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

What Not To Do - My Version

I read a What Not To Do list by Melanie Wilson and liked the idea.  So here's my list thus far.

• Have cream cheese and chips in my house or possession at the same time
• Make brownies or fudge unless I am OK with eating it all myself
• Organize our weekend plans counting on having my husband participate.  (He gets called away too often)  There should always be a mom-only backup plan.
• Speak (or type) in anger.  Wait.  Breathe.
• Average less than 7 hours of sleep a night.
• Think that there is only one right thing to do or one right way.  A parent delights in seeing their child's drawing, and doesn't have some preconceived notion of the perfect result.  Thus it is with God and our lives.

My Life is Good Too!

I have a T-shirt with a cartoon of a man and dog running, with the words "Life is Good!"

I wore it yesterday and Becca, 6, was checking it out.  "What this say Mommy?" she asked me, pointing to the words.  I told her.  And I said "Because life is good and Daddy gave it to me to make me happy."  She laughed, that tickled her funny bone I guess.  She stood up straight, pointed to her chest as if she were wearing the shirt, and says "My life is good too!" with a big grin.  It sure is!

(Picture added from Halloween)

Baby Snoopy

I'm throwing out an old mini diaper bag.  It's one Bill had carried in his car for emergencies.  I found it in the garage from the last time he'd cleaned his Xterra out.  Still packed with size 6 pullups and size 4 clothes for Becca.

The "baby snoopy" theme on the bag brings back memories - of a time of wonder being pregnant with Joey.  After 4 years of infertility, it was amazing to think we were actually going to have a baby.  I liked the baby snoopy items because it was blue for a boy, and because our dog Crocket was a beagle.  It was the first 'theme' I saw and liked and gosh that decision was the easy part :-)

When I was looking at the bag today, and the picture, I thought, was that time real?  After the hard years of infertility, and before the hard realities of real parenthood - Joey's gag reflex and constant throwing up, Down syndrome, hearing loss. 

Venting - Haircuts

ARGH Becca's hair is is is is is such a pain!  She hates having her hair cut.  Last time we took her for a cut the hair dresser she's always gone to had changed salons.  So we went to the new salon.  I told the woman to just trim Becca's bangs, thinking that was enough to attempt on the first visit to the new location.

Well, that left the back 'long' for her and getting longer every day.  And the longer it gets, the more tangles every morning.  After I wrenched my hand a few weeks ago trying to get Becca to stand still and brush her hair at the same time, even the morning hair brushing became a 3 person affair - we go in and wake up Daddy.  He holds her still and I spray on detangle spray and brush as gently as I can.  While she yells and cries and THRASHES back and forth.

I finally couldn't take it anymore, and what would we do when Bill was finally called out on an early assignment and it was just me and Becca?  So anyway took her for a cut today.  And it was awful.  Awful.  And this stupid new place (JC Penney's) is bigger.  And very busy.  With a full house audience for the show.  Not that anyone said anything, but still.

Yelling, screaming, crying, thrashing.  Daddy holding her hands, me holding her face still.  She doesn't cry the whole time.  She and Daddy were giggling and talking nose to nose part of the time.  But even when she's not crying, she's still not really 'still'.  At least her hair is short now.  Very short.  And her bangs are really really short.  I can't blame Andrea the hair dresser, she did the best she could.  But poor Becca is scalped.  Just in time for pictures this week.  ARGH.  argh argh argh.

What have I done wrong??  Becca gets her teeth brushed just fine.  She even lets me floss her teeth!  She drinks her own medicine now!  She lets me put drops in her ears!!  Why can't we get past this hair thing???