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.

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!!

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.

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!

4 Trips to the Ladies Room at Red Lobster

I decided it's time to give full potty training another concerted attempt. I pulled out the little notebook I've used in the past where I keep track of times & results. The last 'full out' attempt was over Spring break in April.

Becca (4 today!, with Down syndrome) has been living a dual life since then- kind of potty trained, but not really. She can go on the potty, and if you put her on at the right moment she will. But she won't generally tell us when she needs to go. So she is still in pull ups and we've tried to catch her at the right moment as often as possible.

So I went into full 'Joy Joy Joy' overdrive mode today. There's an old Dave Barry column on toilet training his daughter. Every one in their house is happy! So very happy! You need to go pee pee? Yay! Let's run to the potty! It's so fun to sit on the potty! Let's read a book! You went on the potty! Hurray! Let's put a sticker in your book! Joy Joy Joy!

Got out the stickers, got out the big girl pants, got out the plastic over pants, paid attention to what she ate and drank and when. Took her to the potty. And again. Dry pants. Clean pants. Try again. The morning was discouraging. But there was a turn for the better in the afternoon!

At 12:40, Becca walked into the bathroom as I was walking out. I told her "Mommy had to pee pee!" (Remember, Joy! Joy! Joy!) and she said "Becca too." Well whad'ya know. I put her on the potty and she went. She only had wet pants one more time today.

We went out to dinner at Red Lobster. I put her in pull ups. Right after we sat down, she signed and said 'Potty.' So I ran her to the potty. But she leaned too far forward at one point and the durn thing auto flushed and scared the bejeezes out of her. So no glory. Back to the table. 3 more times we did this. She was still dry, she'd tell us she had to go, I'd take her to the ladies room, but she was too scared to actually relax and go. She stayed dry the whole time. She was even still dry when we got home! I ran her to her own potty and she went! I am so proud of her!!

Is this it? Is it really going to happen this time??? Time will tell!

This was a 1% day

Actually, yesterday and today were 1% days. My daughter Becca has Down syndrome. She is a joy. She's an imp. She's turning 4 tomorrow! But, the private preschool she has been attending for two years doesn't want her anymore. There's lots of ways to sugar coat it. Lots of ways to look at it logically and reasonably. But it hurts like hell and I've been crying and not feeling terribly inclined to be rational.

I read an article on Pinwheels yesterday that just resonated. Most of the time it's pretty easy to just enjoy my beautiful daughter, to laugh with her and celebrate her successes. But then there are those moments... As if someone just can't let it go, and wants to make sure you do realize your child is not normal after all. (what's the tone I'm looking for? Huffy, snorting thru their nose)

I had approached the school director and the 3's teacher on the playground. I said I wanted feedback on how Becca had done that summer. (You know how you practice these conversations in your head, looking for the best possible opening) And yes, I did want to know where they stood on letting her continue in the fall. But I also really was interested in how she had done. Was she washing her hands at the kid sink by herself? Was she playing as nicely with the other kids inside as I'd seen her play on the playground? Things any mother might want to know. But I never got any of those answers.

All they wanted to tell me was that she kept trying to 'escape' and that they couldn't give her the attention she requires. Which may well be true. And I don't want her in an unsafe escapable environment any more than they do! But they found a knife to twist around just to make sure I dropped the subject and left them alone to their normal lives. I said I wanted to find out how Becca was progressing. And (using aforementioned huffy voice) the director told me "Well, she's progressing for Becca."

Maybe no one else will understand how much that hurt. How she's progressing for her is how I always try to look at milestones. It was so wonderful when she started eating solid food at 2 1/2. The whole family (and her teacher from the previous year) were all thrilled when she started walking at 3.

The director's comment, and her tone especially, just said "It doesn't matter what she can do, or that she can do more every day. The fact is she'll never measure up."

And I think I've been in a tailspin ever since because that sentiment "is that last 1% - the feelings that I keep buried and hold secret, sometimes even from myself. That 1% is like the sun. It hurts too much to look too closely at it, and I know that if I look at it too long, it could blind me in the amazing way that I now view life."

Oh, and one more thing...

What to call a blog... What to call a blog...

There is a cute email story that gets passed around from time to time. It's along the lines of - a mother looks at her watch and says to herself, "It's time for bed." So she gets up, cleans the kitchen, makes lunches, preps backpacks, puts the dog out, throws in a load of laundry, etc, and finally goes to bed. And the punch line being, a father looks at his watch and says "It's time for bed" and lo and behold goes to bed!

So first, this title is what the mother keeps saying to herself.

And then as I thought about it, it is also what life keeps telling us each day. Surprise! Don't get too comfortable! There's more!

The biggest shock I've had in my young (37 yo!) life was finding out my yet unborn daughter had Down syndrome. She's almost 4 now and doing very well, thank you. But boy was that an adjustment for my husband and me. Now, she has her challenges, but she is such a blessing of joy and happiness in our lives.

More recently, just 6 days ago, we found out our 6 yo son has permanent, moderate hearing loss in one ear. Hopefully, as the doctor predicts, this will be a mere inconvenience for him in his life. God willing. But it was definitely 'oh, and one more thing' in my life. Follow up tests, monitoring to make sure the loss isn't worsening. Talking to his school, what if any changes will be needed in his classroom.

I think bedtime just got a smidge further away!