Eco Fabulous Family

New prenatal tests are giving more and more families a prenatal diagnosis of Down syndrome. Some parents are happy to have the extra time to prepare for everything an extra chromosome means.  For other parents the diagnosis will result in termination of the pregnancy.  I have heard many officials state they don’t believe the abortion rate will go up as a result of these tests.  I say bull.  I am certain more mothers will choose to abort.

To me this is not an abortion issue on the broader scale. It is an issue of aborting children solely on the basis of a Down syndrome diagnosis. I don’t usually share these types of feeling because friends and family may not understand or have experience with how important this issue is. Many of you reading this did have that prenatal testing with the idea of aborting your baby if he or she was not perfect. I am sure some of you did abort a baby with a Ds diagnosis. This is not to shame you. The more we know the better we do.

Below is a segment from 60 Minutes in New Zealand. A father in the video puts it beautiful when he says “I want my daughter to live in a society that values her life.” He hit the nail on the head. When people abort only because of this diagnosis they are saying that people with Down syndrome are less than other people. I will not accept that. Froggie is one of the most beautiful people I have ever met. He has so much to offer this world. There IS a place in this world for him and others like him. He has the same value as any other child.

I have never publicly stated my views on abortion because it just divides and causes arguments. I will say I am completely against people aborting simply because of a Ds diagnosis.  Unless there is another condition that is not compatible with life people should not be able to abort babies they perceive as less than perfect (cause Froggie is perfect). To me this is the same as aborting a baby because the baby will have green eyes instead of blue or brown hair instead of red. We don’t get to choose who are children are.  We do get the honor of nurturing them, guiding them, loving them and raising adults we can be proud of.

Froggie being worn on my back on Christmas Eve!

If someone has a diagnosis of Down syndrome there is support.  This website has lots of information: http://downsyndromepregnancy.org/

If you are the current parent of a child or adult with Ds in California check out CAPODs: https://www.facebook.com/groups/CAPODS/

If you choose not to keep your child Reece’s Rainbow is an organization dedicated to placing children with Ds.  There are so many families waiting for child with Ds!  http://reecesrainbow.org/

Having a child with Ds is not what I planned. I had so many incorrect assumptions about what a person with Ds was capable of and what they were like.  I am so blessed to be a part of this community.  When I was pregnant someone said to me: “Welcome to the best community you never knew you wanted to be a part of” and I find myself saying those same words when I speak with new families.  It is so true!

Part 1 is HERE and Part 2 is HERE

Part 3

So now I got this! After Peanut I was feeling like a breastfeeding pro.  Breastfeeding is a very important part of my mothering identity.  This is how I fix my babies bumps and bruises, this is how I put my babies to sleep. I felt confident so confident when I was pregnant with baby 3 I barely gave it a thought outside of my excitement at getting to nurse again.

Then, we got Froggie’s diagnosis.  At 4 1/2 months pregnant we found out Froggie would have Down syndrome (Ds). You can read his diagnosis story HERE.  While researching what this meant to our family I discovered that babies with Ds can’t nurse. Well, that was what it seemed like from everything I was reading.  Once we knew he would be healthy this idea, that I would not be nursing, overwhelmed me.  How would I parent this child?

Luckily I kept reading!  I learned that many babies with Ds can’t nurse because of low tone in their mouths and for other health related reasons.  More importantly I learned that some babies with Ds DO nurse! So I went to work learning everything I could about nursing a baby with Ds. I came across a specific hold called “Dancer Hold”. This hold can help a baby latch who has low tone.  I printed out a pdf about this hold and packed it for the hospital.  You can see it HERE. I also called and spoke with the lactation consultant on staff at the hospital and spoke several times with a lactation consultant in private practice.  I spoke with LLL leaders and friends.  I was so scared he would not nurse.

When Froggie was born and we were wheeled into recovery after my C-section I immediately tried to latch him.  He LATCHED! I was so incredibly overjoyed.  I knew his latch was not great and we were going to have to work at it but he did latch.

Over the next 24 hours several nurses asked me if I was ready for a pump and bottles for the baby. I ended up getting very frustrated with them and sent my husband to tell them to leave me alone.  We would be nursing. The lactation consultant came in and I asked her if she was familiar with the Dancer Hold. She said she was not so I gave her the pdf and asked her to learn about it and come back. To her credit, she did! I was a bit pushy about anything having to do with nursing. Well, I was a bit pushy with anything having to do with Froggie.

It took us about 24 hours for him to get it and start nursing well.  About 26 hours after birth he started pooping and peeing like he was supposed to.  Every medical person that came into my room seemed so surprised he was nursing.

My 2nd night a more experienced nurse was on duty and she came into my room about 3:00 am.  I was up nursing.  She commented how well we seemed to be doing.  She was a bit older than the other nurses and I told her my experience with the nurses. I told her how surprised I was that they kept pushing bottles.  She told me that the problem was that they “knew babies with Ds don’t nurse”.

Many babies with Ds do nurse! It is a bit harder and takes a bit of work. It is also true that many babies with Ds simply can not nurse because of different medical conditions they are born with. We are lucky.

Today at 19 months old we are still going strong.  Since I believe in child led weaning he will probably nurse for quite awhile, and I am fine with that!

When I got my pre-natal diagnosis I was very lucky. Peanut goes to a very special school and I was quickly able to connect with moms who have a child with Down syndrome.

These moms let me know it would be ok. They let me know what to expect. They told me and showed me how wonderful, strong, amazing and smart their kids are.  I had a community, a place to belong and feel safe. I was very lucky.

I can’t imagine going through those days after the diagnosis alone. But this happens all the time to expecting moms. That is one of the reasons for the high abortion rate for babies with Down syndrome. I have seen figures between 85% and 95% abortion rate. It is high, too high. What if those moms and dads had a buddy to help them through this? Someone who has been there, who is there now!  Who can tell them the facts?  Some doctors tell their patients lots of horrible scary things about Down syndrome and none of the wonderful things.

I hope I am lucky enough to connect with pregnant moms in this position. I want to tell them it will be ok. I want them to know that while this is not the path they planned on taking it will be a beautiful, wonderful path. Yes, there will be tears. Yes, your child is not what you were expecting but she will be more than you ever expected.

Froggie is such an amazing wonderful gift.  This Thanksgiving this is what I was thinking about the most.

When we found out Froggie was going to have Down syndrome I didn’t think twice about telling people about it.  I was shocked and continued to be shocked by the rude, crazy, heartless and just plain ignorant comments I get from people.  It amazes me the things I hear.

With the help of CAPODS (a Facebook group for Parents of kids with Ds in California) I compiled a list of things parents have heard when people found out their child has Ds.  I sent this list to my friend Karen Morano and asked her to help us come up with smart ass responses to some of these comments!

Thank you Karen Morano!

“Don’t they die when they are about ten?”

“Yes. My twenty-five year old is just being stubborn.”

“I think you’re thinking of dogs, perhaps.”

“Most live long enough to get the Denny’s senior citizen discount.”

“Yes, that is when all their extra chromosomes EXPLODE. I do hope you’re not sitting next to my daughter when it happens.”

“No, we’re electing to keep ours alive until adulthood when we can sell all her fully-developed organs on the black market for drug money.”

“Yes. They are also reincarnated into their own bodies quite often”
“Well if you have to have a disability, this is the one you want”

“Doc, I’m a collector. I want them all. Is Down Syndrome part of a starter kit?”

“Down Syndrome? No, I’d rather my child have Up Syndrome. Down Syndrome just sounds negative.”

“If I have to have a disability, this is the one I want—wait, did my kid get diagnosed with a disability or did I?”

“Does it come with a free set of kitchen knives?”

“So Down Syndrome kids are more likely to have heart defects, gastrointestinal problems and all these other things that go wrong but this is the one I want my child to have?”

“I respectfully disagree. Models with Crie de Chat Syndrome have a higher resell value.”

“You know, you can train her to keep her tongue in her mouth.”

“That’s great. Can we train YOU to keep your mouth shut?”

“It’s an automatic cooling device, it saves us on our air conditioning bills.”

“Really, that’s the biggest thing we need to be concerned about? Her keeping her tongue in her mouth?”

“Could you maybe focus on keeping YOUR daughter’s tongue in her mouth and let us worry about OUR daughter?”

“Why worry about it? It’s her Michael-Jordan-makes-a-slam-dunk face!”

“But whenever she closes her mouth her eyes bug out, then if we push her eyes back in her ears stick out”

“Wow, your baby looks so normal!”

“Wow, so does yours!”

“Wow, so does yours! Does he have Down Syndrome, too?”

“Wow, so do you, and we all know you’re batshit crazy!”

“My baby looks so normal. Is that supposed to be a compliment?”

“So did Clark Kent, and he was Superman!”

“Why, what’s he supposed to look like?”

“You have a normal-looking baby. Hmmmm. Well, you have very normal-looking children, too.”

“What, exactly, do you mean by that? Does he look abnormal somehow?”

“Well, where I come from, we tell mothers they have beautiful babies, not that they look so normal. Maybe I missed the latest update from Miss Manners or something. Is normal the new beautiful? If so, I hope you and your husband have a completely normal anniversary celebration.”

“If you’re trying to compliment my baby, you could just say he’s cute instead of offering a comparison to so-called “normal” babies.”

“Too bad, we were hoping for a real freak.”

“What, exactly, are you implying?”

“Um, thanks?”

“My baby looks so normal? Because looks are everything, right?”

My Diagnosis Story – Down syndrome

Someone recently asked me to tell our diagnosis story.  I thought this was interesting.  I had heard of birth stories but I had never heard of a diagnosis story.  Even when Bug was diagnosed with autism no one asked for the story.

My story started long before we were officially told.

When Chris and I started our journey to create a family we discussed what would happen if we found out we were pregnant with a child with Down syndrome (Ds).  Yes, we actually had that conversation 10 years before Froggie was born.  We had it several times.  We always said that if we were to find out we were going to have a child with Ds we would have the baby.  We would figure it out.  We would deal with it.  Little did we know we would be blessed with Patrick.

I got pregnant with Patrick on April 30th, 2012.  I really am that neurotic that I can tell you the date each of my children were conceived.  Yes, I am a bit crazy!

By mid-June I was having dreams of a little boy with Ds.  I know you all will think I am crazy, except for the people who I told.    By July I was convinced I was having a baby with Down syndrome. I called several friends and told them the baby had Ds, they thought I was being paranoid.  I emailed and called a few Moms I knew who had children with Ds and told them I was having a baby with Ds.  They thought I was a bit strange (and they were right) since I did not have any diagnostic tests done yet.  At the beginning of August we received blood work showing we had a 1 in 6 chance of having a baby with Ds.  I was scared, no terrified.  The doctor offered an amino to confirm.  After much discussion we decided to have the amino.  My doctor has done several aminos a day for years and the risk of miscarriage was low with him.  I am a Type A and needed to know so I could plan and prepare.  Besides, the state of California was going to pay for it!  Wow!

Um, I was a bit naïve.  I did not realize why they pay for it.  I even asked my doctor later on in my pregnancy and he said to follow the money. He was right.  What is cheaper for the state?

The amino was performed on Aug 15, 2012 and the results came in on Aug. 27, 2012.  It was about 10:00 am and I was home with Chris.  Bug and Peanut were at school.  The phone rang and it was my doctors nurse.  She asked where I was and I told her at home and she said “I’m sorry, the baby does have Down syndrome”.  I told her thank you and hung up.  I cried, hard.  Chris held me and we grieved. It was horrible. Since I had already been researching I knew there could be heart problems.  I called her back and asked if the baby’s heart was ok.  She said as far as she knew it was.  That afternoon I took Bug out of school early to give him the news.  I thought he would understand to some degree and wanted to tell him separate from Peanut.  Peanut was only 5 and I was sure would not understand.  Bug didn’t really get it.  Later that day I told Peanut.  He said, “that’s ok, my friend Maddy has Ds”.  Then he said, “it is hard to understand her, will I understand my brother?”.

Then things got really interesting.  Our next appointment we had to see the genetic counselor otherwise the state would not pay the bill for the amino.  I was still very naïve about the state’s motives.  She then presented my options.  I quickly told her we would not have an abortion or place the baby up for adoption.  She continued to talk about abortions and when the cut off date is to have one.  I again told her I did not want to hear it. Chris and I had discussed this and were comfortable with our decision.  After a couple minutes of this I told her F*&% off and walked out.  Chris followed me. I have a knack for putting him in uncomfortable situations.  Later in the pregnancy I complained to my doctor about the genetic counselor and he told me that she complained about me too.  She told him she “was unable to work with that patient”.

I was terrified.  I knew nothing about “Downs” (politically incorrect terminology in the US).  I was fortunate that Peanut goes to an inclusion school and I was quickly and lovingly welcomed into the best community I never knew I wanted to be a part of.  These Moms and Dads hugged me, welcomed me, gave me information, pointed me in the right direction and tried to calm my nerves.

I don’t know what I would have done without Nancy, Christine, Michelle, Jennifer and several others.  After the birth even more Moms were added to my circle.  Today, 6 months after Patrick’s birth I am blessed with a circle of Moms who get it.  Who will be there for me when I need them.  I need to learn to “use” them more.

Getting a prenatal diagnosis is so scary. I read everything I could.  I called people, emailed people and prayed.  For some reason it was very important to me to tell our family and friends.  I wanted everyone to know so there was no awkwardness after the baby was born.

One friend, with a little girl with Ds, told me to relax.  She said at the end of the day you are having a BABY.  This baby will be just like your other babies.  He will eat, sleep and poop and that I knew what to do with a baby.  That changed things for me.  That one simple sentence (or two?) gave me something to hang onto.  It really made a difference.

Froggie is the most amazing, sweet, cuddly and special child.  I truly am blessed to be his mother.  He breaks stereotypes everyday and makes me proud.  I honestly would be thrilled to have another with Down syndrome.  I am not just saying that.  This is an amazing journey and our lives are better for it.

Not the best picture but there are so few of me with him…this is all I could find!

While scrolling through Facebook last night I saw this story several times.

http://www.theprovince.com/news/photo+that+broke+mother+heart/8523150/story.html

with this picture:

 This is a school class picture. This is wrong.  Period. The boy on the end that is separated from his class is a 7 year old named Miles.

How could the photographer not see how wrong this is?

I asked Peanut (age 6) last night what was wrong with this picture.  He said their faces are all missing.  I told him he was right and asked what else was wrong with it.  He said “that boy (pointing to Miles) wants to be with his friends”.  Well there you have it folks.  Simple as pie, right? So why is this so hard for the rest of the world?

I think this picture is a really good indicator of what is wrong with American schools.  If your kids is typically abled and willing to fit into the school district’s pegs than your child will do fine.  However, if your child is differently abled or a square peg then that child is often excluded.

I firmly believe in inclusion.  I believed in inclusion before Froggie was born.  Peanut goes to a charter school that is 20% differently abled and 80% typical.  We are very fortunate that Froggie will go there in Kindergarten because of sibling preference. Bug goes to a regular neighborhood school where most the kids look and act typical.  You would never know there is special day class on campus, a room where they put children who have different abilities.  Bug attended this school since 1st grade.  I never even knew they were there until the end of 3rd grade.  Never saw them.  Bug didn’t know this class existed either.  So clearly these kids are not being included at all.

I learned of their existence on this campus when there was an award ceremony and a girl from this class received an award with some of the other 3rd graders.  She came in separate, sat separate, received her award separately and left the ceremony early.  It was clear to all the parents there that something was different about this girl.  The parents even discussed it among themselves wondering what class she was from and why she was treated differently.

We have a long way to go towards equality in this country.  Just recently a young man named Ethan was murdered.  The coroner declared it murder but there is no investigation.  Why? Many feel this is because Ethan had Down syndrome.  The implication is that Ethan’s life has less value than someone with typical abilities. How is this even remotely okay? If you want to know about Ethan you can look HERE.

Another Mom wrote a blog post suggesting that parents of kids with typical abilities request that the school put differently abled children in class with their typical children.  I think this is a great idea and challenge you to do this!  Check out this blog post about this idea: http://myimperfectextraordinarylife.com/2013/06/10/what-if/