Another Milestone of Play

Elise undressed and dressed 5 dolls a few weeks ago. 

We're talking dresses, pants, shirts, boots...plastic and cloth dolls...BY HERSELF...one of whom was mine and included taking off plastic shoes, bloomers and tights, and replacing bloomers and shoes...the tights have been making her insane for 6 months. This is a HUGE fine motor coup!!!! This is a milestone we couldn't have dreamt of a year ago! So proud and happy!!!!

This is one of the few things she can play alone.  She can play the snot out of electronics, but toys are a little trickier.  She likes to "match" things, grouping toys according to breed, color, or size.  So all the horses go together, all the yellows, all the giants, all the smalls.  She will proudly tell me "Look!  They match!!"  She will feed toys.  I had to put together a small buffet for her dolphin tonight, as he was very hungry and air wasn't appropriate food.  She will listen to books. 

But she loves to dress dolls.  For the longest time she made me do it, because she didn't have the motor skills.  But now, she does and she will spend forever changing stuff out.  And then changing them back, because the dolls preferred their favorites.  I know this because Elise tells me. 

Recently, she decided to seat them for tea.  Last summer her snobby dolls demanded china.  But this year, I am to serve them on a tin set.  I hope that her doll play will involve speaking parts someday...but for now, I am glad she growing up and allowing dolls to invent preferences so wildly.  I am sure it's her allowances, because one of her dolls has a penchant for ball gowns...something that something that is not usually Elise.

practicing growing up

As you know, Elise has Down Syndrome and Sensory Processing Disorder and ADHD.  This makes growing up a hair tricky.  Because she is delayed, I cannot simply tell her why she needs to do something, and warn her and then activate it.  She cannot comprehend it.  I also cannot just DO something for her developing body and expect her to accept it, because the SPD requires an adjustment period.  AND if I am successful enough to talk her into a change, her 2 year old heart wants to share the changes, and her ADHD mind thinks it's cool to show you, abruptly, with no warning.


Lately, I am attempting the placement of things that she will need in the future while it is not necessary, so when it is, it doesn't effectively ruin our days.

Implementation #1:  She is 10.  I fully anticipate that she will start physically developing before too long.  So I purchased 2 very soft, stretchy, shelf bra-lets.  Kind of a practice training bra, if you will.  She was VERY disinclined to try it on at first.  She wears it about 2-3 days a week right now.  She kinda likes it, it's smooth and doesn't bind, but she likes to ditch it, occasionally.  We've already added a day more than when we started.  I hope that by the time she needs it, she will be willing to wear it for the entire week. I am encouraged by this.

Implementation #2:  Ditto the physical development comment.  This has been somewhat rockier.  Deodorant. 

For someone who gags over wearing lotion, you can see why this is a little problem. 

I have gotten a vanilla scented one that does not make her ill.  She rather likes the smell, "yum!!".  She loved it, until she realized that is was for her armpits, and not snack.  I am still only at once a week right now.  But I, again, hope to add in the rest of the week by the time she smells like BO instead of hot puppy when she plays outside.

Implementation #3:  I have gotten some cloth pads.  I haven't done more than this, mostly because the whole situation nauseates me.  I have a low grade plan.  I will be taking her to a pediatric gynecologist (yeah, I didn't know they exist, either) this summer.  I hope to learn that she can take hormones or birth-control to prevent periods, except for once a quarter and keep her home during that time.  I cannot begin to fathom sending her to school until she gets some concept of the situation.  I would not wish that on my very worst enemies.  If I cannot do that, I will need to work it into her IEP  that she can stay home during that time of her cycle, until she has some education in the expectations and care of herself. 

Elise has already started the emotional roller coaster that is the hormonal monthly flux.  I admit that I am praying that she successfully even keels a bit more over the next couple of years...because the highs and lows are whiplash inducing.  Honestly, she started that last year.  But she has settled into a document-able routine. She has two weeks of plain awesome.  Then she has a week of bipolar highs and lows.  The final week is the week of emotional crashing.  Everything is bad and dreadful and not be be endured. 

While it is not easy, I do appreciate the cyclical-ness of the current status.  I don't appreciate being blind-sided by crazy.  But I can at least plan for it, right now.

sidenote:  I never understood even the idea of taking sterilization steps until lately...I see why it becomes an option for some situations.  I would never do this until it is clear that she wouldn't have the where-withal to make life choices on her own.  But I see the appeal.  (Interesting factoid:  A woman with Down Syndrome only has a 50% chance of having a child with DS.  I would have thought that because of the genes, it would have to be 100%.  Interesting, huh?)

The ADHD thing is still a work in progress.  It is NOT okay to make people smell your armpits or admire your bra.  I hope, again, that by the time it's an dramatic issue, that we have nailed that dead horse to the floor!!!

If there are readers of older young women out there, I would treasure any words of wisdom in these areas...and any more that I have not thought of.

To live is an awfully big adventure...

Do I think it is ironic that my child, who will undoubtedly remain a child forever, loves Peter Pan? 

Yes.

Does that somehow completely enchant me?

Yes.

“Pan, who and what art thou?" he cried huskily.
"I'm youth, I'm joy," Peter answered at a venture, "I'm a little bird that has broken out of the egg.” 

“I suppose it's like the ticking crocodile, isn't it? Time is chasing after all of us.” 

“If you cannot teach me to fly, teach me to sing.” 

“To live will be an awfully big adventure.” 

Thank you, J.M.Barrie. Thank you for putting beauty to the stoppage of time that has somehow taken up residence in my home.

funny/sad

Since I threw some gasoline and a match out there...I figured I'd share a sad/funny puke story.  You know, because I haven't provided many giggles lately.

I did not know what Emetophobia was until lately.  In case you don't either, it is an extreme fear/anxiety of vomiting.  As I hold my toddler who is whimpering and breathing like she's run a marathon, and after 3 days of the same with Elise, I figure this is worthy of a post.

I know nobody particularly loves to throw up, but there is a difference between that, and someone who is ter.ri.fied. of it.  And both of my sensory kids are that way.  Elise screams and tries to run "from" it.  If she holds a bucket, or hangs over a toilet, she seems to think it is inevitable...where if she's getting away from it, maybe she can fake it out.  It hasn't worked for her yet...not with this virus, not with chemo, not with any of it...ever.  And yet, she always tries.

(There has been a lot of unnecessary cleaning due to this habit.)

During and immediately after, she tries to burrow into your pocket...sometimes it feels like your very soul...

Charlotte is somewhat the same.  She is petrified of puking.  BUT she will man up at the last second and do her penance in an Easter basket.  A cute one.  With frogs.

However, she also cannot be touched during or immediately after. 

Elise has felt very sorry indeed for Charlotte.  And has tried to hug and pet her when Charlotte begins to scream with fear as the nausea rolls up...Which initiates the evil witch spitting and toddler-cursing and she scrabbles away from the very tight hugs.

It is a truly tragic cycle.

Equality?

Human Rights.  It has taken a lot of forms in the last 200 years.  There have been insane amounts of arguments over those rights...

I am trying not to initiate the same fight with the same words today.  I am sure you can tell where I stand from my own religious statements over the last few years.  But I have a few analytical questions...

The idea behind same sex "marriage" is wanting to be viewed as a viable legal unit...correct?  So.  The government grants a binding unit term, that fulfills that idea, and those who hold the idea of marriage as a religious conviction do not have to be violated.  Marriage has always been between a man and woman.  Across the ages.  Across the moral convictions of virtually all primary religions.  Even cultures that accepted homosexuality.  We are literally trying to man-handle religion, the constitution, and everyone's moral convictions to force something that could be taken care of legally without touching religion or "rights".

What puts a bad taste in my mouth is that this emotional/legal right in the face of true life rights.

In the face of the abortion question:  The government and a small portion of the country have the right to offend multiple religions and tear a millenia-long tradition to shreds.  This same government has decided that if a pregnant woman is in a car wreck, and her unborn child is killed, the driver of the other car is responsible for vehicular manslaughter.  YET, if the child is unwanted for any reason, it can be killed at the hands of doctors as a mass of tissue and disposed of.

 

I, and others like me, propose that this is the ultimate human rights equality.

 

In very recent times, we see Ethan Saylor killed at the hands of off-duty police officers.  (This LINK takes you to a list of ways you can request clear justice for Ethan.)  Antonio and Gilberto , brutalized at the hands of on duty police officers.  Whether out of malice or out of ignorance, these things happened.  And there is nothing done because the victims were lesser humans, those with disabilities. 

 

 

And I propose to you Chromosomal Rights Equality.

 

 

If you support human rights then you support safety against brutality and the unthinkable by those sworn to protect.  If you support human rights then you support life. If you support human rights, then you protect the rights of all to have their religion to remain un-violated.  I'll be completely honest, I just don't feel that there is a lot of grey area here.

 

(If you agree, even with *just* Chromosomal Equality, please right-click and save the last picture, my awesome techie friend put together for me, and share.  It deserves to be seen.  It deserves to be said.  It deserves to be fought for.)

Hobbit Fun

Because I watched The Hobbit this weekend, finally...I thought I'd repost for fun, the treatise on why Elise should be an honorary Hobbit:

"Okay...so later this month, I will address SPD (Sensory Processing Disorder) on a simpler, informational level...but Elise, I really feel, is missing the "full" button...I think she eats for sensory input, and doesn't comprehend that she is satiated until she feels sick. That said, if she could eat when she wants to eat, she would be on the Hobbit Meal Planning:

1) Breakfast
2) Second Breakfast
3) Elevensies
4) Lunch
5) Afternoon Tea
6) Supper

Actually, come to think of it, she would probably be very welcome in Hobbit Society. She could lobby for more meals in the day...and she is certainly the right diminutive size...she absolutely knows adventure when she sees it. She would have been an asset to Frodo and Samwise. Merry and Pippin would have passionately enjoyed her...maybe I should write her in to a fourth Lord of the Rings book and see what happens! :)

Her only drawback in the Hobbit world?

She has little feet.

Ha!!!"

3

The only blog hop I'm really kinda excited about today:

Fact:  Elise is just like me.  She looks like me.  She has my quirks for good or for ill.  Stubborn, Sensory, and ADHD are all me.  She took my "style" or lack thereof.  Men's shirts and flip flops anyone?  She is enchanted by books.  She giggles over the oddest details in movies.  She reads people easily and tends to judge them on their soul and intentions.

Fallacy:  You can't tell someone they look like a child with physical disabilities or that they are "just like" a child with behavioral disorders, because that would mean they have all the same negatives. 

Nope,  we have the same eyes and strengths.  We have the same stubborn genes.  We have the same issue with "weird" socks.  We are twinkies.  But that doesn't mean that I have her plus +1 gene or all the medical issues or speech impediments.  And I will take it as a compliment that we are "two peas in a pod"...and so will she until she hits the 30 minutes of teen attitude...because that's all it feels like in the long run anyway.  For as crazy as my mama makes me, I treasure all the "you're just like your mother" comments over the years...even when I was trying to distance myself.


Picture:

 

Last Easter's drive by kissing.  I must have looked like I needed one.  Generally thrilled that somebody caught it.

 

 

Read everyone's 3 here:  http://www.withalittlemoxie.com/2013/03/3-for-21-a-bite-sized-blog-hop-for-big-changes.html