I am writing this post from the Starbucks in our children’s hospital. For once, I’m not here with Alyssa. She is spending this rainy, Saturday afternoon at a family birthday party while I’m in the city with one of her brothers. He is here to spend a few hours with kids like him, boys and girls who have siblings with epilepsy.
Alyssa is obviously impacted the most by her disorder but in a way, our whole family was diagnosed with PCDH19 Epilepsy. She is the one who seizes but we all live in terror of the monster. My husband and I live life with an understanding that it is short and that has altered our world views. My boys have to accommodate her in ways that typical siblings would not. They have felt rejection from people in their lives who mattered but weren’t willing to bear witness to the chaos of clusters. They have lost friends because of her disorder and been embarrassed, or even injured, by her meltdowns. Bradley and Noah have been shuffled between family’s homes in the middle of the night while we’ve raced to the hospital and have lived with unfair restrictions. It’s a lot to ask from little kids.
Siblings of kids with special needs are often either ignored or stereotyped. They fade into the background while their sibling, sometimes by necessity, gets more attention. Children, even the best of them, can grow this resent playing second fiddle eventually. At the same time, these the more typical sibling is often cast as a saint. People assume that they are especially patient, caring, and perfect. This creates standards that are impossible to live up to and can make our kids feel even more misunderstood.
Trying to parent a child with a disability and their special needs siblings can be exhausting. It’s a constant tug of war. I don’t have it all figured out but here are seven tips I have found for somewhat successfully parenting a very diverse brood.
Carve out individual time for each child.
I know how difficult this is. You already feel like you are being pulled in 1000 directions at once. I’m not suggesting long, expensive outings. Those are great when they are feasible but are hard to maintain on a regular basis. Try to build a few minutes every day though where they can connect with you in whatever way works for your family. They might help make dinner or get their own bed time story but they have time so when they need to talk they can.
Give special needs siblings permission to not like it.
There are times when living with a child who has a disability just sucks. Your kids know this and constantly trying to silver-lining the situation doesn’t help. (Brene Brown uses silver lining as a verb so I can too.) Give them permission to be angry, sad, or afraid when they need to be.
Educate your kids so they have the words to educate others.
The important thing here is that you are not necessarily educating them for the purpose of advocacy. They may want to do that at some point but it is more important that they know enough to explain this part of their world to others. I don’t think younger kids need to know the nitty gritty and every terrifying detail of their sibling’s diagnosis. However, when they are embarrassed or hurting, they need to framework to explain what the monster in their house is.
Remember you can’t please all of the people all of the time.
There will be times when someone’s feelings get hurt or you can’t get someone where they want to go. Even moms with typically developing children experience this. Give yourself to do your best and be satisfied with that.
Give your children space to define their roles as special needs children.
One of your kids might want to be a vocal advocate who raises money for research and demands their school become more ADA compliant. Another might prefer to keep this side of themselves quiet or enjoy the spotlight for something unrelated. We work hard to make sure our atypical kids are not defined by their disability and their special needs siblings deserve that same respect.
Recognize achievements, even if they are out of reach for your child with special needs.
Every kid shines in a different way. Sometimes parents worry that making a big fuss over one child being on the A honor roll will harm the one in special ed. Try to celebrate each child for their own successes. It may be helpful to set individual goals based on abilities so that you can celebrate a goal accomplished. One child passing might take as much as another making honor roll or another making it a week without a trip to the principal’s office. All of those are worthy of accolades.
Model self-care for your children.
As your kids see you taking care of yourself, they will learn to do the same. Your special needs siblings need to know that they are worthy of rest, connection, and peace. When they see you start to pursue those, they will believe that they can too.
Remember that every family is unique. It takes time to figure out what each of your kids need and how you can be the best parent for them. There will be times that other parents don’t understand your actions and that’s ok. They aren’t raising your children and they don’t know your journey.
These are some of the ways that I try to balance the various needs in my household. I would love to hear your tips in the comments or on Facebook.