Lazy summer

I should really go on a Facebook vacation.  Cause seeing lots of people filling their summers with tons of activities and camps and fairs and trips is making me start to doubt myself.  My choice to not enroll in any camps and just take it easy.  One day at a time.     We did art for 5 weeks and have gymnastics.   Seems like enough to me. We're being homebodies.  Frankly it's also exhausting to take the kids places on my own.  So we go to the library.  Farmers market.   

Play outside with swings and bubbles.   Watch a Disney movie during the heat of the day. 

Make food.  Clean up.  Watch Greys Anatomy when the kids are in bed.  Sleep.  

It's enough.  

Dear IEP team

I so desperately want you to see my son, the individual he is, and not his diagnosis.   Please do NOT look at him and think of what you know about kids with Down syndrome.  Leave ALL preconceived ideas at the door.  But even so, you will not really know him over the course of several one hour observations.  Trust me to tell you about who he really is because it is possible that he doesn't let all his colors fly when several strangers are observing him.   

SEE THE UNLIMITED POTENTIAL IN THIS GORGEOUS BOY NAMED LIAM, NOT HIS DIAGNOSIS.

I'm looking at all these papers and evaluations and questions, and I understand their place, but it seems only logical to tell you more, so much more about Liam.  

Liam observes and learns from his environment.   He is thriving in the parent participation class we have been going to since he was one.   During free play he chooses activities that interest him.  He loves doll houses and all the little toys that go with them, and he spends quite a bit of time trying to fit little people into toy cars.   He shows great perseverance with this activity.  He will try any activity for a while if he is directed there.  During circle time he knows all the songs and does the finger play to go with them.  His vocalization during this time is minimal but it is obvious that his receptive language is strong.  He enjoys cleaning up in this group setting: when everyone has put the bells back in the bin he always picks up the bin and gives it to the teacher.  He anticipates things that come next.  Outside he loves the slides and the boxy red cars to ride in.   He will swing, bounce on the inner tube, stack boxes or play with trains.

He is comfortable with other adults once he gets to know them.  

When we are talking with other people he likes to introduce us: he points to me and says Mama, points to himself and says the second half of Liam, 'am, points to others he knows and says their names (Lupe his sister, Papa, grandparents), then he will point to the other person, or lean forward and touch them- he is asking their name.  

He tells us about half the time that he has to use the potty.  Number one or two.   We are starting to try underwear on warm days when we are home.

His sister is his most important teacher and friend.  He adores her.  Big time.  She taught him to sing along to the hit song from Frozen, "Let it go".  They play dress up together, play with dolls, dance.  If he could, he would stay all day in kindergarten with her.   Speaking of kinder, he is loved in his sisters class.   Everyone calls out to him when we arrive, giving him hugs and high fives.   He goes right over, after a few of the aforementioned hugs and high fives, to sit on the carpet next to his sister as they do their end of day routine circle time.  Then he takes his turn to hug the teacher.  

 He still loves peek-a-boo games.   He loves books, though he is an active, on his feet and moving two year old.    Every week we go to story time at the slo library.  He sits and listens to the stories and does the songs too.  His dad and I also do a once a month story hour in Spanish.   He participates in that as well.   

He understands two languages, though English is the stronger one since he hears it a bit more.   But we speak both at home.  He is getting the hang of counting 1,2,3 in both languages. And body parts, he's got that down.  

He says around 30 words, some are clear, some are approximations.  

So, he's my second child, and though I monitor his development a lot closer than I did his sister, I really can't remember now when he smiled socially for the first time or sat unassisted, or first played peek a boo.  I can't see that it's important if I can describe him like I am doing now.  

Liam needs more practice with fine motor activities.  He uses a pincer grasp.  He likes to put on pants, though he doesn't get the back over his diaper bump.  He puts on hats and scarves, a shirt over his head, and other peoples shoes.  

He drinks from a regular cup and we are trying to learn straw drinking.  He could blow his nose from an early age but rarely is able to blow out his mouth, like to blow bubbles.  He feeds himself with silverware. 

He is almost pedaling his tricycle but his legs are still a little too short.   But he really wants to do it! He has upper body and abdominal strength we should all envy!  He loves to hang form a bar and started doing so at the top of slides before going down.  We recently went to a birthday party at a gymnastics place and when he discovered the bars at his level he started hanging and also reaching his legs up to the bar: he was the talk of the party!  He is really good at dribbling the soccer ball across the lawn.  He is not jumping yet, but he will lift one leg then the other.  

Our main goal for Liam is auditory sequential processing.  He is at a level one.  He can follow many one step directions, and is sometimes close to a two step direction.   

Our goal is to do everything we can to get him to a solid level two, and ideally three by next year.  "Auditory sequential processing is the ability to take in bits or pieces of auditory input and to process these pieces in a sequence. Initially, each individual phoneme is a bit, then we learn to recognize a group of phonemes together (a familiar word). Eventually a familiar couplet or phrase is also recognized and processed as a single bit of information. As the child develops the ability to sequence more and more bits, her language ability grows. This language progression grows from an initial sound, to an approximation, to a word, to a couplet, to a three-word phrase, to a four-word phrase, to a sentence and then strings of sentences. The function that makes this possible is auditory sequential processing.

Normal auditory sequential development occurs at the rate of one bit per year of development. Thus a one-year-old child can process one piece, a two-year-old two pieces and so on. Normal auditory sequential processing for a child of seven years or older is considered to be seven plus or minus two digits. Our perception is that anyone over the age of seven with a digit span of less than seven has a deficiency in auditory sequential processing. Auditory sequential processing determines the ability to process language, to think conceptually, and to express oneself in words."

Our goals for Liam are to keep him active in rich and stimulating environments full of opportunities to explore sometimes freely and sometimes with guidance.   We want him to have only the best role models around him, modeling language and behavior.  We want to work with educators who see his absolutely unlimited potential and are open to learning about the home program we do with him. We want creative ideas for fun fine motor activities, creative ideas for working on auditory processing.  We want to take dance, gymnastics, swim and music classes.   We want to be involved in his education and possible preschool experience.  

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!