Mambo Italiano

She's a dancer! After only four weeks of ballet Lupe got to perform on stage! I'm so proud of her.  And I'm excited to see how far this goes.  In the past I've let Lupe "dabble" in things.  She's done ballet before, soccer, gymnastics, etc, but then I let her stop if she's not so into it.  But at 7 years old I think it's time to stick with something for a while and have the opportunity to see that hard work really does pay off, that time and practice really do bring improvement.

So it's plies for the next year!

Backstage door.  Like a real performer!  She cried when I dropped her off for the rehearsal the morning of the show- because she had to be led back by a teacher- no parents allowed.  But she walked out an hour and a half later smiling!

Breastfeeding my son with an extra chromosome

I was asked if I would participate in a local documentary for the Birth and Baby Resource Center about breastfeeding a baby with special needs.  I don't know if I'll be able to make it but I want to think about what I'd say.
My firstborn was challenging.  I was new and unsure and she was born via cesarean and I was recovering.  It took two, no three months to start improving and for me to feel like it was working.  I supplemented and pumped and did everything I could.  Then we successfully breastfed for almost two years.
I thought with number two it would be easy peasy.  Especially since I had also worked for two years as a breast feeding peer counselor for the WIC program.  Right?
Wrong. Oh so wrong.
Much to our surprise he was born with an extra chromosome, otherwise known as Down syndrome.  We knew nothing about that but apparently low muscle tone is a big issue.  So I had a baby with low muscle tone, "floppy" was sometimes used to describe him, plus he had to stay two weeks in the NICU for help with oxygen and breathing.   Imagine!
He had tubes in his nose and things taped to his chest and finger.   But I was SO determined!  God dammit I was going to nurse my baby!
He had a hard time but I kept trying.   I had a new baby in the hospital and a toddler at home.   I would stay in the hospital as long as I could, then was finally convinced to go home and rest.  I'd wake up every two hours at night to pump for a baby who was not in the room with me.  I'd experienced low milk supply with my daughter and knew this would be challenging.  That's whenI started this blog.  Pumping and drinking protein smoothies and giving little bottles, even two ounces of milk, for my husband to drive over to the hospital.
On our wedding anniversary, six days after he was born, my husband brought the pump out to the living room- whoo, living it up!  We watched Glee and I saw Becky for the first time.  Becky, the teen with Down syndrome.  I'd never known anyone with DS, and never seen someone represented in media.  I cried with so many mixed feelings.
In the end, I had success with Liam sooner than with my first, (and we bf for 2.5 years) , despite these crazy challenges.  I think two things helped a lot.
1.  Crazy ass DETERMINATION.  Nothing was going to stop me until my son was nursing successfully.
2.  Going to a weekly BF group at a local lactation consultants office and tracking progress. Seeing that every week he was gaining weight and getting a little more milk out of me each time.  I had to see tangible progress.   And with that my confidence increased.

Confidence is so much of it.  I knew how important it was especially for this new baby of mine because he needed the immune support breast milk offers and the low muscle tone needed breast-feeding to help with muscle tone in the mouth.   I thought about how much benefit I could give him by nursing him and I was determined like nothing else ever before in my life

Dear New Friends

Dear New Friends,
I never imagined this part of a life with Down syndrome: being super excited to meet another family of a child with DS.   But it's true, finding out that a family has had a baby, or a new family has moved to the area is like welcoming a family to our "tribe", a tribe I never imagined I'd be  part of but it's pretty cool!
I could have talked your ears off for hours yesterday.   And so much more I want to say. First and foremost:  be hopeful!  There is so much out there for our kids these days.  I can't wait to find out what Liam's passions are and to help him go for gold with whatever he wants.  And now that I say that, I realize that this is what I'd say for my daughter as well.  It's what we do for our kids.  We help them to reach their potential.
Cling to the good stories, believe in the good stuff you hear.  Surround yourself with that.

And don't forget that it's never too late. It's not just bodies always growing, but minds too.  That being said, some things are good to start young.
There are several different areas we have focused on and i have researched:
1.  Neurodevelopment.  This is our NACD program and I think it's the best thing we have done, bar none.  (More on this below)
2.  Diet changes, no gluten or dairy- people with DS are more sensitive to gluten and dairy and while I may not see hives or diarrhea when Liam eats these things, they are good for his long term health.  With Liam I have to think about the long term.  (the sensitivities did however show up on a blood test, so I know these foods are not great for him)
3.  Supplementation.  The first ones were probiotics, DHA and a multi vitamin specific to DS called Nutrivene D.  Since then I have researched many more things and tried to implement them, though I am somewhat sporadic so I don't know if they are as effective as they could be.  (Curcumin, Ginko Bilbao, etc)
4.  Advocacy.  Taking charge of your child's development.  NO ONE is as invested as  you are.   Instead of always looking for the experts, remember YOU are the expert.  Of course you need input and guidance, and hopefully you find some good "experts" who believe in your child, but remember, it comes down to your love and dedication.  Your advocacy.  Advocacy is going to be a big part of this journey.  I research and have found amazing websites, blogs and forums.   Rather than take questions to my pediatrician, I tend to take requests. (Hey Dr M, let's check thyroid, iron, atlanto axial instability,  hearing, etc).  IEP team? Oh, don't forget we are the most important members! (That's a whole other blog post)

You have to learn to trust your gut and do things that you feel are right.  Others might disagree sometimes.  Thats's ok.  If you are wondering about trying a neurodevelopment program, you should just go for it and give it a whirl.  If it's not going to break the bank.   If you don't, you might always wonder what would have happened if you had tried it.
And I think it comes down to priorities also.  What is important right now?  Our thoughts have been over the last few years that our priority is our kids.   The younger years create the opportunity for more time together, there is no full school day.   It is time that goes by fast and it is a time of exponential growth.
Time and money?   I think those things can be figured out.
Knowing that we are doing the best we can for our son who is going to face many challenges in life? Knowing that we are giving him the base, the foundation to help him succeed, that is important.  The best learning comes from home, and with Liam's unique differences, we feel that we have the training and knowledge to feel like the experts in his life (that is not to say we don't need help, we do).

I have come to this place where I am today as a mom, slowly.   Don't think this all came to me at once, that i am so on top of it.   It's important to do one thing at a time.  Otherwise it is most definitely overwhelming.  So choose one thing, if you wish, and start.   I'm here if you have questions or want support.  Oh yeah, the other thing I've learned is that my best support and info has come from other moms.   We rock!
And remember- be hopeful!

Liam turns 4 in Big Sur

July 2015
We went to Big Sur for Liam's birthday but this time we camped out for the first time as a family.  Yeah!  P has never camped before (well, except for that time in the Lacandon jungle of Chiapas, but I'm going to say this was the first time because we didn't have indigenous guides planning everything.   Well, we did have the tips thought!)   My brother and sister-in-law went with us and they have camped all over the world, literally!
Lupe camped once in our backyard in Atascadero with her tios.
I grew up camping in Big Sur, before it was mobbed by hoards of people from all over the world.

I think Liam's favorite part was the marshmallows

I love the portobello mushroom burgers that my brother and sister-in-law made wrapped in foil over the campfire

Bacon in the morning (veggie bacon.  What's that you ask?)

I

McGraths in caps.  

M

Liam loved throwing rocks in the river.  

And speaking of rivers, we love to end our trips at the River Inn 

Yesterday we were watching whales

Yesterday we went to Avila beach to see the whales. From the pier we could see 4 to 6 humpback whales breaching just yards away.  It was spectacular.  

But Liam fell asleep in papa's  arms.    And today we are in the hospital again.  We don't know exactly what's going on but Liam is fighting some kind of infection.  He has a fever but his oxygen levels are good.  What is concerning is that half of his face is red and swollen up and he can barely look out of one eye. (Black marker is to keep track to see if the redness spreads) 

Update.  It's the next morning now.    10:00 and we haven't seen the dr yet but though his eye is still swollen and face puffy, the redness is less pronounced.  No fever 

He ate a ton of breakfast 

He looks like he got in a fight or a bug bite.   But we still don't know what the cause is.  One of the night nurses was the mom of a girl in Liam's canceled swim class and we saw a family we know with a baby here in the Pediatric Unit.   Small world. 

I'm so grateful pedro and I each got a day off work.  We could have taken turns but it's so much easier and reassuring with both of us here.   And we have family and friends to help.   Thank you God.  

 Third night here.  Slowly improving everyday.    He's eating well and a good lil' trooper.  

He's as independent as ever.   We have got the hang of going to the bathroom and having to roll down with the IV machine.  He

Inclusion

"They" think that my son needs to be in a special day class in order to learn.  Apparently the "IEP team" determined that this was best even though Pedro and I are part of that team and our opinion was not asked for

Our wish is that Liam go to his neighborhood school which is three blocks away and his sister attends.  Our school is our community.  We have been a part of it for three years now. 

Here we are heading to Math Night. We live three blocks away

Liam liked it so much he didn't want to leave. 

6/12/15 update 

Sounds like our voices have been heard

Here is what I prepared and read in the meeting:

We feel we should elaborate with more detail our hopes and dreams for Liam.  SLO is a small community and we love spontaneously  bumping into friends at Farmer’s Market, knowing our mail carrier and saying hi to people as we walk to school.  This is what it means to be part of a community.  We see Liam living independently, working and contributing to his community.  We see him walking downtown and seeing people he knows and engaging in conversation.

Being part of the community can’t start too early, and in fact, Liam is already part of many communities.  Liam has been going to our neighborhood school since he was a baby.  When his sister was in preschool, he would sometimes sit on the floor next to her during  the initial circle time.  Other kids would put their arms around him.  During sister’s kinder and first grade years we walk in to pick her up at the end of the day and half the kids turn around and shout “Liam!”  He hugs every teacher his sister has introduced him to.  When I gave an art lesson in her class, he followed me around also pointing to the kids art work and making his own “comments”.  When one of his first grade buddies said “Hola” to him, gave a hug and walked away, Liam called after “Como estas?” Spontaneous speech in two languages!  The first grade class made get well banners when he was in the hospital.  Inclusion starts from the beginning.

We see the school as being supportive of the strong education Liam receives at home.  Home is an environment ripe with learning and rich in language and has been since day one.  Especially since we have essentially homeschooled Liam.  He has had no therapies or services for almost a year, and he has gone from 30 words to maybe 200 or more, in two languages- with couplets abounding and spontaneous phrases emerging.  We aren’t asking the schools to be the primary teachers of our son, but to be one piece of a community of educational support which includes us as parents. We are looking to give Liam a preschool experience in the community that already embraces him.  It takes a village!

As the evaluations saw Liam as being so far behind developmentally, it was a wake up call to us as parents to rededicate to his home program which we had been slack on for many months.  A renewed dedication to exercise and self care is one of our many steps to being even more dedicated and enthusiastic parents.  There’s some straight up honesty for you!  In the last 2 weeks Liam has learned all his colors, much of the alphabet and is working hard at sequential processing activities.  

Liam loves Pacheco.  He loves the teachers and many of the students.  He loves walking to school and being part of the group.  He deserves the opportunity to go to his community school and give it his best shot.  Can’t we find a way to give him this opportunity?   

Also:

 Goals for Liam:

Liam will flourish in an environment that supports his understanding and expression in two languages.  Liam will benefit from teachers who understand his language/cultural background.

To be ready for a 90/10 Language model at Pacheco, Liam needs more exposure to Spanish in a classroom setting.

Liam will maximize his full potential by learning and playing with typically developing peers, fully included in a general education preschool with support.  

Because of his delays, Liam will benefit from an instructional aide part time to support him in a fully inclusive classroom.  Behavior is not an issue, but toileting, fine motor and perhaps transitioning need support and attention.  

Liam needs help to continue to improve articulation and expand his utterances to 3-4 word sentences.  He could benefit from techniques using straws, whistles and horns to improve facial muscle tone.  Liam learns well with 1:1 speech therapy.

Processing is the key to much of Liam’s development.   With individual support and focus on increasing Liam’s visual and auditory processing, his potential will grow by leaps and bounds.

Also:

I understand we have a lot to talk about today.  I’d like to get down to the nitty gritty if we may.

Liam will be attending Pacheco preschool in the Fall. He could benefit from- and he is entitled to- some support and that is why we are here today.  We would like to continue working on his goals and making modifications.  

1.We would like to take him for speech therapy 2-3 times a week.  If there is a law or policy that prohibits him from receiving those services at his school we will take him to PEEP.  We have transportation covered, even though he qualifies for it on his IEP.  2.We think the right Aide could be very beneficial to him in the classroom.  Special Education law states clearly that he has the right to try inclusion with support.

I understand that you are offering what is typically available for a child in this area with a similar diagnosis.  However, you are failing to offer a full range of options, including full integration in his community school with typically developing peers, which is the only placement that meets the definition of LRE as intended by State and Federal laws, best practices and his right to be educated in the same school that he would attend if he were not disabled.  

We are not ignorant of his delays, but  we will not consider a SDC until he has been given the chance to attend his community school and we can evaluate his progress.  The proportion of disabled to non disabled children in a class should more accurately reflect the community, which is why the “reverse inclusion” you mention does not seem sufficient.

You must be familiar with the Holland Case in which it was decided by the court that a disabled student could be educated in a regular classroom “if the student can receive a satisfactory education there, even if it is not the best academic setting for the child”

Liam will benefit socially from a typical preschool.  He will not be disruptive to the learning of other students.  It will not cost the District more.  and he WILL meet some of his goals successfully there.  

The US Department of Education’s Draft Policy Statement of Inclusion of Children with Disabilities in Early Childhood Programs states:

(page 3) Defining Inclusion

That is from the Dept of education.  If you want me to send you all the other research that supports Inclusion I am happy to do so.

Under LRE requirements, the IDEA presumes that the first placement option considered for each child with a disability is the regular classroom the child would attend if he did not have a disability.

Diane in your emails you mentioned all the ways in which the IEP Team offered or determined things.  It felt very exclusionary.  Absolutely no one in this room knows Liam like we do.  Correct me if I am wrong, but the tone indicated that your offer was all or nothing.  

Liam’s disability is not severe.  The first page of his IEP indicates that he cannot function well in a preschool with peers.  This is not accurate.  Let me repeat that we are not denying that he has delays.  But he has A LOT of potential and many of his goals can be met in a regular classroom.  They are skills that most beginning preschoolers are trying to acquire.  

Can we work together on this?

Also:

Liam has a sense of humor which shows itself in both  English and Spanish.  

He plays for long periods of times with balls and dolls with a lot of focus.  He will play with his sister or independently beside her.  

He loves books, the library and his bedtime story routine.  He will “read” favorite books independently or bring a book and ask for it to be read.  

He shows pre-writing skills, recognizing his name, several different letters, and making marks on a page as he says out loud the letters of his name.  Liam has learned to read some high interest words.

He uses spontaneous speech in courteous ways, expressing “Thank you” for something or saying “bless you” after someone sneezes, without prompts.  He mentions the the kids from preschool and makes attempts to tell us about his day.

He kisses his sister when she cries.  

He is curious and attentive.  Loves playing ball, dancing, jumping and hanging from a bar.  At his soccer class with typical peers one mom commented he was the best in the class!

At the same time, he has some needs.  Liam needs help and practice with annunciation, and expanding his phrases to 3 and 4 words.  He has an emerging strong will and will occasionally walk away and not stop when asked.  His processing level is of utmost concern and as it improves, so will all areas of his development.  No test can measure his potential.

He has UNLIMITED POTENTIAL and he is ready to take on the world! 

And finally:

What do we want Liam to learn?

To be curious and to try new things

To be excited to go to school every day.

To play with other kids.

To communicate in a way that he is understood.

To continue to differentiate between the two languages he knows.

To understand and participate in routines.

To go potty independently

To follow directions well without too many prompts, and to increase amount of directions/steps he can understand and follow through on.

To steadily improve fine motor skills.

What do we want teachers/other professionals to know:

To have high expectations

To see him as Liam, and not as any earlier known ideas about Down syndrome.

To know that he can understand more than he can communicate

He needs time to respond when asked a question.

He is learning and processing two languages- there is a lot of activity going on in his head!  This is a good thing.

He loves to learn.

He has a bright and illimitable future ahead of him- we can all help make his dreams come through.  

It starts now.

That was a lot!

40

I'm 40!

Grocery shopping was fun today!

Most of the time we do grocery shopping as a whole family so that one of us can get the shopping done and one of us can pay attention to the kids meaning mostly Liam.  I don't often do the shopping on my own with the kids but when I do Liam  stays seated in the cart to make things easier. 

Today however....

First we went to the farmers market which is just a very tiny one on Sundays.  Liam helped carry things like the bag of kale. We went to a stand where the man said "Hola" to Liam.    Then Liam responded "Hola.   Como estas?"   Ha! So proud of my bilingual boy learning how to have conversations. 

Then we listened to the man playing guitar.  He finishes a song and Liam applauds with enthusiasm "Bravo!!" He says, then adds, "Let it go" making a request!

And shopping was a dream! Liam and lupe walked the whole time.  We kept Liam engaged talking to him and having him help choose things to put in the cart.   And we did this in two stores.  No sitting in the cart. Lupe was an awesome big sister. 

Poor little guy

Here's what I do when my poor little guy gets sick.  

We let the fever do it's job fighting off the sickness and tried to just keep him cool and comfortable.  Treating his cough is harder. 

He slept and slept and slept all night and most of the morning and when he woke up he was dehydrated and hungry.   I made him some hot brown rice with Chia seeds,apples and strawberries and hemp milk.  He's eaten three bowls and he wants to feed himself but his poor little hand is shaking from weakness.  

Then he gets some of his Nutrivene-D multivitamin in applesauce and then some vitamin D3, probiotics, echinacea and colloidal  silver.   

And of course some Breathe oil and Thieves.  

However, things took a turn for the worse. So we went to the pediatrician's office at 4:30 pm and they sent us to the ER so that they could do a chest x-ray and rule out pneumonia.  5 1/2 hours in the ER and he seemed to perk up after oxygen breathing treatment and then iv fluids. No pneumonia.  Blood work fine.  They sent us home.  After seeing police dragging people in to the ER and a woman screaming we were glad to go. 

He seemed better but the next day right before our follow-up appointment he spiked a pretty high fever again. So back to the hospital and after more studies and more breathing treatments determined that he had RSV.  The coughing continued and he was complaining about it hurting.  Antibiotics were started for a possible sinus infection.  We have stayed here two nights and he is breathing better.  Everyone has been really nice.  

Pedro and I have both taken a day off of work and Lupe has been staying with the grandparents and been picked up from school by friends. The kids miss each other.  

How GRATEFUL I am to have family here.  

Lupe's first grade class made pictures for Liam and sent him some toy cars to play with.  How amazing! Liam is loved in first grade.  

So sometimes hospitals and medicine are absolutely the best route. We have been struggling for so long with his on again off again congestionand raspy breathing.  It's been his only real health concern (And with Down syndrome there could have been a lot more problems)    We have tried diet changes and other things.   So when asthma was mentioned and the idea of flushing out his sinuses a lot more often and using an inhaler when we hear the wheeze, well, if this helps his overall respiratory health then we are grateful for some solutions.  But something is triggering this and that is what I'd like to find out.  

Parenting is damn hard work.  

He's better. 

Pre IEP evaluation hormonal rant

I love my family so much it hurts.  I really am grateful to be on this journey and to have become a person who has so much fucking respect for parents of children with special needs and for the truly open and caring professionals who are trying to help.  

But....

Sometimes I am just so fucking tired of it all.  I am tired of the assessments and seeing all the things that my three-year-old is not doing that others can.   I am tired of how much time it takes to learn new things.  I am tired of all the mental energy put in to researching and experimenting different things to help my child.  I am tired of the  negative thoughts I have when I hear parents complaining about the small things their typical child is or is not doing.  It is so hard to watch things that kids can learn so easily without a parents second thought when it takes so much effort on my part to teach my son to do the same thing. 

Sometimes I want to say screw all this worry I have but I can't. I can't because special needs or not I am a parent and we all do what we have to do for our children

So after the chance to do some errands by myself I took a quick hike on the way home.  Just 15 minutes.  And I went off the path and sat in the middle of a field of yellow flowers.  But I still felt gray. 

I tried to feel peaceful and look at the little ladybug hopping along the grass stems.    It helped just a little. I am feeling hormonal today and it was not the best day to watch my son being assessed and I will just have to live with that and feel what I feel. 

Little things that are BIG

Monday: Liam just said "mama help".  I have been prompting him to say "help please" for ages and he will repeat it when I have prompted him.  This was the first time he did it without any prompting from me.  What a useful thing to be able to communicate!

Tuesday: "good morning Lupe "  "mmm yummy mama". "thank you mama". unprompted

Wednesday: Liam offers me a cheerio and I say no thank you.  Then he laughs and says "Liam mouth, Boca".  My bilingual boy

Tuesday of another week:  "that one".   "Other side" 

He put a ball in my shirt and said "baby tummy".

Yesterday at the park he saw a cup on the ground and said "dirty".   This is a big one too because I don't think he has seen us picking up trash in public and throwing it away very often and he sometimes needs prompting him to throw things away.  It was a very good connection

He now brings me a book and says "read".   He had lots of favorites and says them by name.  

Liam probably has around 150 words or more that he can say.  But what I am seeing recently is him not just saying words or repeating me but actually using spoken language to communicate his needs.  THIS is important. 

Wait, and did I already mention that he says "thank you mama" spontaneously? That's just awesome for any three year old  I think. 

What do I want?

What to do I want for my kids in life?  

Aside from wanting liam to be happy and healthy, I want him to have friends and be loved. I want him to be able to go anywhere he wants and communicate with people and be understood. 

I want to do whatever I can now even at three years of age to help him be able to live as independently as possible when he's older. 

I want him to be interested in something and be passionate about it. I want to help fulfill his dreams however outlandish and impossible they may seem at the beginning. 

And for Lupe? Well pretty much the same actually. Liam may have an extra chromosome that affects many aspects of his life but really my kids are more alike than different.  They are both the children of Sara and Pedro.  And we want both of them to reach for the stars

Girl Scouts

I have to admit I had my doubts about the Girl Scout cookie selling. And a week before the official date of cookie selling season I saw many mom friends posting on Facebook to get everyone's orders in because ...the cookies were coming!!  So I did the same thing and had friends and family from out of town wanting to reserve cookies.  But then the day after receiving the cookies we set up a stand in front of the house and Lupe started on her homework as she called out her first tentative "cookies for sale!"  

And slowly the people started to come.  In three afterschool sessions Lupe had sold out of her 36 boxes. I started to go back on my online promises as we met college students who used to be Girl Scouts and the Cuban couple from up the street who heard Pedro speaking Spanish. 

And I realized that this was what it was all about.  Who was I to take away from Lupe's learning experience?  It's not a competition.  And it doesn't matter if you sell them all or not. 

What matters is a six year old girl learning to use her voice, meeting her neighbors and practicing her math while counting her money.