The Sibling's Side

On the right side of my blog, you'll see several pages listed that you can click on to read blog posts that fall under that category. One of them is called 'The Sibling Series' which all started when a mom Tweeted me, asking me to give her and other parents some advice on how to teach the siblings about the health issues that their other siblings are going through. In each post, I gave advice on how to make sure they aren't scared of the machines the sibling uses, or how to help them understand what they are going through. I don't think I ever spent a moment though explaining to parents that the siblings of children with special needs have their own needs.

I cannot remember a time when any of my other siblings have been sick and I've had to live at home without mom and dad because they were at the hospital for one of them. I have always been the one in the hospital for long periods of time. My birthday has never been missed because of a sibling who was in the hospital. But my little sister has come to the hospital cafeteria to celebrate two of her birthdays with me. And never once has she ever complained about it. My parents have never had to miss a school production I was in because of a sibling who was in the hospital. But Cami's third grade "Bug Play" had to be missed by my mom because she was needed at the hospital. My sister never complained about that either. 

I've gotten used to being somewhat the center of attention because of how sick I've been in my life. My mom has often pointed out that that isn't uncommon amongst kids who are chronically and critically ill like I have been. There are times in my life when I have needed to be the center of attention because I was in a horrible mess health wise. But like all people who have an illness, we also need to learn that there are other people in our lives and their stories matter too. 

When my parents asked me what I wanted to do for my 21st birthday and I told them I wanted to go to Disneyland, my older sister who was born with a VSD jokingly said, "Man when I turned 21 they didn't take me anywhere!" In response I replied with a laugh and asked, "How many times have you almost died?" "Good point." Was her reply and we laughed it off. But I should've acknowledged that my older sister's story is just as important as mine. Sure it was a joke and we laughed it off... but Dana's story matters too. All of my siblings have stories that matter whether they have an illness or not. 

Reading a blog post by a friend of mine helped me to realize this. My dear friend is a sibling of two brothers who have Cerebral Palsy, while she is the "normal" one. I've posted the link to her blog below and encourage parents of kids who have special needs to read this, along with anyone who has an illness or disability of any sort that has siblings who are healthy. Yes our lives are hard, but lets not forget that our siblings have struggles too and that they are just as important as us.

Please click this link to read a beautiful blog from the sibling's point of view. Claire's Blog

Hope and Love

Becca 

The Siblings Series - How to Talk to Them

A few months ago, a mom asked me on Twitter to write about strategies or tips for raising siblings of kids with CHD. I thought that this several part series could also be applied to siblings of a child with any sort of special needs. I decided that the first post for this series would center around how to tell the sibling about their siblings needs, health or an upcoming procedure.

• When explaining to your child about another child's health - keep their age in mind. Words you use to describe a feeding tube will be different for a 5 year old than the words you use for a 15 year old. And the comprehension will differ based off of their age. 
• When my niece who is 4 first asked me about my scar, I simply told her, "My heart doesn't work like yours, so the doctors had to fix it." But if a 16 year old were to ask me, I'd tell them, "I have a heart defect, so I had to have surgery to try and make my heart work more effiencently." 

• If the child who has the special needs or health concerns is old enough and comfortble with it - let them sit in on the conversation and answer questions that their siblings have. 
• I've found that in my experience, this opens up the relationship. It lets the healthy sibling know that the sibling with special needs is open to discussing it, and having open conversations between siblings can be a good thing. 

• If your child is having a procedure, and it is a surgery that has a lot of risks involved - before you decide what to tell your siblings think about their age and comprehension.
• A 6 year old doesn't need to know that her older sister only has a 20% chance of surviving the surgery.While a 19 year old sibling may ask you to tell them everything and hold nothing back. 
• As a parent you  might feel guilty for lying or giving false hope. But you may also feel bad that you laid everything out so clear and feel as if you put too much stress onto another sibling's shoulders. 
• If you are in pediatric hospital, I would highly suggest you ask for a Child Life Specialist. They are trained to help explain things to kids and teens in words that they will understand but they are also there to help comfort and reassure. 

• So after all is said and done and the sibling comes home from the hospital - how do you explain to the other siblings that just because their brother is back home doesn't mean he is 100% better? 
• Explain to the sibling in terms that they will understand that their sibling is still healing and just needs some more time before they feel 100% better. 
• When the child with special needs or health issues gets back to "normal", then treat them as such, so that the other siblings will see that they can do the same as well. 
• However - remind the sibling (if they need to be reminded) that just because the child with special needs or health issues looks "normal" and for the most part acts "normal" that they need to keep in mind that they can't expect them to be exactly like themselves. For example, my family treats me like all the other siblings I have. So when we go some place and we have to do a lot of walking, sometimes members of my family (even my dad!) forget that I have to walk slower and take more breaks. So I just remind them with a simple, "Hey, can we slow down?" It's a simple way that reminds them of my needs but doesn't make a big deal out of it. 

If any of you have any suggestion for one another or have a question that other readers could help you answer or figure out - please comment below. It would be a great way to meet other parents of kids who have special needs or health issues, and it would be a great way to get some techniques or ideas from other parents!

Hope and Love,

Becca 

Disclaimer: I am in no way a specialist. What I say is pure opinion based off of my own experience with my family and my 13 siblings. What works for some families may not work for yours, so please feel free to disregard anything I say that you don't think would work well for you or your family.