Daddy's Alter Ego

This weekend, Doug got to launch a new project band. He's been the go-to guy for area bands when someone wants to put together a fun tribute band for a couple of random shows then retire. To date, he's played lead guitar in a KISS cover band, a Guns & Roses cover band, and a Jesus Lizard cover band. The shows are always a total blast to go to, grown men dressed in costumes and taking on persona's of famous rockers, playing to hundreds of music loving fans that know the words to every song.

The new project is called Pryo-Maniacs and they play hair metal hits of the 80's. Months of traveling to rehearse, countless hours of learning the songs and listening to them again and again, all came to a conclusion Friday evening in front of a jubilant crowd of 650. I didn't get to attend the show, due to my plans for the LLL conference, so I had to just enjoy the photos and thoughts shared by friends on Facebook. I hear videos were shot, so hopefully those will be shared soon, too.

I'm glad he got the chance to do something he loves and is passionate about. There's talk of a second show sometime in the future, so I will try my best to catch them then.

A Gentle Weaning: Sean's Story

In August of 2006, I wrote an article for an online baby blog in honor of World Breastfeeding Week about my experiences breastfeeding Sean. It was the first time I openly discussed many breastfeeding experiences I've shared with my children: struggles in the beginning, painful decisions about my hopes as a mother, tandem nursing, and extended nursing. I later adapted this article and submitted for the now well-known book, Gifts: Mother's Reflect on How Children with Down Syndrome Enrich their Lives. Our story was out there, and at the time it seemed like it was near the end of that relationship.



It wasn't the end at all, I continued to walk the fine balance between my desires to mother-led wean my babies and my belief in child-led weaning. We had good times and bad times nursing, but mostly we just took it day by day. When Aidan weaned, it was with a bit of a nudge, a suggestion implanted peacefully and then nurtured by him in his time. When he was ready, it was a gentle process over so smoothly that it felt right for both of us. Three years later, he has a hard time imagining that he nursed as long as he did. He really doesn't have distinct memories of it, it seems to have just faded away. He knows that he breastfed, he knows he breastfed along side his brother, and he sees it as the biological norm for feeding babies. What was once such a significant part of his life is now just a warm memory.



Sean has always been the most pleasant toddler to nurse. In fact, I'd dare say that once we overcame his early rough start, he was the nicest baby to nurse as well. He never played the typical distracted baby games: constantly switching sides, or latching on then popping off unexpectedly to see what was going on around him. No biting stage, no twiddling the other side in search of Tokyo radio stations. No loud shouting for milkies in public places or yanking at my shirt. Just gentle, peaceful, pleasant and respectful. The ideal nursing child.

Between that easy-going personality, his difficulty gaining weight, his lack of a balanced diet, and his susceptibility to illness.... well, it just was a no-brainer to let him nurse as long as he wanted to or needed to. I was happy when he night weaned, around 2 1/2-3 yrs old (with Doug's help, thank you, Doug, for taking over night wakings!) I was happy when he easily tapered off his requests to nurse as he aged. From age 2.5-3.5, he nursed about 3x a day. From age 3.5-4.5, it went down to 2x a day. From 4.5 years old until he weaned at age 5 years, 11 months, he only nursed once a day. He'd often skip days the last year, sometimes even a couple in a row, all on his own accord. He only asked to nurse briefly every morning right when he woke up. Our morning ritual included him climbing into bed with Ella and me for a snuggle and "nee nee", as Ella re-named it.



With his sixth birthday approaching and Kindergarten looming, I started thinking about weaning. After the boys made the transition to sleeping in their own room, I decided that we should see if Sean would be willing to let go of his morning milkies. We gently talked about it, wondering what he understood and if he could comprehend that it was going to end forever. He didn't seem to really understand, but we were usually able to distract him first thing in the morning so that we could phase it out of the routine. He had mornings when he'd wake up tired from a restless night and would be upset with the distractions. Most days it went well and we moved on with the day.



Before either of us knew it, a month had passed since he last nursed. Every now and then, he'd ask and I'd tell him, "Sean's such a big boy! He's all done with milkies, just like Aidan. Only Ella has milkies now." Then we'd have a hug or go get him a drink or something else. He is completely comfortable just snuggling with me in the morning or skips it all together to come downstairs for breakfast with Doug and Aidan. He's still a slow riser, prefers to be eased into the morning, but we have found new ways to make that transition.

I'm so proud of him for letting go of so many "baby" qualities this year: no diapers for a year, no co-sleeping for a few months, no more nursing, and lots of new progress on table foods. I can't wait to add "no more baby foods" to that list, but I think I see the pattern. When he's ready, it happens and he soars.

I love you, Sean, and will always treasure our milkie memories.

Breastfeeding your baby with Down syndrome

Today I am going to be busy preparing for a presentation I am giving with another person at tomorrow's Kansas La Leche League conference on the subject of breastfeeding a baby with special needs. I am so delighted to have this opportunity to give information to people in the lactation field about something I am so passionate about. Since I can't give my presentation to everyone that might need it, I thought I'd put just a few of my favorite internet links about the subject here so others can find some help on their own. I hope you enjoy reading the links and feel inspired! Tomorrow's post will be a related personal story that has been in the drafts folder for a long time.

Have a wonderfuLLL weekend!

SPECIAL ADVANTAGES OF NURSING YOUR BABY WITH DOWN SYNDROME

Helping Babies who have Down Syndrome Learn to Breast Feed

Ask Dr. Sears: Babies with Down Syndrome

Dr. Sears FAQ on Down Syndrome

KellyMom Resources about Down Syndrome

Breast Feeding a Baby with Down Syndrome: Finnian's Journey

More Alike than Different!

Wordless Wednesdays: Zonked Out!

Prenatal Testing & Research Funding for Down Syndrome

Warning! Stepping on my soapbox...

I've touched on both of these subjects in the past, here is what I said when we were asked about prenatal testing during my pregnancy with Eleanor and here is where I talked about how I felt about the March of Dimes' funding research. Of course, those subjects come up again and again.

This week, I read an article posted on my favorite mothering website/magazine about new prenatal testing soon to be available that is supposed to be definitive testing via blood sample, as opposed to the current blood screenings. Whenever I read of these advancements in early prenatal detection, the underlying purpose always seems to scream out at me: FIND OUT IF YOUR BABY IS DEFECTIVE EARLY ENOUGH TO GET RID OF IT BEFORE YOU GET TOO ATTACHED! They like to sugar-coat it and say, "we want mothers to have time to "prepare" for the birth of their special needs child." B period S period

If they want mothers to prepare, than they should give them immediate resources that are balanced, up-to-date and accurate. You know, like the information required thanks to the Kennedy-Brownback law. Sadly, the medical field just absolutely does not do this. They immediately ASSume that prenatal testing= terminate if there are problems and then try again. So they offer up the termination choice first and if asked to offer other options, most just fumble around and claim not to know how to provide resources. It's not that hard! Google: down syndrome support and they can print off a dozen reliable sources immediately to take to the appointment when they deliver the news to expecting parents. Time and time again, support groups have contacted medical care providers and offered them brochures, books, phone numbers, etc for free to pass on to new parents. Yet time and time again, parents that eventually find the support say, "My doctor didn't tell me there were support groups. My doctor didn't tell me anything about life with Down syndrome. My doctor recommended termination. My doctor scheduled the abortion for me before he delivered the news."

And, thus, roughly 90% of prenatally diagnosed pregnancies with Down syndrome in in termination.

The majority of current research marked "for Down syndrome" is directed at early detection. Ways to "catch it" as soon as possible so the parents can end the pregnancy. See, if that termination rate gets high enough, then Down syndrome will be "cured". The reality is, there is not and never will be a cure for Down syndrome. Science can't genetically alter fetuses after conception.

Instead, we need to make sure that the research money raised or nationally budgeted by the government for Down syndrome is instead used to focus on improving the well-being of life WITH Down syndrome. Look at ways to improve heart defects, Alzheimer's, pulmonary disease, cancers. These are all condition that affect the life of people with Down syndrome as well as others. Put the money into early education, provide therapy for more instead of trimming the budgets to once a month. Send teachers to inclusion seminars. Help parents find and fund the resources they need to adapt their homes for their children.

Stop focusing on erasing Down syndrome from society. As I read on Facebook several times this week:

Oh my gosh... There is a cure for Down syndrome, its called ACCEPTANCE! Who knew...

We love Playgroup!

It's hard to imagine that our little playgroup is still going strong after three years! Some of the original kids have grown up and gone on to school, so they only attend in the summer. Several of us have had new babies, so there are new young ones to grow up in the group. I can honestly say that I look forward to going every time we meet, I get so much out of our time together that the hour and a half just speeds by.

Our last playdate was at the local zoo. The number of families that attend varies each time, but it's always a good mix and Ella is so excited to see her little friends.

All the kiddos together.

Little farm girl!

This female turkey gave them a talkin' to when they walked near her man. :)