All that I can change and focus on is even with this big, horrible, devastating thing going on, I can decide how I want to show up as a parent for both of my children.

I can decide how to be the biggest supporter and the biggest encourager so that even as my youngest child is having to walk this out, she knows that she has a support system to lean into.

Our core values, if I had to define them, would be that our home environment feels safe. Meaning that we each have a safe place that I can go within my family members at any given time to get my emotional, spiritual or physical needs met. In addition to that, we do have to broaden it even outwards into the community aspect of a social support system, because a lot of times, in a home environment where a child has a sibling with special needs, the parents are not enough to meet those needs simply because the demands of the child with a chronic illness or a terminal illness or a behavioral diagnosis are just too big and too constant. There's not enough hands to do the jobs.

How To Meet The Needs of The Sibling

1. Build a Community of Support If I am not able to provide a safe, nurturing, comforting home environment for my child, then I need to start pulling on community resources, meaning asking a friend to go take her out for a little date or take her to the park so she gets a break from a chaotic day or doesn't have to go to appointments with me; asking the grandparents to take her overnight so that she could have some alone time and just get loved on and nurtured and cared for. There is a place for that too.

If our core value is feeling loved and safe and connected in spite of this big thing that's going on, then if we can't provide that because our hands are tied with behavioral issues, then I need to be able to provide that some other way for my child. (Not sure how to create a community of support? Join my community group here )

2: Make It Safe To Express ALL Emotions:

One of our other core values is open and honest communication and creating a safe place to express all emotions, regardless of how uncomfortable they are. That means that if my youngest child is having a hard day because big sister has been having a hard time and she feels really angry about that, then I'm going to spend some time helping her to work through that anger in a healthy way.

There were times that we would go throw rocks outside and we would name the rocks and we would say, “I'm really angry about this!”, and we would throw the rock and listen to hit THUD against the dirt. There were other times that we would play the game “icebreaker”, where there are these little plastic cubes that are set up in a tray, and you have a little hammer and you have to knock out the cubes without the whole thing falling apart.

We would take that hammer and we would say,” I'm really angry about this. I'm really angry about that. Today was a really sucky day”. And because our core value is open and honest communication and a safe place to express all emotions, we make it a habit to drop everything and prioritize self regulation.

3. Care For Your Own Emotional Capacity By Outsourcing

If You’re reading this and you’re thinking: “I don't have the emotional capacity at the end of the day to do that for my child. I'm so burnt out and done by the end of the day of parenting or managing behaviors or whatever that I just it's exhausting.” That is a reality. It Is hard. That was our reality for almost five years. So, if you can't, then I would encourage you, number one, to look at some other areas of your life that you can outsource. Meaning if you are able to, have someone come in and do your laundry once a week or have a caregiving service come take care of your child for an hour a week so that you can have that focused one on one time with your other child or children of the special needs sibling.

If respite service is not available to you, or finances are an issue, then we do have to get a little bit creative about how we're going to access support in order to meet those needs. Make sure to hop into the facebook community group and lets brainstorm together!

Ready for more? Make sure to grab the Guide to Hope-Filled Special Needs Parenting HERE