How you fit in your pants.

When Elise was little, she wore jammies and the most adorable bubble onsies.  I had to put socks on over her jammies, to keep her feet in the footies, because her trunk was pretty long, compared to her short little legs.  When it got cold, she wore yoga pants, with the tops turned down or capris.  It really wasn't too tricky.  I had to sew in her waist, cuff her pants, and tweak some of her stuff. 

I started learning how to tailor very low grade about 2 years ago.  Real tailors would probably be horrified.  I turned clothes inside out, and safety pinned the stuff that needed to go.  Then, VROOM, with my cheapie beloved sewing machine.  The folks who read the labels and bought blind in Goodwill have probably cursed me to multiple generations by now.

I gave up on buttons and snaps about a year and a half ago, because she simply HAD to learn to potty alone.  For two reasons, 1)  she needs to learn to independence and 2)  the more independent she is, the safer she'll be.  I can't help but think that the percentage of people with special needs who are sexually assaulted, would drop a bit, if they can take care of their own toileting.  Alone.

People with Down Syndrome are built a little different than typical folks.  They have different proportions than those that the clothing industry are producing for.  If Elise was more of a dress and tights kind of girls, this would not really be an issue.  But if you want slacks or jeans or shorts?  Well.  Lets just say things get difficult pretty early in. 

As I was whining about this, Ethan told me that I should start designing clothing for people with Downs.  About 6 years ago.  And again, 4 years ago.  And yeah...so on.

But a superb grandma beat me to the punch.  Karen Bowersox.  She started a really excellent company called Downs Designs.  She has made several designs and cuts and styles in expanding sizes...adults, kids, youth, and teen.  She's making jeans, shirts, and capris.  And recently, she has added a new line of jeans, NBZ Jeans, for men that are soft and stretchy with no fasteners.  Personally I think this is brilliant for people with autism, other sensory issues, and many other physical disabilities.  They can look more mainstream, without resorting to sweatpants, etc.  And again, can I emphasize the more independent a person is and appears to be can protect them from predators?

Downs Designs has above and away the most stellar PERSONAL customer services.  Karen, herself chatted with me after hours about sizing questions.  She employs Skype to help with sizing and fit support.  Really, above and beyond any company I have ever dealt with.

Sadly, even though I placed an obscenely massive order of different cuts and sizes, nothing fit Elise right.  So. I'm back to square one.

As far as jeans, I have gone to jeggings exclusively, the wider the elastic at the top, the more secure they are, and the less I get *ahem* plummers' issues.  Shorts have gotten exponentially more difficult.

Today, I wandered into a parallel universe on a whim.

Maternity pants wander between scary huge belly panels and wide elastic bands.  I have contemplated getting maternity pants, and putting my own waistbands on them, as they are already cut under the belly, with a very short rise.  (And she will never tuck in a shirt because it sends her over the edge more quickly than tights or bunchy socks.)Today I bought a pair of shorts with the wide elastic band, which was all silky soft.  And would you believe those bad boys fit her like a dream??  They stayed up, because the elastic helps hold them in place.  They didn't make her lose her mind, because the band is silky and doesn't bunch, wrinkle, or cut.  The bottom part is nice and stretchy and superbly flattering.  And NO fasteners!!!  She is cute and perfectly independent.

(please excuse the "dressing room" mess!)

Can I get a whoop, whoop??

In related news, she has managed to get her shoes and socks on alone since Tuesday.  She is cruising for awesome this week!!

In Our Shoes - What do you accept?

This may be a melancholy post for some.  But I am genuinely asking this question of those with older/adult children...


"At what point do you make peace with the idea that it's not 'going to be okay'...and that despite the highest of expectations and the most extraordinary educational opportunities, your child will not wow the world. At what point do you accept that your child will change you, and that's it?"

Elise will be 10 in a few short months.  As I mentioned HERE and HERE I expected and expected and expected....and I do not see the open field of opportunities that I had seen for my daughter when she was 2.  I just don't.

I was told after she finished treatment for her leukemia that there would probably be some mental retardation as a consequence of the chemo.  But when your child already has mental retardation thanks to a disability, there is no way of knowing what effect it had on her.

Plus, the range of IQ is huge in people with Down Syndrome.  There are high functioning people with it, and there are low functioning people with it.  And it all does not come down to their parents expectations and the opportunities given them...not all of it.

This question comes up because of several things...many, if not most, of the people I know with kids with Downs have little ones...they are under 5.  And they are still writing, arguing, and fighting the school system for opportunities that are limitless.  They are still following the Einstein Syndrome model and are still fighting the world at large for the same view of their baby.  And don't get me wrong, that is a good thing!  But there will come a day for all of us parents with kids with special needs (really, ALL parents, right??)  where you will have to take stock and meet your child where they are.

Also, I am seeing Elise shut out in our own home because she cannot play or communicate.  The little girls are playing house, dolls, concerts, dances, plays, and animals...and Elise can't.  She is becoming aware of this, I think.  She used to try harder.  Now she only attempts to join them 50% of the time....if that.  I encourage her and them to play things they can all play, but even mama cannot fix this one all the time.

The inability to communicate especially hit me this summer and Elise is now getting private speech therapy that is specifically targeting the social communication with peers.  I am pursuing a speech device, I have left whole hosts of messages with the specialist down at the hospital...and as each week passes, I question if they have any intention of calling me back.  It will be a big surprise when I show up on their doorstep if I don't hear back...don't think that won't happen, okay??

The depth of the lack of communication hit me pretty heavily last week.  Elise went to her beloved hippotherapy.  And had a kitten.  She took off her shoes, threw them at the therapists, let all the horses out of their stalls, and cried in the dirt.  At first I was in a state of utter disbelief...then when she volunteered to go home and take a nap, I realized that there was something else going on.  To make sure that it wasn't a well-organized attempt at escape from work (which I would never put past her!), we made her go back in for another 30 minutes and work on physical exercises.  She had to "be" the wheelbarrow to work her arms, and then she asked to do the climbing wall...something, she's wanted to do since they installed the wall...and she worked hard, in her crocs.  Which brought to mind a total nervous breakdown she had when she was 2 and it turned out her shoes were too small...Which caused me to be suspicious of her shoes.  So, on the way home, I took her by a couple of shoe stores.  Not surprisingly, she had outgrown her shoes.  She went to therapy in a size 13 and we bought a size 2 (for those of you who aren't properly impressed, that's 2 full sizes).  And lest you respond, "Well, brands vary..."  it was the same brand (there are only so many that fit her).

It brought me low.  My child cannot even tell me that her feet hurt.  That her shoes don't fit.

THIS article was shared with me this week.  And to be honest, it was a bit of a kick in the teeth.  Until I read it again.  The mother is discussing her preschool son.  I used to love reading articles like that one, and ones like THESE...  They inspired me.  Nowadays, they just remind me how very far from that Elise is...and as the years pass, I wonder if that will ever be her future.

Now, please hear me.  I am not giving up on my daughter.  I am not.  Everything may finally *click* and fall into place.  As everyone constantly assures me it will.  And I still want from her, her best.  But I also need to start being realistic.  She may not be "high functioning".  She may not be able to "change her stars".  She may not ever have the friendships and relationships I had hoped for her.  She may find solace in movies and petting her cat.  She may not be able to ever follow the rules in a game enough to play a typical sport.  She may never be able to attend a party without me playing interference.  She may never be able to stay home alone.  She may never hold a job that inspires the parents of children with disabilities with hope for their future.

And I need to be okay with that.  More than that, I need to glory in it.  This is a child that we have almost lost 3 times.  This is a child that we have fought for medically over and over and over just to have with us.  I have no personal space anymore.  She lives in it.  I have to beg to go to the restroom alone.  It is exhausting.  But she loves hard and rejoices brightly.  She has changed me in so many ways.  She has refurbished my life and my perspectives.  She does a happy dance over the littlest things.  And I do too, now.  And that needs to be enough.

Today's the Day. Think about it.

Today's the official day of "Spread the Word to End the Word."  You can read more about the movement here.
http://www.r-word.org/

I've posted how the word retardation actually comforted me in a odd way back at the beginning of our path with Elise, which you can read HERE.  And HERE are my thoughts last year.

I am afraid that I am yet more saddened by it's use this year....and more wistful in my plea.  I don't know if it will ever truly make me angry or cause me to get up in someone's face...although I have already been driven to calling out people in ways I never thought I would, due, in some manner, to Elise.

But this year, I am asking that you reconsider the ramifications of throwing the word "Retarded" around.

My daughter is not like yours.  My battles are not like yours.  My worries have taken on a life of their own. 

My nightmares are more simple now.  That my daughter will be taken advantage of.  That she will not be allowed to hold a job.  That all of the push toward euthanasia will include her.  That if we turn to more socialized healthcare, that her "quality of life" will be in question.  That she will never talk clearly enough to be understood.  That she will never be able to express her needs and wants.  That her physical limitations will prevent her from having fun experiences with the rest of the family.

When you allow the word retarded to roll off of your tongue, you trivialize all of Elise's struggles, all my fears, and you make me question our future.

Please remove the word "Retarded" from your vocabulary.  Please remove it from your children's.  Please protect my child from exclusion, please protect her future.  Please don't allow your immature vocabulary from your middle school years to wreak havoc on my child's and my present.

Thank you.

Haircuts- The Drama, The Trauma

I was given hair-cutting lessons, a pair of scissors, and a pair of clippers for my wedding shower from my mother-in-law. I have cut Ethan's hair since we were engaged. I've cut the kids' hair from the time of their first hair cut, with maybe 2 exceptions.

It has saved me a considerable amount of money. I never minded and while the midnight realization of needing a hair cut is enough to give you an anuerism, it is certainly more practical than trying to schedule a hair cut with Buffy the day of something important.

When I had daughters, I truly believed that my hair-cutting services would be needed much less than my son or husband and they would be virtually stress free. Wow, was I wrong.

My poor girls do not have the luscious locks required for the long, no cut, braided, DONE hair. They ALL have Dandelion Hair, which results in me keeping their hair shorter than I would like to. Charlotte is still baby wiggly, so it takes a little longer to trim her bangs than it will in a couple of years. Amelia wants to see what I'm doing as I do it, with demands and requests as I'm cutting it, but she sits pretty still.

Elise asks that I cut her hair. She knows that it makes me brushing her hair in the morning better for her. However, Elise growls, spits, and thrashes as I cut. Stressful doesn't begin to cover the nausea that a haircut creates. She has a lot of sensory defensiveness and the feel of her hair being tight and then all of a sudden loose against the scissors and her scalp makes her crazy. As she thrashes, the hair that is cut fluffs out into the room, gets on her skin, and she sniffs it up her nose...did I mention that she has sensory issues?? To cut her hair, I have to use hair cutting scissors. You know they are pointy and stuff, right?? I live in desperate fear that I will cut her, poke her, or stab her somehow in these hair sessions. I have thought about taking her to a salon for a hair cut. I'm betting that they wouldn't finish the job,though, and that no amount of money would make them do it.

SO, I do it. I do it because one day every couple of months makes the morning drama of hair-brushing a little easier and the twice weekly hair washing shorter and there is less gnashing of teeth, and less wailing.

But, boy, what I wouldn't give to have safety scissors for cutting her hair!!!!!

31 for 21: #31 Tricks and Treats

We enjoyed Halloween tonight. Gabriel was too old to trick-or-treat this year and got to be an "adult" and helped to supervise his sisters...he went as a biker dude in tattoos and my Sturgis T-shirt. Amelia went as Tinkerbell. Charlotte went as a Squirt the Turtle from "Finding Nemo". Elise went as a Cat/Wolf...depending on the moment you asked...very fuzzy and white with a tail and no ears. She apparently relied on sound effects. She was happy...that's all that matters, right?

I am stealing shamelessly from a bloggy friend. She has done this for the last several years, and it was so cool, I am copy-cat-ing. :) She lists 21 factoids about her son and it is like a personal snap-shot for each year. 21 for the 21st chromosomal set that determines Down Syndrome.

This is my first "21 things about Elise":
1) Elise LOVES wolves, sharks, and pigs!! Charlotte's Web, 3 Little Pigs and the Big Bad Wolf, you name it!
2) She could live on sandwiches. Turkey on Wheat or PB&J for breakfast, lunch, and dinner.
3) Elise likes to sleep "upside down" in her bed. Her head at the foot end.
4) Elise demands that she have her Care Bears lined up on either side of her pillow. If they are not lined up in the proper order, she will switch them up or she can't sleep.
5) She loves "How to Train Your Dragon", "Ratatouille", "Wallace and Gromit: The Curse of the Were Rabbit", and "Toy Story".
6) Elise loves stripes and wants to look like "Where's Waldo" every day.
7) She loves computer games and her Leapster.
8) Elise has only just started playing independently and it involves Playmobil toys. And she will happily play for hours. She loves playing with the wild animals in the barn. Which I find funny!
9) She always wants you to read but will only sit long enough for about half of whatever you were going to read. Whether the book is 10 pages or 60 pages...
10) She hates shoes and socks and takes them off the second you start the car or pull out into traffic.
11) She has funny little duck feet. Her feet have narrow heels and a very wide ball of her foot resulting feet the shape of triangles. I love seeing her wet foot prints...and so does she, she walks in circles watching her own footprints.
12) She has only just gotten brave enough to get in the pool with arm floaties on...and two times at the very end of the summer she allowed them to actually float her.
13) Elise is Tweedle-Dee to Charlotte's Tweedle-Dum
14) Elise calls her two favorite "shadows" (the people who watch her at church and make sure she doesn't run away) "Booby and Mook". They are otherwise known as Shelby and Brooke, and them being called that never ceases to amuse me.
15) Elise hates having her hair brushed and likes her hair cut short.
16) She will growl and spit and do a little lock-kneed, goose-step march jump if you try and make her do something she doesn't want to do. There are some days I would like to try it. :)
17) She thinks the IHOP commercial where the trick-or-treat-ers get pancakes and syrup in their bags, is fall-down-on-the-floor hilarious.
18) Elise loves pizza, but won't eat anything on it but cheese. (And won't eat cheese on sandwiches.) She is going through a stage where she wants the pizza cut up and to eat it with a fork.
19) Elise LOVES to mix and cook and look at recipe books! But refuses to eat any of it.
20) She loves microphones and will do just about anything to talk into one!
21) She sucks her thumb when she is tired, upset, or stressed. She likes to pet your cheek or eyelashes if she can sit close enough. And it is probably why she has enough room in her mouth for her teeth...so her dentist is not terribly committed to encouraging her to stop sucking yet, unlike 4 years ago...now he credits her with spreading her own palate...so she gets to buy a little more time...and I am thankful for it for her!

I look forward to seeing how she grows and changes! I can't wait to look back over a few years of these lists!!! Happy October!!!

31 for 21: #30 Simple Words

Sometimes I feel like I live my entire life in some sort of Word-Association game.

We went to a friend's house for a Halloween/football game party last night. We got the the neighborhood and Elise starts asking about "Chips?" Because every time we go to this friend's house, there are chips and dip.

When we have to go to a doctor, there are a lot of one word and sound effect questions, "Beep, beep?", "Ouch?", "Ahhh! and ear?", "Teeth?" Each question is an association to a particular doctor.

If I say we are going somewhere, she starts in on where she'd like to go: "School?", "Books?", "Eat?", "Play?", "Hit ball?" and so on...

Every movie we watch has a particular one word description, every game, toy, or activity does as well.

They are trying to get her to use phrases at school. And when she goes out of her way to use as many words to request something as she can, I really try to say yes, so she decides to makes the association that more words get a more positive result. Sometimes I can't say yes, but I try to.

However, the longer I live with Elise and am subjected to her 20 questions, the more concisely I think. And the more simplistically I am pleased. Sometimes simple is honest. Sometimes simple is best.

"Simple" used to be a term used for people with milder mental disabilities. And after the last 8 years of my life being boiled down to simple and uncomplicated, I don't think that is a negative or misuse of the word. In fact, I wouldn't mind it be a description for myself.

Simple::Pure

Not all bad, huh? :)

31 for 21: #29 Live Action

Sorry I didn't post on Friday, but we had to jump through our hats to get to Chattanooga and see Disney Princesses on Ice.

My very-best-friend-for-a-million-years moved this summer 2 hours north of Chattanooga and made the spread between us 4 hours... Growing up makes friendships complicated sometimes. She is one of 3 friends that moved away in a 4 month period. For the record, nobody else is allowed to move. Seriously. Or it's going to feel like I'm the one who moved.

But, I digress, as usual.

She called a few weeks back and asked if me if I wanted to take all our girls to see Disney Princesses on Ice. Her husband could get a discount. Oh, yeah! She called back later offering to give Elise her ticket as her birthday present...which I said yes to, if she liked it. :)

So, after another awful Elise-afternoon (I'm beginning to wonder if we should write half-days into her IEP...) I threw myself out of the car-line on Friday and proceeded to get hung up on every single possible traffic slow-down.

We got there a smidge late, but in time for all the good stuff. We got there in time for Aladdin, which is one of Elise's favorites...but even Aladdin could not assuage the fear of going down the open stairs of an arena...so, we are there late, and Elise is doing a wail/growl thing as she inches down the stairs to our VERY good seats....only a few dirty looks... As soon as we find our seats, Elise is promptly spell-bound by the lights and music, the stairs forgotten. After every single program featuring a princess, Elise would turn to me enraptured and plead "More? or home?" She was thrilled EVERY time I promised more to come.

Elise LOVES baseball, basketball, and hockey. I find myself wondering if she loves the sports or the venue. She loves the live action stuff. She loves to cheer. She stood after every program and clapped and cheered and "woot, WOOT"-ed.

Rather than take out a home-loan for concessions and memorabilia, I snuck in Princess Polly Pockets and Goldfish..which they received at the intermission...and after the trip to the bathroom, up and down the stairs and apparently freaky sinks in the bathrooms, everybody deserved a prize for being associated with us!! I am thankful I went with a friend as loyal as family and I didn't fly solo.

After the intermission, the final program was the entire story of Cinderella. Complete with the mice and magic. Elise was utterly enchanted and captivated. She gasped and was bewitched at every turn.

I am, personally, not sure if I was more beguiled by the show or Elise's pleasure. I expected Amelia to be thrilled, for her little heart to be filled with all the princesses and magic, but I didn't know what to expect from Elise.

Disney proved why they are a power to be reckoned with, once again. And why their name is synonymous with magic.

31 for 21: #21 Homework

Elise loves homework. LOVES it! She wants to do hers, she wants to do her brother's, she wants to make her sisters do school....she is depressed when it is Saturday and she can't go. Sunday School at church helps bridge the gap until she can get her fix.

Gabriel is disinclined to do his homework. He is disinclined to do his classwork. We are having a bit of a battle right now. Now, this is not to say that it is a shock. He is in 7th grade. I don't know a soul who didn't try to get away with a little something in middle school. But it has always been a little bit of a tussle to get him to do his work. The funny thing is, his teachers write "He is such a sweet boy. He just needs to pay attention"..."focus on his work"...."turn in____." So I guess I should be thankful that the laziness is not going hand in hand with a snarly attitude.

Elise, however, gets "She works SO hard in class! She loves the computer! If only she would keep her hands to herself." She comes home begging for TV, but she can be derailed if you offer homework. She asks if she can watch "Rat Cook" (Ratatouille), if you say "No" she'll pitch a mini fit. If you say "No, but you can do math", she'll come with out a murmur, sometimes even a "yay!"

I wish all my kids had her work ethic. She will sneak windex and try and clean the kitchen. She'll return to a project that interests her constantly until it is complete.

I have been approached by several people suggesting that I should pursue the ADHD diagnosis and consider medication. That perhaps an easy fix to her impulsivity would help her keep her hands to herself. Occasionally, I think about it. On a particularly "red" behavior week, I think how nice it would be to not battle this. I would happily allow her to drink Coke, but she doesn't like it. I encourage chocolate...the caffiene that make most people a little strung out, mellows her...it has the opposite effect on her as it does on most people. (Benedryll is like giving her Speed. It does NOT make her drowsy.) Which is a arm-chair confirmation of the diagnosis of the ADHD. On really bad days I push the caffiene. But I drag my feet on the diagnosis. I don't want her on meds. They still don't know the long term effect many of these drugs will have, we are still on their first generation. We certainly don't know the impact on kids with Downs. Their systems are so fragile, that any negative would be compounded. And I really don't want to risk losing her passion for everything! She is so awed and excited by life. And there is no substitute for Love of Life. No pill that can replace that if it is lost.

So, we continue to pursue behavior modification. And get excited by every social improvement we see.

School continues to be a reward on the behavior scale. She is SO proud to show me her returned assignments. She is thrilled to demonstrate counting or telling me information that she learned. I believe that as she gets older, she will continue grow scholastically, and being allowed to attend school will act as a giant behavior modification, and we will continue to see massive growth in that area. She is so socially driven. (Her father's daughter!)

She is reading simple sentence books.

Here is a video I made last night.
I am SO proud of my girl!!








She is growing physically like a weed and mentally by leaps and bounds...I don't know if her new teacher has more of a handle on what drives her, or if this year is a culmination "click" year. But I couldn't be more impressed with Elise's gains. My hope grows with each returned work packet and book read.

And chocolate is good for you anyway, right?

31 for 21: #20 Clarifications

In writing the last 2 entries, I neglected those of you who don't really know me.

I am a freaky, verging on obsessive, mother. While I have never been a freaky germ person (barring the time Elise was on Chemo and the following year while her white blood cell count was low), I am very aware of my kids and their safety. In case any of you lovely people were considering calling DFCS, the post on Elise's opportunistic abilities was an illustration of her abounding abilities and stick-to-it-iveness in the face of her IQ...every time she does something, I am forced to try to "proof" it.

This is tricky, because her abilities have her advanced enough that if you "Elise Proof It" then you have "You Proofed It", too. I currently have 3 gates up, twist-ties up on two cabinets, a zip-loc on the fridge, 6 barrel bolt locks, we installed a key lock in the front door, we are considering installing another 3 barrel bolts or 2 key locks...We wall-mounted our TV to protect it. I have locked all the doors inside the house and carried hair pins to let myself in for months...this hacks Ethan off, but he also doesn't like his stuff broken or carried off or dropped off the porch railing (oh, yes. the voice of experience again). She has broken 4 toilet locks, 5 "safety pin locks", and ripped screwed in locks out of the wall. If I don't want her watching TV, then I have to unscrew the cable co-ax cable.

I just wanted you to know that her antics and their consequences are not for lack of preventative measures. It is just that the part of your brain that tells you that something is a bad idea is not mature in Elise, yet. And she is super impulsive. (The pediatrician is considering a secondary ADHD diagnosis, too.) I watch her like a hawk, but I can't be "On" 24/7, and this fact scares me. I pray. A lot.

I also have notified all the neighbors of her penchants and how to get a hold of me and which house is ours. Thankfully, she tends to visit the same people. She finds someone she likes and revisits...so we have regular spots to check...

I have also bought a Brickhouse Child Locator for times when we are allowing more experiments in personal freedom.

And on the entry subject of grooming and clothing choices, we are not discussing naughty child, I-don't-like-that-so-I-won't-wear-it, fits...we're talking sensory processing/defensiveness issues. So, that is a whole other barrel of monkeys. This is one of the additional benefits of her Hippotherapy. We see a significant impact on these behaviors and see a difference in her behaviors when we miss a week. (I do have a lot of sympathy for this, as I have struggled with it myself for years, too.)

With the sensory "stuff", she also pets things and people. And while it can make you nuts if she's petting your eyebrows or eyelashes while you are trying to watch TV, it really is sweet. You feel very loved. So there are perks. :)

I just wanted you to know that I have not thrown up my hands and said, "I just can't do anything." It's just that there are a lot of outside factors that need to be figured in. We continuously try new things and constantly make sure that she is cared for physically and encourage her independence...while keeping her as safe as we can. Honest.

31 for 21: #19 Searching for Pants, Sam I Am!

Elise does not like to be bathed. She does not like to get her hair wet. She does not like to take a shower. She does not like to be scrubbed. She does not like to be baby wiped. She does not like to have her hair brushed. She does not like to have her hair put into pony-tails. She does not like tooth brushes. She does not like tooth paste.

In short, she does not like to be groomed.

She does not like to change her clothes. She does not like shoes. She does not like socks with terry cloth loops inside. She does not like flip flops. She does not like to walk in bare feet outside. She does not like to walk on grit on hard-wood floors. She does not like certain fleeces. She does not like velcro. She does not like sweaters. She does not like tights. She does not like panties that are too loose. She does not like panties that are too tight. She does not like hats. She does not like cuffs on shirts. She does not like the internal adjustable elastics in the waist band of her pants. She does not like belts. She does not like pants that are too long. She does not like her pant legs rolled up. She does not like buttons. She does not like turtle necks. She does not like skirts. She does not like leggings. She does not like what you must wear, She does not like them here or there, She does not like them, Sam I Am...

In short, finding clothes that she likes to wear is holy you-know-what.

Seriously, I hate season change because we have to go through all her clothes to see what fits. And then there is a whole 'nother issue to see what she is willing to wear of those that fit...After a few weeks into this science experiment money is no object if we could get dressed without a fit.

Right now Elise likes stripes and Gabriel's hand-me-down t-shirts. And a pair of Nike tennis shoes that won't fit for more than another month...they may really be too small now. (Which precludes half of her socks.) Pants? Um, we are still looking for some that don't drive her to spitting and keening...

I admit to letting her sleep in whatever shirt she will wear the next day. I have been known to wait on brushing her hair until she is in her car seat and can't get away. I am paying her off for putting on her pants, shoes, and brushing her teeth with movies on my iPod....and who knows what new lows I will have to stoop to. I like to think that this area of life will get better with better communication skills. When she can tell me why she likes particular items of clothing so that we can duplicate them, it will certainly open our options...

Once she is clean, she is charming and beautiful. Once she is in clothes and on to the activities of the day, she is great fun.

But if she could be washed and dressed in her sleep, it would make things easier. Much, MUCH easier.

And that's all I have to say about that. :)

31 for 21: #18 Smarts

This society wants their kids to the be the smartest and the best. The comparisons start early. We want our kids in the "best" daycares and preschools. We watch their grades like hawks. We push them to do their best at T-ball and high school football. We all but over load them in extra curricular activities from the time they can talk and walk. We test their IQ's and make them do flashcards over the summer.

There are some people in this world that have IQ's that are sky high, gifted beyond gifted, that barely function in society. Their intelligence alone affords them full rides to colleges and graduate schools, they however have no commonplace abilities that allow them opportunities in the day-to-day. They have difficulty making friends and they have difficulty holding jobs because their brains are living at a different plane from their bodies. They are often unhappy and wander through life searching for someone who understands them.

There are people whose IQ's are so low that society is horrified that their parents chose to have them, because they cannot possibly have a good quality of life. And yet these same people work multiple jobs, have TONS of friends, and love their life. The world is their oyster because they make the most of their opportunities. They make friends because they see the best in others and want to understand them!

How badly are we mis-judging others? Who really has the best quality of life, here?

Elise has a scary low IQ at present. (Like she should be sitting in the corner staring at nothing.) She is virtually non-verbal on the testing scale, and this skews her results. We had to get a psychological evaluation for a secondary insurance, but I declined to allow the results to be evaluated for her IEP (Individualized Education Plan). These are the kind of numbers that a licensed professional would look at and tell me that my child will have a terrible quality of life and no opportunities.

In real life, however, Elise has a concrete understanding of opportunities unlike anyone I have ever met. She utilizes her time in a way that puts her siblings to shame. She can actively plan as she goes to get maximum results.

For example, I can go the the bathroom and she will utilize those five minutes to get a chair, bring it over to the pantry, get in the door lock, scale the shelves to get her favorite box of crackers, pour it into a cup, put everything back, and snarf down the crackers. The only evidence of this activity being her Wheat Thin-y breath, a random cup with crumbs at the bottom, and a pantry door that is ajar.

I can take a shower and she will get out of the house (we have since put up bolts at the top of the doors), break into the neighbor's house, steal several Frisbees, play with their dog, feed it the loaf of bread she took over, come back in the house, load up a DVD of her choice, change the TV input feed, and push play...with the only evidence the empty bread bag in their yard and the not-our-Frisbees in the magazine rack. (Oh, and lest you think I indulge in long showers, I can shower and dress in less than 10 minutes.)

Elise ate all the leftover desserts from our Stew and Pumpkins Party last night, because I was putting away our laundry and told her to wait 15 minutes til I could make supper. And by all, I mean all. She ate 3 mini cupcakes, with a spoon and a plate. And probably 6 pumpkin sugar cookies with sprinkles. (It makes me absolutely sick to think about eating that much sugar on an empty stomach.) This was done with her brother and sister in the adjoining room, so it must have been done silently, as well, or they would have stopped it, or gotten in on the raid. Opportunistic, doesn't begin to give it the recognition it deserves.

She is not one to miss opportunities. I am confident that this will extend to her future. She can't help but succeed...and surprise anyone who looks at numbers alone.

She likes to dress up in wraps and scarves and tell me that she is a "surprise". Yup, that's pretty much it in a nutshell. As usual, she knows what she's talking about.

Garden of Eagan: A message for new parents

Garden of Eagan: A message for new parents

VERY cool!!! Take a peek!!

31 for 21: #13 She Won't Be Able To

Besides the fact that my doctor who delivered her was such a downer about Elise's birth, he was also the first to tell me she "wouldn't be able to" breast-feed. And he was followed by, what felt like, the entire dadgum hospital. Every single nurse (except Gayle) and the lactation consultant(!) and the pediatrician and the doctor who checked us out so we could leave...EVERY SINGLE ONE told me that babies with Down Syndrome have lots of problems breast-feeding and that she wouldn't be able to, and would I like a bottle of formula?

Me being me, was irked by someone telling me she couldn't without giving it a try...and with each progressive negative, I wanted even more to be able to nurse my baby. When the lactation consultant came in and told me that she really probably wouldn't be able to, I was totally fed up with it, and told her that of all people she should really TRY to be more supportive. She patted my arm like I was crazy and handed me a pamphlet and wished me "the best".

The theory is that babies with Downs tend to have a low roof of their mouth and an over large tongue, which they tend to push out. The low muscle tone that they struggle with also affects the coordination and power to suck. Add in a general sleepiness, in Elise's case, and on paper it looks like a death knell, apparently.

Well, the pediatrician was surprised that Elise was still nursing at the first week check up, and I told him that other than having to be jiggled awake to remember to eat, she was doing really well. She really didn't like having her feet messed with, so I tapped the bottoms of her feet the entire time I nursed her...she wasn't gaining weight in a hurry, so they congratulated me in feeding her and suggested supplementation and sent me home with yet another formula sample.

She continued to not gain weight even though she nursed constantly. (The formula stayed in the cabinet.) Within 2 months, she was diagnosed to be in Cardiac Failure. She had holes in her heart (ASD and VSD) and we discovered with the open heart surgery that her mitral valve was also malformed. During the month between the cardiac failure diagnosis and the surgery, she needed more calories to live. Her heart was working SO hard to pump that ALL her caloric intake was going just for her heart to function, there was none left over for growing. So her doctor told me to supplement and get her to eat even more. We ended up mixing preemie formula and CORN OIL (per a nutritionist!) into pumped breast milk and literally pouring it down her throat with a syringe. During this time both her pediatrician and her cardiologist told me to go ahead and give up, that she would probably end up on a feeding tube of some kind and may struggle with nursing after all this. So I might want to consider giving up and save myself all the trouble. And again, this irritated me to no end...so I stuck it out again, figuring that she at least deserved to try after the surgery.

She was given breast milk in her feeding tube post surgery and her tummy did brilliantly...I nursed there at the hospital, tubes and all and she had no troubles getting back into the swing of things to the surprise of the nurses...and we went home with no feeding tube.

Ultimately, Elise happily nursed until she abruptly self-weaned at 16 months. Just a couple of weeks before she was diagnosed with leukemia. In retrospect, I would have liked to retry nursing her when she was refusing to eat anything, but with the lack of support, I had no idea to ask about if she could start back up...I learned recently, that we could have, but with her biting issues on steroids, it may have been God saving me from a miserable situation...

I am killing two birds with one stone this morning. I am writing this for a Le Leche League consultant who wanted to address how babies with special needs still can nurse successfully. Too often those in the support positions are not educated with the success that can be had despite how it looks on paper. I also wanted to encourage those who are reading this blog who are expecting and new parents who are searching for answers. Sometimes all that is needed is a little dose of stubbornness. If you are willing to stick it out a little bit longer than is easy, the pay-offs can be big. This is only the first of many things where you will have to plug on despite the medical community. Following your gut can be 50% (or more) of parenting...God hardwired mommies to fight for their babies and daddies to protect their wives and children...so do it. Don't fight the urge. He did it for a reason.

31 for 21: #8 Rat Cook!

Elise loves to cook. (She was making brownies in the picture in the banner, can you see her joy?) I cannot take my eyes from her when I am cooking supper or she will step in as soon as my back is turned and mix or flip or pre-heat the oven.

She can crack eggs, she can mix, she can add ingredients and LOVES to do so. She pores over Southern Living and cookbooks...oohing and ahhing and smacking her lips...

This wouldn't be so odd if you didn't know that she doesn't like to eat...unless we are talking crackers. Really, if there is not bread or pasta or crackers then supper is a knock down drag out. She will oogle stew in a book, but if you mix up said stew, forget about her even trying it. It is the strangest thing!!!

We chalked up the eating thing to chemo for a long time (the chemicals that are administered can cause a long term effect on how things taste)...and it probably still figures in a little...and she still has a fair bit of sensory defensiveness, but the scope of what she will not eat is mind blowing. We are lucky that V-8 put out V-8 Fusion and that she will choke down pears and green beans other-wise we would probably be dealing in malnutrition. We have to sit on her to take vitamins...like I said, malnutrition.

Her favorite movie is Ratatouille. For those that don't know, the whole thing is about a rat who cooks and dreams of being a chef. Promptly following a rather obsessive period, she pre-heated the oven to cook some microwave popcorn. Whole house smelled like burning crayons. It took some considerable time to get the melted plastic wrap off the bottom of the oven and shelves. We DID find the oven lock mechanism shortly after this incident, THANK GOD!!!!

Maybe she will eventually eat some of her handiwork...and become a world famous chef, just like her hero, Remy the Rat.

31 for 21: #7 The Future

This is a way cool video! Watch it if you have a minute!

It is a nice segway into what I was going to write about today...

Will I ever be an empty nester? I don't know.

I like to think so. When I get to see things like this, I am very encouraged. I hope so.

The older Elise gets...the more I wonder. When she was little, we really had no jumping off place, so I did my research, and for every person with Down Syndrome that lives at home forever, there is one that lives independently, with jobs and friends and responsibilities...it was exciting...and hopeful...

As the years pass...and she is just about 8 years old, operating on a 3 to 4 year old level, with a 2 to 3 year old speech ability...and less than a year's improvement, in a year's time (this year's IEP showed only 8 months in most areas and only 4 months in several, and they say that it will continue to slow over the next few years.) I just don't know. We have several friends who have kids with Downs right around Elise's age and they will sit and pay attention...or can walk independently through the parking lot...or can talk at a higher level...and I wonder...

I know that one of the side-effects of one of the drugs used in her chemotherapy protocol was some mental retardation...but as we have no base-line, we will never know how that figures in.

I have not given up hope. I am planning for Elise to have a measure of independence, no matter what. Even if she lives at home, we are planning for an apartment in the basement for her...and a job, even if I have to drive her to barns to scoop poop and curry horses or veternary clinics to brush dogs or Kroger to bag or childcares to scrub babies...or whatever...I have confidence that she will dream dreams and I will do my best to get her to them or as close as possible...

The current life expectancy of people with Down Syndrome is 55 years. I find myself hoping that if she has limited independence, that I out-live her. I don't want to have to ask my other kids to take on that responsibility...if she is very high functioning and personally independent, I will consider my prayers answered and will have a considerable weight lifted from my worries...

Gabriel, Amelia, and Charlotte are care-takers in personality. I don't know how much of this is because of loving and living with Elise, I don't know how much is an innate gift from God. I am thankful to see this, because I know that they would willingly step up, if it comes to that...

Elise loves to do things for herself and we have gone out of our way to make sure that she has opportunities and will continue to do so.

She adores to cook. She loves to read. She likes to feed the dog. She can set the table and clear it...and very few forks get thrown away...She lives with enthusiasm.

I am determined not to lose hope...and look forward to the day that I can tell her to "have a good day at work!"

National Day of Encouragement

I just read about this on a friend's blog and then, me being me, confirmed it on Wikipedia and checked out the day's history on their own site. So, according to my homework,

HAPPY DAY OF ENCOURAGEMENT!!

I'll be honest, I probably would have run with it regardless...just because it is a really cool idea. I like it almost as much as the Victorian May Day, where they put flowers on people's doorsteps...the sweet equivalent of ringing the doorbell and running...I've always wanted to do that one...someday I will. It's on my bucket list. Seriously.

ANYWAY! As I've mentioned before, one of the primary goals of this blog was encouragement, the other being education. So, I'm going to run with it today.

The mind-blowing synopsis it this "You Are Not Alone!"

First and most importantly, God is a Loving Father (even if your earthly father wasn't, He Is!) And has promised, "I will never leave you or forsake you." In those specific words, twice in fact, in Deuteronomy and Hebrews. And in Psalm 34:4 David even gave a personal testimony that He "sought the Lord, and He answered me; He delivered me from all of my fears!"

Second of all, I have said before that parenting is not easy. I don't care if you have typical kids or kids with "stuff". It is NEVER goes according to what you had planned in your head before you got there. In fact, I am going to go one better, LIFE will not go the way you had planned. And, I'd just like to say, that is probably best. I am doing a Beth Moore Bible study of Esther and there is a phrase that is used in the Hebrew that sets up a story in a grand way that always "introduce impending catastrophe or doom". I dare you to pick a moment in the Bible where there is a catastrophe and where the final conclusion is not so amazing makes your idea of happily-ever-after look paltry.

Now, I'm hopefully far from the conclusion in my own life, but at every juncture where I seriously don't think I'll ever be able to lift my head from the weight, the mini-conclusions have me dancing more happily than I thought possible. Even over tiny stuff. I have a sneaking suspicion, it will only get better.

Our responsibility in this is to find people to help you with your burden and help them with theirs. If everyone's weight is lighter, AND you have a friend, then you have a mini-party right there!

I believe that we, as a society, and even more as a "Special Needs" community, tend to closet ourselves from each other when we struggle. When things are not okay we have difficulty reaching out.

Those whose life feels like it is imploding from pain and pressure don't want to reach out. We feel like it will take too much energy, that we don't have enough to spare. Those on the outside, who seem to be getting along pretty well, don't want to "interfere", "complicate", "rub their face in 'normal'", or "bother" those who desperately need the phone call, the visit, the cup of coffee, the written note, the prayer. This in turn causes those who are drowning to feel even more isolated and depressed, which makes the struggle even more exhausting.

Take it from me, even if you feel awkward, the phone call helps. Even if you write the same note as 10 other people and the same as you wrote last week, it is encouraging. I have an entire under-bed storage box of notes from when Elise was on Chemo. My kids will have to throw it out when I die, because I Cannot.throw.them.away. And I didn't have any idea who wrote more than half of them.

I dare you to reach out for someone this week. Encourage someone. Whether this is easy or not. It will bless someone. Even if things are going rough with you, you will not feel so isolated. Email me if something happens that is cool. Email me if things are so dark with you, that you seriously can't reach out...and I will make sure that YOU get the note that you desperately need!

Dark is dark, and a candle is SO MUCH LIGHTER, and someday, It Will Dawn. I promise.