Always reading, always learning

When your child has a disability, you find out everything about it that you can.  How can I help?  What does it mean?  What are my resources?  So many questions flash through my mind everyday.  I find myself googleing a lot (a good and bad thing).  Today I came across this.

Difficult birth histories, such as long labor, heads too large for the birth canal, four or more hours of Pitocin to induce labor, emergency C-sections, cords wrapped around any part of the infant’s body, and oxygen at birth, can lead to sensory processing disorder (SPD). Parents, teachers, and pediatricians should be alerted that the critical period for ameliorating sensory-motor deficits is from birth to age seven.   When gross or fine motor weaknesses are seen, pediatric occupational therapy should be sought immediately, rather than waiting for the child to “outgrow” the problem.

WHY did no one tell me this before.  WHY WHY WHY.  I had a long labor, four or more hours of Pitocin, Ella's cord was wrapped around her neck....what the hell?!  I don't know why, but somehow, this did make me feel better.  Maybe it answers the question of why for me.  Well, sort of.  I will always blame myself, I think all the medicine I had to take when I was pregnant with Ella did something to her little nervous system.  

 Ellaism.....

Ella:  I want a trick or treat

Me:  A what?

Ella:  (very adamantly)  a trick or treat.  

Me:  Can you show me please.

She brings me over to the pantry and shows me the little fruit by the foot box.  It turns out the ones we have are from Halloween (they are still good, scary, i know)...They have a little pumpkin and sponge bob on them with the word Trick or Treat.  I know she can't read....BUT she did associate the scene with Trick or Treating.

Pink Farts

So, when hear the phrase Special Education, I think of children with downs syndrome, or cerebral palsy, or children with serious developmental delays.  I never thought of Ella as needing special education.  I have actually fought the label every step of the way (kicking and screaming).  I had to get over my own issues with this phrase.  So what it if it is called Special Education, lets just call it Pink Farts for all I care, the fact is, it may help her.

Ella will be aging out of the states Early intervention services when she is three.  She will no longer receive the OT through them.  So, we have been looking into different options.  We were just going to send her to preschool three mornings a week, and have her see and OT once a week.  Our current OT brought up her concern that Ella may get lost in the classroom with such a large ratio.  I would tend to agree, now.  Before, I would have told her she is crazy and dismissed her concerns; however, they are valid.

Special Education preschool is not the same today as it use to be.  They have varying degrees.  Ella is "special", and I love her all the more for it.  They have a smaller teacher student ratio and they will give Ella OT and speech while she is there.  My concern is that she will be around children who are cognitively delayed, and display behaviors that we have yet to see from Ella.  I don't want her to be drug down.

The plan right now is to get her evaluated by IMUA's (Hawaii's early intervention program) psychiatrist and developmental pediatrician.  We are also going to have her evaluated  by the Department of Education to see if she even qualifies...

So, for now I say Pink Farts is the way for us.  Who knows, she may benefit from Pink Farts.  See, it sounds much better than Special Education.

Body Rocking

Lately I have noticed Ella body rocking.  She just sits here and rocks back and forth while watching tv.  This may sound horrible, but my heart sinks every time I see her do it.  It scares me, I feel it is a symptom of something much bigger, or rather, things to come.  When I lightly touch her, she immediately stops.  She doesn't acknowledge that I touched her, she just stops.  She has her weighted blanket on her lap and still, the rocking ensues.  So, what do I do...sit on her to stop her from rocking, hold her arms while she flaps them when she is excited or just let Ella be Ella (a wonderful, beautiful child with some sensory difficulties). I choose to let Ella be Ella, for the time being.

However, in the back of my mind I wonder if letting Ella be Ella isn't such a good idea.  I wonder when the day will come that a child makes fun of her for "arm flapping" when she is excited. Will a little piece of her spirit die? I hope I will have helped her be a stronger person than this.  I hope I instill in her that she is who she is and that is wonderful, hand flapping and all.  Could I have helped her by stopping it now.  Should I tell her that there are other ways to convey excitement.

Maybe being different creates greatness.  Maybe it is the diversity and the ability to cope with it that creates fascinating, wonderful people.  I know some very wonderful people and none of them are "normal".  After all, what is normal?  Who woke up one day and deemed themselves "normal" and someone else "abonormal".  I refuse to accept or acknowledge normal.  Everyone has their idiosyncrasies.  It is those differences and quirks that make us all so special.

People suspected to have some for of Autism or sensory issue:

1. Einstein
2. Has Christian Anderson
3. Charles Darwin
4. Emily Dickinson
5. Thomas Jefferson
6. Mozart
7. Issac Newton
8. George Orwell
9. Andy Warhol
10. James Joyce

I am sure there are many more...

I started looking into this because one of Ella's OTs told me this was a gift.  I looked at her funny and wanted to say, "You can have it back".  You take the night terrors and the rocking, the hitting, the head banging, the not eating, the failure to thrive, the WHATEVER, and shove it...well, you get the point.

Ella does some amazing things for a 2 1/2 year old.  Her photographic memory is amazing and the ability to grasp concepts blows my mind.  I am told this is partly due to her heighten sensory awareness, for better or worse.  We went to the OT once.  This is a very generic looking place.  When we pull up the second time in the car, before we even get into the parking lot, she asks me to play with the toys and the baby.  This is exactly what she did with the OT the previous week. There are many more examples like this.  Everyone thinks their kid is special, so I may be biased. 

Maybe because she can't filter out the world around her like the rest of us, she just takes it in all the more.  I just don't know. My point is, maybe I should stop looking at this as a disability.  Lets take a more positive route.  Don't get me wrong, I am sure I will have my days where I still want to run for the hills...BUT once I get there, I will remind myself of all the positive things that have come from this and walk back down the hill head held high.

Children are a gift. A precious fleeting gift. Don't take them for granted, now matter how different or difficult they may seem.  Love them for who they.  Love them because of their differences not in spite of them.   I remind myself of this every day.

Ears, glorious ears.

Ear infections, ear infections, and more ear infections....oh and did I mention smelly puss!  That has been my day.  I was getting Ella ready to go to story time and while I was putting on her shoes, I noticed a foul odor coming from her ear.  Seriously, it was gag worthy.  I realized it was probably and ear infection.

I took her to the doctor, and I was right.  They said she probably got dirty water in her ears, and due to the tubes they are now infected.  The tubes have been in there since she was about nine months old, and now they need to come.  One has fallen out on its own.  They other one refuses to.  So, now we go to the ENT.  The pediatrician says if the child is cooperative, then they won't have to sedate them.  Have they met Ella?  Cooperative is not necessarily a word I would use to describe her.

Poor kid can't catch a break.  The stinky eared bandit freaks out every time I put the drops in.  It feels like inserting and NG tube in her again.  I hate pinning her down.

She is still in good spirits, though.

Ellaisms:

1.  I usually give Ella sausage or bacon for breakfast with some sort of fruit.  Yesterday morning I had only gotten some strawberries on the table when she sat down.  She looked at me very perturbed and said, "Hey, wheres the bacon".
I tried not to laugh and asked her to say, May I please have the bacon.  I was cracking up on the inside.

2.  We are still working on pooping in the potty.  She tells me she has to pee, so I put her on the potty.  She tells me, "Go see Evie".  This is her way of telling me to go away. I walk out the room, but I stay where I can see and hear her.  She is leaned over so she can see what is coming out.  I hear her straining to poop, and then I hear her say, "oh come on, come on".  I laughed out loud.  I am not sure if she was giving herself a pep talk to poop, or if she was talking to the poop.  Either way it was hilarious!

I feel like I never talk about about Evie....she loves to get butterfly kisses.  When you do it to her and then stop, she leans her head back into you as if to say, "hey lady, I wasn't done with that".  It is very sweet.  She loves to cuddle and it is one of my favorite things to have her lay on me and suck her thumb.  She make a little noise and if you make it back she mimic you.  She likes listing to the vibration of the noise in y chest.

Nap time is the right time....

Nap time is the right time for doing NOTHING now.  This isn't a good thing, though.  Ella will not take a nap unless I hold her in bed now....tightly.  She doesn't sit and scream in her room, she simply sits in her bed and talks to herself if I don't do this.  You may be thinking, what is the problem?  Well, the problem is that she doesn't take a nap if I let her do that and she can't regulate herself the rest of the afternoon.  She becomes destructive, dangerous, clumsy and crazy.  So, now, instead of getting something done, I lay in bed with her till she falls asleep. Some days this only take about five min...some days it takes up to 20.  the kicker is, I have to wait until I put Evie down for her afternoon nap, which is about 2 o'clock.  Ella likes to sleep for three hours.  She wakes up at 5, sometimes six, and wants to stay awake until 9.  Jim and I definitely need our nights to unwind, and it is hard for us to do with Ella awake.  That is my reality now.  However, I think I am going to stary waking her up at 4:30.

We actually had a pretty peaceful weekend.  Sat we went shopping for news sheets (i know, exciting life).  It was raining here on Maui, so there was not much to do outside.  Sunday we went to breakfast with some friends and then had to catch up on all the stuff we did not do on Saturday.   FUN TIMES.....

Evelyn will be one in a month.  Where has the time gone.  In this amount of time, I have learned to appreciate both of my children even more because of their differences.  I don't know what they will grow up to be, or what their personalities will turn into, but I can't wait to find out.

Ella will definitely be a challenge, but I think we are up to it!  God doesn't give you anything you can't handle.  Yesterday Ella was making her whole body tremor in the doctor's office, and some lady asked me if she was cold.  She was just excited and that is what she makes herself do when she is excited.  How do I explain that to someone though.

Speaking of Evelyn's first birthday, My super great friend Andrea helped us with her invitations...

Naturally I blanked out our address, not that I think anyone will do something with that, but you never know! I think they are super awesome..Thanks Andrea!

Well, off to finish super and clean up some more before Evie wakes up.  No rest for the weary!

Desiging

As you can see (or not)..I have been playing around with designing this blog. It is kinda fun!  This week has been relaxing.  No doctors for Ella and not OT=happy Alison!  Ella really doesn't want to take a nap lately.  She just sits there and tells me all done.  We have gotten in the bad habit of holding her in her bed, then she falls asleeep. I think it is more a function of me not giving her an option.  I don't let her talk to me.  I don't let her play.  I just make her sit there quietly and give her a bear hug.  She finally just doses off.  However, this is rather inconvenient, as I can not do it while Evie is awake.

Evelyn is more and more expressive and outgoing.  She is really just a  joy to be around, and the kids are somewhat playing together.  So, we couldn't as for more.  Ella has decided that she loves play dough (good sensory work).  And she LOVES singing.  She must take after her mom!  She sings the theme song to all her shows.  It is both cute and annoying.  You can only hear the wonder pets theme so many times before you want to kill someone.

I have been craigslisting the CRAP out of everything!  It was sort of sad to sell the infant carrier knowing that we won't have another baby.  Then i snapped out of it and moved on! Selling stuff was the high light of my week

Funny Ella story goes along with the craigslist business....

I sold the car seat and stroller and Ella was not happy with me about it.  She had a fit and then took a nap.  The minute she woke up she asked me

Ella:  Mommy, where's mah carseat
Me:  It is in the car, Ella.  We will get in it later
(hoping she doesn't mean the infant car seat)
She gets out of the bed, and looks into the mirror at herself, pats herself on the stomach with a furrowed brow and frown.  And in a whiny voice says to herself "It's okay baby, we getcha car seat back".


Well, I thought it was funny anyway!

We went to the Aquarium...but that is pretty  much a weekly occurrence...

Ella at the Aquarium

Evie outside at the aquarium

Long time, no type

It has been FOREVER...and now that the holidays are gone, and we are back, I can get back to our normal routine.

Never a dull moment.  While in Houston for the holidays, Ella had a bunch of dental surgery. Got back, Jim got promoted...Jim's family was here, and then we had a super bowl part.  Life has been a little hectic.

Ella's tubes won't fall out on their own and now I have to call and ENT to get them out...is anything EVER easy?  Was also told that she may have some bladder (urinary tract) problems.  So, we have to get this looked into.  this means an ultrasound on her urinary tract.  Can the kid catch a break?!

On the bright side, Ella is doing pretty well!!!  She seems to be maturing and understanding that their or consequences to her actions.  Either that, or I just became so fed up that I started to discipline her more.  Not sure which!

Today I had to hold her to get her to sleep.  It was a memory I will cherish forever.  Her little forehead on mine. She was all wrapped up in a big hug.  However, at the same time, it made me sad for her because she needed me to help calm her little body to sleep.  She should be able to do this on her own.  I know this sounds trite, but it is true. Needles to say, we will be buying her a weighted blanket to help with the problem!

Evie is doing GREAT.  She pulls up on everything and babbles all the time.  This sweet little baby keeps me sane.  Of course, she has her moments, but don't we all!  I can not believe she is going to be one in April.  Where did the time go?  Well, that is enough for now.....

I need to cook dinner, do bottles, clean up, play with Evie and then sleep.  I never thought that my world would be so small that its' happiness would depend on a child napping. C'est la vie!!!




I have decided I am going to write something funny the kids say in every post.  Hopefully this reminds me of the joy they bring to me and to my life.  Not to mention...it is just fun!


Me:  Ella, are you trying to kill me today?
Ella: No, not today.


This was after she tried to put a peanut M&M up her butt....was not sure if i was disturbed or impressed.