Easier with Awareness

This lovely month of May is Prader-Willi Syndrome Awareness Month!  As I've been thinking about my part in spreading knowledge and fundraising, I've had my own thoughts about how people being aware of Sarah's Syndrome helps us.  So, I'm just going to share those thoughts of mine.

It's easier to be a parent of a child with Prader-Willi Syndrome when....

People like Emilee C. shoot me a quick text before an event at her house where there will be food.  These texts just simply state EXACTLY what will be served.  We are able to tell Sarah ahead of time what she can choose to eat.

Sarah 1 yr. old (drawn by Justin)

Jill W.'s of the world just jump in and start answering the never ending questions (that I've been answering all day long--11 yrs. really) when she's around.

Sarah 2 yrs. old

When the adults that Sarah tries to wrap up into giving her some type of food/treat not only say "talk to your mom" but add a little more help like:  "your food plan doesn't have that on it", "I heard your mom say no", "you already had one--no more", or how about a big old "no!"  (She listens to others better than me)

Sarah 2 1/2 yrs. old

I'm told I have more patience than he does by people like Gilbert J.  (If I hear it enough, somehow it makes me feel patient :)

Sarah 3 yrs. old

Mothers like Tasha B. teach their children how they can be a friend to other children with Special Needs.

Primary Teachers (at church) like Jake M. and Rick W. ask about bringing treats to class before it happens.  Also they help Sarah get along in the class with all those different personalities without involving us as parents....honestly so nice to not have to always be the problem solver.

Sarah 4 yrs. old

School Teachers like Mrs. Brown and Mrs. Merry have figured out how to use Classroom Fairies, Elf on the Shelf and the Easter Bunny to entice, encourage and make Sarah feel loved.

Sarah 5 yrs. old

I sit in my Mom's caregiver class and have another mother tell me she hates shaving her special need girl's legs and armpits as much as I do.

The Suzanne E.'s are willing to give Sarah her shots so I can leave over night with my hubby.

Sarah 6 yrs. old

Bishop Ginn will walk right down in the baptismal font and bend over backwards to make Sarah feel comfortable so her wish of being baptized can come true.

Young girls like Cristine E. will see past the many difference between her and Sarah and just realize they both have challenges, they can still be best of friends!

Sarah 7 yrs. old

People like Lisa T. have their own special need child but dedicate hours and hours to helping and supporting other parents and children across the nation with the same challenge.

Neighbors just smile or laugh when Sarah walks right into their house, yells down the street at them or thinks they speak Spanish even though they really don't.

Girls like Ellie B. are willing to hang out with my cute girl so I can take my other two children in peace to a party full of food and people.

Sarah 8 yrs. old

The bus drivers give you personal cell phone numbers just so you can try and prevent issues that arise in the early mornings.

Sarah 9 yrs. old

The Ben J.'s go one way down the circular halls at church so I can go the other and trap Sarah somehow and finally take her home.

Sarah 10 yrs. old

People like Jenny D. will let me call them and flip out about crazy expectation that a teacher has for this girl of mine.  Oh, and actually have real advice because her daughter has special needs too.

Friends like Holly B. send Sarah home with very large, very beautiful princess puzzles to keep her occupied.

Sarah 11 yrs. old, Spencer 9 yrs. old, Allison 4 yrs. old

Mothers like Jena S. set up play dates with their daughter and Sarah and make it successful by helping her daughter understand special needs

The Becky P.'s hide/put away food items when Sarah comes over.

They are Aware!

I've only mentioned a handful of people in our lives that are aware of us and aware of what Prader-Willi Syndrome is and how they can help.  We are just super grateful that there is support around us always!!!

Here's a little challenge...teach someone else what you know....help the awareness!

My Angel Sarah

I have this little pain in my heart and tears that swell behind my eyes that have come and gone for years.  These little feelings pop up on days that my darling Sarah comes flying down the stairs from her bus after school with bandaids up and down her legs and her glasses askew. They're there on mornings when I drop her sweet little girl self off at school, or when I go to meet her at lunch and plop down on the lunch room bench next to her.  You see, there's usually quite a bit of room-- always a space between her and the other children.

That little pain was unmistakingly very present just the other morning as I pulled up into the Intermediate School parking lot.  It's a familiar feeling when I let her climb out of the car alone and watch her do her bouncy walk on the balls of her feet right over to where the other Math Camp kids are waiting to be let in the front doors of the school.  She always bounces right up to the other girls and I can see that those girls want to act right--probably try to be a friend, but just like me 20 years ago, just don't know quite what to do or say.  They sort of stop talking and have to shuffle a little to have her not so uncomfortably in their personal space.

My heart and eyes sting.  I may be grateful that there is much more understanding of special needs in the world today and yes, there are so many wonderful accepting kids out there, but the sting is there.  When I drop her off there isn't the same kind of other children running up to greet and play with her like my other children.  It's just different.  In so many ways a wonderful kind of different.  Justin and I are so aware as her parents that these little hard moments are surrounded by really wonderful, special moments with this unique daughter of ours but our hearts do get pricked by this familiar sting all the same.

So, yesterday we were sitting at the dinner table eating, chatting, talking.  Sarah looks at me and in her very loud voice starts to tell me about a girl in her special education class.  Lets call her Kate for the sake of privacy.  So, Sarah says: 

"Kate has no friends, Mom.  I be a friend.  I sit by her.  I play with her.  I eat lunch by Kate.  She no like other girls.  They not nice.  I be her friend!"

I tell you what,  my heart swelled with an overwhelming love.  A complete love that brought different kinds of tears swelling from behind my eyes.  What an angel!  My heart stings at times because other children aren't there for my girl and now today she tells me how she's that angel friend that this other special child needs.

She's like that you know.  My darling Sarah may not be aware she's in your space, may yell way down the street at you that you need to be at church, might hug your preteen boy til he's so red it's gonna stay for a year, might stop and touch every person in a wheel chair, might ask when your baby will be born even though you don't have a baby in your belly, ask you a million questions over and over, but one thing is for sure...she's an angel to people around her.  

She's aware of you...aware of everybody.  She loves everybody that surrounds her.  She really loves them and knows that everyone has something to be curious about.  We may think she's not very sensitive socially but I think she has a innocent sensitivity that ends up being the angel that particular people in her life seek.  No wonder that miracles have kept her on this earth.  

painting courtesy of this website

President Thomas S. Monson, the prophet at this time in The Church of Jesus Christ of Latter-day Saints spoke these following words and described this beautiful painting above:

"Children’s hearts are tender. They long for the companionship of other children. In the famous Victoria and Albert Museum in London hangs a masterpiece on canvas. Its title is simply Sickness and Health. Depicted is a small girl in a wheelchair. Her face is pale; her countenance reflects sadness. She watches an organ-grinder perform while two little girls, carefree and happy, frolic and dance.

Sadness and sorrow at times come to all, including children. But children are resilient. They bear up beautifully to shoulder the burden they may be called upon to endure. Perhaps the lovely psalm describes this virtue: “Weeping may endure for a night, but joy cometh in the morning."


Last night, I saw "joy" in my Sarah's eyes as she told me about sweet "Kate" from school.  I told her thank you for being a nice friend and she just beamed back at me.  I asked her how she felt inside and she said:

"I be a friend. It make Jesus happy I nice to {Kate}!"

Yes, Sarah.  It makes your parents happy.  It makes Jesus happy and look how happy it makes you!

True Empathy

One of the most beautiful blessings that has come through my battles with Bipolar and Anxiety is the glimpse into my Sarah's head.

Yesterday I got another phone call from the school saying that Sarah was having an out right tantrum at her teacher because the little snack they were having wasn't what she expected.  I kid you not, Sarah was yelling so loud that when the teacher called I could hardly hear her.  After I got Sarah on the phone and did our little ritual of deep breathing over the phone, reminded her that her mom was on the same team as the teacher, and then helped her to see that the snack really was just right for what she needed then I could hear a calm come over and feel a smile on the other side of that phone.

These little experiences are so familiar to me now.  I always knew that Sarah didn't understand and that I needed to basically treat her like a preschooler when these things would pop up but I have a new understanding now.

I have felt and know what it feels like to not be able to control your own emotions.  I know what it's like to have a disturbing moment that is propelling me over a cliff when all it truly is is a small hiccup.  I understand feeling way stronger and much more capable of taking something on than my physical body can in reality handle.  I know what it's like to have nervous and anxious feelings take over me even though someone is there telling me it's okay.  I've felt racing thoughts over and over again when I'd like to have calm.  I know too well what it's like to feel so happy I want to dance and then the next second "snap" into an angry, sad spiral.

All of these are probably familiar feelings to everyone at some degree but bipolar, anxiety, or mental disabilities are absolutely more extreme cases.  I get this as I watch my own 3 children--two very healthy children and my Sarah with the "extreme cases."  These emotions and feelings are present in all three but if graphed out on a sheet of paper much higher peaks and slopes for my Sarah by far.

I believe that one reason why I have these battles in my own life are to be able to understand this daughter of mine.  I'm able to walk her through her own struggles in such a way now that I feel empathy, love, understanding...oh, how much understanding is there when you've felt and suffered the same way.

I never have these thoughts without thinking of my Savior.  He not only has glimpses into my head but has felt and suffered every bump, every sad, every hurt, every lonely dark feeling, every racing thought, every guilt...every weak moment of mine.  I can not even explain in these typed words how calm and peaceful I feel to know that He is "walking me through my own struggles" with complete understanding.

We are not meant to learn and struggle alone.  Just as I teach the children at our church to sing...Absolutely, our Heavenly Father has given us families to help us become what he wants us to be. Absolutely, our Heavenly Father has given us His Son to help us become what he wants us to be.  He's there.  All we have to do is use His Atonement.

The Family Is of God

Our Father has a family

It's me, It's you; all others too--we are his children.

He sent each one of us to earth, through birth

To live and learn here in families.

God gave us families.

To help us become what he wants us to be.

This is how he shares his love

For the family is of God.

A mother's purpose is to 

care, prepare, to nurture and strengthen all her children.

She teaches children to obey, to pray, 

to love and serve in the family.

God gave us families,

To help us become what he wants us to be.

This is how he shares his love

For the family is of God.

A father's place is to

preside, provide, to love and teach the gospel to his children

A father leads in family prayer

to share their love for Father in Heaven

God gave us families,

To help us become what he wants us to be.

This is how he shares his love

For the family is of God.

Blowing Things Out of Proportion

Absolutely one of the best tools I came out of my therapy with was my "ABCD" cards.  I'm constantly going back to this daily.  Justin is so great at walking me through this too.

One of the tendency's I have is to blow things waaaayyy out of proportion.  Sound familiar?

Then again, maybe it doesn't sound familiar.  Maybe you're like me and had no idea that you were making such a "huge shadow" out of something that was "really so small" or not a big deal at all.

So, I was told to take any situation or any event that I was experiencing or thinking about and write it down.  Especially those events or situations that were bringing on my panic attacks/stress.

I was taught how to check these events and situations for my subjective beliefs and then against the reality in how it really was.

(I would literally carry 3x5 cards around until I had it down)

Let me show you how it works:

A- Activating Event 

(What's going on to stimulate me?)

B- Belief 

(What is my belief about the situation?)

C- Consequence 

(How do I feel?)

D- Dispute the Belief 

(What's reality? What would an outsider with facts say? take away any emotion.)

So, what would said "activating event" be to a mother named Megan?

A- I'm leaving on an over night with my husband and my 2 year old does not fall asleep FOREVER besides waking up ALL night long!

B- My friend won't get any sleep.  She will never ever volunteer to do this again. Their whole family will be interrupted.  My 2 year old is going to be so sad.

C- I'm worried and stressed. I can't even enjoy this overnight.  I'm causing my husband to not enjoy his overnight.

D-My friend could have said no.  There's no school or schedule for this family to be to tomorrow.  They like having a little kid around again.  It's way better for the 2 yr old to have happy parents that get out--without stress!

So, what would said "activating event" be to a women with Anxiety Disorder?

A- Driving to unfamiliar airport alone/brand new parking plan.

B- I'll get lost.  I'll be late. I'll look like a crazy person.

C- I'm sick to my stomach, tight muscles, tense jaw, can't breathe, can't commit to my trip.

D- I can leave early just in case.  It'll be nice to finally figure it out.  No body else cares.  I can drive in circles until I figure it out.

So, what would said "activating event" be to a Special Needs Parent?

A- Sarah's starting to yell at me hysterically.

B- I can't keep her calm.  She's going to be like this the rest of the day.  We're going to be late.  The other kids don't need to listen to this.  The neighbors are going to think we are crazy over here.

C- I'm crazy stressed. My patience is gone.  My heart is pounding and teeth clinching.  If yell maybe it will catch her attention.

D- She'll eventually stop.  She can not control it.  She does not realize what she is doing.  The other kids know she can't control it and if they don't they will understand some day.  My calm will bring her calm.  I will regain control with acting bored and completely untouched.

It's been my experience that practicing this little exercise daily has brought more control and far less anxiety about situations that occur in my everyday life.  I don't need to carry 3x5 cards with me anymore but I promise you that these ABCD's come up all the time between me and my husband.  It's been so helpful to bring those "crazy big shadows" back down into reality of the "small sweet little mice" that they probably are.

"Special Needs" Conversations with my Allison

We were walking around Target a couple of days ago and Allison just stopped.  She was watching a little boy with severe physical disabilities.  He was wheelchair bound and couldn't move or speak.

In the sweetest little voice she asked me "what happened to him?"

I knelt down next to her right there in the aisle and said "you know how Sarah was born with Prader-Willi syndrome and we call it special needs sometimes?  Well, he has special needs too.  His body was born that way.  That's his challenge that God gave him."

That's all the explanation she needed for the moment because she said ok and just walked away.

About an hour later, we found ourselves at the park.  She was swinging on a JennSwing and after a minute she said "this is a new swing.  I've never seen one like this before."

I went on to explain to her that "remember when you saw that boy in Target?  His mommy could bring him to this park and put him in that swing.  He wouldn't be able to swing on one of the other swings.  It's a swing made for kids with special needs."  I even told her about "when Sarah was her age that she had just finally learned how to sit up on a regular swing.  When she was two and three years old she had to sit in a special needs swing too."

She sat there and then finally said "It's sad that I have a body and a brain that works right."

I remember having these exact same conversations with Spencer.  He was about that same age.  That age of Kindergarten seems to bring these questions of noticing the differences in others.

When Sarah was in Kindergarten, that was the first year that we were asked to go into her class and talk to the children about why Sarah "talked different, walked different, asked the same questions over and over and over again, why she wanted to eat all the time."

I often think that one of the huge blessings and learning experiences we gain from Sarah is being able to accept the differences in everyone.  Our children are so open to others and their physical disabilities.

Allison was at Walmart with me today and a sweet older woman drove past us in an electric wheelchair. Allison said right out loud "she has special needs, Mom!"  The people around us smiled and asked how old she was.  One lady commented "what a special child to realize that and not be rude and stare or point."

I agree.  She is a special little girl.  I know that Allison was sent to our family for specific reasons and one of them was to be Sarah's sister.  She idolizes her big sister and wants to be just like Sarah.  Allison will be so much more empathetic and understanding of others has she lives a life alongside her sister.

Not only Sarah, Spencer and Allison are learning, but Justin and I have also commented many times on how we feel so comfortable around others with physical disabilities or handicaps.  We both felt a little nervous and unsure at one point in our lives but this whole world has been opened to all of us.

Bottom line, we are all God's children.  We were all sent with different challenges.  Some you can see better than others, some are physical, some mental, some spiritual and some just hard to see but you know they are there somewhere.  I absolutely know that because of The Atonement of our Savior Jesus Christ everyone of these challenges can be overcome and perfected.  I know my Sarah will have a perfect mind and perfect body in the resurrection.  I so look forward to that day that I can stand in front of her and have a heart to heart conversation.

How blessed we are to have our special Sarah.  We wouldn't trade even the hard times for anything in the world.  I especially love that she helps us teach our other two children how to love unconditionally and to solidify that we are all important.  That they can overcome any and every challenge that they are or will face.

If you don't walk as most people do,
Some people walk away from you,
But I won't! I won't!
If you don't talk as most people do,
Some people talk and laugh at you,
But I won't! I won't!
I'll walk with you. I'll talk with you.
That's how I'll show my love for you.
Jesus walked away from none.
He gave his love to ev'ryone.
So I will! I will!
Jesus blessed all he could see,
Then turned and said, "Come, follow me."
And I will! I will!
I will! I will!
I'll walk with you. I'll talk with you.
That's how I'll show my love for you.
(Primary Song Book pg.140)

She Writes! It's a Miracle!

One of the most challenging things about being a parent of a child with special needs is definitely communication.  As the years have passed by,  I've wished and prayed that I could understand the thoughts that my sweet Sarah has.  I want so bad to know what is going on in her head.  The physical vibes or words out of her mouth are just not quite like my other two children.

It absolutely floors me when I sit and watch her put puzzles together.  Get this...she never uses the picture...not kidding.  She actually hates to have the picture even by her.  It shows me that her brain just works quite a bit different than my own or other children around us.

Just recently we have figured out that a "feelings journal" or "letter writing" does wonders for her and us.  When things are exploding or when she's frustrated we have her sit down and write to us.  It's taken us 11 years but between school, therapy, and hours of work at home we have helped her learn to write.  Check out her spelling, her penmanship and look how she's finally able to tell me what is going on in her head...

Sarah came running in from the bus the other day and before she even unloaded her back pack, jacket and such she shoved this in my hands.  It hit me!  All the work and all the prayers...it pays off!  It really does give me that wish of knowing her desires/her thoughts.

So much of this list of thoughts makes me think how much she's just like me!!!  Seriously.  It's a flood of to do list items that are over powering her and she has to have them all done this second!  Cracks me up!

So, if you have a special needs child (and you feel like I have for years...the crying, emotions or physical or nonverbal ques are just not the same as the other children around you) know that it will come.  In some way or another, whether it's through hard work to get her to write like me, a bunch of little miracles or a big old giant miracle from heaven,  it will happen!  Hang in there! Pray, keep trying and I know miracles will happen!!!  I have felt it.  I have seen it with my own to eyes.

It wasn't very many years ago when I would sit and cry because I would sit in front of my daughter and ask her questions and get silence back.  I would read her story after story and ask what she heard and get a shoulder shrug.  I would stand there feeling helpless as a little girl would scream and cry at me while stomping her feet because she couldn't get through to me what she wanted me to know.

We still have many moments of terrible communication but I see this writing as such a beautiful miracle!  I treasure these words!

Minus Sarah This Week

Since the moment my husband and I finally embraced the fact that our oldest daughter, Sarah, would not just "grow out" of her health issues and that she has "Prader-Willi Syndrome" she is "mentally disabled" or has "special needs" we have tried to create a balance in our home.  We realize we can't raise her on our own and that it takes extra care and attention to our marriage and our other children.  

I'll just say right now that it's a battle.  It's an hour to hour, day to day battle to keep our faith center.  To keep our perspective eternal.  To nurture and strengthen our children with the right mind and the right spirit.  It's not easy to consider all the feelings of each individual in our home.

One major answer to our prayers is "Lions Camp"

 

Sarah came home from a week at this camp last summer with renewed self esteem, more independence, a absolute thrill for life and could not wait to go back again.  We could see how good it was for us to have one on one time with our other two children.  It brought us all closer and taught us a lot about ourselves when Sarah is not with us.

I feel so guilty even saying we enjoyed her not being here.  How could a mother say or even think that?  I tell you that I cling to the fact that I have to focus on my needs, my husbands needs and the needs of my other children though.  Just as I have to give my all to Sarah, I have to give to the rest of us or there will be no family to work for at all.

Well, we just dropped her off again this week.  We decided that one of the ways to keep our family balanced like mentioned above was to try a vacation this time around.  Not just sit at home like normal while she was gone.

That is exactly what we did, my friends.  We got a hotel room and went to Sea World for 2 days.  We ate all we wanted, whenever we wanted. We talked and visited and played and relaxed!  We all found the vacation we needed!  It is so neat to see that Spencer has things to say constantly and that Allison can be even-tempered and not fight for attention every moment of the day.  Honestly a whole new side of our family is seen and felt when Sarah is away.

 

My mind slips to my daughter often.  I start to feel guilt creep in and then I picture her marching through camp and pushing us out of her bunk house so she could begin her week.  I know she is right where she wants to be.  I just love this girl with all my heart and soul.  I'm privileged to be her mother!  I can't imagine life without her so it is hard to sort of subtract her for a week.

Remember that you are preparing for Eternity.  

Your child's disability is temporary.  

The spirit is not disabled.