Down Syndrome Awareness Month Begins

 I like this kid so much!

I am going to write about Down syndrome this month ... but it'll probably be more pictures than anything else.

Bragging on Ben (End of April)

*** I wrote this draft back at the end of April.  I'm posting it now because I don't want to forget. ***

Ben is getting big and he's learning so much.  I want to remember the ways that he's grown this year.

I dropped Ben off for preschool this morning and watched him walk in the classroom.  He sat next to his teacher and she told him that this week they are working on the letter "X."  She showed him an X, then gave him a piece of paper with 9 letters on it (3 or 4 were Xs) and told him to find all the Xs and circle them.  He did.  He found the correct letters without help, and circled them (widely - he can't quite manage a small circle yet).

This morning, he signed the alphabet to me - in order - on his own.  Because he wanted to.

He can JUMP.

On Tuesday at Little Gym, he chose to climb the stairs to the balance beam, and then he walked all the way along it (with me holding his hands).  This is big because when we started these movement classes, he would avoid the beam at all costs.  Balancing takes a lot of core strength, and it's hard for him.

He can also hold himself up and swing on the bar.

He's no longer afraid to do a forward roll (although he still needs support to do one).

He can make toast.  (With supervision!)  Ben really wants to do all the cooking.  He loves to crack eggs and stir them for scrambled eggs, and he wishes that I would let him use the spatula (by himself)
to move them around in the frying pan.

He loves mirrors.  Anytime he sees his reflection, he has to stop for a smile and chat.

He loves to stop and smell flowers.

Ben is doing all sorts of stuff, but this is what I want to remember from the last couple of days.

Here's a photo of Ben admiring his reflection at Easter.  I think he's about to open a miniature Snickers.  Note the chocolate already on his shirt.  :)

And just for kicks, here are all 3 kids at Easter.  This is pre-chocolate.

Beginning of Summer Vacation 2015

For the last two years, we have taken our family vacation at the very beginning of summer - either immediately after the last day of school ... or we've taken the kids out a couple of days early.  We drive 6 hours to Houston, stay in a hotel, and have Ben attend some kind of doctor's appointment.  Last year, it was cardiology (where we got the amazing news that the hole is closing and surgery is not exactly off the table, but teetering way on the edge).  This year, it was a visit to the Down syndrome clinic.

Ben did great.  It's always a little discouraging to hear the results of evaluations ... especially in expressive language.  But ... it's OK.  The therapists and doctors there are very good.  They enjoyed interacting with Ben and had lots of good things to say about him.  They also gave us a referral for a sleep study and an ENT.  I just have to decide if it's worth it to drive 6 hours to Houston or if we should do those visits locally.

As a side note: we totally got stuck in Houston traffic on the way to the appointment and Ben threw up his breakfast in the car.  It was an exciting morning.  Fortunately, I had brought a change of clothes for him, and we managed to arrive on time.  Whew!

And then - off to Hawaii!

Another side note: it's probably not a good idea to fly with me.  I keep encountering delays!  This time, we got stuck at LAX for an extra 4 (5?) hours.  But we made lemonade: we met some other families with little kids and had our own mini preschool camp at an empty gate.

Finally, Hawaii:

We stayed at the Disney Aulani Resort for the first several days and had a wonderful time!  We played beach games, paddled a kayak, swam in beautiful pools, and just enjoyed hanging out as a family - including Emmett's mom and dad, plus Emmett's sister Jen, her husband and their boys.  The cousins had a pretty good time together.

Six Snapshots

I thought I should reboot the blog with a couple of pictures from my phone.  I just picked some from the past few months that make me smile.

(1) Kids at the doctor's office.  They are a goofy bunch.

(2) Brothers snacking on the couch and watching TV together.  

(3) Ben keeps changing the photo settings on my phone.  We took pictures after school the other day, and he kept making faces.  

(4) We had a big movie in the gym (it was supposed to be at a park, but it rained) for World Down Syndrome Day.  Super fun.

(5) This boy loves to smell the flowers outside the therapy office.

(6)  Corrie has decided that she's into wizards lately.  She's wearing her own wizard clothes - Emmett's tshirt and shorts (cinched REALLY tight around her waist).  On the table behind her, you can see all her nail polish bottles - otherwise known as potion ingredients.  She also devised a wizard costume for Ben - knit hat, Dad's tshirt, and a paper Gandalf beard.

We've been busy with many things - and enjoying most of them.  :)

Two Good Weeks

School let out on Friday, December 19th, and the kids have had the past two weeks off.  We had our own personal Christmas on Friday night.   Our little family does a celebration together every year before we travel.  It's too hard to take big gifts with us in the car, and it gives us the chance to read the Nativity story together and have our own mini-tradition before the chaos of travel and activities with extended family and friends.

Then things kicked things off with a bang at the RGVDSA Christmas Party on Saturday the 20th.  The plan was to go to the party all morning, go home, load the car, and take off for Mississippi on Saturday afternoon.

No go.

Evan started complaining about his head while we were at the party.  Emmett took him home while Corrie and Ben and I stayed for the fun.  By the time we got home, Evan was burning up with fever and knocked out on the couch - not the ideal condition for a cross-country drive.  So instead of starting off for Mississippi, we took an extra day at home.  Surprisingly, it was awesome.

Not for Evan.  He had a fever and a headache and chills and pain.  But the rest of us felt good.  I made delicious sugar cookies and brownies and white chocolate cranberry cookies.  We watched Christmas movies and soaked up the downtime together.

On Monday, Evan's fever was gone and we finally drove to Mississippi - made it there around midnight.  Best part of the drive was listening to our "Kids Playlist" on the Ipod - lots of Disney and Phineas and Ferb, with a surprise right in the middle:  we all rocked out to Bon Jovi "Livin' on a Prayer" and it was EPIC.

The next few days were full of fun:

Games!  Men (Emmett and my brothers Derek and Mark) versus Women (Mom, me, and Arthi).  The only game the women could win was Sequence.  The guys killed us at Cranium, Pictionary and Poor Man's Taboo.  Highlight of Cranium: my brother Derek imitating Zsa Zsa Gabor, "I zink I have an accent.  Zis is not the accent."

Cousins! Jake and Corrie explored all of the area around Grandma's house.  They formed a Nature Explorers Club and wrote essays about all the foliage they collected.  Olivia followed them around, and Evan would go running up and down Grandma's hill.  South Texas is flat, so Mississippi's rolling hills and tall trees are super exciting for the kids.

Christmas!  Evan has been asking for a BB gun for a few years now (just like A Christmas Story) and this year he got THREE.  All Airsoft - he has some friends who play in our neighborhood and he's been wanting to participate.  It was sobering to see him all loaded up with guns.

I wish we lived closer to family.  My brothers are some of the funniest people I know, and it would make my heart happy to see them more often.

*** More posts about Christmas to come.  Those posts will include pictures. ***

A Photo Post

Now that two months have passed, I've decided to start blogging again.  It takes some effort to exercise the writing muscles after a break, so I'm stretching first.  It's hard to find the words when I haven't written in a while.  So ... here are some photos from the past couple of months.

Corrie and Ben waiting while Evan got a haircut:

Corrie and I hosted a party for the adults in the Down Syndrome Association.  Corrie wanted us to match, so she put on jeans like mine, found a necklace, had me put her hair in a ponytail, and told me to wear my apron.

Evan crashed a photo before the DSA party.  

Corrie and I went to a glamorous birthday party - she had makeup on, and her hair and nails done.

Here's another one from the haircut day.  Corrie sang Laurie Berkner's song "I'm Gonna Catch You" and Ben danced.  Here he is doing the "I heard a sound" line.

Shopping at Target on a drippy day.  Ben pulled his shirt over his head since he didn't have a hood.

This was around Thanksgiving (note the headdress).  This is one of Ben's new expressions.  Makes me smile.

Corrie and Ben while we were reading books before bed one night.  They are very sweet together.  Also, I don't take photos when they are yelling or complaining about each other.  

Evan and Ben eating pears and relaxing on the couch.

I'll try to write more soon.

31 for 21: Day Three of Five: Seven Things

I've noticed other bloggers posting 21 things about their child with Down syndrome.  I think that is a great idea!  I'm going to break mine up into three posts, since I am not keeping up with my daily posting goal for October.  

Seven things to know about Ben:

(1) He's a music lover.  He started with Signing Time, then fell in love with Laurie Berkner, then it was Elmo and the Sesame Street celebrity songs on youtube.  For a while, Mother Goose Club intrigued him, and now ... he likes the music from Frozen.  If I have a chance, I'll try to video his interpretation of "Let It Go."  He doesn't really sing at all, but he knows all of Elsa's moves.  You can't help but smile.

(2) Ben has over 200 signs.  He's been slow to speak, so sign language has been a great help!  

(3) He is Mr. Independent.  I appreciate that Ben wants to do things himself (get dressed, walk up/down stairs, take the bottle of juice out of the fridge), but it also makes me a wee bit crazy.  I'm learning patience.

(4) Favorite food: pizza.

(5) Ben is fascinated by doors.  He LOVES the automatic opening doors at our church.  Every time we are in the lobby, he has to go in and out of the automatic doors.  He walks out, then moves to the right to stand next to the building while the doors close.  Once they close, he steps up so that they'll open again, and then he strides in again.  But he's not particular - he likes regular doors, too.  Emmett and I used to joke that if we could only find a toy (kind of like this one) that was just a door to go in and out of, Ben would play with it all day long.

(6) Ben's got a little Russell Westbrook in him.  If we're outside playing basketball, Emmett will pick him up so Ben can throw the ball in the tall hoop.  Once Ben's on the ground again, he has a whole taunting/celebration act that he does - lots of arm waving and yelling.  We're perplexed, because our house is tuned into Spurs basketball, and we know that Duncan and Leonard don't go on like that.

(7) Ben has been saying more words.  His first and most reliable word is "up!" accompanied by a finger pointing in the same direction.  Otherwise, he says "bubble," "mama," "dada," "papa," and just this week busted out "blue."  Preschool has had a huge impact on his verbalization.

This is a photo from last summer.  He looked so little then.  

31 for 21: A Busy Week

One of the best things about participating in the 31 for 21 blog hop is that you don't *have* to talk about Down syndrome, you can talk about anything.  You're just supposed to try to blog every day.

I've been talking about Down syndrome to people in real life all week long!  We're gearing up for our second annual Step Up for Down Syndrome walk, and I have been consumed by the details - Tshirt distribution, last minute vendor additions, layout for the walk pavilion, meetings with city officials.  I have a persistent uneasy feeling that I've forgotten something.

In the meantime, I also spoke to my MOPS (Mothers of Preschoolers) group about Down syndrome awareness month, and I spent today at a conference booth talking to medical professionals who do perinatal care.  The moms in MOPS were incredible - the last five years in that group have been some of my most challenging and rewarding as a mom.  It was a real privilege to present for them.

I keep telling people that it's a wonder that I can speak in complete sentences.  My brain is fried!

Evan, Corrie and Ben have been incredibly patient with me.  I have dragged them from one end of town to the other while I'm running errands and making phone calls, and I'll keep carting them around for the next week.  McDonalds and Chick Fil A are getting a lot of business from the Tomai family.

We did manage one family fun night last week.  Here we are:

 

31 for 21: Day One!

I have many plans for this October, and one of my plans is to post every day in recognition of Down Syndrome Awareness Month.  Since it's already after midnight on the first day, I'm clearly not getting off to the best start.

So ... meet Ben!

Ben and I enjoy taking selfies together.  I finally got an iphone, and now I'm going crazy with the selfies.  I try to control my posting on facebook, but I may indulge on the blog this month.

 

He's such a cutie!  

 

Let's Talk Preschool (1)

Oh, the drama!  Before having Ben, I was completely unaware of the process that children with disabilities go through before starting school.  Now I know (and we are only at the very beginning).  

To put it simply ... it's complicated.
 
The federal government provides Early Intervention (EI) services until a child turns 3.  If a child has a demonstrated need (or diagnosis), the school district becomes responsible for providing therapies and services for the child on his/her third birthday.  In order to determine what services the child should receive, the school district evaluates the child.  For Ben, this involved three separate sessions (one with a speech therapist, one with an occupational therapist and one with a physical therapist).  I also had an interview with a diagnostician, and then filled out a separate evaluation form.  Ben's current EI therapists (OT and PT) and his case manager submitted evaluations as well.

After the evaluations, it is time to determine what services the child will receive.  I do NOT understand all the complexities of IDEA (Individuals with Disabilities Education Act), but basically, it provides for each child to have an IEP (Individualized Education Program).  

This is a formal document that directs educational services including 

• therapy (what kind, how often, etc) 
• supports (a one on one aide, modifications to curriculum, etc). 
• location (in the resource room, in a typical classroom in the special education classroom)

It is intense!

Since Ben turned three in July, we've been trying to figure out what his school year might look like.  Here were some of our driving thoughts/concerns:

(1) Evan and Corrie both went to a small Christian preschool 3 mornings/week when they were three and four years old.  I stay home, and that was just the right amount of time for them to be in the classroom, have fun time with other kids, and still get lots of time with me.  And it's a wonderful school!

(2) The school district provides a 5 day/week special education preschool with a great teacher/student ratio.  Right now, there is one teacher, two aides, and less than five kids.

(3) Ben is predominantly nonverbal.  He has one definite word: UP!  He also knows 200+ signs and is a pretty effective communicator, even without words.  

(4) Ben scored near average on the assessments.  There were some distinct areas of delay (notably, speech) but other areas where he is close to his age in cognition. 

(5) We haven't really started potty training yet.

(6) Research shows that inclusive classrooms (with typical kids and kids with special needs) produce better results for ALL the kids.

(7) Ben, Corrie and Evan would get a kick out of going to school together.

In anticipation of Ben's third birthday, those thoughts have been rocketing around my brain for the past year.  We want to get Ben off to a good start.  What does that look like?

To be continued ...

 Dropping the big kids off on their first day ...

 Putting shoes on with Corrie before she leaves for school.

Rewriting the Story

Three years ago Wednesday, I had a baby boy.  My doctor held him up and announced, “He’s beautiful!  Perfect.”  And I will be forever grateful for her words.

Later, as I waited to hold him, I noticed some sideways glances and head nods among the nursing staff.  And when I finally held my son, I thought, he has Down syndrome.  I waited for someone to say something, to confirm what seemed obvious to me, but no one did.  So I wondered – am I wrong? 

They took him away, and I remember lying in the hospital bed overnight, just wondering.  Praying.  Waiting for my husband’s flight to get in so that he could wonder with me.  I felt fear.  Worry.  And the most protective love I have ever felt in my life. 

Eventually, the hospital pediatrician peeked his head into my room.  “You know about the Down syndrome, right?”

And that was it.  No information.  No local contacts.  Just a casual comment.  My feelings of ignorance and isolation lasted for months.

Fast forward three years.  I stood with two of the other women from our local Down Syndrome Association – an organization that didn’t exist when Ben was born – in the conference room of that hospital.  We were there to do a short presentation for the OB/GYNs who deliver there. 

“We are here to help. 

Here is a pamphlet about how to deliver a Down syndrome diagnosis …

here is an excellent booklet with accurate information about Down syndrome …

here is information about the Early Intervention program …

and here is information about our organization.”

Before any of the doctors arrived, I walked around the conference room and prayed.  I thanked God for the local relationships that exist now for families of children and adults with Down syndrome.  I thanked Him for the opportunity to talk to doctors about how they deliver the news, and I thanked Him for Ben. 

After the doctors heard our spiel, they had good questions about prenatal diagnoses, about the DSA, and they asked us to bring more information for the hospital social workers and staff.  The physicians commended our organization and requested extra packets for their colleagues.

It was surreal to be in that place, to remember the fear and loneliness of those early moments, and to contrast them with the sense of hope and community that I feel now.  Ben is a great kid, an essential element of our family, and the Down syndrome community (local and beyond) has been a gift to me.

I may not be able to change the story of Ben’s birth and my fear, but I hope that what we did on Wednesday will help other new moms and other babies to have a better start.

Look at my 3 year old!  Isn't he something?

 

Corrie's Summer Plans

Our family is ready for summer!  We have big plans: a trip to Hawaii, a trip (for me!) to Chicago and Indianapolis, possibly a Mississippi visit, lots of pool time, sleeping late, and more.

I asked Corrie if we could make a list of fun activities that she and I could do together - just us girls.  She ran with that idea, and now I have a list of 49 fun mother/daughter activities. 

Highlights include:

• travel ideas (Disney Land, Disney World and Kansas)
• cooking (bake cookies, cakes, pies, pancakes, waffles and pizza)
• napping on the couch
• relaxing on the couch
• entertainment (the Nutcracker and Rio 2)
• crafts (flowers and bracelets)
• make a video
• puddle stomping
• eat popcorn
• eat candy
• eat apples
• eat pears

She even added some self-improvement goals:

• jogging and exercising

And a few things that we don't know how to do:

• play guitar together
• sewing

And she recognizes that even chores will give us time together:

• cleaning the house
• grocery shopping

But my favorite item on the list is "a wedding."  So if anyone I know is getting married this summer, I have a 6 year old girl who would like to be my date to your wedding.  

I don't think we will manage to do everything on the list.  I'm pretty sure Disney (on both coasts) is out.  And I doubt we will even attempt to master the guitar in the next two months.  Jogging is questionable, too.

But I look forward to eating pears and relaxing on the couch with my favorite girl.

Work/Life Balance

Here's a piece of advice: don't ever ask me for advice on work/life balance.  I don't know how to do it.  I've been pulled in multiple directions lately, and the whole family is feeling it.  

 

Ben is starting preschool next year - in a private church-based preschool 3 days/week, and in the public school's special ed preschool class 2 days/week.  Ben has to undergo some evaluations, and then Emmett and I will sit down with representatives from the school district to figure out Ben's IEP (Individualized Education Program).  We'll have these IEP meetings at least once a year until Ben finishes high school.  I've been researching Ben's rights and thinking/praying about how to advocate for him in this situation.

Meanwhile, Evan and Corrie are both excited about the church Mother's Day musical.  Just typing those words reminds me that we totally missed rehearsal tonight.  Oops.  We ran errands instead.  I took all three kids to the grocery store, Hobby Lobby AND Wal-Mart, plus we picked up milkshakes from Sonic and visited Emmett at work.  Then I fed them frozen pizza and put them to bed - we skipped baths.

 

And Evan is still playing soccer.  Note to self: don't forget practice tomorrow!

 

Plus ... we have exciting plans for the RGVDSA this year, and I have a long to-do list.  It has been wonderful to see the organization grow, but there's a lot of time and work involved.  And my vision feels bigger than my abilities.

 

Ben and I drove up to the school district this morning to drop off some paperwork, and I realized that sometimes it is just hard to be a parent of a nonverbal kid.  Ben babbles - he's very expressive - but he has no reliable spoken words yet.  He has tons of signs, so if I'm looking at him, we can have conversations.  But in the car, I can't see his signs, so it's easier to just turn on the radio or talk to someone on the phone.  

Part of me is grateful to have one quiet kid (Evan and Corrie talk all the time) but it's not fair to Ben for me to view his silence as my free time.  When I would drive with the other kids, we would sing in the car or point out the windows at trees or machines.  And I remember to do that with Ben some of the time, but I often find myself just forgetting to interact with him.  My mind goes straight to that to-do list.

 

Ugh.

 

I have similar moments with Evan and Corrie.  "Just wait ..."  I say, while I type one more email.  "Instead of running in the race, will you sit with me at a table to hand out info about Down syndrome?"  I ask.  They lose some of my time and attention so that I can be an advocate for Ben and for other individuals with Down syndrome.  It is their sacrifice.

 

So ... tonight while the kids and I were running errands, I asked all three of them, "Do you mind?  Is it OK that I do stuff for the Down Syndrome Association?  How do you feel about it?"  I want them to know that they are the most important people in my life.

 

They responded immediately.

 

"It's great, Mom!  You do a walk, and then there's cotton candy!  And popcorn!" exclaimed Corrie.  "And it helps the best baby in the world - Ben!"

"It's the right thing to do," said Evan.  "You help people."

And Ben smiled and waved and signed a song.

I think this will be a long journey - figuring out the balance between family and service.  For today, I am just thankful that these three (and Emmett!) are on my team.