31 for 21: Shaun the Sheep

This girl likes her obscure, impossible-to-find costumes.  And yet, I ALWAYS am willing to sacrifice sanity to make sure she gets what she wants.  Mostly because Halloween is so very awesome to her.  Partly, because with her sensory issues, it's a moral victory that she is willing to put on a costume of any kind and so I am always particularly willing to make sure it is a comfortable experience.

The last 3 years in particular, she has made specific requests.  She wanted to be a wolf/cat 2 years ago; Shrek/Fiona last year; and this year, Shaun the Sheep. 

Shaun is her VERY favorite movie star.  We have watched waaaay too many hours of Shaun.  And there is no dialogue.  None.  Everything is inferred.  And as we have discussed previously, Elise is the master of physical comedy and body language...she laughs uproariously the entirety of every episode, regardless of how many times we have watched it.

What?  You don't know who Shaun the Sheep is?  If you don't, you need to.  Because he's FANTASTICALLY awesome.  Even if your kids are asleep.

She even left her hat on this year for the whole time she was out trick-or-treating.  A first.  The things we get excited about!  :)

31 for 21: King of Fools or Gesture of Affection?

I used to enjoy all the stories of young people with disabilities that were crowned homecoming kings and queens...over the last few months I started fighting with my inner sceptical pessimist...

 

Jessica Giddons of Lakeside (read her story HERE)

Are these young people getting honored or scorned?

I know some very intelligent young people and hurting "fringe" kids that are terrorized by self-appointed queen bees and whatever the equivalent male bully crowned prince is called.  They are strong, thoughtful people who know who they are.  They are not treated with respect.  They are not even left in peace, many times...  I know there are many young people with special needs that are bullied by teachers, paraprofessionals, and other students, because they can get away with it.

And yet, then I see these supposedly heartwarming stories of whole high schools that vote in peers with special needs in the honor courts and even to King or Queen of Homecoming.  Are they voted to these positions because of their magnetic personalities that manage to brighten the days around them?  I have no difficulty believing that my child and many others like her could impress her peers with her contagious joy.  Are they voted to these positions because the school craves the publicity for some reason?  Are they voted in because it is "cool" to like "kids like Becky on Glee"?  Because it was her dream on a show, are the fans extrapolating?  Are they voted in as a mass humiliation, like The Hunchback of Notre Dame, as the King of Fools?

I truly hate that I am questioning this...I wish my thoughts did not go there...but they do...

And I don't even know the answer....

But I know what I hope it is...I hope, that despite their own dark moments in the abyss of high school, that young people, for whatever the trigger, are doing it from genuine affection...And whatever their reasoning, I hope that their hearts and perspectives on disabilities are touched and expanded from seeing pure unadulterated joy...

31 for 21: Sharing

Much of this world views Down Syndrome as ugly, scary, and a broken-ness to be avoided. 

The doctor that delivered Elise told us with an apology and a cracking voice that our beautiful, pixie-sized daughter had Downs.  He followed this up with a comment that will forever be burned into my heart, that "there are many people out there who are willing to adopt babies like that."

When I went back to work, I sweet-talked the administration of the school that I was working at to do research on kids with Down Syndrome, their abilities, learning tendencies, and their future prognoses, as a teacher inservice credit. Ten years ago, for the most part, the information was very outdated.  The pictures were of tragically low persons in institutions.  The general future outlook was grim.  There were very few newer resources that were more positive.  You had to look very hard to find them.  The Einstein Syndrome was a strikingly fresh new look at Down Syndrome.  For the best resources, you were far better off calling your local Down Syndrome Association and talking to parents of older kids than actually reading the easiest to come by books.

I was getting more and more angry as I read.  I was frustrated at being told that my daughter had no boundless hope.  I was furious that at a measly 5 and 1/2 pounds she was literally having her future taken from her.  I was spoiling for a fight within 2 months.  I was a smoldering ash waiting for a dry forest opportunity.

When somehow, I stumbled onto "Down Syndrome Calendar".  I opened the page, and Band of Angels poured a balm over my very soul.

 

Their Beautiful Faces calendar and the Common Threads book, healed me and gave me hope.  They helped me give grace to those who clung to the darker outlook.  The gorgeous photos showed me that I was not alone thinking that my daughter was beautiful, despite the obvious features that the world told me spelled grief.  The triumphant stories in Common Threads gave me the confidence to go forward with the strongest of anticipation of a happy life.

 

 

 

I will be forever thankful for that web detour.  It gave me the peace I was craving. 

 

I share Common Threads with every new parent, and every pregnant woman that is told they have a high likelihood to have a child with Downs who is pressured into further testing.  I push it like a drug.  Because in a world that treasures brilliance and perfection, there is something magical on the 3rd chromosome in the 21st pair.  Sometimes I pity those who miss out.  I am being honest.  It is a great perspective to have.  Everyone should want a child with Downs.  I mean it.

 

If you have not seen this book, buy it.  Borrow it.  Read it.  Change your perspective.  Grow.  Be jealous of me...!  :) 

 

Band of Angels was started by a woman, Cynthia Kidder, who wanted to share the story of her son.  And to bring into focus "the discrepancy between the life that was predicted for Jordan and the life he actually lives".

 

Never underestimate the value of sharing your story.  You never know who needs to hear it.

31 for 21: Language.

In the special needs circles, I tend to be the oddity as far as my politics.  I am exceedingly conservative.  For now, that means I am a republican.  I am not, however, married to a party; nor do I feel the need to protect those of my political leanings when they make stupid choices.

Ann Coulter, for example.  I respect her, as a woman.  She is well-educated.  She has worked hard to get where she is in the political eye.  She is *usually* thoughtful and well-spoken, even if she tends to be harsh, and self-admittedly biased.  Which is her right.

Which brings us to this last firestorm.  After her tweet after Romney and Obama's third debate, "I highly approve of Romney's decision to be kind and gentle to the retard", she managed to completely discredit herself.  She has managed to be offensive and abrasive in her response to the public outcry of her word choice, involving the ever mature and lovely, "screw them".

Frankly, she cannot be surprised, as she has chosen to use the word before and received hugely negative feedback.  Rather than use other words that would be less hurtful and offensive, and certainly more indicative of her intelligence and education; she has chosen to defend it citing:

 

"Look, no one would refer to a Down Syndrome child, someone with an actual mental handicap, by saying ‘retard.’ Where do you think the words ‘imbecile,’ ‘idiot,’ ‘moron,’ ‘cretin’ come from? These were all technical terms at one time. ‘Retard’ had been used colloquially to just mean ‘loser’ for 30 years,” Coulter insisted. “But no, no — these aggressive victims have to come out and tell you what words to use.”

 

Now, I am not a giant fan of the word police.  As a matter of fact, I prefer out-dated words, with a soft and caring heart, than politically correct vocabulary with a scornful, distasteful, indifferent treatment of my child.  But, Ms. Coulter has managed to use hurtful language and to disregard the special needs community's hurt by this word.  Not only that, she has continued to use the word in an ugly and offensive manner like a child that has been reprimanded for something they knew better than to do.

 

I do not agree with  John Franklin Stephens' politics, but he made such an excellent point, without calling her hateful names, taking pot-shots, or even using edgy language.  He made his point with thoughtful, insightful, poignant language.  He found that in making his point in a gentle manner, which comes across FAR more educated than Ms. Coulter, he met with people's hearts that don't even agree with him politically.  Which is something that she should maybe take pointers on?

 

Please read this entire open letter, via the Special Olympics' blog, to Ann Coulter.  HERE

 

Frankly, I think that he said everything that needs to be said.  I just wanted to make sure that everyone's seen it.

 



31 for 21: 2012 Snapshot

This is an idea that I stole an idea from a friend and I'm revisiting it yet again this year...

My friend over at Sunflower Stories posted 21 facts about her boy...and has for several years...and I loved it so much I decided to do the same every year, whether or not I did the 31 for 21 again!!

HERE is our first and THIS is last year's!

And for this year:

1) Elise is in love with wolves, dinosaurs, dragons, horses, and sheep this year.

2) Her favorite movies and shows this year are:  Shrek, Ratatouille, Up, Shaun the Sheep, Wallace and Gromit, Mr. Bean, and anything involving a non-current holiday (we have watched Scared Shrek-less at least weekly since last November 2nd)...she still prefers shows that rely on physical expression and comedy rather than dialogue...She is on pins and needles for Brave to come out!

3)  Her cracker habit has been decimated...and therefore requests chips or crackers are for dessert nowadays.  She will occasionally ask for sandwich meat or hummus with chips for snacks, rather than simply caving in when her preferred is turned down.

4) She still folds herself up to sleep in a ball...and cannot sleep in a room alone.  There MUST be a sister or parent in it.  She springs up like a jack-in-the-box if you try to sneak out.

5)  Unlike last year, where she required her babies to be lined up in a line along the edges of her bed, she has kicked them all out.  Not one single doll or stuffed animal is allowed in her bed.  They have their own, separate bed in the corner.  And the quilt MUST cover every corner of the mattress or she will follow you out to the hall pleading...

6)  She loves to pet Simon, our rash decision cat.  Petting him is very calming and soothing to her.  He moves slowly, so he does not freak her out like our dog, who she has become SUPER patient and loving with.  She has not attempted to hit or kick him at all the year.  SO proud of that!!

7) Elise is playing more independently more often. Her dolls get to have adventures...but they refuse to have tea in plastic.  They will only suffer good china.  She loves to play with her plastic animal horde. They have families, friends, and often have conversations and trips now!  Although, her favorite part is still sorting and matching.

 

(I was in no way consulted or involved in this tea party.  In fact, I believed this tea set to be safe from her.)

8) She can read simple sentences on her own. Her independence is growing with her vocabulary.  She will actually do homework this year.  In previous years, she was completely tapped out and exhausted by the time she got home from school.

9)  She still enjoys to "read" books without pictures. She pores over them, enchanted with the idea of words and their potential.  And still basks in recipe books...and still refuses to eat them.

10)  She will listen to books being read.  In their entirety.  I know this sounds silly.  But she used to listen to a page, and then close the book on your fingers and jump to another one.

11) This year Elise independently paddles about in the pool!! She spent the entire summer enjoying swimming in her life-jacket, but you HAD to stay within a couple of feet from her.  But now, she will paddle up and down the length of the pool, using her arms and kicking.  Up until 2 summers ago there was screaming and she terrorized the whole pool...now she begs for it.  In fact, I am crediting it with a smidgeon of the weight she's lost.

12) She still despises to have her hair brushed. 

13)  She would submit to violent torture over a shower.  I almost got myself turned into DFCS because of a misjudgement in choosing to shower off the girls after a swim at the YMCA.

14) She still loves to cook. She adores Asian, Indian, and is branching out in textures.  And LOVES to be included in the making or planning of supper.  And will happily sort and put away silverware out of the dish washer.

15)  Pizza is the food of the gods.  Manna directly from heaven.  As a matter of fact, she named a baby doll after it. 

(This is "Baby Pizza")

 

16)  She was assessed crazy low on last year's psychological evaluation and IQ test, but still enjoys very sophisticated humor and could plan her escape from Alcatraz, and so I have decided to trash those numbers from my head.

17) Elise has taken to writing "notes" and "stories" in notebooks.  It's all scribbley, but she can usually tell you the same story several times when she is presented with the pictures and words.  So they must make sense to her.

18) She will still do her angry goose step and lizard tongue, if she is not pleased about something.  But I believe growling and similar verbal expressions are taking precedence (heading in the right direction!). 

19)  She no longer kisses friends and usually won't hug strangers. But we are still striving to curb hugs in favor of more verbal options

 

20)  We have pursued more sign language.  In September, we went outside the school system for Speech Therapy...and have a "date" with the Assistive Communications Technology in November, to see if there are any more options that we should consider to help her express herself more.

 

21) She is cutting back on thumb-sucking, and I feel like the petting of my eye-lashes is getting worse.  But she is beginning to save such persecution for those she loves.  :)

 

My girlie is growing up!!! Love her to death!!!

31 for 21: Birthday Photo Collage

My mother-in-law, the photo hound of the family, put together this fantastic collage for Elise's birthday, and so I decided to swipe this as yesterday's post...  :)

Some of her best!!  Isn't she gorgeous?!?! 

Proud mama, what can I say?  :)

31 for 21: Happy 10th Birthday!!

I am not sure I can top myself from last year.  Please go read LAST YEAR'S post!!

This year Elise is 10.  I am an odd duck.  I know this and am okay with this.  But this year, I appear to be hung up on the number itself. 

10 is a nice number.  It is the base of all other numbers.  It is a measure of completeness.  It is an even number in which every portion of it has a match.  It is how life is blocked off.  In almost all areas.  Money, culture, sports, stars, music, science, language, even in the Bible.

As a simple description, it is perfection.  "She is a '10'!"  When a baby is born, we refer to "10 fingers and 10 toes" as a measure that they are beyond what was expected and the parents are enchanted.

Not to down-play my other kids AT ALL, but Elise is my "10".  She is a base in my world that adjusts everything else around her.  This is not to say the world revolves around her, but she has altered my perception, my reality, the depth of the world around us.  She has made me appreciate things I would have otherwise missed, in the day-to-day, in her siblings, in my family, in the spiritual world that swirls around us all.  She has changed my awareness of the fragility of life.  She has brought to consciousness the beauty of imperfection and the opportunities in it.  She has allowed me to embrace the idea that not being enough, is a good thing, in that I rely more heavily on others and in God Himself, and it is an exhilarating thing.  When you encourage God to fill in the holes of your deficiency, the good becomes exquisite.  The transcendence of the spiritual world over my expectations fills me in ways that I did not even know to ask for...

We regularly ask God to "get us through things".  We ask friends to pray us through dark times.  We rarely ask God to transform our lives and perspectives.  We never ask for enough.  In the Bible, we are told to over and over.  In the Bible, we are told that we MUST strive for more than we are.  And we are rarely bold enough to ask for it.

Romans 8:37-39
"³⁷ No, in all these things we are more than conquerors through him who loved us. ³⁸ For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, ³⁹ neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord."

Can you not hear it?  We are more than eeking through life.  We are more even than conquerors!  We are bound to God such that we CANNOT be broken from him.

Want to know something cool?  Count the things that were listed that cannot separate us.  It's 10.  Yep.  He used the base number, the measure of all things, to tell us that we are bigger than life.  We are tied to eternity.

I have shared this bit of trivia before.  But I read somewhere that the term "touched in the head" (defined as crazy or not all there) was based on the puritanical belief that the imperfect came as a protection. That those who were not whole had been touched by God without the "veil" drawn between...and the consequence was a barrier between them and everybody else. We could not comprehend God in all his glory and the intimacy would overwhelm us...so those who could and had, were kept separate from others by a disability...There are many days that I absolutely believe that! Elise sees God more purely than the rest of us....but maybe she was put here, just to help us see past the veil.

God has used Elise to break my expectations of life over and over again.  She is my base 10.  She reminds me daily that I am tied to eternity.  She draws life past expectations.  She draws life past boundaries.  She has 10 fingers and 10 toes.  She enchants me.

She is 10 today, and somehow this is her perfect number, because she is "10" in all the ways you can use it.

Happy Birthday, my sweet girl!  Thank you for the perspective you brought with you.  We would never have seen life for what it was without you.

31 for 21: Better Than It Looks: Time

Article of Evidence #8, I've got more time.

Well, sort of.  I probably have less time in my day than I used to, but...

Tomorrow is Elise's 10th birthday.  Ethan told her to enjoy her "last day of being 9 today"...and we both laughed...and I said the usual, "Can you believe she is going into the double digits?" And we got to talking...yes, I am hyer-aware of how old she is.  She has packed a lot of living and stress into these last 10 years. 

We are much more aware of every single milestone she has had the privilege of hitting.  We had to fight for every single one.  Not one has been on time for our Elise.

Most kids, you expect for them to hit milestones, and get a little worried if they don't...by days or weeks...we fight tooth-and-nail for them by YEARS.

With typical kids, you find yourself, 3 years later, realizing that you really rushed your kids through growing up and "it went way too fast."  I find myself more than a little bit thankful for the awareness of the importance of the milestones... I am not cavalier with Elise's development, or even my subsequent kids...I have become increasingly thankful for each and every one that is hit...

I am really serious.  It is an interesting place of awareness to live.  And I kinda like it.

31 for 21: Better Than It Looks: Support

Article of Evidence #7...and you thought I'd lost count and forgotten!!

I have access to AMAZING support networks.

As the mother of a typical child first, I know that there are groups around town that you can choose to get plugged into.  There is, of course, family and long-standing friends that would come to your aid in a pinch...but for all out network that you know that you can call in the troops and EVERY MAN OF THEM WILL COME RUNNING?  Yeah, us cool kids have got that in spades.

I love the 31 for 21 blogoshpere because the veteran mamas will come out and post religiously...and I take obsessive notes... 

Last year, I was driven by friends' circumstances, to do a bit of research on sexual abuse and kids with special needs.  What I found was nauseating.  You can read it HERE.

I was pushed by that information to start limiting and structuring Elise's emotional/affectionate displays.  As a protection. 

The problem is, that Elise is still fairly non-verbal, and it is absolutely in her affection hierarchy to hug close friends.  We did put a total (successful!) kibosh on allowing her to kiss anyone but family.  But I'd allowed friend hugs to continue.  I was still somewhat at a loss to how to stop it completely, as it is in her emotional repertoire...and, I'll be honest, as a Southerner, it's heavily in most people's friendship greeting repertoires... so it's a really grey area...

She is also heavily physical in her displays of ALL emotions...AND I struggle because she craves sensory input, and asks for "heavy hugs" regularly as a calming device...

This year, a friend of mine posted a blog entry that has brought it all up in my mind again...and I needed to throw that out there for your thoughts and safety and also to ask for input...how to allow for affection without putting her at risk...  HERE is her post. 

Truthfully, the safety factor is pretty clear.  But I am also somewhat worried about hurting her spirit, too...  It's a nasty, fine line...  Even if you argue that you can allow it with close friends, the statistics are clear in that 30%-60% of sexual assault occurs within close friend/family circles...

Can you ever protect as much as you need to and want to?  *sigh*

Pray hard.  And don't dismiss the paranoia.

I'm thankful for urges to protect my child and to deliberately think about ways to protect.

31 for 21: Better Than It Looks: Toys

Last night's/This morning's post also brought to mind another "we have it better than the Typs" post...

Toys are a long term investment. 

They are therapy, for fine motor, gross motor, speech, and sensory.  They provide input and help us put forth social mores.  With toys we can probe their understandings and allow practice for proper interaction.  We can learn more about their problem areas, we can learn more of their fears.  We can reinforce the behaviors we desire to see more of and discourage those we don't.  Some of us take it even further than most and make PECS (Picture Exchange Communications Systems) of varying degrees, social examples, and more.

Because their developmental levels tend to stay in holding patterns for longer, the toys don't tend to pass from interest as quickly.  I'll grant you, that there is usually a longer learning curve, that we end up having to teach PLAY, itself, but once learned, that toy stays in rotation for longer.

Elise, in particular, tends to fixate on social interactions on movies.  To exclusion of toys, sometimes.  But this birthday, I tried to offer toys suggestions and movies, in balance, to those asking for gift ideas...and I am thrilled to tell you, that the toys were the first things to be ripped from their packaging this year.  Not so, previously.

She still prefers matching/thematic toys that can be sorted and made into "families" that "match".  But the plastic families of dinosaurs are trying out more social interchanges without my input.  I know it sounds funny that I have had to teach this to an almost ten year old, but it has been a long road of significant effort.

SO.  Toys are important at my house and valued for their examples...I bet you just curse them for being sucked up in the vacuum, doncha?  :)

31 for 21: Better Than It Looks: Tweens

Yes.  I am late.  But I had internet issues last night...which also explains why you don't have pictures from Elise's birthday party...which I still owe you.  Tonight, it's on the docket.

BUT.  I have a good one for yesterday. 

My life is better than it looks because the tweenage years are delayed. 

nah-nah-naaah.

Elise is 10 on Thursday.  She is squarely situated in the Tween years.  So speech is delayed.  And writing, and reading, and social interaction, and blah, blah, blah...  So is prepubescent mouthiness.  Yep!  And that's not all bad.

Right now, she "talks" back and spits at me, and sometimes doesn't want to hold my hand, but at the end of the day, she's still my snuggle bunny.  At the end of the day, she still thinks I'm the best thing since sliced bread.  Which, is already dying out a smidge with my 6 year old.  At the crack of dawn, she still tries to sneak into my bed to pet my face.  When she's watching TV, she still wants me there to watch and appreciate the funny stuff.  I am still the first person she seeks out for anything she finds cool or interesting.

Not only is my life better than it looks in this arena...but I'd hold it up against the typical kids out there, and say, it's BETTER than the "Typs" have it!!!  So there...!  :)

31 for 21: Better Than It Looks: Friends

Elise had her birthday party today.  Aside from friends' food allergies, it was exactly like Amelia's party in July.  Maybe even smoother.

And you know what?  That's pretty awesome!

I'll post pictures on a bonus post tomorrow.  I'm beat. 

31 for 21: Better Than It Looks: Never Boring

Article of Evidence #4:

Elise brought me a present tonight.

She comes into the bathroom holds out her fist, "Here.  All done."

And hands me a tooth.

"Um.  Who's tooth is this?"

"Not mine."

"Well, who had this tooth in their head?"

"Me.  All done toof.  For da Toof Faiwy."

"It's not your tooth?  It's for the Tooth Fairy?"

"Yep."

Ah.  Ah-ha.  She lost another tooth.  This makes two in less than two weeks.  This was, again, a tooth that I never even knew was loose.  Until it was put in my hand.

Medically, educationally, physically, emotionally, and humorously, she is not boring, this kid.  NOT EVER.  I can predict almost nothing before 5 minutes ahead.  I am always on my toes.  I am always amused.  I am always pushed.  I am always entertained.

She is a firecracker of life and light.  She is never predictable.  She is always worth the stress.  She always gives life a new perspective.

She is great fun.  Even if you don't know what's coming next.

31 for 21: Better Than It Looks: Oliver Twist

Quickie tonight, because I'm tired...

Article of Evidence #3:

If things ever got really bad, like pre-1800's England bad, we'd have Elise's pick-pocket skills to keep us in the manner we are accustomed...

Seriously, the girl has mad swiping skills. 

She takes stuff from the pantry and fridge regularly, and stashes them in the bathroom, under the guest room bed, or under her bed in a pinch...til the "heat" dies down, so she can indulge at her leisure.  Ethan caught her with an entire tupperware of fig newtons just last weekend...and no one heard her get them...

But my all time favorite case in point was back when she was little, still perfecting her skills.  When she was 7 or 8 we went to a family birthday party.  One of the guests was a man that Elise did not know, but she desperately wanted his phone, which was perched temptingly on his hip in a phone holster.  She kept sidling up to him and trying to take it.  He would nicely put his hand over it protectively, and say, "No, Sweetie."  Over and over and over this happened.  (She is nothing if not persistent.)  Finally, toward the end of the evening, she slipped up to him, and put her head against him...and he patted her shoulder...suddenly she looked up at the corner of the ceiling and gasped hugely.  I kid you not, every single person in the room looked up toward that corner, expectantly, while she calmly bumped up against him, lifted the phone and beat it toward the door.  He was still looking up at the ceiling and had not felt her professional steal.  I'd been watching her all evening, watching the calculation growing...and so when I, too, glanced up at the ceiling and saw nothing, I immediately looked back at Elise, and got to see the whole pick-pocket action.  I DIED laughing...I could barely get up to stop her and snitch back the phone!!  It was truly a master at work.  She was brilliant. 

Honestly, it was a little unnerving to see the calculation and success.  It was mind-blowing how she had read him, played him, and even figured in physical distraction techniques that most people would never even have thought of. 

And it is stories like this that comfort me and make me laugh, when the school psychologist tells me that she has no practical application skills.  When I am told that she has low outcome planning/projection, I can barely strangle back the ludicrousness of this idea.  She has a mastery of outcome projection/planning unlike anyone I have ever known.  She can read bodies, personalities, and expectations like a BOOK. 

The FBI should totally hire her to track criminal masterminds.  They would have no chance against her.  None.  Neal Caffrey eat your heart out.  Even you couldn't outfox these baby blues!!

31 for 21: Better than it Looks: All In

Article of Evidence #2:

I've spoken of my favorite part of Elise BEFORE.  And I stand by it.  She lives Life, to the very edges...huge-er than life...100% of the time.

We always speak of people "giving it 110%"...you've never met someone who lives that big until you've met Elise...ever.  I promise.  Those who know my girl, feel free to back me up.

My mother and I bought her a placard for over her bed last year with this quote: "Life is good, life is big. Life beats a rhythm in every heart that beckons each of us to join the dance."
~ Annie Danielson And it was so perfect for her, because her life is a swirl and she invites you in...drags some of us... 

When Elise was first born, I heard this song for the first time. 

I Hope You Dance.  Lee Ann Womack.

We were already watching her heart.  We knew that her path was starting out harder.  And I prayed.  That no matter what she would have to deal with in conjunction with the Downs, that she would live to the fullest of her potential.  And WOW she has not disappointed!

Her sadness is bigger.  Her excitement is bigger.  Her irritation is bigger. Her surprise is bigger.  Her anger is bigger.  Her effort is bigger.  Her persistence is bigger.  Her joy fills the room.  Her EVERYTHING is bigger than anyone you've ever met. 

She misses no opportunities.  She misses no body language.  She misses no parties.  She misses no needs.  She misses nothing.

I appreciate her.  I treasure her.  I aspire to be like her.

31 for 21: Better Than It Looks: Set to Music

I told you yesterday that My Life is Better Than it Looks, yes?  And I also told you that I would prove it to you...  And so I present Article of Evidence #1:

While Elise may be fairly non-verbal (she has the vocabulary and speech structure of a 2-3 year old)...she KNOWS her music.

She loves Switchfoot, Dinah Washington,  the Cedarmont Kids, Cake, Brad Paisley, and The Hallelujah Chorus...She not only head-bops to the music, but can sing along with the music...the words are sometimes not clear, although she knows her favorites...but her enthusiasm and enjoyment are in no way affected by that.

I cannot read music...at all.  Which should surprise you if you know that I have been in a choir, from the time I was 5 until I was about 22.  And once my kids get older, I am sure I will go back...  I don't read music.  I predict it.  I can tell where the notes will go based on how the music flows...and I can pick up words in one or two run throughs...and Elise appears to have a similar ability. 

She LOVES to sing in church.  She adores hymns and hymnals.  I have bawled through church more times than I care to confess, because I can hear her throaty, husky voice belting out words precious to me...  I am quite sure that is how God sneaks into her heart...she hears him...really listens...with all the same enthusiasm she attacks the rest of her life!

My other kids don't sing unless they know the song already.  They listen, they read the words.  They learn it with their heads first.  Elise sings first.  She learns the hymns with her heart first.  She allows the music to flow through her and learns it organically...as her soul overflows with joy and praise...

I do believe that she and the Holy Spirit have communed more deeply than the rest of us...and she certainly "believes as a child"...  I know it blesses me...and I am sure she has blessed others by her openness with God's joy! 

31 for 21: It Is Better Than It Looks

There is a movie that I have fallen in love with lately...it's my go-to folding laundry movie...up until lately, it was either Harry Potter or Jane Austen...but I LOVE "The Decoy Bride"!!

 

It is British and everything that that entails:  situational comedy, witty snarks, and beautiful to look at.  An absolute pleasure.

 

There is a part, where she tells the guy, "I'm a lot hotter than I look."  And somehow that resonates with me at a deep level.  Funnily enough, it came to mind when I started writing this post...

 

I write most of my posts in my mind, in the car, before I ever open my computer.  I had this one almost done, when I opened a bloggy friend's post This Morning, which tied me in nicely, too.  Which sets me up...

 

My life is better than it looks.

 

I am dead serious.  My kids are great.  All FOUR of them.  Including my not-so-typical-one.  She is beautiful and spunky.  She has come leaps-and-bounds-forward over the last year...and for all I seem to write about the "Off" parts of life, I really don't feel it most of the time...I write because that's what's going on...but I don't think to compare it until something big happens or I'm filling out the Deeming Waiver packet...It's just my life, and, frankly, I'm enjoying it.

 

Once a year, I have to fill out paperwork for the Katie Beckett Deeming Waiver.  It allows kids with profound issues to get Medicaid as a secondary insurance.  So if you have stinky insurance, your kid can get the intervention they desperately need without putting you in the poor house.  For example, Elise blows through ALL of our insurance's allowed therapies in 4 days, the first week of January, she has met her quota for the year.  Everything else is out of pocket.  And that's just the beginning...

 

 

 

The Deeming Waiver is a blessing.  Which is why I fill it out every year.  But the paperwork, while an astounding load, is also an emotional battery.  I have to say, over and over...and give examples and proof, that my child is "profound" and "mentally retarded" and would qualify easily for a "Mentally Impaired"  facility.  I have to prove where she is behind...and it is ground into my psyche with a battering ram for a month every year.  This year, I filled out all my papers, collected our psychological evaluation, therapy notes, and so on...for a grand total of 95 pages.  No lie.  I just copied them and sent them this morning.

 

I am raw and hyper aware just how behind her peers she is.  And the thing is, this won't be changing much by next year.  The Down Syndrome and secondary diagnoses will not be going away.  The bonus 21st will not be dropping out the car door at some point...  So why am I forced to reiterate this every year...so she can get interventions that will help her to improve from her current state...is beyond me...unless they are just masochistic and mean...

 

And to top it off with a cherry, I got her school photos on Friday.  I took them out of her bag this morning.  And in all the years of school pictures, in all the years of off the cuff photos, in all the years of candids, we've never gotten one this bad.  She LOOKS like what the Deeming Waiver wants me to prove she is to them.

 

 

I called up the photo group and told them what I thought of it.  I told them that it was the worst picture that has ever been taken of her.  I told them that the photographer HAD to have known that it was bad.  I said that I felt like it was a kick in the teeth, that the photographer saw just a kid with special needs and didn't bother trying...  The customer service guy, responded.  "Woah.  Yes.  I agree.  They had to have...as a matter of fact, this was the retake, from one almost as bad...but her eyes were closed."  He then told me how to get retakes and my package would be changed over to the new photo, free of charge... 

 

'Member when I said, some people just don't care?  Yeah.  This would be proof.

 

 

Last year, I was just bragging that she took fabulous school pictures...See Here...and the years before that were even more spectacular!!  But how can you see *THIS* child: 

 

 

And take the previous picture?????  I just don't get it.  And it makes me REALLY Mama Bear Mad.

 

SO.  PLEASE see my girl the way I do.  Celebrate with me the crazy milestones.  Hear the truth in your mother's words, "It tastes better than it looks, I promise!"  See my life for the joy and fun we have.  Feel Elise's joy roll off you in waves.

 

Because my life is pretty darn good.  And that's the truth.  And I'll prove it tomorrow...!

 

 



 

31 for 21: Pictures and Trying things.

I am cheating a tiny bit today, but they are all HUGE developmental and sensory growth markers for Elise...so bear with me and celebrate with me.

About 2 weeks ago, Elise climbed into the bed of Ethan's truck, which she has done only once before.  Which was a nice little bit of bravery and motor planning.

 

Which was then followed by lots of yelling for help to get her out.  I refused and talked her out of the bed of the truck with instructions and minimal touching so she could gauge which body parts needed to move, and to where. 

 

The fact that she got out on her own was pretty huge.  A gigantic step in Gross Motor Skills...let me tell you!!!

 

Then, yesterday, we went to a Family Fun Day for a friend of ours that is a State House Representative.  This has involved a host of sensory-difficult things for Elise and Charlotte in the past.  But Elise demonstrated both her speech leaps and her sensory defensiveness growth this year. 

 

 

First, she stood in line, on her own, and requested a snow cone, and specified a color.

 

 

Then she decided that it was NOT ice cream and refused to eat it.  She gagged a little, but she tried to sell me on it...telling me that she got it for me, and I was to eat it!

 

She then ran off, and sweet talked some different girls into giving her some popcorn.  Which was MUCH more delicious than the weird "green ice, blah!".

 

 

She happily gave some bread to some goats and pigs at the petting zoo...but gave them a wide birth...unlike the horse who declined her offer of bread through the window of his stall.

 

 





Mind-blowingly, she requested face-painting, and not just any old face-painting, FULL FACE. And she left it on for about 20 minutes before she started itching her nose...and about an hour before she started scrubbing it off onto her shirt tail.

 

She answered questions and sat still for the whole thing.  WOW!!

 

She then topped off her day with hopping around in a bounce house...but took turns with her sister and a boy about her age...

 

 

And then today, lest I get too excited and comfy...she played throw-the-rocks-in-the-puddle with her sisters and when Amelia got mud on her hand, Elise gagged so much she kicked her and had to hide...so...you know...BUT, I would like to remember and focus on the turn taking and giggling shared....It was beautiful!!!

 

 

 

And so I shall.

 

 

This weekend was FULL of giant steps...And so I choose to celebrate them...and remember the snapshots of "normal"...they were really delicious...and you have no idea how hard we have had to work for them!!!!  Almost 10 years of Occupational, Physical, Speech, and Sensory therapy PAID OFF, Baby!!!!!  Can I get a "Woot, WOOT!"?!?!?!





31 for 21: The Bald and Ugly Truth

I hesitate to write this post.  I really do.  But I think it needs to be said.

You can't make people care.

I started this blog to open my life up to "Outlanders".  The Down Syndrome community is pretty "tight"...it reaches out to envelop you pretty darn quickly.  We have support systems that go out like a spiderweb across the entire United States...it also does mind-numbing transcontinental jumps when needed.  It even has a language of its own that is slowly permeating the rest of the world little by little.

There are 3 distinct sects of "Outlanders":

There are people that open their arms like second nature, even to things they don't really understand.  They have soft, open hearts that suck you in and make you at home and they slowly learn about you and how to be a better friend and it only strengthens the bond.  I know that each and every post I publish is taken as another thread bonding them to us...

There are also people that WANT to do that, but they are scared.  They don't understand.  But they really genuinely desire to be friends.  Education and sharing go a long way.  They take baby steps and slowly open their comfort box to you, and eventually their hearts blossom like a flower and the final opening becomes a beautiful thing.  These are the people I most often write "to"...I share the silliness of Elise, her triumphs, her funny stories, the unique struggles so that they can learn to understand....so they can know we are really not so different after all...

Then there are people who don't understand and don't really want to.  It takes them out of their comfort zone or their organized PLAN. And their zone/plan is really all tied up neatly with their own expectations of life, and the messiness of special needs is just more than they want to deal with.  It may be that it takes more effort, it isn't Grand enough, or it makes them aware of the spider cracks of imperfection in their own lives...or any number of a host of excuses.  I used to think that the preaching of principles would crack their facade, and it doesn't...so I quit...

SO.  What am I saying? The same thing that I say in political situations, ironically enough.  Love those on your side, share with those who are searching, and don't give yourself an ulcer trying to change someone else's mind...it's their loss.  It's between them and God...and it's highly unlikely that you have any control over their heart.

31 for 21: Another Dirty Job: The Tooth Fairy

Because I discovered that it is ALSO Sensory Processing Awareness Month, I thought I'd tell a fun bizarre Elise story...

Elise pulled out her loose tooth last Tuesday (that I had NO idea was loose as she won't let anyone in her mouth, EVAH) and she did NOT throw it away in the trash or hock it across the room...she's growing up!!!  (The last 3 she's lost have not even made it home.)  Now, if only she will let us put it under her pillow...hahahaha!!

She ripped the tooth at question out of her head while at the white board at school, with a howl of triumph held it high and shouted:  "The TOOF FAIWY is coming TONIGHT!!!"

However, the idea of the tooth touching her pillow made her gag...no kidding.  She retched and refused to house it...she ultimately refused to even let that "nasty" thing even in her room.

The funny thing?  She told everyone at school that the tooth fairy came and left her some money.  Not so true.

The next day, I hunted down a little organza gift bag, and we put the tooth in there and hooked it on the side of her bed...when bedtime came and Elise saw that it was safely ensconced in a bio hazard-proof container, she allowed it under her pillow. 

As she has no real concept of money and it's usefulness, (usually she carries it around in paper towels and gives it to her money savvy sister) she got a couple of quarters and a doll shirt for one of her Activity Support Friends.  Baby Pizza won the lottery and is now sporting an Alvin and the Chipmunks shirt...and, as usual, Amelia is 50 cents richer, and it was a kleenex this time.

:)

Thankful That We Are Not Alone Commercial #1

A bloggy friend reminded me of my November goal...I try to get as many guest posters for my theme "Thankful That We Are Not Alone".

 

I tried for a life introduction kind of thing in previous years...but this year, I would LOVE a funny story ...or a triumph story...if there are any takers please email me at underwater9800@gmail.com...you can look over past awesome guest posts in both of the "November" archives. Your favorite past personal posts or reworked ones are more than welcome!!

 

PLEASE join me!!!

31 for 21: No More IEP Talk: Honest Conversations

I promise you that your kids will ask about my kid.  It's life.  But what's important is that you answer honestly and directly.

You can translate fear and distaste as much as you can foster acceptance and genuine love.

Last weekend I had this conversation with a four-year-old, my friend, "RH".  He comes barrelling into my kitchen, stops in front of me, breathing hard, looks me in the eye, and says, "How come Elise is acting like she is 3??" 

And I look him in the eye, and tell him that "her heart is 3 or 4, she understands a lot more than she can say, but she is still little on the inside.  Tell her if she is being naughty or mean, but be sweet and patient."

He stares at me for a minute, somberly.  Then nods his head firmly, and says, "Alright." Continues to stand there looking at me, nods his head determinedly, and turns heel and tears right out the way he came.

They listen.  They hear your truth.  They remember.  They carry it with them for the rest of their lives.  DO NOT IGNORE THEM because it is uncomfortable.

Previous explanations:
What I've told my kids

What "They" look like

What Do I Tell My Kid? (alternatives)
Part 1
Part 2

31 for 21: #10 Tiffany's Top Ten IEP Tips- The Most Important IDEA

And the number one thing you need to know about IEPs?

It's just not that important.

I know.  You're horrified.  That I should go into ALL these tips and then say that???

The single most important part of the IEP is YOU.

No, seriously.  Whatever is done in school is important, and is worthy to fight with/for.  But what is FAR more important, is what is done at home.  How do YOU treat your child?  What do YOU expect of them?  How do YOU push and challenge them?

Do you do homework with your child?  Do you intervene if "work" is too much?  Do you read to your child?  Do you encourage their creativity?  Do you support their needs?  Do you carry over "sneaky" therapy interventions?  Speech?  Fine motor?  Gross motor?  Do you allow for meltdowns and provide a safe haven?  Do you push them in uncomfortable situations (with boundaries) to help them learn and grow?  Do you expect the moon for and of them??

Trust me, how you treat them at home molds their idea of themselves.  Their idea of themselves then drives them when you are not around.  The special needs community speaks a lot of the idea of "advocating" for our children, with the piggy-backed idea of "them advocating for themselves" as an end goal.  They won't advocate for themselves if they don't think they can do something in the first place.  The seed won't grow without fertile soil and sun and water...

What goes on at school is important, but they won't do anything new and magical at school if they don't believe that they can do it.  If they are saturated with expectations and encouragement, then they will fight for themselves at school.  They will put forth their best effort (no matter the tack of education chosen, self-contained or full inclusion), if they know what is expected of them.  I have said it BEFORE, and I will say it again, you do your child NO FAVOR if you have no expectations.  If you do everything for them, even if it helps your sanity, they will never do for themselves.  The biggest favor you can do for your child is strengthen their own resolve and idea of self.  I hate the word, because I feel like its overuse has neutered it, but empower them.  It is SO important.

Water and fertilize their seed of personal ownership...and watch it flourish.  In school and out.  IEPs are only a fertilizer, you are the gardener.  Don't forget.

31 for 21:#9 Tiffany's Top Ten Tips for IEPs: No Brainer

This may seem like a no-brainer...but keep tabs on your child's progress on their IEP goals.

I mean, you go to ALL this trouble to duke it out at the IEP meeting, Don't forget about it and assume that the goals are being addressed and met! 

As my mom said, keep all your materials (notes, testing, IEP) on your child stored and organized.  Take them out and check your child's progress report against them periodically.  The most obvious time is at "report card time". But I also check about halfway, either in conjunction with their teacher, or just a quickie run through at home.  Make sure that they are all being addressed.  Check our their actual progress, assess if the IEP goals need to be expanded, or even if there needs to be goal regression or breakdown.

If your child has a breakthrough quarter and meets all of the goals, then you need to call another IEP meeting to rewrite goals.  Reward the success, with the child AND THEIR TEACHERS AND THERAPISTS, with treats or simple sweet and complimentary words about how proud and thankful you are.  And then push them to greater success and independence.

If your child seems to be struggling and the goals seem to stretch out before you, heavy and demanding.  You have two choices: 1) rewrite the goals with a greater chance of success or 2) break down the goals on your own and reward your child and compliment the teachers/therapists at positive intervals.  Personally, I usually shoot for the second, the whole "shooting for the stars" kind of thing...but I never hesitate to rejoice and share my rejoicing at accomplishments!  Mostly because if you constantly fight, fight, fight for a huge future and forget to get excited about the baby steps, you and your child will become discouraged.

Never forget that while the IEP meeting is important for the direction of the year, and it is then becomes an everyday guidepost.  And that it is your responsibility to call to accounting.

31 for 21: #8 Tiffany's Top Ten Tips for IEPs: Confessions

Okay.  Confession time.

You want to know why I know all these tips?  I am a former inclusion teacher.  I used to be on the THEM side of the table.

I remember what struck me about parents.  I remember what made me respect them.  I remember the earnestness in their eyes as they pleaded for the best.  I remember the respect and support and tools they gave me to help me be the best teacher for their child.  I remember what made me realize that they were there, spoiling for a fight, and weren't really there for their child.  I remember what red flagged them as wanting to win at all costs, even their child's future.  I even remember what I told myself I'd do, if I was on the other side of the table.  And believe it or not, even now, 10 years later.  I am following my old notes. 

I also know what my old tricks were.  I confess there were things I did to parents, subtly, that made them think that my ideas were their ideas...that I used for the best for their kids, but I have seen less scrupulous teachers push things onto parents that were simply to lessen their load.  (It's like a sophisticated Jedi Mind Trick.)

There are ways that you can phrase a question or even their own words that backs into the door.  You take what they say and turn it just a smidge sideways to where the direction tilts, and they follow right through that door.  SO, if a teacher or principal or facilitator, uses most of your exact words but it's not quite what you said, listen carefully.  HEAR the direction in which it leads....make sure that's where you wanted to go.

When Elise was 5-7 years old, I had to battle our facilitator, who kept trying to tweak my words, feed them back wrong, and I saw exactly what he was doing.  I repeated myself without acknowledging what he was doing...for 2 meetings.  The third meeting, I called him on it.  I told him that I didn't want that, that I knew what he was doing, that I used to do it myself, but that I did it to benefit students, not to deprive them of their right to the least restrictive environment.  I told him, calmly, that the teachers had no problem with a trial period, and that if they were comfortable with it, that he should not mind.  I was never ugly.  I never raised my voice.  I never threatened.  I even allowed for them to push for Math full inclusion, when I wanted Reading full inclusion, even though I knew it would be an epic fail...but I requested that we do both if we did one...and ultimately, my call was correct...and the Jedi Mind Trick did not come up again, but neither did eye contact, support, nor any personal address again.  Not that it upset me.  But I have wondered how many parents he was successful with...for detrimental results on their kids...?

I will say though, in coming up on 7 years of dealing with the school system, only two people have have attempted to deliberately NOT provide the best for my Elise, whether it was what I specifically wanted or thought would be successful or not (my battle unfortunately continued to rage in the same spot with the same two people for 2 years...)  ...so, try to assess the situation before you assume that everyone is out to get you...look for the best, while watching out for the worst.  Work with people when you can, before fighting with them.  Use them as allies, before addressing them as adversaries. 

Don't close your eyes, though, and be honest with what you see.  And certainly don't close your ears, and make sure you listen to their hearts...

31 for 21: #7 Top Ten IEP Tips: Guest Post

I decided to try and sweet talk my mother into doing a guest post during this series.  She is a school psychologist.  I wanted you know to know that it is NOT just me pumping you up for success when you go into an IEP, when I say you hold ALL THE CARDS.  You have legal ownership of your child's education!  And it is nationwide.  This is her schpeel when she presents Parental Rights.  Not every system is as empowering as she chose to be.  These particulars are Georgia Law, but the bare bones are in every single state.

Here is my mother, Sharon Tachenko.  She is a former Special Education Teacher, and current school psychologist and diagnostician.

"I have served as a school psychologist at many meetings with parents, classroom teachers and other intervention staff. Such meetings are called to review psychoeducational assessment to determine eligibility for specialized services. Meetings with parents and teachers can also be for the purpose of a review of prior eligibilities and consideration for ongoing specialized services (IEP for special education). ALWAYS, at either type meeting, an essential goal for me is to assure parental comfort, respect, and to draw YOU, the parent, into a true collaboration as an essential member of your child's educational team. The law under the Individuals with Disabilities Education Act (IDEA) REQUIRES that Parental Rights be administered. I never see this as a perfunctory act, but rather an opportunity to inform and educate YOU, the parent, with the goal in mind to draw you into a full and equally important role with teachers in the education of your child. Who better than a parent can best serve as reporter and ADVOCATE for your child!

 

I seek to empower parents in that knowledge. I say it explicitly. I always tell parents, "YOU are your child's best advocate until the students can advocate for themselves." An essential goal of any intervention team should be to make intentional plans to model and teach students as we pass that baton of self-advocacy. Parents should frequently be reminded of their essential Parental Rights. At each meeting, I always sought to provide a synopsis of those rights. After addressing the above principle of advocacy, I would seek to inform you that one of your essential rights is the right to call a meeting at any time. Each of the following Parental Rights are accorded by law through the Individuals with Disabilities Education Act:

 

You have access to all your child's records at any time. I suggest to parents that you keep papers (filed oldest to most recent), so that you can quickly locate and monitor what should be happening on behalf of your child. If you cannot put your hands on essential papers/records, you can request them and have full access to them (special ed department). People come frequently for a variety of such requests, and you should NEVER feel hesitant or intimidated to ask for anything in your child's special education records.

 

YOU have the right to call a meeting of teachers and intervention staff at any time. This can be to discuss concerns, lack of progress, ask for help in better augmenting/facilitating the home role in the school's stated goals.

 

You have a right to expect confidentiality. Nothing will EVER be shared beyond current education providers without your written permission.

 

You have the right to a full and complete evaluation to determine your child's disability and/or related service. Efficacy of prior testing MUST be reviewed every three years, with consideration for further testing on the table. You can request updated testing to be done by the school. You also have a right to contest an evaluation with an independent (outside of school) assessment. NO decision can/will be made regarding your child's services without your full and informed permission.

 

You have the right to have your child's services provided in the "least restrictive environment." That means that unless the school can show (with data) that your child cannot learn and make adequate progress in a setting with typical developing age-peers, no pull-out should be considered.

 

If you ever feel you are not being heard by your local service provider(s), you can request a due process hearing. This can result in a simple mediation and resolution at the local level. You also have the right to file a formal written complaint with the Georgia Department of Education to conduct an investigation about any concerns, problems or disagreements. These essential rights are provided in synoptic detail here:

http://www.parentmentors.org/Documents/Special%20Education%20Parents%20Rights%20condensed.pdf

 

And a more comprehensive, detailed version here: www.gadoe.org.

Both the synoptic version and the more detailed version should be provided all parents of children with special needs at the outset of the school year. They should also be offered at any and all meetings where your child's needs are discussed.

A final word to you ~ NEVER be intimated by the "professionals." No one knows your child, or CARES for your child like YOU, the parent. I always tell parents, "YOU hold all the rights! Take advantage of them! Fight for your child! NEVER remain silent when you think you have some insight or desire for your child. We are a team and YOU are an essential and critical member of that team. As much as a teacher may grow to love and respect your child, that teacher will touch your child's life for only one year or two. YOUR commitment will be forever." I take that very seriously. NEVER let any well-meaning "professional" keep you from expressing your wisdom and desires for your child. YOU are your child's best ~ and forever advocate!"

And so, you see that you have legal proof of your power and control.  It's not just me pumping you up and encouraging you.  Also, now you see why you can afford to be generous and participate in true and equal discussions.