About a year ago, I had someone ask me what she should do to support a family member who just had a baby born with Down syndrome. If you don't know by now, my son has Down syndrome. He just turned 10 years old on Tuesday. He is the light of my life, but I didn't always feel this way. It was a tough transition, especially at the beginning, and unless you have been there, you don't really know what it feels like. On top of that, everyone who has a child with DS feels differently too. It's an individual process, but I think it's so important for people to know they are not alone and that it's important to let themselves process their feelings without heaping guilt onto themselves. Easier said than done..............
Anyway, back to the topic. I did my best to sum up everything I could into this letter-both the emotional side, but also the practical side. Looking at it now, I feel like I did a nice job of capturing the main points and wanted to share this in case anyone out there has had a child with DS or knows someone who does.
Disclaimer: I am no expert on DS, but I am an expert on my son. I know there are others who have different opinions than those stated in the letter and that's fine.
Here's the letter:
I have to say I feel very special that you would come to me to ask for help about this. I will do my best to offer some advice on what I have learned so far in this journey. I am still learning and changing, but here goes!
First of all, let them know their feelings are normal. Any awful, wonderful, horrible, beautiful thing they may be thinking or feeling has been felt before. I have only shared with my very close friends and Tim some of the horrible things that went through my mind at the beginning, even though I felt love towards my child. It's all normal!! And, it will all get better! Time is the key.
Mia has been born into an amazing family. This will be her greatest asset, in my opinion. These are the people who will be with her every step of the way, cheering her on, pushing her, and loving her. You are a part of that and you will be helping them by letting them know you are so happy for this new life and that you love Mia.
She will be just like any other child, and as such, needs to be treated in the same way. She needs lots of love like any other child and needs discipline like any other child. We don't modify this in any way for Keegan. Mia will rise to the occasion and should be expected at all times to reach for the goal that is placed in front of her. Sometimes she will reach it and sometimes she won't, which again, is like any other child. I hope they truly take the time just to enjoy her because later they won't want to look back and think, "I wish we would have.........."
They had dreams for her before they were born and they should have those same dreams for her now-getting married, going to college, living on her own, etc. They may alter slightly (no, she won't be getting an MBA), but she will do so much! She will show them along the way exactly what she is capable of and nobody should set limits on her (and "they" will try-meaning society!!).
Early intervention is very important. In the next few weeks they should get in touch with their state's early intervention services and start the paperwork. However, that being said, I've learned that therapies should not rule your life. They aren't magic. Parents are always the best resource and they will help her more than anything! You don't want to lose your family amidst therapies coming in and out of your home.
They are the experts on her and always will be. Take any advice with a grain of salt and use your own knowledge to figure out what is best for Mia. I only say this b/c I am completely unconventional and progressive, even in the Down syndrome community. Each child has his/her own needs and accomplishments and should be deemed as individuals.
They need to surround themselves with great advocates and people who love Mia and ignore the nay-sayers. Life is too short to get bogged down in people who can't see how awesome she is and what she can offer the world.
In the next few years, they need to have a will and a trust fund started. Peace of mind in knowing she is taken care of if they were both gone is priceless.
Other resources: they should get in touch with their local Down syndrome group, go to www.ndss.org, and visit the Woodbine House Publishing website (truly the best publishers of books on people who are differently abled).
Be sure to only read updated information because things change so quickly. There is also a great coffee table book entitled, "Common Threads." It has gorgeous pictures and it shows some amazing examples of children and adults with DS. If they are ever around here, I'd be happy to chat over coffee and even bring Keegan, if that would be helpful for them. He's been on many home visits like this!
Lastly, this is what people with Down syndrome answered when they have been asked, "What would you like the world to know about your life?" They say, "We are happy. We enjoy life and want to be treated like anybody else."
I hope this is helpful for you and them. I know my grammar isn't great b/c I went from talking to you to talking to them back around to talking to you, etc., so it's a mess and I realize it! I wish them well and they will be in my prayers. I can't wait to hear Mia stories as she gets older!! And, be sure to let Sarah know that she wasn't selfish. Most children with DS (80%) are born to mothers under the age of 35 and she did what she thought was best. God had a hand in it!
That's my post for today!!
 |
| My handsome husband and son |
Anyway, back to the topic. I did my best to sum up everything I could into this letter-both the emotional side, but also the practical side. Looking at it now, I feel like I did a nice job of capturing the main points and wanted to share this in case anyone out there has had a child with DS or knows someone who does.
Disclaimer: I am no expert on DS, but I am an expert on my son. I know there are others who have different opinions than those stated in the letter and that's fine.
Here's the letter:
I have to say I feel very special that you would come to me to ask for help about this. I will do my best to offer some advice on what I have learned so far in this journey. I am still learning and changing, but here goes!
First of all, let them know their feelings are normal. Any awful, wonderful, horrible, beautiful thing they may be thinking or feeling has been felt before. I have only shared with my very close friends and Tim some of the horrible things that went through my mind at the beginning, even though I felt love towards my child. It's all normal!! And, it will all get better! Time is the key.
Mia has been born into an amazing family. This will be her greatest asset, in my opinion. These are the people who will be with her every step of the way, cheering her on, pushing her, and loving her. You are a part of that and you will be helping them by letting them know you are so happy for this new life and that you love Mia.
She will be just like any other child, and as such, needs to be treated in the same way. She needs lots of love like any other child and needs discipline like any other child. We don't modify this in any way for Keegan. Mia will rise to the occasion and should be expected at all times to reach for the goal that is placed in front of her. Sometimes she will reach it and sometimes she won't, which again, is like any other child. I hope they truly take the time just to enjoy her because later they won't want to look back and think, "I wish we would have.........."
They had dreams for her before they were born and they should have those same dreams for her now-getting married, going to college, living on her own, etc. They may alter slightly (no, she won't be getting an MBA), but she will do so much! She will show them along the way exactly what she is capable of and nobody should set limits on her (and "they" will try-meaning society!!).
Early intervention is very important. In the next few weeks they should get in touch with their state's early intervention services and start the paperwork. However, that being said, I've learned that therapies should not rule your life. They aren't magic. Parents are always the best resource and they will help her more than anything! You don't want to lose your family amidst therapies coming in and out of your home.
They are the experts on her and always will be. Take any advice with a grain of salt and use your own knowledge to figure out what is best for Mia. I only say this b/c I am completely unconventional and progressive, even in the Down syndrome community. Each child has his/her own needs and accomplishments and should be deemed as individuals.
They need to surround themselves with great advocates and people who love Mia and ignore the nay-sayers. Life is too short to get bogged down in people who can't see how awesome she is and what she can offer the world.
In the next few years, they need to have a will and a trust fund started. Peace of mind in knowing she is taken care of if they were both gone is priceless.
Other resources: they should get in touch with their local Down syndrome group, go to www.ndss.org, and visit the Woodbine House Publishing website (truly the best publishers of books on people who are differently abled).
Be sure to only read updated information because things change so quickly. There is also a great coffee table book entitled, "Common Threads." It has gorgeous pictures and it shows some amazing examples of children and adults with DS. If they are ever around here, I'd be happy to chat over coffee and even bring Keegan, if that would be helpful for them. He's been on many home visits like this!
Lastly, this is what people with Down syndrome answered when they have been asked, "What would you like the world to know about your life?" They say, "We are happy. We enjoy life and want to be treated like anybody else."
I hope this is helpful for you and them. I know my grammar isn't great b/c I went from talking to you to talking to them back around to talking to you, etc., so it's a mess and I realize it! I wish them well and they will be in my prayers. I can't wait to hear Mia stories as she gets older!! And, be sure to let Sarah know that she wasn't selfish. Most children with DS (80%) are born to mothers under the age of 35 and she did what she thought was best. God had a hand in it!
That's my post for today!!
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