Saturday, January 17, 2009

Meet Our Miriam

I've been meaning to post here about Miriam since she gets so little discussion. She's such a sweet, easy child that I really don't have any angst over her disabilities which I need to hammer out (now you know the true mission of this blog for me!). I decided to use the questions Meg answered by Adam as a vehicle for my readership to get to know my eldest child. So here goes:

What is Miriam's specific diagnosis?

Miriam has Trisomy 21 - commonly referred to as Down Syndrome. She was diagnosed at birth.

Tell us about Miriam. How old is she? What's her personality like? What does she love/hate?

Miriam is 13 years old and sweet as can be. We adopted her from Hong Kong (when it was a British holding) when she was almost 5 years old and I was very pregnant with Betsy. The family joke about her origins is that she is our Chinese British National with a Polish last name - all of which means absolutely nothing to her. Miriam is nicknamed "Girly" and she is a girly girl. She loves to play with nails and hair and dolls. Her favorite toys are her little princesses and her crate full of horses. She loves to play soccer, hates basketball. She could sing all day long - especially songs to Jesus - and loves to pretend with playmobiles and her younger brothers. We always say Miriam is the best Christian among us. She is so sincere in her worship and devotion. She has always loved Mary and had a special connection in her heart. She may not understand a lot about theology but somehow I think she understands things about God I will never learn this side of Heaven.

What therapies, diets, special interventions, etc. have you used to help Miriam? Is there any one thing that has been the most helpful for her?

Miriam hasn't required a lot of special therapies. She has had speech off and on and we continue to work on her speech goals at home. She is very hard to understand and has trouble stringing together more than 4 or 5 word sentences. The whole family follows the Feingold Program which removes all artificials and certain preservatives from our diet. We also avoid corn syrup and high fructose corn syrup for Miriam. The diet helps her to focus a bit better. At times we have given her fish oil supplements which also helped her focus a bit I think.

What is the most wonderful thing about Miriam?

Miriam has been our easiest child to parent. She is sweet, compliant, eager to please and willing to try just about anything. When she first came from Hong Kong it was maybe close to a year before we even saw her cry (which, honestly, worried us a bit). Then one day she stood at the top of the steps and cried and screamed bloody murder. I was shocked - until I realized she wasn't really sad, she had suddenly discovered how to get her brothers in

Miriam is one of our "lifers" here - she's just not going to make it in the great wide world alone and so we have a long time to look forward to Miriam's companionship. I have really enjoyed building our relationship with that in mind and Miriam is developing a wonderful little sense of humor. I think "companion" is the word that describes Miriam best.

What is the most embarrassing moment you've had with Miriam?

Miriam has some embarrassing moments with the typical things - she doesn't know when her nose has boogers and she forgets to close her mouth when she chews, things like that. But I think her most embarrassing moment actually happened with a male friend of mine. She had gone on vacation with our friends Michelle and Dan and their children. On the last day they were trying to get cleaned up and Miriam misplaced her bra. In exasperation she went to Dan and announced, "I can't find my booby thing!" Unfortunately her speech is such that she had to repeat it several times before Dan could understand what she was saying and refer her to Michelle.

How does Miriam's Down Syndrome affect her sibs?

Miriam might be fortunate in that she has sibs with much more annoying disabilities than hers. Compared to her brother, her sibs find her extremely easy to get along with and very pleasant. The little ones don't really notice that there is anything different about her. They play with her and fight with her just like they do with each other. I really like that they are growing up sort of taking people's disabilities for granted. They have been exposed to lots of other people with lots of different disabilities and have learned that there are all types of people in the world, that some of them need more help in life than others and they can be the ones to offer that help from time to time. The older ones have observed that Miriam has a very positive outlook and I think they enjoy that about her. I hope that as life moves along they will also realize they have learned a lot from her.

How have you changed your parenting style to accommodate Miriam's emotional needs?

Well, Miriam hasn't really taxed my parenting skills nearly as much as some of the other children. I am more patient. It just takes her longer to do things and learn things. I spent five years teaching her phonics but when she got it she really took off. I think more than anything I have had to realize that not all kids are this easy. If she were our only one I might be tempted to think I was the best parent in the world (and she would definitely be quite spoiled)...

What is the hardest thing about parenting a child with Down Syndrome? What is the best thing?

I have yet to find a particularly hard thing about parenting Miriam. She does have some typical teen moments these days with the eye rolling and attitude but honestly on her it's just sort of funny. Probably the hardest thing for her is to admit that she needs help. She has trouble letting me know when her cycle has begun and then she gets embarrassed or scared and hides her dirty underwear and pajamas. I think we had a breakthrough the day we both started on the same day and she figured out that even Mom has this problem - since then she's gotten much better at letting me know.

We are fortunate that Miriam doesn't have any of the physical problems that can go along with Down Syndrome. She was born with a healthy heart and spine, her physical development seems normal. Many parents of children with Down Syndrome seem to struggle with the day to day physical problems the most - esp when these kids are infants to toddlers and having one surgery after another. We have never had to deal with that. She was walking and talking and doing all the things a kid should be doing by the time we adopted her.

Not only is Miriam an easy kid, her disability is easy. I can just say to people, "Miriam has Down Syndrome" and suddenly they know exactly what to expect from her. It's so much more complicated with, say, Philip who looks mostly "normal" but whose disability is so complex and can't be summed up in a couple of easily decoded words for people. So if you have to deal with a disability I would say Down Syndrome is a good one. It's so ironic to me that about 90% of babies diagnosed in utero with Down Syndrome are now aborted in this country. I just don't get what is so bad about Down Syndrome that you need to kill a baby who might or might not have it (the tests are often false positives and I don't get the whole killing babies thing no matter what the circumstances). Maybe if they would actually let these babies live they would eventually meet up with older children with Down Syndrome and get a clue.

The best thing has to be Miriam's personality. Occasionally she will balk if I ask her to do something but it doesn't take much to get her to see the bright side of everything. She forces me to stop and smell the roses. I can forget about her in all the busy-ness of the day because she is so content to be in her little corner of the world but the times when I really stop and look into her eyes and see how they smile really bring me to a joyful place. I sit next to her at the dinner table and that's become our time to really relate to one another. I am so blessed to be her mom.

How has parenting Miriam changed you?

Oh boy. Parenting changes everybody and when you have a kid or four who have disabilities that can really change a person. I think Miriam makes me a better person. She keeps me humble, she reminds me to stop and enjoy the simple things.


DebD said...

this was lovely and I SO enjoyed "meeting" Miriam. What a blessing she must be.

Patti said...

I agree - that was lovely to read; your love for Miriam comes through so clearly. I love to read these stories on your children - I leave feeling like I know them, just a little bit. Oh, and congrats on #11!!

Elizabeth said...

What a lovely, loving child !

Jim Spiers said...

Great post.