Anger

I woke up angry.  Angry I don't get enough sleep.  Angry that I have to homeschool.  Angry that babe is nearly 2 and loud and full of her own anger.  Angry.

I was then angry at how hard it is sometimes to get Kelsey to function.  I am talking real anger.  I thought my head was going to rip at some seam, and my screams would shake our house.  Angry.

Last night, watching Parenthood, I got angry.  When Adam yelled at Max, I thought good. Max needs to see how absurd he acts.  My daughter has AS and she gets it, because I cannot sugar coat everything and have us all live in denial.  Then Max asked his dad if he was angry at him having Aspergers.  No, of course not.  But the sad thing is, I was like YES!  I am angry that you have Aspergers.  I am not mad at you necessarily, but I am mad at it all.  Why do we have to struggle like this? Why can't you just get it?  WHY? WHY? WHY?

When our morning school struggles hit, and Kelsey's nasty mess of a room and bathroom, I just couldn't take it anymore. I wanted to scream I am so angry at this.  I hate that you are like this.  I hate it.  ...but I love you.  Completely.  I love you, but why??? and why? and why?

I didn't say this to her.  I was thinking it, while my head nearly ripped apart.

I wanted Adam to say this too.  I want to feel ok for these feelings.  But Parenthood is a tv show, and I am living with it for real.  And my daughter will always struggle.

Then the baby poured milk all over the table and all over the floor and all over the bench.  And I went from angry, to pissed.

It was not a fun morning.

and then I calmed down.  I know baby is sick and she is crabby and 2 year olds left will indeed find a bowl of milk, that Kelsey did not put away, and will spill it everywhere for fun.  Of course they will.

The rest of the day got better.  It always does.

I made these a few years ago.  They were my second and third published pages.  I love them as they really reflect the mothering struggles and joys I felt, all within a 24 hour period. I wish I had time to make some pieces now.  I know it would help.  But I don't have the luxury of time, and that also, makes me very angry.  

A tiny project, con't

I worked a little more, and I mean very little, on this book about Kels this week.  My mom was in town, and we were busy buying her a house!  ...and we went shopping and on dates too!

I posted a little about this book a couple weeks back.  It is really my therapy about my Kelsey, and her struggles.  I am so happy with how it is turning out. And when I think about her, and her hardships, and the energy it takes at times, I always come down to the simple truth that she is my girl, and I think she is perfect.

These are a bit dark, I know.  I am not in editing mode today, and the skies are gloomy.  There are black pom poms on the top!  Down below is a work in progress pic!

 Decided on no buttons.  Not really Kelsey.

This mini book is simply paper.  Most of it is doubled up and sewn together. I love the colors and crazy mess which really is Kelsey.    The text is the story My Many Colored Days, by Dr. Seuss.

Some days are yellow.

Some are blue.

On different days I'm different too.

You'd be surprised how many ways

I change on Different Colored Days.

On Bright Red Days

how good it feels 

to be a horse

and KICK my heels!

On other days I'm other things.

On Bright Blue Days

I flap my wings.

Some days, of course,

feel sort of Brown.

Then I feel slow

and low,

low 

down.

Then comes a Yellow Day.

And, WHEEEEEEEEEE

I am a busy buzzy bee.

Gray Day...Everything is gray.

I watch.  But nothing moved today.

Then all of a sudden 

I'm a circus seal!

On my Orange Days 

that's how I feel.

Green Days.  Deep deep in the sea.

Cool and quiet fish. That's me.

On purple Days

I'm sad.

I groan.  

I drag my tail.  

I walk alone.

But when my days are Happy Pink

it's great to jump

and just not think.

Then comes my Black Days.

MAD.

And loud.

I howl.

I growl at every cloud.

Then comes a Mixed-Up Day.

and WHAM!

I don't know 

who 

or what

I am!

But it all turns out all right,

you see.

And I go back 

to being...

ME!

an Aspergers type of day. again.

Despite the sunshine, and the fact that I put on real clothes and make-up, straightened my bangs and all!!!, it has been a hard day.  I went to my neighbors mom/church gathering at her home.  It was centered around mothering, and lots and lots of little ones everywhere.  Amazing, wonderful, moms drinking decaf coffee and eating yummy little snacks. (I drank real coffee, with lots and lots of caffeine!) I was excited to get out, even just to go to the next door over!!!  haha, kinda sad!, and talk and maybe pick up a trick or two. Wow, do I ever feel like a looser.  Geez.  I am so not functioning compared to these women, it is just sad.  So, I listened a lot, and didn't talk (amazing!) and I tried to take in some things that I can do to help me in the home.  I left early, had to pick up M, and I walked in and Kelsey was in complete melt down after I said one simple thing.  Oh my, I just came out of the house of so together women, juggling all these kids, and they all looked great, and SLAM, my reality set in, and no wonder I struggle so hard.  I explained to Kelsey, while trying to quickly change a boom boom and run to get Maddy, what I expected from her today.  She needs to catch up on her school work, and I need help around the house.  We need to all work together and get our home together, and our work done.  I know I just said that twice, but mothering Kelsey, I repeat a lot!  Kelsey, couldn't handle this I guess, and we are back to tears.  And more tears, and life is suddenly hard, and I don't know why.  Why?

I had a LONG talk with a developmental Dr. man the other night.  We are not working with him, but he took an hour to talk to me on the phone about some things.  Kelsey is so in her head, that everything that does not revolve around her, what she wants to do, where her mind is at the moment, makes her upset.  Apparently, this is a typical thing for children like Kelsey.  So, what have I been doing all these year?  I have been bending over backwards to help eliminate these episodes, and guess where it has gotten us?  At some point, I need to say, we need to get ready, leave this house, and I expect you to be ready in 1 hour, with out a crying episode.

Kelsey says she longs for a simple life, as long as we don't get bored. haha.  We have a pretty simple life, the only way to make it simpler is to not make her do school work, or ever get out of bed.  We will let her hair dred, and never clean.  Oddly enough, she wants chickens, and an entire farm to take care of, I guess as long as mother does everything.

I am exhausted.

I suddenly am really questioning how I run this house.  I never stuck to a strict schedule, as Kelsey's moods and such change all the time. But, I wonder if I need to create and stick to some sort of type plan/ Because whatever I am doing, is not working. I can do this better.

After this episode, I went to pick up Maddy, and I actually got out of the car and socialized. Amazing!  I surrounded myself with other moms that were still having little ones, and I talked, although I still feel pretty pathetic in my attempts to do this.

btw, I just put school work on hold, again, to let the kids play with the hose outside.  It is too nice, and Kelsey's mood has changed dramatically. See, can't schedule at all!  I think I'll go take a photo and draw with baby on the sidewalk!

She has Aspergers.

I've known for some time now. When I said these words to myself, I cried.  I did not cry out of sorrow for my daughter having this syndrome, or because I was now a mother to a daughter with this syndrome.... I think I cried because  all the denial, and all the heartache came together and said your most amazing daughter is really not ok.  She needs help.  Your eyes are now open, and it is time to begin helping her.  Her life is in your hands, and only you can guide her, love her, and help her grow with this, so she can someday function.  Your daughter does have severe anxiety.  Your daughter will not get out of her bubble of dragons to play with other children.  Your daughter does show signs of depression.  You daughter is growing up, but cries everyday, often multiple time per day.  Your daughter cannot ride a bike, use a knife, or even hold a fork properly, or even run with a "normal" gait.  She is quirky, extremely intelligent, but introverted. She is clumsy and still spills everything. She prefers the dark, and cannot stand loud noises (sometimes). She will eat her hair, pick her nails, shake her hands, or bite her fingers constantly to deal with life.  ...And she is outstanding.

Kelsey is 10 now, and struggles everyday, as I struggle everyday to give her a great life.  She wears me down, but fills me up with so much joy, love, laughter, intelligence, and goodness. She is growing up, and these things are changing.  The days of constant fear seem to have gone.  She does not ask if the stove is off a million times before bed, as she did for years straight.  She does not fear tornados and any strong wind that may bring tornados, even though tornados are not too common in Denver.  Ah, we can leave the house, and she is ok!  She is starting to talk about other things, but still draws dragons and writes pages and pages of dragon tales almost daily.  Her obsessions are growing into more compassionate ones, but this leads to great heartache, heartache that a 10 year old should not have to endure.

My love cannot be far from me. If she is, she is closed. She may appear out of it, in another world, depressed, but she is just dealing with being away from the nest.  She still pleads with me to let her sleep with me.  She holds on tight, and I never want to let her go, but I fear her never being able to function on her own.  I don't know our balance, I only want to hold my baby and tell her I will protect her always.  But, even when I say this, holding her near, something happens, and she is set off, and I don't know what it is.  Her sadness gets strong. She cries. She cries a lot.  Sometimes, it seems, for days.  And then life is good again.

I took Kelsey out of school last November.  It was too much.  Bringing her home to school has been a great decision.  I know this doesn't help her social skills, but it helps her life.  Life is simpler.  There is much less stress, more time to breathe.  Kelsey does well with this.  She spends the days with me and the babe, obviously schooling, but also at the dog park, taking walks, out back with baby, reading and being.  We don't do too much, as it is just too much. She has grown into an extraordinary big sister to baby sister, but nothing much has changed between her and Madison.  Ha, of course, they are 20 months apart after all!  She has grown so much by helping me daily. I am surprised and proud at her transformation at home, but always aware we have so far to go.

Kelsey Lin, my heart, I love you completely.