Curcumin

I can't seem to stop reading and researching, hoping to do what I can to help Liam be the best Liam he can be.  There is a lot of talk in the DS community about different methods/treatments/etc that can enhance our kids cognitive abilities and "tame" the effects of that extra chromosome.  Would you do it?  Would you take away the DS if you could?  Is DS a part of your child that makes them uniquely themselves?  Do you both accept your child and who they are but at the same time want to enhance their quality of life and ability to be independent?
A lot to think about.
I want Liam to be happy.  And healthy.  That's what I want for him.  But I also want him to be as in dependent as possible, able to make his own decisions, communicate with the world around him.

Anyway, all this is simply leading to me wanting to share what I am reading about natural and holistic ways to enhance  his health and cognition.  Here are a couple articles talking about the benefits of curcumin:
"Age-related cerebrovascular dysfunction is occurring on an epidemic scale in Western countries and include, “stroke, cerebral amyloid angiopathy, cognitive decline and neurodegenerative diseases.”  Presently, very few if any conventional medical interventions are capable of providing effective solutions, and none have been found to reverse underlying pathologies in conditions whose trajectories are generally characterized as ‘incurable.’ All the more reason why the new study holds so much promise in providing an evidence-based natural solution that is safe, effective, affordable and easily accessible as a familiar food ingredient."

http://healthimpactnews.com/2014/how-turmeric-can-save-the-aging-brain-from-dementia-and-premature-death/
http://healthimpactnews.com/2014/the-spice-that-prevents-fluoride-from-destroying-your-brain/

It's a beautiful day in the neighborhood

Loves of my life

Could they be any cuter? 

Me and my girl

Me and my boy

The dentist

We really like the dentist we have for the kids.   He has a great personality and the kids like him and he seems to do a good job. I was especially pleased when he made a special exception so I could keep both kids at the same practice.  Something about insurance was going to make me have to use a different dentist for each kid.   But he made it work for us.  

This week we went in for both kids check ups and saw the other dentist.   He's an older man with a big personality.   Friendly and personable.   But when he checks Liam the first thing he says to me is "congratulations!"   And I'm thinking, wow, well thank you I guess.   For my kids having great teeth?  And then he says "I am so happy you stopped breastfeeding!"  So my guard went up a bit.   He's pretty old school and I didn't want to voice all my opinions then and there,   All dentists tend to tell you that nursing leads to tooth decay.   You know, especially if you nurse them to sleep.  But it didn't seem like a time to say anything so I just smiled and pointed at Lupe and said "two years" and "Liam two and a half years and I'm pretty happy with those times".  Whatever.   I'll keep doing what I'm doing cause I think I'm making good choices for my kids. 

He suggests dental probiotics for Liam because of the benefits it could give him what with the pesky extra chromosome making some changes in his body.  Different I guess than the other probiotics I give him daily. Ok.  He cuddles him and says "I love you!"   Ok.   I guess.  Liam's ok with it and he lets people know when he doesn't even want a high five from them.   He then somehow gets to saying Liam will be his patient for life.   I'll be seeing this guy at age 44 if i haven't retired yet! (Which isn't likely, he's old) and this made me feel weird.   Maybe that could be ok. maybe Liam will like him a lot.   But a grown man in a pediatric dentist practice?   I'm pretty sure Liam's going to be fairly high functioning and will be cognizant of the strangeness of going to a kid place.   I think.   Maybe not.   I won't know that for a while.   But I just felt that he had a pre conceived idea of the potential abilities of a person with Down syndrome.  And that he wouldn't be able to handle or act appropriately in a typical adult dental practice. 

 Am I reading into it? Am i being defensive?  I don't know.  But my gut told me that something felt strange about his treatment.  Not bad,  just not quite right.  I can't decide if his "having had many downs patients" is a pro or con.  

Good news bad news

The good news: Liam is ready for kindergarten!   Haha.   He hugs the teacher every time we go to pick up Lupe, I love watching it.  He wants to do EVERYTHING she does.   Yep.   The baby doll he got from Santa?  No, only lupe's baby doll will do.   She says no, he says no.   She dances, he dances.   She takes off a shirt, he tries to put it on.  They are pretty cute together.  Except when he hits her.  

Liam spent the better part of Sunday in a pink tutu.   He can now say mermaid.  

Bad news: the audiologist says his hearing hasn't developed as much as it should in the last year.   In a way this is good news though, cause maybe there's something we can do to help.   And I like her, she knows that  "borderline normal" hearing is not ok for Liam.   He needs excellent hearing in order to develop speech.   So we'll see what happens next, stay tuned.  

Mi chimuela

Oh the milestones at five years old!   Lupe just learned to ride her bike and one week later she fell off it at the park and the handlebar knocked her wiggly front tooth out.  On Facebook my brother commented on the picture she drew for the fairy, how he liked the blood spurting out (there was a fare share of it).  But no, those were tears she said.  Just happened to be using a red marker.

And the first tooth lost not in my presence!  A magical job kindergarten teachers have, catching those five year old teeth!  I heard about it from five kids before I even saw Lupe in the classroom!

Turn and face the change, ch-ch-changes

I have moved a lot in my life but never before have I moved a family of four.  To say it was challenging is an understatement.  I packed up the house, almost five years in a house I thought we'd be in forever.   Pedro was in charge of getting it out and to the new place.  Both parts had their challenges.  But pretty fair I think.   Had two garage sales and still feel we have too much stuff.

But I need to back up and tell you the whole story.  For over three years we have lived next door to my mom and step dad. Two cute downtown bungalows with a shared driveway.  Grandparents next door (and other grandparents six blocks away).  Pedro walked to work.   We walked everywhere.  I hated driving to activities.  I based a lot of weekend plans on whether or not we could walk to them.  We walked to the library, out to eat, to the children's museum.   And we had several friends who's houses we could walk to.  

But back in November my moms house went on the market. And a week later our landlord told us he might sell as well.   We thought of every way we could try and buy the house but it just wasn't feasible.  So.......an end to the family compound.   And with that idea, a great and intense sadness.  I was grieving terribly and trying to tell myself to appreciate what we had had, to think of others who's situations were harder.   But I was still sad.  

And we were priced out of the town I grew up in.   Rich college students and retired people, and the friggin "happiest town in America".  I was feeling a little bitter.  

Lupe checking our mail at the post office for the first time.  Just bills.  See, for now we are considering our rental a sublet.   We need a San Luis address because we want our kids to stay in the bilingual dual immersion school Lupe is in.   Our community is there.  Most of our friends.  We are "famous in first grade" because of the teacher who promotes the Spanish story hour we have been doing for five years at our local library.  The one we used to be able to walk to.  

We have moved to Atascadero.   For those who are not from here it is 15 minutes north on the 101.  Same county (unfortunately different school district).  It is more affordable here.  We had looked at a house a few months ago because it has a studio out back and it was close to downtown.  The studio was too small for my parents (the idea is to look for a place for all of us, plus P and I don't qualify to buy anything on our own). Turns out, said house appeared as a rental.   Three month lease with month to month after that if the house hasn't sold.   We have to keep it tidy and be willing to have it be shown.  It has been on the market a few months.   

Positives:  it is walking distance to the surprisingly cute little downtown.   Across the street pretty much from Colony Park and community center.  A somewhat quiet and flat street (this town has a lot of hills and a lot of houses on steep slopes).   White picket fence and grass out front and two big trees starting to bud.  Big lot with zoning in place for building two more units.  Back yard has a pebbled area that is like a built in sand box, or rather, pebble box.  This has already proved to provide hours of fun.  

Negatives:  the two bedroom house, which was later listed as a one bedroom with bonus room, is rather small, almost feels like a trailer/mobile home, long and narrow.  Bathroom is off the bedroom, not in a neutral spot.  The commute to SLO is proving to be quite expensive with gas.  And that issue of school districts.  No garage, so very little storage space.  

First morning in our new dining room.  It is full of light.  

Malibu coffee shop.   Lupe practiced counting her change and asking the prices of the muffins.  The owner Paul was very impressed and we started to talk about manners before I got a chance to order my coffee.   Good stuff.   How is it we are in this culture where so many young people have lost any idea of what manners are?  But now Lupe talks every day about going to Paul's.  

It's also a drive thru.  Like the kind you see in Oregon.  

In the park in the center of town.  It's very pretty.  Though I don't exactly know why it's called Sunken Gardens.   Grass and fountains.  No gardens.  A mom arrived with her four year old on a tricycle.  I started talking to her.  "I just moved here" she said.   Last month, from Florida.  Said the moms in the mom club seemed young.  Said she drove to slo a lot.  

We exchanged numbers.   Mommy, I made a friend on my first day in my new town!

The tiny play structure at colony park.  A block from our house.  There is a community center there and I'm excited to start up yoga again, in an affordable way thank goodness.  

It's growing on me.   Pedro and Lupe love it here already. I am liking it a lot.  When I am in slo though I feel a bit sad, surprised actually that I don't live there.  

But in this house I can always find a parking spot.  The yard is big.   We eat breakfast and watch the squirrels in the tree, and with the recent rain, we are actually watching new leaves bud.  

Window display.  This town has character.   And I don't just mean the regulars at my great uncle's dive bar on El Camino real.  

There you go.  The changes that have been going on for the Arias McGrath family in the last few months.  Learning to let go.  Learning to accept change.  

 Phew!

Sentence?

10/2/13 Liam just said "mama bu". Which is "mama book". 

Update. 1/12/14

He says "mama papa".  And last week started saying "nanana" for banana.  Three syllables! 

Weaning and mourning

Just realized I have a lot of "draft" posts.   Should I just start posting them?

12/17. I want to say a big f you to my husband who is encouraging this all of a sudden cold turkey weaning.   I'm afraid he might be right.   But I also feel mad.   I didn't want It to be this way.   Cld turkey.   4-5 times a day to 0.  But it's started now and I don't know if ican turn back.   And is it only because I don't want to fight?  He is thinking of me and the stress of Liam's diet changes and the weight I've lost and thinks I should just wean and eat.   

Men will never never understand the grieving that accompanies weaning.   I want him to understand but he never will.    I'm so mad.   I'm so sad.

I am maybe learning to let go.   Let go of control.   Stop having the weight of the world on me and think it's only me.    Part of me is accepting this because part of me just wants someone to tell me what to do.   I'm frozen in Indecision.  

Oh god.   And it's starting to hurt a bit physically.  Or is it emotional.   Both of course   

12/19. So yesterday I nursed. I needed closure.  Told Liam it was the last time. Took a picture.   Did it while we were at home alone..  He's doing better than I am actually.  I am having a rough go.   I feel so sad. I have my period and this hasn't made it the easiest moment for me.   It's Thursday night.   My husband is at work.  I may nurse again.  It's almost bedtime.   It's my decision and it can't be rushed or forced.   

There is no right or wrong way to do things.  Breathe Sara breathe.  

7:22 pm. Just put them to bed.  Liam didn't even try to nurse.   Didn't ask for it.  And I was ready to give it to him if he had asked,  and now I am sobbing.    I'd like to know why, where the root of the grief comes from.   Is it because this has happened too suddenly?  Is it because he is my last baby and I know I will never breast feed again?  Is it my emotions and hormones cause I am menstruating  right now?  

12/22. Tomorrow it will be a week since this started, with the exception of the Wednesday nursing.   I'm still so sad.   He's pulled at my shirt a couple of times.  And I freeze in indecision.  I still have some milk.   I am eating dairy and gluten but it it's not celebratory yet.  I didn't love the gourmet pizza or the bagel with melted cheddar as much as I tought I would.   Mourning is stronger that culinary freedom.  

12/26. It's getting easier. I try not to think about it too much.  "Two and a half years is a lot". That is my mantra when I start to feel sad. 

3/1/14. It all turned out just fine.  I'm ok now.  though I admit, it was not the best time to have weaned.   Too many other stresses in my life to have added the heartbreak of that.   But it's all fine now.  

The year of YEAH ME!

12/5/13 

Liam turned my life upside down.  Every little tiny feeling of self criticism, wondering if I am doing enough has come on so much stronger.  It's no wonder when the kids are in bed I just want to sit on the couch with P and watch Roswell; improbable adventures and crushingly intense teenage love.  It's the perfect escape.   I remember sitting with the breast pump 2.5 years ago and watching Glee and meeting Becky for the first time.  I cried.  It was our anniversary. 

I have obsessively read the DS forums, but now I am ready to connect with real moms, here in my community, different philosophies and all.  I am now fb friends with them.  I asked about supplements. One is doing a normal multi vitamin, same as her other kids.  One just started dha and her son is nine. The other only mentioned keifer, which is an awesome probiotic boost.  And here I am with my dha, probiotics, trying to work in the bright orange multi made specifically for the DS population.  And still, with all I am doing, wondering if it's enough.  Wondering about the online stuff I read about DS and green tea extract, curcumin, coenzyme something or another.  Wondering how much what I do for my two year old will effect him when he is 20 or 40 or 60.  

At work I have heard through the grapevine, and at home through our EI team, that there is a month old baby with DS in the county.   Just waiting for them to contact us, they have been given our number at parents helping parents. Do they know I squealed with joy when I found out about them?  

1/20/14

So this is going to be the year of "yeah me!"   That's what I have decided.   To celebrate all that I AM doing instead of wondering how much more I could be doing.   That also includes a bit of self care.(what a concept!). 

I'm just gonna jump in and get started.   It's only 9:14 am and I noticed Liam had a runny nose so I gave him his oatmeal with chia and hemp seeds, honey and blueberries.   And applesauce with probiotics, multivitamin, vitamin d, echinacea and elderberry syrup.   (You may call me crazy for so many "add ins" or supplements, but that's ok.   I think I'm doing good things here. )  and I have done one set of flashcards.    So, yeah me!  

Food and stress= no good

Old drafts, need to come to light.  Snippets of my up down Fall journey. Food, weaning decisions, balance.  Acceptance. 

11/26/13 

I'm tired of having a family with different diets. I'm tired of all the things Liam can't eat.  I'm tired of stressing about it.  I wouldn't want to teach this to my daughter, but I'm a little tired of being different than everyone else.  And actually, I have no strong moral conviction against eating meat.  If it's good stuff: local and organic.   You won't see me buying packaged crap at food 4 less. (I'm not a total snob, I do shop there too). 

I worry about how it will be to travel.  Or when friends invite us to dinner, or play dates for Liam later.  What will he eat?   It's even stressful recently in our own household.  

This decision has taken me a while.  It took me a while to decide to give Liam fish oil even with all the good brain benefits it provided.  See, I didn't turn vegetarian some years ago.  I've been one my entire life.   

I think perhaps this has been one of the most difficult periods of my life and definitely one of the hardest decisions.   But I'm inching toward readiness to have a balanced family life.  Thinking about what's good for all of us.  

Crisis

11/26/13.  Holy mother of god and Scottish faeries. I needed that whiskey tonight. I was in a very dark place last week. Actually said crisis out loud a few times. Called a friend who is a therapist and said I need help. 

But I think I'm better. P and I went on a little date.  Just a drink.  

Didn't cry at all today.  Cried yesterday but that's cause I got a raise. Needed that boost. 

Or housing situation is changing.  Liam's diet is stressing me out.  And I got my period, the flu and a yeast infection all at once.  It sucked.  

Go tell it on the mountain

I think I may possibly understand the perspective of those people who go door to door "selling" their religion to you.  I have always been highly annoyed by them- judgemental, yes, sorry- but I may kind of get it a little now.  

A the risk of sounding cultish, my recent "religion" is called a neurodevelopmental approach to learning and working with my son who has Down syndrome.  And I want to go call it on the mountain.  Because I believe it is the best thing for helping my son develop his full potential.   Yes, I know that different things work for different people, and that everyone makes choices that work for themselves and their families.  It's just that I so desperately want to connect with someone in person who does what I do.  The online community is amazing, but I want flesh and blood, chatting over coffee while the kids play, comparing notes about program activities relationships.  

Our program, which is called NACD, truly believes that Liam can achieve a lot, and that we are never to make assumptions about his capabilities.  They believe that parents are the best teachers, and they guide us in that process every step of the way.  They combine occupational, physical and speech therapy all in one as well as helping us be advocates for our kids when it comes to medical issues.  I have found a community of moms online who are taking the same approach to their kids who have DS as I am, and it has been so incredibly helpful and reassuring to go on those forums to ask questions or just to see that everyone is talking about the same stuff I am.  

I am thinking about the friendships we make once we are parents.  Like how I have only made other parent friends since becoming a mom.  I think we tend to make friends with those who have similar parenting styles and life interests as us.  But I may be wrong.  It could be totally refreshing to have friends who have different styles and beliefs than you do.  But usually there is some common thread that brings you together in the first place.  I think I may slowly be starting to make some friends who live in my area that I may not have known otherwise.   We may have different interests and ways of navigating the new challenges that our newest additions to the family have brought us.  But we have kids with Down syndrome.  And frankly, no one else will truly get that like these moms will.  

Done!

Well Liam spent almost an hour at the dinner table but he finished his whole plate of food by himself with his own spoon. Good job Liam!

This is what I will say:

I have the chance this coming week to talk with the other parents at my parent participation class.  This is what I will say:

October is Down syndrome awareness month, and i believe one of my roles as Liam's mom is to educate others about the ups and downs of what that means.  

The gist of what I want to say is mostly positive.  

The rare times I was asked at the beginning about anything related to Ds was usually if I knew befor he was born.  The answer is no.  It was a surprise, and I had never known anyone with DS before, so this has been one wild ride.  I want to tell people about DS because the abortion rate for a prenatal diagnosis is very high, between 75-90 %. That is a personal choice and I firmly believe every woman's right.  

The fears I had at the beginning have turned into worries, no longer  fears, but I am a worrier in general.  Would he have a girlfriend?  Would he go to normal school? Would he drive?  Always live at home?  Would he engage, or have an empty look in his eyes?  That last one was and still is the hardest for me.  And I get a lot of mixed feelings when I see adults with DS.  But I am finding that Liam is indeed very engaged.  Shy around others often, but a funny and lively guy.  He loves books and playing ball and following his sister and having dance parties to lady gaga before bed.  He will have romantic feelings, have a job, quite probably live on his own.  I read about a young man who did get a drivers license, though this is uncommon.  And a man who was recently the first in Spain to get a normal college degree.  

Facts:  around half of babies have heart problems and need surgery. Hearing loss is common.  Low muscle tone ism the big challenge. Thyroid issues, autism, celiac disease and leukemia are all more common than in the typical population.  Early onset Alzheimer's. 

So I have a two year old and I am already thinking way ahead into the future.  How to offset decline in memory and cognition with nutrition and supplements.  His financial future if we were to die before him.  What needs to be put into place if when he turns 18 if we feel he isn't the best judge of financial and health matters.  

We have occupational and physical therapy once a week and an early interventionist and we also do a separate therapy program of our own volition which we love.  Right now we are working on core strength and bringing his legs in closer when he walks.  Reading books and flashcards and the input of a lot of knowledge.  Oral stimulation.  Processing, which for Liam right now means following two step directions.  

When he does typical two year old things I am thrilled.  When he started using a pincer grasp for the first time to pick up old food from the kitchen floor I said "no!", but inside I was shouting "yes!"  I freaked out hearing that some kids didn't potty train until 6-7 years old, so the fact we are starting is just friggin awesome.  

Here's what we have learned:  having high expectations is absolutely and vitally necessary. We will never let his diagnosis be an excuse for not trying our hardest at things.  We will raise him in the same way as his sister. He will be bilingual and well travelled. We will help him delve into and develop his passion.  There's a man in Arizona with his own restaurant. A woman with an internet cooking show.  I cling to these stories.  There is a catch phrase common in the DS community, "we are more alike than different". 

Questions?  

Pretend

Oct 20, 2013

I'm starting to see Liam do a little pretend play. You don't realize what giant leap that is developmentally until you are watching a child's development so closely!  

Just now he was making his penguin bounce, or dance, and make a noise.  And he's starting to get the pretend aspect of "play" eating.  

Faith

I have learned a lot about faith in the last couple of years. Obviously it has touched my life in some incredibly varied ways, but here is one tiny example:  I have read from many sources that turmeric is beneficial to people who are suffering from Alzheimer's or memory loss and knowing that Liam has a higher chance of early-onset Alzheimer's I have been adding turmeric to rice and other dishes. It may be that a more concentrated dose is more beneficial, but I don't know. I am using the spice, and it can't do any harm, and I can only hope that in some small way- along with all the other things I do, it is helping.