When we got Ainsley's diagnosis, one of my first questions was "what will this mean for Gavin?" Later I wondered how and when to tell him. When will he notice that something is different? Adrian & I decided to leave it alone until he asks us about something he's noticed. The only thing he asked about were the names of his therapists. We explained that he didn't have therapists come to play with him when he was a baby.
One day as I was taking Gavin to Pre-K, he got upset that he wasn't going to be there with Miss Jane, Ainsley's PT, and that he wouldn't know what to work on with her. I explained that Miss Jane leaves notes about what they work on, and that we could read it together that evening. That was kind of the end of it for awhile.
Then on his 6th birthday, as we were planning to go to the Buddy Walk later that day, Gavin asked "What's Down Syndrome?" We explained that it changes the way Ainsley learns to do things, and that it may take longer for her to learn something but that she will learn to do everything that he can do. Honestly, it's not something that we talk much about.
On Life with Bubba, Chicky and Nika , Bethany explains:
Last year I attended a conference in which I was able to hear Dr. Brian Skotko do a sibling workshop. I just came across this list of great tips to remember when dealing with siblings of a child with special needs, as written by Sue Levine and Dr. Skotko ...
1. Be open and honest, explaining Down syndrome as early as possible. Encourage other children to ask questions; answer them on their level as honestly as possible. But don’t wait for siblings to askquestions. Bring up the topic routinely in conversation.
2. Allow brothers and sisters to express negative feelings. Acknowledge the fact that sometimes it is hard to be a brother or sister tosomeone with a disability And don’t expect siblings to be saints.
3. Recognize the difficult moments that brothers and sisters may be experiencing. As brothers and sisters grow up, they often begin to realize that not everyone in society shares their family’s beliefs and values. Recognize situations that may be potentially embarrassing or stressful and do what you can to help minimize the difficulty.
4. Limit caregiving responsibilities. Children need to be children. Allow them to be brothers and sisters, rather than becoming an extra parent.Your children with disabilities also benefit from having siblings rather than a family full of parents.
5. Recognize the individuality and uniqueness of each child in the family. Be sure to point out what makes your children special; they want to know that you notice them, too. Celebrate their accomplishments and schedule special time with each of your children.
6. Be fair. Listen to both sides of the story and be certain to make sure each child has responsibilities appropriate to their level of ability
7. Take advantage of supports for siblings. Both local and national groups have opportunities for siblings to meet each other. Such experiences are often validating.
8. Encourage parents to access support for themselves. When parents seek out support systems for themselves, they tend to be better equipped for the journey.
These are good guidelines for Adrian & I to keep in mind in the years to come. For now though, Gavin rarely mentions it and I think that's a good thing. Skylar isn't old enough to know much about it yet. To her, Ainsley is her older sister; the one who steals her toys, shares her sippy cup, and knows how to ask to watch Baby Signing Time.
Yes, Ainsley has DS. But she also has a great smile, an adorable laugh, a mischevious streak, and a hug that melts away a day's worries. And that's way more important than anything else.