When I talk about special needs families, I can't ramble on for very long without mentioning the important subject of siblings. They are my heroes. They don't ask to be put into this sometimes crazy family situation, yet they must live with the results of it, for good or not so good, for the rest of their lives.
That's a lot to ask of them, and it makes it critical that the adults in their lives tune into sibling's needs and work hard to meet those needs-- for the sake of everyone's future.
I love siblings so much that I have devoted an entire chapter to them in my book Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations. That chapter includes more than one wise and wonderful sibling voice, along with information about a terrific sibling resource called Sibshops, an organization designed to help siblings better handle their valuable roles! Check it out!
I've asked my daughter to join me in rambling about siblings this week in an informal Q & A. Jenna recently graduated from college with a degree in visual journalism. I think she turned out great for a sibling in a special needs family!
Unfortunately, her brother, Eric, passed away in 2003 at age 12. As Jenna reflects on his life, we both hope that her words will help you have a little better understanding about what it means to be a sibling in these challenging and often amazing families.
If you want to know more about Jenna's sibling role, and that of some other wonderful sibs, you've gotta read Breakthrough Parenting!!!(had to get the sales pitch in there for my publisher!!) I promise you that the sibling chapter alone makes BP worth your time. I have found that these siblings are often exceptional human beings, thanks in part, to their demanding roles. For more about Breakthrough Parenting, visit my website: JudyWinter.com.
Q: Jenna, tell me the first word that comes to your mind when I say siblings and special needs:
Q: What do you remember most about your brother?
A: His joy for life. When I think of my brother, I think about happy he was.
Q: What was the most difficult thing about being Eric's sibling?
A: How much attention he needed when he was younger, and all the things we had to consider before we went anywhere.
Q: Do any specific challenges come to mind?
A: I remember when we traveled to Florida and we had to bring a lot of stuff for Eric's needs, including his special seat to sit in so he could fly.
Q: Did your brother every embarrass you?
A: Only when he got upset and acted out, especially when he was younger.
Q: What can parents do in this kind of situation to help siblings feel better?
A: Stay calm about it. Don't get upset with the sibling with special needs. If a parent overreacts to the situation, it can make it even worse and more embarrassing for the sibling. Also, let the sibling know that they haven't been forgotten in the moment, and allow them to express their feelings about it. Check in with siblings informally later on to see how they're doing. But don't press them into talking about it if they don't want to discuss it right then.
Q: What do you think is the hardest thing for a sibling to face about life with brother or sister with a disability?
A: It's hard having to explain your sibling to others and have them understand the disability. Making sacrifices is hard, too. Like when you have special family plans and your sibling's needs cut those plans short or they get cancelled because of things like illness or trouble finding childcare.
Q: What do see as the positives of having had a brother with special needs?
A: I definitely have an awareness of a population that doesn't get talked about enough, one that people are often uncomfortable talking about. I think I am more open to accepting people with differences despite what those differences might be.
Q: What did we do as parents that made your role easiser?
A: You always thought about me and made time to give me attention, too. You met my needs, not just Eric's. There was always time for me to pursue my favorite activities and live out my life dreams, too.
Q: In what way did we as parents help make your sibling role easier?
A: By your positive example. You set a good example for everyone around you. You were proud of your son, and because you weren't embarrassed by him, neither was I.
Q: Is there anything we could have done differently?
A: I don't think so. You did the best you could.
Q: What do you miss most about Eric?
A: How happy he was to hang out with me. That made me happy.
Q: Your advice to other siblings who might be struggling with their role?
A: Love the good pieces of your sibling. Focus on the happy moments. Try to enjoy what your sibling enjoys and get involved with them, regardless of anything they might do that embarrasses you or makes you mad, or leaves you feeling left out.
Q: If you had a choice would you have changed Eric's special needs?
A: No. But I wish I could have still had Eric in my life and also have had another sibling without special needs to share this whole sibling experience with.
Q: Anything else you want to add?
A: I think that covers it, for now.
No problem, mom!
..Now it's your turn to talk to your child. Make a real effort to connect with all the kids in your family this week. Cause each one is incredibly special....and they all need your parenting.