Presented by Susan Levine and Brian Skotko
This presentation began with Susan and Brian asking the audience to make a list of words about *our* experiences with *our* siblings. I, and most others, were shocked that the list was 80-90% negative. Brian and Susan then pointed out this was the response of all the groups and if we, those who have ‘typical’ sibs, have this many negative emotions about our sibs, then we should not be surprised, or upset if our children express negatives about their sib with DS. It’s not just the DS, it’s part and parcel of the sib experience.
Having said that, research states that the sibs of children with DS actually have a MORE positive experience then sibs who don’t have a family member with DS. Sib’s of special needs people grow up to be more compassionate, caring and often enter into the ‘helping’ careers.
Brian had a few personal stories about learning how to braid his sister’s hair one summer when in middle school. His sister, Kristen, was bothered when her pony tail would allow her hair to straggle down into her eyes and rather then her getting out of the pool each time to have her mom re-do the pony tail, she would ask Brian who at that stage in life was not all that excited by his guy friends seeing him do his sister’s hair. So he figured out if he braided her hair prior to the pool, it eliminated the straggling hair problem and he said by the end of summer he could braid hair better then anyone he knew. 🙂
He also mentioned that he had a hard time thinking of negative experiences with his sister, even though he knows he had them He called it’ selective amnesia’ and says he remembers all the good stuff. Another story he related was regarding his sister’s love for music and how their lives were measured by the current musical trends… Barney, Sound of Music…. and how his sister wanted to hear them over and over and over…. ( my family can relate to that too… for a long time we had declared the car to be a ‘High School Musical Free Zone‘ )
He then went on to tell us to take the sibs complaints seriously and to not only listen, but to also admit when something bothers you too. “Ya… if I hear ‘Fabulous’ one more time, I am going to SCREAM” and then find ways to address those concerns asking the sibs for their advice for a solution. In their home they bought Kristen a TV downstairs where she could go and get her musical fix away from the family’s ears.
Examples of sib questions were given along with some brainstorming for answers and presented a list that compiled from the answers of sibs when asked what they would like to be able to tell their parents:
Raising Your Other Children
Sue Levine and Brian 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.
2. Allow brothers and sisters to express negative feelings.
Acknowledge the fact that sometimes it is hard to be a brother or sister to someone with a disability ( “When I have troubles, let me talk to you about it.”)
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.
4. Limit care-giving 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 (” Don’t blame me cause I’m the oldest”)
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. Encorage parents to access support for themselves. When parents seek out support systems for themselves, they tend to be better equipped for the journey.
Personal note: I asked about the fact that my children ( I have 7) have no interest in meeting other siblings or going to any kind of activity that is designed as ‘support’ for DS. Sue pointed out to me, after a bit of conversation, that it would appear that my family *is* a self contained support group that leans on each other and talks freely about their concerns and frustrations. I am glad that I asked, as their lack of interest had me worried. They don’t mind attending fun things- they just don’t feel any need for ‘support’ outside the family.
Carol in IL
AIM doihavtasay1 GigaTribe doihavtasay
Mom to seven including Christine, 7 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS.My problem is not how I look. It’s how you see me.
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