Tuesday, October 30, 2012

Halloween with Special Needs


Halloween 2004, Elizabeth had just turned three years old, Chris was deployed and we didn't know it, but she had Pervasive Developmental Disorder - Not Otherwise Specifice, an Autism Spectrum Disorder.   All I knew at this point was that she was our little Monkey, with lots of smiles, but also with lots of tantrums, head banging, and frustration on all of our parts. 

So before Halloween I spent a month trying to teach her how to say, "Trick or treat."  We worked, and worked and worked, but by Halloween, nothing was happening.  So we dressed up and I told her to use her manners.  Manners have always been really important to my family, so even as an infant I was showing the girls to use please and thank you.  I never expected that it would save our hearts and butts this Halloween. 

My mom followed us in our car and we began our walks.  The first few houses I was worried.  The bigger kids were practically mowing her over, she was three but the size of an 18 month old.  So we kept plugging away.  At first, I would say trick or treat for her, but then she realized she was supposed to say something, so she said the only thing she could say clearly in this situation.  "Pwease!"  Something shifted, people loved her Pwease and Pwetty Pwease and some watched in horror as the older kids shoved her down or out of the way. . . Empathy hit their hearts and the good candy came out.  I became less anxious, somehow they understood she couldn't say what the other kids were saying.  They smiled, they gave her more candy than the others and smiled when she said "Fank you."

That year Elizabeth made out like a bandit.  I think it took, Mom and I a couple of months before we realized, we just had to throw it out already because she got more candy than even the three of us could eat or should eat.   She loved going out and by the next year Sarah lived with us and she was able to watch and learn and her speech was improving and we didn't know it, but Halloween 2005 was our last year to trick or treat without knowing what was going on with Lizzie. 

This year there will be many children coming to your door.  Some of them will speak, some of them won't know what to say, try to remember - each child has a different story going on behind the scary or adorable costume they have on.  Maybe all you will here is a please or a thank you, try to ask yourself, "If I had a child with limited or no speech what would happen?"  You would be anxious, worried, and probably frustrated. 

Now we do a little trick or treating, not a lot, but when we go, we go over the rules.  I thought I would share them with you so if you see some of it, you might understand better.

Our Halloween Rules:
1.  No knocking on doors with the lights out.  They are not participating and it's rude to not respect their decision.
2.  One piece of candy (sometimes Mommy had to help them) unless they tell you to take more. 
3.  You don't ask for more candy, there are a lot of other children who would like some candy too.
4.  Use your please and thank you. 
5.  Look people in the eye when saying please and thank you.  It's important and polite.
6.  Watch out for smaller children, and be helpful if someone falls.  You would want someone to help you if you fell down.
7.  Stay close to Mommy or Daddy, it's important to stay safe from strangers.

I hope you all have a happy and safe Halloween.  We are staying inside this year, because I lost my voice, but don't worry I'll be buying candy for the girls.

Have a good week.
In Christ,
Maureen

Sunday, October 28, 2012

Discipline. BLEH!


I have started doing a parenting devotional each day thanks to YouVersion's Bible app on my cellphone.  I really like it a lot.  I am learning and refreshing some lessons I think I may have become too complacent on.

One of those things is follow through.  So after feeling convicted I have started cracking down on the girls.  Now Elizabeth knows if Mommy tells her something it's a good idea to listen.  Rebekah though is five years old so she's still learning.  And that means that today I am the mean, mean mommy. 

Discipline is important.  The Bible tells us this in several places and God disciplined the Israelites.  He also showed them grace and mercy until he realized they were never, ever going to listen unless he proved he meant what he said, hence the exile into Babylon. 

Even now, I hate hearing the girls cry, even if they are crying because I have had to ground them, or swat their tushies.  And yes, Sarah I even hated hearing you cry.  In fact, there were a lot of times I would have to ground Sarah, she would go to her room and cry and my heart was torn.  On one hand, she was being rude and disrespectful, so punishment was needed, but she's my daughter and I love her.  I hate seeing her upset.  And yet, I have to discipline the girls, not because I'm mean, but because I love them and want them to grow up and stay out of prison and also understand that rules are important.    But even more importantly, I want them to grow up to be love God and to live by what he asks of us.    If my girls can't listen and obey Chris and I, then how can I expect them to obey and listen to God when they grow up? 

Do you have an area where God is speaking to you about your parenting?  Do you find yourself struggling to maintain order and structure at home?  I know some days we struggle to the point where Chris gets involved and that is never a pretty picture.   Although, he is excellent about making sure after he punishes them that they know that he loves them, but they have to obey.

I hope you all have a great week.
In Christ,
Maureen

Saturday, October 27, 2012

Sisters

Me, Matthew, and Meg (she's the littlest shepherd)
 
Darkness pervades the house.  I lay in bed listening to the silence and finally I can't take it anymore.  I get out of bed and slowly make my way to my mom's room.  She isn't there, she is sleeping these days at the hospital because Matthew is fighting for his life.  I expect to crawl into her bed and fall asleep but it's already occupied.  My sister, home from her own hospital stay thanks to a car accident that took our Grandma Taylor's life and a month later our Grandma Schultz (the stress caused her final and fatal heart attack). 
 
Our house isn't really home these days, it's a shell.  Silence is everywhere.  I usually wait until I can no longer stay awake before I finally give in to sleep.  And even then sleep is fleeting because well meaning people call, they all want answers.  Sometimes I have the answers, but mainly it's all a wait and see what happens game.  It's hard and worse, it often feels like I'm trying to take it all on alone. 
 
So this night I cave in and just crawl in beside Meg.  We lay there silent for awhile then begin talking.  We talk about being scared, how sleeping in Mom's bed helps us feel closer to her.  We are scared Matthew will die, we are scared Mom will have another heart attack, we are scared that life may never feel normal again.  And for a while we are united in our fear.
 
 
For the past few years Meg and I have walked very different paths.  I am going to college, working, trying to help Mom make ends meet.  Meg is busy blowing of high school and following Matthew's former example of drugs and rebellion, but for that small time we are united. 
 
The years have passed, we've still walked different paths but as we've gotten older we are finding more common ground.  We both enjoy writing, love our children, and time has brought wisdom for each of us.   Don't misunderstand me we still do not see eye to eye on many things, but we are working on using our commonalities to forge a friendship.    We won't always agree, but we are learning to agree to disagree.  The moments in the dark when we held on to each other beginning to weave a clothe of sisterhood and encouraging us to become something we've always struggled to do - become a family.


Tuesday, October 23, 2012

Where Do You Turn?



Barking!  The sound draws me straight up.  I can hear it from 50 miles away.  Lizzie's asthma is flaring or she is sick and it's gone straight to her chest.  And yet, in comparison with so many I'm meeting in Liver Land, thanks to my friends who have children who fight Biliary Artresia, we are lucky. 

We don't live in the hospital.  We used to have a small army of specialists and teachers working with her to help her with her Asthma, Allergies, Autism Spectrum Disorder and Amblyopia.  Those are a lot of A's there.  While we worry and wonder what the future holds for our girl, none of it comes even close to those battling cancer, BA, or many diseases that ravage and destroy children and families everywhere. 

And yet, while we don't face the same diagnosis, we are finding kindred spirits in Liver Land, Cancer Land and other disease.  Our children and loved one face different challenges, but it all still rings true.  Parents scared for their children.  Parents left to watch helplessly as we leave our children in the hands of doctor's and nurses, teachers and therapists, people who become our families away from our families. 

We all face challenges.  No ones challenge is worse or better when you break it down to a simple truth.  Someone we love is sick, different, or both.  From Downs Syndrome to B.A. to Autism to Preemies, we all have to fight to let God have our children.

As a parent our first instinct is to try and fix it, but what do you do when you can't fix what's going on in your child?  What do you do when everything that needs to be done, has been done, and it either hasn't made the connection yet or it hasn't worked?  Where do you turn? 

Of all the things we battle with Lizzie, we have found one truth fundamentally necessary.  We have to give her to God and trust that his plan for her is bigger than our own.  And in some ways this is terrifying, but in others it calming.  If God can create the Earth in seven days, send his son to us via a virgin and even walk on water or heal those who are ill, what can't he do for our babies. 

There really isn't a main rhyme or reason in this post, just thoughts racing in my head. 

Where do you turn when it all feels like it's consuming?

In Christ,
Maureen

Tuesday, October 16, 2012

Abandonment


I have Fear of Abandonment.  There I admitted it.  Fear of Abandonment occurs when a child loses a parent at a young age (like I did) or after a traumatic divorce, etc. . . there are several reasons that can cause it.  Some parents who have chronically ill children often struggle with it as well.

When I was younger my greatest fear was that my mom would die and I'd be left without a parent.  Not an absurd fear since my dad died suddenly when I was five years old.  As I got older and then married and had children I struggled with worrying about Chris and the girls.   I do what I can, and spend a lot of time praying about it and giving my family to God to keep the fear from ruling my life.  However, occasionally fear rears its ugly head. 

A few months ago, Chris and I had it all set up to go away for a quiet weekend together just the two of us.  Sarah is living in Idaho so we were asking a college student who we know from one of Lizzie's friends here in the apartment complex to stay with the girls.  Then a few days before we were supposed to leave I had a horrible nightmare.  I dreamed that someone shot Beka and I was only on the phone and helpless to help her and Chris didn't understand what was happening.  I woke up sobbing and even now it still shakes me up, just writing about it. 

But here is the truth. . . we can't stop what is going to happen.  When it is some one's time to go, it's their time to go.  All I can do is love my family and acknowledge that God is in control and keep praying and giving my family over to him and trust He will take care of them.   We all have fears, things that scare the crud out of us.  I've shared one of mine.  No matter what your fear, no matter what trial you are facing - God is there.  And he will take care of you and your family, even when it doesn't feel like it's going to be okay.

I hope you all have a good week.
In Christ,
Maureen