Welcome, Jesse Gabriel!

Jesse Gabriel Vawter joined our family yesterday, August 30th, at 6:51 am.  He weighed 7lbs, 9oz, and is healthy and doing well.  Amy is recovering well and feeling good, too. 

We will post some pictures as soon as we get everyone home!

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What if?

When I was little, my dad used to read me some Shel Silverstein poems.  One was about little creatures called “Whatifs” that would crawl inside your ear at night and whisper worries regarding all the “What-if’s” in life.  I still have days when those Whatifs come creeping, whispering all sorts of worries about raising my precious son who has Down syndrome.  I think all parents of kiddos with special needs have difficult days now and then, worrying about their child’s future.  Nobody worries more, however, than the expectant parent – the one who has just received a “diagnosis” from their doctor, but who has not yet been able to hold their baby in their arms or look into his or her beautiful eyes.  I ran across an alternate list of “What-if’s” on another blog, and I believe Jessica was the original author.  It touched me, and I couldn’t resist republishing her list, and adding some of my own.

What if . . . ?

What if you fall madly, deeply, and hopelessly in love with your new baby?

What if he is the most amazing human being you will ever know?

What if he makes you a better person?

What if he makes your other children grow to be better people than they would have been without him in their lives?

What if you fall in love with your husband all over again for the way he fathers your son?

What if he brings you closer to God?

What if he touches and encourages more people than you can ever imagine?

What if he loves you more completely and sincerely than any other person you’ll know?

What if he is much more alike than different from other children his age?

What if he connects you with an amazing community of people that you otherwise would never know?

I invite you to add your own comments – what “What-if’s” can you add?

Pictures of our New House

Finally, for those of you who have been asking for them, here are some pictures of our new house . . . including pictures of the baby’s room – just for you, J!!  Micah had a LOT of fun helping to put up the “wall sticker” decorations in his & Matthew’s room and the baby’s room.  He kept saying, “Mommy!!  It’s beautiful!!”  What could be more fun than safari animals for Micah and Matthew, and sea life for the baby?  For my animal-loving 3-year-old, it just doesn’t get any better.

It has been a lot of fun to unpack and get settled in here.  I feel incredibly blessed to have my “dream house” while I’m so young!  We can see ourselves staying here happily for a long time.  To see larger images, just click on the thumbnails:

ASQs, EI, FRCs, and other acronyms

In order to get Matthew set up for early intervention (EI) services (such as physical or speech therapy) here in Walla Walla, we face another round of meetings, evaluations, paperwork, etc.  No matter how Matthew “scores” on the evaluations, though, he will still qualify for services based solely on his diagnosis of Down syndrome.

I had mixed feelings about EI services at first, and approached his first evaluation with a lot of dread and anxiety. What if he’s WAY behind?  What if he does need a lot of therapy?  How will I fit that into our schedule?  How much time will be taken away from Micah because of this?  What does it say about me as a mom if my child needs “therapy?”  Is there any evidence that all of this makes a difference in the end? I’ve come a long way since then, and have learned that EI services and the evaluations are just part of the package, and everyone’s goal is to help Matthew be the best he can be.

Matthew’s first evaluation showed him to be on-track with everything except motor skills, so we were seeing an occupational therapist (OT) in Yakima.  She was great – came to our home, always brought toys for Micah and included him, and worked with Matthew for about a 1/2-hour every other week.  However, I’m not convinced that those 1/2-hr sessions, where she played with Matthew on the floor much like I do throughout our day, made a big difference for him.  But, it wasn’t hurting anything so we continued with it.  I really felt like after his heart surgery, his motor-skills made amazing progress, and I started to wonder if he really still needed OT, or if we should concentrate on some other skills such as communication/speech therapy.

Nonetheless, the two ASQs (Ages and Stages Questionnaires) that our FRC (Family Resource Coordinator) here in WW (Walla Walla) (sorry, couldn’t resist) gave me to fill out for Matthew sat untouched on my counter for a couple weeks – there is still part of me that feels like it is unfair to “grade” the little guy comparing him to all other kids his same age.  What if I have to check “no, he’s not doing this yet.” over and over?  He’s doing so well considering everything he’s been through!  Can’t I just tell you how he’s doing? –  He’s excelling at motor skills, could use some help with speech/communication now.

As I filled out the 18-month ASQ, I was actually surprised by how many “yes” boxes I was able to check.  He aced it, scoring well into the “normal” range on everything except communication.  Way to go, Matthew!!  But . . . he’s 22 months old.  Some of the questions were hard to answer for him, though, such as:

“Does your child say eight or more words in addition to “Mama” and “Dada?”

Well, let’s see.  Matthew verbally says “papa,” “ba-ba” for bottle, “ah” for on, and “uh.”  How many words can we count for the sound “uh”?  He says “uh” very deliberately when he’s reaching for you and wants “up,” when something drops and he means “uh-oh,” and it also means “help,” and, of course, “I want!”

Does sign language count as “saying words?”  If so, we’ve got this one!  Matthew consistently signs “more,” “all-done,” “eat,” “drink,” “ball,” “bath,” “cold,” “on,” “bye-bye,” and has invented his own sign for “outside.”

Do other sounds besides words count?  For example, Matthew says “Mmmmmm,” which means, obviously,  “I like the way that tastes!”  And, in a house full of boys, there are a lot of sounds used to communicate that aren’t necessarily words . . . and Matthew is definitely picking up on that.  A ferocious roar might be heard at any time, meaning “Watch out!  Micah the dinosaur/tiger/crocodile/lion is about to attack!”  Matthew will echo back with a “Kkkkcccctttt!” meaning, “I’m playing, too!”  There are endless other “boy noises” while the two of them are playing together, but I’m not sure I can represent them here.  Communication – yes, but words – not really!

Next question:  Does your child say two or three words that represent different ideas together, such as “See dog,” “Mommy come home,” or “Kitty gone?

Hmmm – does signing “More drink” count?  Who could blame him, though – it was a Klicker Strawberry smoothie!

"Mmmmm!   More drink!"

"Mmmmm! More drink!"

On to the 20-month ASQ.  Now I’m starting to laugh:

Does your child use a turning motion with his had while trying to turn doorknobs?

Ha!  My tiny little guy is still a long way from reaching a doorknob, and even if he could, I would be strongly discouraging this!  I don’t WANT him to open doors by himself yet!  Besides, our new house has levers instead of knobs . . . To do:  find a way to baby-proof the levers before Matthew can reach them!

Someday I'll reach that, and then you'll really have to watch out!

Someday I'll reach that, and then you'll really have to watch out!

Can your child successfully feed himself with a spoon?

Well, that depends.  What percentage of food actually needs to be ingested in order to count the feeding session as “successful?”  We’re trying forks right now, and have found that to be easier for Matthew, as the food doesn’t fall off as easily when he hold up the utensil in triumph, or to show big brother what he’s eating, or decides to wave it around just for fun, or discovers that watermelon makes a pretty good crayon on his tray . . .

I like yogurt, but I don't know why Mommy usually has me eat it outside!

I like yogurt, but I don't know why Mommy usually has me eat it outside!

I also really like to be silly!

I also really like to be silly!

Matthew scored just mildly behind across the board on the 20-month ASQ.  Looking back through the questions, though, I realized that he was simply too small physically to accomplish some of things in the motor-skills questions.  Things like walking up stairs is more difficult if the stairs are still as high as your mid-thighs!  Most 20-month-olds are bigger and taller than my little 22-lb Matthew.

Our FRC here in Walla Walla was really wonderful at our meeting, though, and realized, just as every parent to has to fill these things out, that no child can truly be represented on paper, or summarized by a check-list of skills.  I’m really pleased with the way the EI services are set up here, though.  Instead of separating all the different categories of therapy – speech, physical, occupational, etc – and having different therapists/appointments for each one, they have EI teachers who specialize in all of the above for kiddos age birth to 3.  It makes more sense to me to have someone help with developmental skills in general, evaluating what he would benefit from and tailoring the therapy accordingly, combining aspects of speech and physical therapy in one session.  It is much easier logistically, too, to have one appointment schedule, and one consistent teacher that Matthew can get to know.

At these meetings, there is always a discussion of goals – What do we want to see Matthew doing 1 year from now?  Sometimes it’s difficult to say.  Our FRC in Yakima wanted very specific goals – what exact motor skills did we want to see him accomplish, such as how many steps did we want him to take?  How many words did we want him to be able to say?  I guess our goals for him are a little more vague, and our FRC here was very o.k. with that:

“It sound like you would like to see him communicating more, is that right?”

“Yes.”

“Do you have any other goals for him?”

“It would be nice if he would obey – stop when we say stop, come when we say come . . . that kind of thing.”

She smiled and said, “O.k.  We call that ‘following directions.'”

We left it at that.  1 year from now, we’d like to see Matthew communicating more, and “following directions.”