Scrabble

This is just a memory for me. Joey is doing very well in school, but spelling is a real challenge for him. The school suggested playing word games like scrabble, boggle etc as one way to help him.

So we're on vacation (in the Blue Ridge Mtns of Georgia) and after Becca was in bed one night, Bill, Nani, Joey and I played a game of scrabble. It was the first time Joey had played. He and I both played our own turns, but I was his coach and gave him suggestions and showed him how to try to get the most points from his letters.

Joey did great (came in 3rd in front of Nani) and we all had fun. Anyway, at one point he asks, 'How do you spell narrator?' We all laughed because it was such a long word. And then later he asked us 'How do you spell autograph?' It turned out both times he did have most of the letters, although he wasn't actually able to find a way to play either word on the board.

He said later he had just looked at his letters and it made him think of those words. I was impressed.

This is a picture of Joey at Super Summer camp in June.

Talking God with Elmo

Becca (6) still asks to talk to her Elmo puppet (in the Clap Your Hands book) and the "Elmo's father" puppet (big Elmo puppet) sometimes.

So a couple days ago we got them out and "Elmo" noticed my new bead bracelet.   It was a thank you gift from a little boy Bobby in Becca's Sunday school class for being a helper.  Elmo asked what the cross charm was.  I told him it was to remind us of Jesus.

Elmo asked Becca who Jesus was, and she told him "Jesus loves us.  Jesus died." while gesturing up and down with her hands as in everybody knows this.  And I mentioned God too, and Becca said "Jesus walks with God".  In a very teacherly fashion.  I guess she did get something out of Sunday school :-)

Sometimes

We had friends over today for a playdate - my friends and Becca's friends.

The 4 kids have Down syndrome and are between the ages of 6 and 9. Us moms are generally upbeat with the occasional hair pulling moments. (Pulling our own hair out at wits end that is.)

We fed the kids lunch and then sent them off to play in Becca's room while we tried to have a relaxing lunch ourselves. Well, there was quite a bit of jumping up and down out of our seats to redirect or referee the kids.

We were talking about elopement (wandering). I told them how just that morning I had "lost" Becca for a few minutes. I was vacuuming in preparation for having guests. Normally I always have one ear listening for what Becca is up to, but I couln't hear her over the vacuum. When I turned the vacuum off I couldn't find Becca. After a few tense minutes I found her in the front seat of my car in the garage. She was pretending to drive and snacking on the goldfish we keep in the car.

The garage door was up, so luckily she hadn't gone out.

Back to telling the story at lunch. I'm tempted to get up (again) as I hear Becca raising her voice over something or other. But I don't. I take another bite of my sandwich, sigh, and tell my friends, sometimes I just have to eat. And sometimes I have to vacuum. They understand what I'm saying and what I'm asking.

Blink and there goes 2 more months

Where did 2+ months go...

• Joey had his annual hearing test and thank you God his hearing loss is stable for now
• Christmas parties at school
• Our once a year party having Bill's akido friends over
• Christmas
• My sister & her family visiting Gainesville twice
• We went on a big 4 day weekend trip with my mother in law to see snow in North Georgia, the first time the kids have seen snow!  First my husband and I have seen snow in approximately 20 years
• Becca went thru a period of making herself throw up at school.  It seems to be over, we hope.
• My Mom talked me into trying a 1 month free trial at the gym and now we have both joined.
• We've all been sick multiple times with colds, ugh.  And there was a nasty stomach bug over Christmas break, poor Joey was miserable on Christmas day.  And then he had strep.  
• Our dog Crocket, 13 1/2, died unexpectedly.  My husband and I are very sad, but the kids have handled it well.
• There have been several shooting deaths of US Marshals and other law enforcement officers while serving warrants in Florida.  Bill and his partner went down for the memorial service for two in St. Pete.
• Our local family Down syndrome support group had a big playdate/get together at a local preschool.  Ten families were present, a big turnout for us.
• I went with 3 mom friends from same group to a one day "Practical Solutions" conference on Down syndrome in Orlando.

Becca's starting to wake up, time to go.

How Do You Get There From Here

[I wrote this for the Disability Blog Carnival that Dave Hingsburger is hosting in December at Rolling Around in My Head.  The theme is 'dark nights of the soul and what gets you through them.']

Six and a half years ago, my husband and I got the news that our baby girl would be born with Down syndrome.  I've heard some parents say getting this news wasn't a big deal for them.  But it was huge for us.  I wept.  We were both in shock.

The worst moment for me was sitting alone at the kitchen table after getting off the phone with the geneticist.  My husband was at work and my two year old son was still asleep in his crib.  The geneticist had called to give me the results of the amnio.  She seemed like a perfectly nice human being, but once I had made it clear we were still going to have the baby, she didn't really have anything else to say to me.

I was reaching out, asking what now, where do we go, who do we talk to...  She gave me the rather unhelpful tip that there were probably support groups and I could check the yellow pages.  The yellow pages???  Getting off the phone with her I felt abandoned and at the bottom of a deep, dark hole.  I had to call my husband, I had to tell my family.  It seemed like nothing but pain in front of me.

But here is what brought me through the first few weeks:

• My husband - as scared and upset as he was, from the very beginning he believed and told me that everything was going to be OK

• Faith - Just minutes after we first found out our daughter might have Down syndrome, I was alone in an ultrasound exam room for a few minutes.  My mind was racing and I picked up a magazine off the top of a pile.  I flipped it open and read "For we walk by faith, not by sight."  2 Corinthians 5:7   I had flipped the magazine open to an entire page of quotes on 'The Joy of Faith.'  We gave our daughter the middle name Faith.  

• Grace - I few months earlier, during a morning prayer, the sentence "Hold my hand, we'll do this together" came into my mind.  I imagined myself holding Jesus' hand over my heart.  Being a not very good, lapsed Catholic, I rolled my eyes at myself and thought I must be crazy.  But later, after we got the news about Becca, I remembered and realized, oh, this is what God was talking about.

• Hope - One day I took my two year old son to the mall play area and saw a beautiful little girl with Down syndrome playing.  Seeing this laughing, playing, happy child, I could imagine my daughter too.

• Courage - I introduced myself (abruptly) to the girl's mother, saying "Your daughter is beautiful.  I've never met a little girl with Down syndrome before.  I'm going to have one too."  This was crazy courage for me, a shy introvert, especially back then.  It was also a desperate courage, I couldn't let the chance pass me by to connect with a real live mom.  She invited me to a playgroup for families with children with Down syndrome and I went to my first meeting while I was still pregnant with Becca.

• Strength - A friend sent me the book Choosing Naia by Mitchell Zuckoff.  Her card said simply 'Admiring your strength.'  I didn't feel strong, but the story of this family gave me a model of strength and courage to follow.

• Music - two of my favorites from that time:
• In You by Mercy Me
• Letters from Home by John Michael Montgomery. 
  

• Love and  Family - my second call, after calling my husband, was to my sister.  I knew I could count on her and my whole family and my husband's for their love and support.

And now it is six and a half years later.  It was very hard to write this.  Not because it is too painful to bring back these memories, but because they don't really make much sense to me anymore.  What was the big deal?  Becca was a baby, now she's a girl.  She's beautiful!  She's our daughter and we love her.  She has her strengths and she has her challenges.

I remember those early weeks, but my perspective is so different now.  In six years of loving Becca and becoming a part of the Down syndrome community, I've gone from the fear and grief of my daughter's diagnosis to embracing and finding joy in her life.

One day, while I was pregnant with Becca, I went to the library with my mother in law and my son.  At one point, while the two of them were occupied looking at books together, I snuck off on my own to look for ABC for You and Me.

It's a sweet rendition of the alphabet with pictures of children with Down syndrome and objects for the letters of the alphabet.  But when I first glanced through it I could hardly stand to hold it.  The faces and the smiles and the mannerisms confused and scared me.  I put it back up on the shelf like it was on fire.

And from there, I have arrived here.  Reece's Rainbow is an International Down Syndrome Orphan Ministry.  I read the blogs of families adopting and I pray for the little ones waiting for a family.  And I can hardly stand to tear my eyes away.  I see a little girl that looks like Becca and a little boy reminds me of her friend at school.  I don't see the differences, I see someone the same.  The same as my child whom I love so much.

There are whole countries, whole cultures, that hear the words Down syndrome or disability and imagine the same deep dark hole I was in.  And now that is what I despair over.  So I ask myself, what helped me climb out of the darkness and how can I help show someone else the way?

Becca Stories

1.  Becca was mad at me for taking something away from her tonight. I pulled her into my lap to give her a kiss and told her 'You're snuggly and I love you.' She pulls away and says 'I NOT snuggly! I NOT love you anymore!' I forced myself to act hurt and not burst out laughing, LOL.  (Becca is 6.)

2.  I've noticed Becca 'sneaking' around the kitchen.  Edging along a wall or under the counter and then peaking out to see if anyone sees her about to make a snack.  I was laughing and saying to Bill she looks like a little ninja.  In the middle of saying 'I don't know where she could have gotten the idea from'  - ping - lightbulb moment.  At school Becca has started wanting to walk to her 1st grade class by herself ("No Mommy!  Not you!")  I want to encourage her independence, but no way can I trust her on her own yet.  So I follow behind her, peeking around walls and corners.  Guess I'm not as subtle as I thought!!

Reading Comprehension

Question posted by someone on the Listen-Up email group:

I have a friend who has a child who is deaf, CI user, oral/does not sign much at all and in third grade.  Her child reads at grade level but the reading comprehension is at a first grade level.  They are considering holding back a year and Mom doesn't want that to happen. Any programs or ideas on how to work with reading comprehension with this child?

My thoughts:

Reading comprehension is a very broad term.  I would want to know where in the process the child is faltering.

You say the child can read on grade level.  What does that mean?  Recognizing words in a flash card environment?  Sounding out unfamiliar words?

My son is in 3rd grade, and darn some of the reading comprehension questions are really hard!  And subtle.

So how do you get from point A, verbalizing a word you see on a flash card, to point B, answering an inferential question, ie. infer from paragraph 3 Jack's true intention in hiding the pumpkin before his sister came home from school.

Any of these points could cause a 'failure' of comprehension:

Does not understand complex grammar

Does not understand possessive and/or plural s  (this is an issue for my son)

Lack of vocabulary

Test anxiety

Test taking skills

Poor phonics - if child mainly learns words as 'sight' words vs. being able to sound them out, school will only get harder as time goes on

Poor understanding of the parts of words (un- , pre-, -ed, etc)

Lack of time - some issues with any of the above and needs extra time to think it all thru and pull it together

I could go on, but you get the idea.

How is comprehension being tested?  Multiple choice?  Free hand writing?  Does child do better with one or the other?  ie.  If gets multiple choice questions right, maybe it is a language expression issue.

How is the child's speech?  Are they able to orally hear a story and then reply verbally with inferences and conclusions?  It may not be reading comprehension per se, but language comprehension.

And finally, plain old quantity of reading time - read to child, read with child, child read alone.  (You know, that it takes 10,000 hours to become a true master of a skill)  So for instance, a conservative estimate for a typical 8 year old (advantaged) child that has been read to or reading to himself a minimum of 30 min a day from birth.  That would put him at about 1500 hours of reading so far.  If the child you are talking about missed out on months, maybe years of reading before hearing loss was handled, may need lots of extra reading now to make it up.

Good luck