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???

When Glasses are a Bigger Deal than Down Syndrome

Last Friday Bill and I took Becca for an eye doctor appointment.  This was a long and unpleasant ordeal, but the end of the story is that she has a prescription for glasses.  She is far sighted.

So that night, Joey asks me, in all (whiny) seriousness, "Mom, why do I have to have a geeky sister that has to wear glasses?"  On the inside, I'm ROFL, thinking, um, hello?  Have you noticed the bright green hearing aids in your own ears or the fact that your sister has Down syndrome? 

But those things are just normal in his life.  Heaven forbid glasses!  What will people think??

Anyway, I couldn't say that to him.  I just told him matter of factly that Becca needs glasses to see better, that lots of people wear them, and it's not that big a deal.

Funny Stories

About 2 weeks ago, my son was getting butterflies in his stomach before school started each morning.  To lighten things up, we started a game of telling each other funny stories while we walk the school 'track' for morning mile.  Funny along the lines of funny to an 8 year old and 6 year old - What if we swam morning mile instead of running?  And there were fish in the pool!  What if someone thought school was a zoo because of the noise and dropped off a load of monkeys?

Becca, my 6 year old daughter with Down syndrome, has amazed me by picking up on this game.  While we are getting ready in the morning, she will ask 'Running?  Funny stories?'

Then while we walk the track and talk and laugh, she will say 'My turn! My turn!'

Today she told two stories.

First - "A bear ate my pillow!  HA HA HA!"

Then, when it was her turn again, "A dinosaur and a gorilla ate my animals!" (with a theatric gasp)

This is a huge feat of speech, language, and creativity on her part.  It's a moment and an accomplishment I want to remember!

Tantrums

 I wrote this as a response to another mom on our local email group about her 3 year old son with Down syndrome starting to have terrible tantrums.

Yikes.

Well, we didn't go thru exactly this, but I'll share some thoughts anyway.

Becca went thru a challenging stage at 3 where she was physically aggressive - hitting kids over the heads with drumsticks comes to mind, and some biting.  It eventually passed and 2 years later when she entered kindergarten I wasn't worried about it.  Anyway, it started the same time she finally started walking, and we think there was a connection.

Random thought #1 - everything takes longer with DS - walking, talking, potty training, going thru stages including tantrums.

Random thought #2 - developmental delays include developmental stages like tantrums.  I remember talking to Becca's teachers about her still hitting when she was 4.  So instead of the terrible 2's, it might be the terrible 3's (or 4's).

Random though #3 - Like with any kid and new behavior issues, has anything else changed in his life?  Did he just start walking?  Are you working on potty training?  Any family changes - moving, divorce, change of schedule?  It's summer time, so is he no longer in the same school setting he was in before?

Random thought #4 - How is he currently communicating other than tantrums?  Is he speaking at all?  One word?  Two words?  Does he sign?  If he has had a mental growth spurt with new thoughts/feelings of independence, but is unable to communicate at the new level he may be really frustrated.  For example maybe before he was happy to eat whatever you gave him, but now he wants the chocolate ice cream specifically instead of vanilla.  If he has no way to communicate 'chocolate'...

Random thought #5 - He has you wrapped around his little finger.  (maybe)  But whether he does or not, you always have a choice.  You have to take a deep (really really deep) breath and recognize that doing what is best for your child is more important than meeting other people's expectations and reducing your own embarrassment.  Every time he gets what he wants because of a tantrum, you have dug the hole deeper.  When you are trying to get out of a hole, stop digging.

Random thought #6 - Positive reinforcement for good behavior & practicing alternative communication.  The antidote to #5.  Find times, however minuscule, where he reacts in an appropriate way and totally praise him over the top.  Try to make more of those moments possible (is he best behaved at Grandma's house?  At the park?  Go there and praise him every opportunity you get)  What words and/or signs does he need to be able to communicate better?

Random thought #7 - Stop drop flop is definitely a DS thing.  Still dealing with that here and it's not easy with a 50 lb child.  Licking is definitely a DS thing.  Praise God, Becca is over that.

Random thought #8 - Sensory issues.  Christian, Denise's son, needs extra gross motor stimulation - think bear hugs and jumping up and down hard.  I'm not an expert on this, but you could ask the PT or OT about it.

Random thought #9 - "It's not me, it's her"  This is my mantra as I go thru the ordeal that is brushing Becca's hair every morning.  I used to get really overwhelmed and angry every morning.  After some introspection, I realized I was frustrated at my inability to control the situation or make it better.  Realized I can only control me and I'm doing the best I can.  She screams, I talk softly and we get thru it.

Good luck, eventually this too shall pass, hang in there!

Teeth Grinding

A comment I left on A Home for Darya.

My 6 year old birth daughter with Down syndrome goes thru periods of teeth grinding. She has gone thru these cycles ever since she had enough teeth to grind together. It will start out occasional, then build up to a point where I think I'm going to lose my mind. And then one day I'll realize she has totally stopped.

Her speech therapist has said it could be related to wanting oral stimulation. I wonder if it's related to her teeth coming in/oral development since it's cyclical. Anyway, she's old enough now that we can tell her 'make your teeth quiet' and she'll stop for a minute or two anyway.

Also, for better or worse, we've let her keep using a pacifier at night time to fall asleep. We've come very close to making her give it up, but then change our minds. Because when she's in one of those non-stop grinding modes, it's the only thing to give US any relief.

Found my forgotten blog!

I went to comment on someone else's blog, and my id that came up linked to this blog. I had completely forgotten about it(!)

Boy does it take me back!!

I may try and make some entries again, just for the laughs of coming back and reading them years from now. And an article at Techcrunch has me thinking.

Update:  I've been backfilling from journal entries and things I've written elsewhere.  When I wrote this entry, I hadn't posted since 2008.

Becca's Logical Leaps

Becca, my 5 3/4 year old daughter, has had a little 'thinking explosion' recently.  Kind of like when both kids had language explosions at various times.  (Becca has Down syndrome)

Story #1
Last Saturday I took her to Pierce's birthday party at Sun Country.  He's one of her kindergarten classmates, and most of the class was there.  Becca had fun and especially enjoyed the ball pit.  At the very end, the Sun Country helpers were calling for the kids from the bday party to line up.  All the other kids came running, but Becca didn't want to get out of the ball pit.  I called to her, the other kids called to her.  I started to take my shoes off to go in after her, but changed my mind.  She's almost 50 pounds now, and it's really hard for me to try and forcefully carry her.  And I didn't want to make a scene in front of her friends.

So I told the group to go on ahead, we'd be there in a minute.  Then the negotiations began.  I told Becca it was time to go, that she would be getting a balloon.  Not interested.  I told her it was time to go back to Nani's to pick up Joey.  She asked "My turn see Nani?"  I told her yes, she would get to see Nani.  "Mommy Joey?" she asked.  I laughed.  That was the logical leap.  Yes, I told her.  I would take Joey and she could stay at Nani's by herself!  Then she crawled out of the ball pit on her own.

Story #2
Becca has a little fixation on Christian's older brother Spencer.  So when we were getting out of the car one day at home, Becca starts in on "Spencer my house?"  No, I told her, Spencer is a big kid.  He plays with big kids.  Becca is a little kid.  You play with little kids. 

Becca thinks about this.  Then she asks "Courtney little kid?"  Yes, I tell her, Courtney is a little kid.  Then Becca proclaims happily, "Courtney come my house!"  LOL.  What an adorable imp!

Joey learned to ride his bike!

Mimi and Papa Bob are away at Pelican Inlet this week.  I picked up both the kids from school today and we went to check out the newly re-opened Possum Creek Park.  Now it has a skate board area.

Then I took Becca to Uncle Bill's and Joey and I came home for a few hours.  I told him I wanted to have him practice on his bike.  He said he thought today was the day.  I said then so did I!

At first I had him pushing along the curb on his bigger bike.  Not much success.  We went back to the driveway, I wanted to show him how to glide without putting his feet on the pedals, so I got on his big bike.  Then I said why don't you go get your small (red) bike and we can both try.

That did it!  He said, Mom let me try, I think I can do it.  So I let him be while I rode around the driveway some.  Sure enough, within a few minutes he rode out into the cul de sac!!!!

I dropped the bike I was on and ran out screaming 'Joey you did it!' and gave him a big hug :-)

We went around the cul de sac together (each on a bike) a few times.  He's still wobbly, catches and stops himself by putting his feet down, starts best with the momentum of going down and off the driveway.

In the end, I think what gave him the final motivating push is that his younger cousin Natalie (4) is learning to ride a two wheeler.  Joey is 7, turning 8 this month.

Anyway, Joey is ecstatic!  I'm ecstatic!  It was a good, good day.  He called Nani, Daddy, and Mimi & Papa Bob to tell them all the great news.