Prayers for Ewan

Please keep baby Ewan and his family in your prayers.  He is only 10 days old, recovering from open heart surgery.  The doctors didn’t give him much of a chance – even suggested terminating the pregnancy – but his faithful and courageous parents loved him enough to give him a chance at life, and now he is beginning to amaze everyone.

(Not So) Big Changes for Matthew

Matthew’s 3rd birthday ended the in-home services we had been receiving through Walla Walla school district’s Early Childhood Education program.  That sounds like a big deal, but it’s really not – and not going to change things much around here.

You see, we’ve always been minimalists when it comes to Matthew’s therapy.  We didn’t even start any therapies until he was over a year old, due to all of his health issues during his first year of life.  And, when we did start, we had a 45-minute session in our home with an OT every-other-week.  When we moved to Walla Walla, that changed to a session every week, alternating speech therapy and time with an early-intervention specialist (someone with training in speech, physical, and occupational therapies for kids age 0-3).

We soon requested that the speech therapist NOT continue her “services,” as we truly felt she was doing more harm than good.  I know I haven’t mentioned this before, so if you would like to know more about our experience, please email me privately.  However, I think it’s important for other parents to know that not all teachers teach good things, not all therapists are wonderful, and not all therapy is beneficial.  Instead, our EI specialist lengthened her time with us, came every week, and included language therapy in her sessions.

In all honesty, Matthew’s therapy was not ground-breaking science.  His therapists brought toys (lots of shape-sorters), played with him, sang some nursery-rhymes and finger-play songs … but really wasn’t much different than the way we play every day.

Now that our in-home therapy is done, we will change to a once-a-week session with a speech therapist.  We will take him into the school for this, but it will still be a private therapy session.

That’s the short story.  Instead of once-a-week therapy in our home, we’re changing to once-a-week therapy at the school.  Not a big deal.

However, those of you who have a child with Ds know that there were a lot of options, pros and cons to weigh, and big decisions that led up to this choice – and the decision IS a big deal – so if you want to know more details and our reasons for choosing this option, please read on.

. . .

For over a year now, our therapists have been pushing to enroll Matthew in the early intervention preschool here in Walla Walla as soon as he turned 3.  I was resistant to this option, but tried, as always, to remain open-minded and do what is best for Matthew.  But, I’m a stay-at-home mom for a reason, and that reason is I want to raise my children myself – not send them off to be raised by the school district.  I gave up my career to do this.

I was thrilled when I recently read research done by the University of Washington that showed “siblings have a positive impact on, and play an important role in the development of, a child with Down syndrome.”  It is something we knew already – that being around his brothers is good for Matthew – but it’s nice to have some research to back it up when you feel like you are going against the grain … like keeping your child home instead of sending him to the early-childhood-education preschool.

We’re considering home-schooling all of the boys, and I wouldn’t dream of sending Micah or Jesse off to preschool 4 days/week at age 3.  I think 3-year-olds belong at home with their mommies!  Especially my Matthew – he’s still a baby in a lot of ways – not at all ready to be sent off to school.  He still can’t communicate well enough to tell me what happens when I’m not around – and that worries me.  I guess I like to know what’s going on, know what my child his hearing, seeing, and learning, and know how the other adults are treating him – I’m a controlling mom, I guess!

Also, our experience with the speech therapist made me quite unwilling to blindly accept any therapy our school district offered.  Instead, we have become quite cautious.

In the Spring, we visited the Early Intervention preschool.  The teachers seemed energetic and enthusiastic, the teacher-student ratio was great … but there was something very wrong about the classroom.  All of the other students had behavioral problems or autism, with the exception of one adorable little girl who was blind.    When we asked about other kids with Down syndrome, we were told that Matthew would be the only one in the classroom.  Why?  “We’re just not seeing very many kids with Down syndrome anymore,” I was told.

. . .

My heart breaks a little more every time I hear that.  The fact remains that 93-95% of parents who receive a prenatal diagnosis of Down syndrome will abort their child.  (Isn’t prenatal testing wonderful?)  So, “we’re just not seeing many kids with Ds anymore” because their parents killed them.  Matthew’s would-be friends, would-be classmates, are dead.

. . .

Just a couple weeks ago, we did have Matthew “evaluated.”  It will take another post to delve into those details, but for now, we’ll just say that Matthew doesn’t fit into standardized tests very well.  As I was discussing his results with the Early Childhood Education team, I inquired about their personal experience with other kids with Down syndrome.  I was met with a surprising response:

“Oh – we’ve never evaluated a kid his age with Down syndrome before.”


This is the team that, for the past year, has told me that they are the “experts,” and that they know how to educate my child better than I do.  And now they tell me they’ve never worked with any other child his age with Down syndrome.

For now, we truly believe that home is still the best environment for Matthew.  We will not be needing your preschool.  He is thriving in his current environment and his current situation, and we see no reason to change it just because he turned 3.  Thank you for your time.

Happy 3rd Birthday, Little Miracle.

My sweet Matthew,

Three years ago today, we welcomed you into our arms.  Little did we know how you would fill our hearts, too.

Your first days were a little bewildering for all of us,

but a third birthday was something we didn’t dare dream of.  The fact that you are who you are today is truly incredible for a kid who “definitely will not live to see his 1st birthday!”

We had a lot of fun today, kiddo.  We celebrated YOU.  We did some of your favorite things, and we all had fun.  We visited a friend who let us visit their baby chickens.

You also helped feed their cows, pet their cat and dog, and sit on the tractor!

Your brothers enjoyed the “farm,” too.

Micah’s quote of the day: “Mama, I LOVE chicks!”

Then, Grandma and Grandpa came over, and there were some presents to open!

You opened some horses for the ever-growing animal collection.  You sign “horse,” say “neigh,” and march them along with a “clop, clop clop.”

But, I’m afraid your Mommy and Daddy spoiled you a little bit this year with a battery-powered ride-on.  We couldn’t help it – it’s just so much fun to hear you say, “Go! Go! Go!” “Weee!” “Oh, Wow!” and “Yeah!”  It’s speech therapy, really …..

You even let your brothers have a turn.


Matthew, thank you for blessing our family in so many ways.  Thank you for your sweet hugs and kisses, your unmatched love and affection, and the joy you put into our every-day moments.  Thank you for your energetic spirit, your enthusiastic smile, and the incredible effort you put into everything you do.  You give us far more than we can ever give you.  You are our son – loved more than we can ever express.

Happy Birthday, little one.  Happy Birthday!