Friday, October 22, 2010

Eat

So, it's been a while since I've posted anything. We have been really busy around here.

Today I am talking about odd obsessions some children with special needs have.

For my daughter, she has an obsession with food.

Not just eating it. Playing with it, hiding it, wasting it, ruining it.

You name it, we have found it hidden in her room.

We first noticed an over-the-top love of food when she was 2. She had 2 words in her vocabulary: Mom & eat. At least one hundred times a day we would hear "eat eat eat". It didn't matter when she ate last, whether it was a full meal or a snack. She didn't care what she was fed next. She wanted food. All.The.Time. The strange thing is, she wouldn't always eat it. A lot of times she would choke and gag. If it was something she really liked, cereal for example, she would literally eat it until she threw up. We never seemed to be able to get her full. There was a time when we considered she might have Prader Willi Syndrome. But it just didn't seem to fit.

Then, she started eating non-food items. Styrofoam, paper, hair, pretty much anything. And then, she started doing strange things with food. Once we found her in the middle of the night in the kitchen. She had a baking sheet out. She laid out all the bacon on it, covered it in mustard, cheese and cooking oil. She didn't want to eat it. She just wanted to play with it. She has dumped countless pounds of sugar out for no apparent reason. I can never keep cooking oil in the house. It always ends up in the tea pot. And sweets? Forget about it. Gone within 3 seconds.

Then, we started finding food hidden in her room. The list is rather strange. Onions, potatoes, rice. Nothing was ever eaten. Just there. Under her pillow, under her bed, in her closet. At the bottom of her clothes hamper. We have found more normal things too. Ice cream, cereal, cake. It is a compulsion for her. I think she genuinely cannot help herself.

At this point, there is nothing we can do to stop it. It mostly happens in the middle of the night. We wake to find crazy things have happened. She once ate an entire gallon of ice cream in the middle of the night. We could not figure out why she was sick the next day until I found the empty carton in her dresser after doing laundry.

Some people would say we don't watch her closely enough. Others who have stayed with us for any amount of time know this is not the case. We have 3 other children as well as other household responsibilities. It is simply not possible to keep all eyes on her all the time. Besides, she's fast. One time she went into the kicthen to throw something away. She was in there for maybe 2 minutes before I realized she was in there too long to be simply throwing something away. By the time I got in there she had poured out a pound of sugar onto the floor along with 2 packets of kool-aid mix. In 2 minutes.

Another time I was cleaning our bedroom. All I did was make the bed and sweep the floor. Maybe 5 minutes. By the time I came out she had poured out an entire bottle of olive oil inside the refrigerator.

People say I need to watch her better. What would you have me do? Sit her on the couch across from me and never do anything but stare at her? Others have suggested she stay in her room if I have to do something. What part of fast and sneaky do you not understand? Others have said lock her in her room all day. I can't do that. Besides, one time when she was grounded to her room for the afternoon, not even locked in there, she ripped her sheets apart, tore down her curtains and apparently had a knife hidden in her room and cut up a bunch of her clothes.

Her oral obsession goes beyond food as well. We have caught her trying to drink mouth wash. Eat any pill she can get her hands on. It doesn't matter what it is. If she thinks it goes in your mouth she tries to eat it. The thing is, she is not stupid. She understands that these things aren't edible. She simply doesn't care.

In our house, if it can't be locked away, we can't have it. It's too dangerous. For her and our other children.

What are some of the odd things your children are obsessed with?

Friday, March 26, 2010

My daughter & my incontinence....

It is 12:30 in the morning. My house is eerily quiet. I am listening to the end of a thunderstorm. I promised a new blog and now is the perfect time.

So, I settle myself in with a nice adult beverage and my laptop. Ahhh, the things I want to write about.


Then, out of nowhere, something really funny happened. A friend is currently battling a cold and was talking about sneezing and coughing fits. I added my thoughts on incontinence. She tells me it only happens to her when she drinks. Great. I pee when I think, how am I ever going to get through this.?.!

Here goes...

My question on the facebook page tonight was about getting through the day to day with a special needs child. I, for one, am ex-aus-ted at the end of the day. Exhausted because I have three other children that demand so much time and energy. Exhausted because I am explaining to Nicole, for the thousandth time this week, why she can not swing on the neighbors swing even though every kid in the neighborhood is taking turns on said swing.

It is taunting her. It is speaking to her. Begging her to awkwardly jump on it. Then it happens. As I am making home made ravioli (which I am quite proud of, by the way)I look out the window and she is soaring about 15 feet in the air on a rope swing. Literally. A rope swing. Giant rope. Big knot at the end to make a place for a tiny bum. R-O-P-E swing. No wooden seat, nothing to hold on to. Just a rope. Great for the other kids. Not so great for my easily distractable, very clumsy, accident prone five year old.

I finish stamping what looks to me like a dumpling/ravioli/yuk chunk so I can move two feet to the front door and yell the 30 feet across the street to my surely-going-to-fall-any-moment daughter --------------


Uh-Oh.. Here it comes..."Nuuuh-Koaaaal!!!!"

Too much exertion. I have created a piddle of incontinence. Oh boy. I don't know about your neighborhood, but I live in a neighborhood of community bar-b-que's, get togethers and daily "everyone choose one yard for ALLLLLL the kids to play in, so that alllll the parents will be staring at that yard" kinda neighborhood. And today, that yard was in the same gawking direction as mine. I had on a summer dress. And I piddled.

"Who saw it?"

"Surely no one would be able to tell from any distance"

"Did my face give it away? They are moms, they *know*"

"Aww shit! There goes my bread and cereal connection.... The woman just saw me pee"

"Stop being crazy.. She did not.."

All of this happens in my brain in a matter of two miliseconds.. And I scamper back inside and pray that Nicole heard me from her new-found flight.

She does.

"What mommy?"

"You made me pee.. Why were you in the air. On the swing. I told you no!"

"Uh... Because... I wanted to...."

"You made me pee. In front of everyone...."

"No mommy, HayLee made you pee."

Gee.. I guess she actually does listen to me complain about my post-three-babies issues...

How do you argue with that?

(For those that may be a little lost, click each of the links for 10 second back stories to each of the confusing tid-bits. :) )

This post is dedicated to every mommy that has ever tinkled herself at the most inopportune moment and picked up her schmidt and went about her yelling. I love you moms!!

And to Vanessa because she pees on herself too!! :)

Friday, March 12, 2010

Oddballs in my life.

We have had a good week in our house. I have been in a good mood and we have had no real issues. It occurred to me that I didn't really have anything to write about, but I felt like writing. I spent all day trying to find inspiration. Can't talk about this. That is not interesting. Every time a subject came up it was either way too involved for me to get into here or completley irrelevant. Then, my kids were funny. Inspiration!


All of our children do strange things. Thats part of being a kid. You get to do totally off the wall things and you get an automatic pass because you are a kid. Things adults would (should?) never do in public. I will share with you some of the humorous things people in my family do.




Some boys think it is okay to pick their noses....

My son Luke

Some girls think it is okay to stuff their faces full of cake, just because it's their birthday...

My niece Addyson

Some boys think they are magic, milk producing little humans..

Luke

Some girls think it is okay to jump off of daddy's back because "they can fly"

My daughter Nicole

Some boys think it's okay to get their heads stuck in banister rails.

My son Hayden

Some little girls think they rule the world....

Addyson

Now, I know I said adults should not do some of these things in public... But some do...

This big boy picks his nose

My brother in law Lucas


Some one thought I should chill on a gators back..

Me about 1 year old

Apparently it runs in the family..


Some big boys think they are Dr. Seuss.... No, it was not Halloween..

My dad

Some boys think it is okay to kiss other boys while their wives are RIGHT THERE!

Yeah.. My dad

Some big boys think it is okay to get hammered at a perfectly dignified birthday party their daughter threw for them..


And then hang out on the ground because "It is rude to leave a friend on the ground alone. Even if he is drunk."


Well, I enjoyed going through some hilarious and some mildly funny pictures. I hope you did too.


I have 60 bajillion pictures. I'm sure I'll do this again some time.

Until then, lets hope I have another good week, and some actual inspiration. :)

Monday, March 8, 2010

What dreams may (not) come.

Prom. First date. Driving. Periods. Boys. Marriage. Babies. The list can go on and on.

I often wonder how much Nicole will be able to do. She is not physically handicapped. She really is not "dumb" by any stretch of the imagination. She simply does not get most things. We have strong feeling she may have Aspergers Syndrome.

I am guilty of thinking, at times, that she may just be the ditzy blonde trophy wife type. Other times, she seems to tune into certain things and I am all but certain she will be a genius.

Yesterday, while letting her "drive" in the driveway it dawned on me.. She does not have an attention span the size of a goldfish. How will she ever be able to drive? Cook? Finish school?

Though nothing but fate knows what Nicole will do or be as an adult. I just can't help but wonder if we are both going to miss out on some of the most important female milestones.

A friend recently brought up the notion of celebrating Menarche with her daughter. That is something I would like to do with Nicole but that also opens a door to a host of other "what-ifs" and "could be's". Will she understand its importance? Will she want children? Will she be capable of really caring for and nurturing her children? Will she find someone to love her and care for her the way she deserves, despite her problems?

Prom. Will she have a date? I know all too well the side effects on ones self esteem that come from having certain problems society deems "strange". Will she sit at home that Friday night, dateless & depressed? Or will I have to spend $500.00 on a dress she will never wear again? Hopefully, the latter. It would be the best $500.00 I could ever spend.

Nicole is so beautiful and so caring. She has the most beautiful eyes and she is full of energy and sass. Are my dreams for her her dreams for herself?

As mothers, we are conditioned to start day-dreaming of our children's futures from the days before they are even born. What will they look like? What will they be like? Who will they marry? How many children will call me "Grandma"?

Even though I have three other children, it is a devastating thought that Nicole might not have children. I tend to compare it to learning that your child is gay. The day dreams have been there all along, and though it might be sad because what you imagined your child's future to be like is not how they see it; it is also a wonderful new side of the fence that you get to explore together.

In the end, what is more important for your child? To be loved no matter what road they voluntarily or involuntarily travel? Or to spend your days in sorrow over your perceived loss?

Sunday, March 7, 2010

Riding in cars with daughters.

I find it hard to get excited about things that Nicole does. I don't know if it is because her 3 year old brother has been doing them for months and she is just now mimicking him or because a lot of the time it is something someone in the family has been trying to teach her for months. Either way, I feel a lot of guilt about this part of our relationship.

During the week Nicole and Luke go to a learning center where they have excellent teachers. Nicoles teacher has been the most valuable resource we have had yet and I treasure what she has done for us.

On the weekends I have all four kids with out any help until my husband gets home from work. It gets tiring.

Needless to say, I'm sure all my kids could use a little more "mommy time" with me. With the exception of my youngest who is quite literally attached to my hip.

I have found that Nicole and I need more "mommy time" than any of my other children. It is essential for our relationship. It is easy to lose her special moments in the chaos that is my day. It is harder to make a fuss about her remembering what she did in school that day. A lot of the time her accomplishments go with out the tea party they truly deserve.

But she does truly deserve a circus themed party for all she has accomplished this year. She has both amazed me and given me more frustration over the last eight months with how much she has learned. Part of me wants to know why she is not learning this well at home. A part of me is eternally grateful that someone is able to teach her.

She is a wonderful little girl that deserves everything in life.

Today, in the car on the way to pick Luke up from their Papas house we got some rare alone time. She was just as yappy and silly as always. But it was so much easier to enjoy it without another child screaming for attention. She counted all the money in my wallet and even though dimes only counted as one I was so happy when she counted to 9 with out any help from me.

We took a few moments at a red light to look at the difference between a $1, $5 & $10 after she asked if she could have a dollar and took a $10.. Sneaky little thing :)

She learned two new words and said them very well. I even let her have a sip of my iced coffee. Something that never gets to happen. In that moment, I didn't care that she doesn't need the caffeine, or that it may have her bouncing off the walls. It was a very special 15 minutes for us.

She teaches me something new every time we get these moments. Today, she taught me how to slow down and appreciate the importance of 15 minutes with your mommy.

When we got to my parents house I let her sit in my lap to pull into the driveway. She barely held the wheel but she was so excited to tell her little brother that mommy let her "drive"

I really need to slow down. These moments with her are irreplaceable and truly, very special.

First Post. First time writing a blog.

I have a five year old daughter named Nicole. She is not biologically mine, but I raise her 24/7-365. I don't care what you have to say, she is my daughter. We have been on quite a journey trying to get a diagnosis for her problems. Not so much to have a name for what is wrong, but so we know what to do to help her. Everything has been a dead end. I recently came to the conclusion that I don't care what it is called. It wont make any difference. She is who she is and her father and I know more about her than any doctor could tell us. Sure, it might be nice to know why she does certain things, whether it is hereditary or something she developed from vaccinations, a seizure she had as a baby or any other number of things she went through before she was even born. But in the end, it does not matter.

I find I need a release from time to time on how hard it can be to raise a child with special needs. Some days I feel I could pull my hair out strand by strand. Other days she will finally tie the sash on her robe after nearly a solid year teaching her and I cry from a million emotions all at once. Frustration that it took so long, elation that she is finally doing it and a deep sadness at all the things she may never do because it will be easier to just give up.

My hope from this blog is that it will be a place for me to talk - to anyone that wants to listen - about my happiness, my sadness and my love for this special little girl. Some posts will be of epic triumph and happiness and others will be of sheer anger and frustration. With the good will come the bad and I have no plans of sugar coating my postings. After all, what would be the point of writing a blog full of half-truths?


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