Yes my daughter is only 7.5 yrs old. Yes I do think about her future. I've thought about this topic off and on over the past several years. I try not to dwell on it too much, because honestly, it is one thing about her future that makes me sad.
While the probability is high that Kayla can have a child, the reality is that she probably shouldn't. She's only 7. I hate to put limitations on her like that. I hate to have a positive you-can-do-anything attitude about my child, (you can do this! you can do that!) and then say, 'oh. but it wouldn't be in your best interest to have a child.' But the reality is she would need a lot of help to raise a child. Anyone raising a child knows it takes a lot of work. It's hard.
So. I don't like to think of that part of Kayla's future too much because it makes me cry to think she won't get to experience being a mom.
I thought about it a few years ago when Carrie Bergeron and Sujeet Desai (both have Down syndrome) got married. Their marriage was widely reported on and celebrated in the media and Ds community. ABC did a piece on them called When Loves Conquers All. It included discussion on (not) having children.
The question of children was settled when Carrie decided to undergo a surgical procedure to prevent conception, since the likelihood of having a child with Down syndrome would be high. For Carrie and Sujeet to care for a child on their own was considered impossible."Children are a big responsibility," Carrie said. "And we just have to be responsible for ourselves, really."
From that piece, it appears that Carrie made the decision for herself on a permanent form of birth control. I wondered about Kayla. When we would even broach that subject with her. Then I put it out of my mind. For awhile anyway.
When Joe was deployed he worked with someone who has a teenage niece who has Ds. The birth control topic came up and if we had talked about 'what if' with Kayla. (Umm no not really because I just want to hide under a rock.) I thought about it again, and eventually put it out of my mind again.
Then came Thursday night's episode of Private Practice. If you didn't see the episode here is a quick recap. A single mom comes in with her teenage daughter who has Ds. She suspects her daughter is pregnant. The mom had power of attorney over her.
Initially, they didn't tell the daughter that the u/s revealed she was 11 weeks pregnant, nor did they tell her what procedure they were performing when doing the CVS. Then the mom told them 'they made a baby.' The couple became excited and started planning on raising the baby. The single mother knew if her daughter had a child that she would be the one who would end up raising the baby and she didn't think she could go through that all over again. (Adoption was never mentioned as a valid option).
In the end, the results of the CVS showed the baby to have no chromosomal abnormalities, but no matter, the mother had taken her daughter to have an abortion that morning; again without telling her daughter what procedure was being done on her.
So this episode once again brings to the forefront of my thoughts: Kayla and birth control.
What do we do when she is a teenager? She could very easily be taken advantage of. Do we put her on birth control 'just in case?' Then I ask myself: what if Kayla didn't have Ds? Would I be so quick to worry about her being taken advantage of? Would I be so quick to make sure she was on birth control "just in case?" In the Private Practice episode, the daughter wasn't taken advantage of. And Kayla could be taken advantage of whether she has Ds or not. It's a lot to think about.
Moving beyond the teenage years...knowing that it wouldn't be a good idea for Kayla to have a child...now we might be talking about a more permanent form of birth control. I don't believe in the forced sterilizations that were done on individuals years ago. But it is definitely a topic Joe and I, and Kayla, will have to talk about as she gets older. And, like Carrie Bergeron, we hope to provide Kayla with enough support and information to make an informed decision on her own. However, it still hurts my heart to think of her not being a mom though.
Those of you who have older children, who have gone through this, or are going through this: if you don't mind would you share how you approached this topic with your child?
13 comments:
I was shocked at the episode...but I could "see" where the mother was coming from. I don't say sympathize because I don't have a child with DS. But I will tell you - I do worry about my girls and the teenage years and all that - but it makes me sad for you to think of Kayla not being a mom. I just can't imagine....I pray you and Joe and Kayla make the best decision for Kayla when the time is appropriate.
I didn't see the episode, from what I understand everyone was pissed that adoption wasn't considered and that the mom didn't tell her daughter what was happening...
Even though Brooke is just 1, the hubs and I have talked about this and we still have no conclusion...
like you I hope to provide with Brooke with all the info and hopes she maked a good decision...
but I can never see myself forcing an abortion on her...shudder
Wish I could help. Kayli is just reaching puberty and it is so unexpectedly bittersweet. I suppose many parents feel this way but for us it is about the possibility that our children will not be able to make the decisions without help. I worry as much about the idea of guardianship as I do puberty.How does one truly know what the best decision is before it's made- really never for sure about almost everything!
No advice, I have no experience, it wouldn't be right to offer advice, but lots of compassion. It's not easy, is it, this parenting thing.
I cannot attempt to give you advise, only support what you decide. This ranks next to the question of Life. I did not see Private Practice, but like the Mom you described, you and Joe will have to deal with, live with however you want to put it...the final outcome. There will be no winner only the Best of life you can deal with. Reality..boy you wish you could change it. Many times I wish I could have. Blessings and understanding, GPaD
Oh, this is the thing that I cried about the most after Goldie was born and I felt so selfish for it. Then, when she was two, a mom of a little boy with DS told me "You know they say most girls with DS end up pregnant." I was in shock. Who says that to the mother of a two year old? I'm not ready to come out from under my rock.
Life, children, parenting...always a rocky road with ups and downs,frustrations and always decisions to make and also happy moments and love and etc. Your thoughts made me cry too..what you are doing right now is talking about this subject and asking for others their opinion (parents who have special needs children)and any parents thoughts..You are taking an active role (even tho, as you say, you hid under a rock) we are human, and we all hide under a rock numerous times thru out our lives, but, than we come out and face the important issues...I love you Michelle(and Joe) and I know you and Joe will come up with a decision or objective when the time is right...and Kayla too...And yes, it is sad that Kayla may not experience the joys of motherhood... Love Mom
Michelle, you are such a beautiful mom and your love for Kayla comes through with every word.
I don't have any advice for your situation, but after years of reading your blog and seeing the love your family has for one another, I think you can rest assured that when the time comes to talk and make decisions, you will all be at a point where it will be easier to know what is the right thing to do.
Kayla is 7, but only 7, and so much can and will change as she grows and matures. The Kayla you know now and the Kayla with whom you will talk through these things have years of maturity stretching between them.
I have no doubt that you, Joe and Kayla will work this all out. I can only imagine the sadness you must feel in regard to Kayla not having children. But even so, she is sure to have a fulfilling and meaningful life - God has a plan for her.
My brother-in-law with Downs is 51 years old. Interestingly, this has never been an issue in his life. He has never "matured" to an age where sexuality has been an issue. He maintains a job but has always lived at home with his parents. I don't think he is capable of living on his own. I blame that on the fact that in his childhood there was so much ignorance about education and training for people with Downs. I think he could have been capable of so much more. Regardless, he is happy and has many hobbies and activities he stays involved in. I think having a daughter gives you more to be concerned about regarding sexuality, being taken advantage of etc.
I didn't see that episode, and I am glad I didn't. I think it would have frustrated me too much.
I am under the rock right next to yours! My daughter will be 9 in just two weeks and I think about this every now and then, but always go back under my rock. I know this won't be an easy answer but I hope that when the time is right we will be in a better place to figure out the answers.
Hi, just found your blog! Love that you posted about this topic. Although my daughter is not even 3 years old yet, when I saw this episode I really began thinking about her future and this issue...so difficult with no right or wrong answer...thanks for posting about this!
We're alike - always contemplating the future. I have no advice. My path might be slightly different in this regard since we have a boy. From reading your posts, I can clearly see that you and Joe are wonderful parents. I think that, in time as circumstances change and the kids mature, you will find the best path to approach this.
Unfortunately Carrie Bergeron and Sujeet Desai are no longer together. I recently read an article on Carrie from this past October citing her as the former wife if Mr. Desai. Upon further investigation Sujeet's website has removed all traces of Carrie. Very unfortunate. :(
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