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.