Eco Fabulous Family

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?”

When we received the prenatal diagnosis of Froggie having Down syndrome many things went through my mind.  One thought that kept coming back, over and over, was about what his future would look like.  Will he be ok when he is an adult?  Will he be able to support himself?  Who will look after him?

There is no way to answer these questions now but I can do everything I can to prepare him to grow up to be an independent, productive member of society.  That is the best I can do, right? Wrong.  I can make sure that the laws support us in this!

What happens to people with disabilities when they grow up? The system is stacked against them.  Many people with disabilities really depend on Medicare.  Health insurance is so necessary, especially for people who have more health problems than typical.  The way the system is now a person can not earn more than $674 a month or have more than $2000 in assets or they loose their benefits.  This may include SSI, food stamps, Medicare and other programs.

The ABLE act is a change to the tax code that allows parents of disabled children to save for their future the same way we can save for college for other children in 529 accounts.  It allows the disabled person the ability to save some money to live on and use to clean their teeth or buy clothes or even go to the movies with friends.

When Froggie grows up will he be force into poverty and inactivity? Will he sit home and feel useless even though he will have the skills to be a productive, tax paying member of society? How will he feel about himself if he is told he can not work and contribute like everyone else?

On August 15th I had the great pleasure of going to Senator Dianne Feinstein’s office with members from the Down syndrome community.  We met with her State Director, Trevor Daley, and told him our stories and why this bill is so important to us.  We are asking Senator Feinstein to co-sponsor the bill.

I took both Froggie and Peanut with me.  I think Froggie did an amazing job looking cute and Peanut was polite and quiet.  Hopefully he will remember doing this when he is older.  I had an opportunity to share my family’s personal story with Mr. Daley and it felt amazing to actually be doing something about this very important act.  We should hear back in a few weeks if Senator Feinstein will add her name to the growing list of sponsors.

For more information about the ABLE Act you can go HERE. Please contact your Senate and House representative and ask them to sponsor this very important, life changing bill!  Froggie is depending on you!

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!

Chris, Bug and Peanut went camping this weekend.  Froggie and I had the house to ourselves all weekend. So we had a wild party and junk food.  Well, only part of that is true.

I took this opportunity to try to get control over the massive amount of crap that has accumulated in the boys bedroom.  It was bad.  I mean bad.  Where did all that stuff come from?

Here are a couple before pictures:

Peanut’s Room – Before

Bug’s Room – Before

They really did have cardboard boxes in there because there was no where else to put all the junk.  After working all weekend. This is what it looks like now.

Peanut’s Room – After

Bug’s Room – After

There is still work to be done but we can walk in there now without risking a trip to the ER.

It is so important for them to have a place to go that is their own.  Especially when they need to calm themselves or take a break.  It is not easy to calm down, take a break or even just have fun in a room like that.

So I am publically promising to make sure they stay this way.  Anything not put away by bedtime is mine! I will remind them for the next few nights.  So the hard part is just beginning.  I need to remember to follow through!

There will be an important lesson here.  Sometime in the next week or two we will all take a trip to donate much of that clutter. All that junk which was not valued by them (clearly) will certainly mean something to someone else.

What changes did you make to get control of the stuff in your life?

When Bug was born we attended Gymboree classes.  It was fun.  I got to meet other new Moms and spend an hour playing with my baby.  It was the thing to do.  It was not brain science.

With Froggie I have found brain science, really, I have!  We have started attending this program called Outside the Box.  Outside the Box is like Mommy in me but Harvard style with a dash of steroids.  Everything they do has a purpose.  So if we are singing The Wheels on the Bus and using hand motions we are actually working on tracking.  If we are doing a song that involves lifting the baby up and down we are working on vestibular input.  I could probably list 30 different things we have worked on or should I say played on.  Everything we do in our class is focused on brain development, attachment and bonding.

On Outside the Box’s webpage they have a mission statement which says: Our goal is to teach YOU how to teach YOUR baby!  You are your baby’s first and most effective teacher!  You are the “Architect” of your baby’s brain!

I love this!  Froggie is my third baby and for obvious reasons I am very focused on his brain development.  I have known about many of these concepts from reading about them or talking about them but it is different actually doing it with him.

If you live near Woodland Hills or even a little bit of a drive away you should check it out!  They really are amazing.  I do feel more connected to Froggie and am having a great time.

Oh, and I have Raffi’s Baby Buluga song on a permanent track in my head.

That horrible school photo I wrote about has been re-taken.  I LOVE the new photo and applaud the photography company and school for making it right!

http://www.today.com/news/parents-re-taken-class-photo-world-it-should-be-6C10386819

Miles is sitting in the front row on the right being supported by his caregiver.

Wouldn’t it be great if all kids with all abilities could be this easily included?  Just do a redo!  Think of all the IEP meetings, mediation and court cases that could be avoided if the school districts just said “oops sorry about that, let’s try again”!

I will continue teaching my boys that all children and adults are valuable human beings regardless of their abilities or differences.  But the day is coming when I will have to discuss with them that not everyone feels the same way.  That will be a sad day.

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/

I am asked all the time what my favorite baby products are.  Babies needs breasts, a place to sleep, diapers and a few outfits.  If you have these you have all you need but there are other things that can make life much nicer and easier.

Now that Patrick is 5 months old (can you believe it?) I have a few I can’t live without.  I am sure there will be even more as time goes on and will post a new list in a few months.

Woven Wrap – I LOVE this thing.  I use it almost everyday.  I have a Didymos.  I thought I would hate all the wrapping but once I got used to it it was a breeze. This is particular perfect for Patrick. Since Patrick has Down syndrome he has joint laxity and low muscle tone.  I like how a wrap allows me to position him in the best way for him and I can make sure he is supported well.

Blankets – I am loving Aden + Anais Bamboo Blankets.  These come in 3 packs.  When I opened and washed the package both Bug and Peanut took one.  They liked how they felt too and figured 3 blankets for 3 boys.  They actually feel like butter. Now that it is getting hot out these are good for covering his head or his stroller to keep the sun out of his eyes.

Playmat – I can not say enough about the LilyPad Lawn by Nook.  Patrick needs lots of tummy time for his low muscle tone and Mommy needs to work.  When I am not wearing him I want him down on the ground.  Our house has hard floors and my office is tile.  Putting him on blankets frustrates him because when he moves the blanket moves under him.  Foam is no good because of the EVAs. There is some information about EVA’s and foam here. This is perfect!  It is soft, allows him to move and is safer.

Cloth Diapers – Need I say more? If you know me at all you know this is a no brainer for me.  My favorite is bumGenius Freetime. This is an All-In-One diaper so it is super easy to use.

Rash Cream – A couple times Patrick had a stealthy poop. Yes, I can admit it.  I did not change him as quick as I should have and he got a bit red.  I tested out several creams and love Thirsties Booty Love.  I actually didn’t carry it in my store when I tried it and quickly added it.  It cleared it up very quickly and I am comfortable with the ingredients.

Sophie the Giraffe – Yes, really!  I never owed this toy with Bug or Peanut.  But Froggie has just started being able to grasp items and he really seems to prefer this over other toys.  He even can make her squeak it his own.

Do you or did you have a baby item you can not live without? Leave a comment and let me know what it is.

Frogge in a bumGenius Freetime

There is so much thrown at our kids everyday about “bad guys” that are out there.

At home we have lots of rules to keep safe.  Don’t open the door without Mom or Dad. Don’t tell people where you live.  If you see a stranger (called don’t knows here) when you are out playing come and get me.  Walk on the inside of the sidewalk.

At school it is much of the same.  Don’t open the front doors during school hours, use the office.  They have drills where they practice lock-down scenarios.

Don’t even get me started on TV.  Even when we are watching something kid friendly you get the news commercials.  “Tonight on the 5 o’clock news, find out what the abducted Northridge girl is now saying”.

What about the checkout line at the store?  Nope, lots of headlines there.

We can’t fool ourselves.  Our kids are hearing about bad guys.  Maybe they should be hearing about them, to a degree.  How can we expect them to stay safe if we don’t give them the tools necessary to arm themselves?  I want my kids to know what to do if they ever meet “bad guy” and I want them to feel empowered and safe.

I doubt, and really hope, he will never run into a bad guy.  But he learned during this class that no one has the right to hurt him and that it is okay to defend himself.

My friend told me about this program called radKids.  There was a class starting at CSUN being put on by the CSUN police department. It was 5 days long and 2 hours each day.  Chris took Bug to the first 4 days and I was very impressed by everything I was hearing.  On Friday the whole family attended to watch the simulations that Bug would be put through to practice what he had been learning.  I was very impressed!  Here is a video of Bug doing the simulation.

They teach the kids to: Yell loud, hit hard, run fast.

Bug did amazing and I was so impressed.  Now I have to make sure he doesn’t use his new “moves” on Peanut!

I worry about teaching my kids the right things.  I also worry about what those things are and which definition of right I will use.

Sex education for me at this age is about relationships.  I want my boys to understand intimate relationships.  Treating their partner with love and respect.  I want them to know our values.  Our church has an 8 week sex education program for 4th-6th graders.  At first I thought Bug was too young.  He is 9 for crying out loud!  NINE!  After some thought I realized that now is the time.  He will still listen to me and hear my values.  Will I have this type of attention at 14?  They call it “Our Whole Lives” or “OWL” and it is a holistic approach.  It is not just the physical act of sex that is discussed.  Bug was mad at first that I made him go but now he is having fun in the class.

On a lighter note: Peanut announced at the dinner table the other night that he was having sex with J.  J lives in another state and we don’t get to see her often.  After I stopped laughing and gulping for air I asked him if he knew what sex was.  He said “No, but I know it is something you do with someone you love and I love J and will marry her”.

I am so relieved that he is learning our values!  That was a moment I will never forget.

Oh and J, sorry to tell you this.  He is now planning to marry McKenzie.  He had fun with her on Friday and decided that you probably don’t want to marry him anymore.