“I’ve never been well.”

After 20 weeks of morning sickness/all day sickness being pregnant with the girls, I told David, “Honestly, I don’t remember a time that I was not sick. Even Jim (2 years old at the time) mimics me throwing up all the time. This is how our son sees me. Truly, I’ve never been well.”

I could tell David was trying not to laugh as he hugged me and kissed my head, but he has also never let me forget it! He should have known then what he was in for when I get sick.

This past week Sarah and I came down with the flu. This is when sharing is bad! The flu is hard especially for a semi non-verbal special needs child because you don’t know how they are feeling.  Thankfully, Sarah’s case was not that severe.

Me, on the other hand, I was lying on the couch with a water bottle in one hand and gripping the thermometer in the other. When I am sick I like to do two things:  #1- Call my mother to let her know. It just makes me feel better. #2-Take my temperature several times.

David understands the first one, but the second one puzzles him, especially as I call it out to him.

“100.3!” in the raspiest of voices.

“Now up to 101.1!”

“102.5!”

And later in the evening, “Oh wow. It’s 102.8.”

“Why do you do this? Why do you keep taking your temperature? Do you realize you’re hugging the thermometer?”

“It’s my validation. It justifies to me that my insides match how my outsides are feeling.”

You can’t argue with that reasoning!

It reminds me of how Kendall and I love to watch those makeover shows. The person comes in looking frumpy or ridiculous and the stylist gives the person new clothes, new hair and make-up and then at the final reveal they look amazing. Sometimes, though, the person opens their mouth and what comes out does not match the outward transformation. (Yikes!) Kendall looks at me and it is a good discussion about inner and outer beauty.

Luke 6:45b, “...his mouth speaks from that which fills his heart.” (NASB)

I Peter 3:4, “Cultivate inner beauty, the gentle, gracious kind that God delights in.” (The Message)

It’s true. When I think of the women in my life that I think are truly beautiful, it is not their outward beauty, per say, but a reflection of their inner beauty. For example,

“When my friend laughs her eyes dance with joy. They just sparkle. I love that.”

“With all that she has going on in life right now; my friend’s face beautifully shines peace. I want to be more like that.”

“I love how after spending time with her I feel encouraged and uplifted. She is the kindest person I know. I love how you see her loving heart when she talks to you.”

This Fruit of the Spirit (Galatians 5:22-23) inner beauty matches the outer beauty of these friends; a validation of true beauty. This is what I want for my girls.

When Kendall entered Middle School I wanted her to know what voices were the ones to listen to in regards to her beauty. I painted a plaque with Psalm 45:11 on it and hung it by her mirror. I want her to see it every time she gets ready in the morning.  It reads,

“The King is enthralled with your beauty; honor Him for He is your Lord.” (NIV)

Regardless of what the world says beauty is, we want her to know that inner beauty is more important and that the King of Kings, her Creator, is crazy about her!

It is the only validation she will ever need.

Well, the new job did not work out.  As if a character in a story, I had a foreshadowing statement that I should have paid more attention to when it occurred. I thought it was profound when it was said to me.  It was just like in a movie when the music starts to play to signifying to the audience that this was an important statement and to pay attention to it.  Now, I look back and shake my head that I didn’t pick up on it.

Pastor Josh was exactly right.

Pastor Josh, the youth pastor at the church, said to me, “Jill, may I say something to you?  I think that working is good for you to step away from your life with Sarah and just be ‘Jill’.  It is a place for you to be you.”

I agreed with his statement.  I did enjoy being ‘Jill’ and work has been an escape from the stresses of Autism, but I still thought that helping other parents with Autistic kids would be a good fit for me.

I was wrong.  I was very, very wrong!

I quickly and harshly found out that my idea of bringing comfort to people with the same comfort I received from the Lord (II Corinthians 1:3b-4) was not what these parents were looking for.  It was extremely emotional listening to these parents (some who were just plain nasty) and then coming home to Sarah wetting her bed or having one of her crying fits.  I never got a break from the world of Autism and it took a toll. I tried to make this work! I didn’t want to be a failure. I have grown up with the phrase “A Butler never quits” but I also knew that this was not the right fit for me.

Also, this job turned out to be a full-time job.  My friend thought it could be part-time, but her business is booming!  She is an entrepreneur and a very gifted businesswoman.  I have truly enjoyed getting to know her better.  Yet, this job has quickly shown that this position is full-time and for the time being could not be done from home.  I need her and access to client files to perform this job.

When I shared my heart to her, the owner totally understood.  She agreed that sometimes being too close to the situation actually keeps opening up the wound.  I realized that my Autism wound is still scabbing over and talking all day about the hardships of Autism and then dealing with life with Sarah became too much and my scab became very raw. (And besides, that the job requires more hours I can give.)

Next week I will finish out my duties and I will be unemployed.  We sure didn’t see this in our future!

I am thankful the Lord does know! To be honest, I have cried so much these past few weeks, more than I would care to admit. I miss my joy. During my quiet time with the Lord, I poured out my heart asking Him why this happened.  I came across Psalm 94:14-15 and it truly jumped off the page.

It says:

“When I said, ‘My foot is slipping’, Your love, O LORD, supported me.

When anxiety was great within me, Your consolation brought joy to my soul.”

Right now I feel like my foot is slipping, but I am caught by His love!  While I don’t understand, His consolation brings me back my joy and heals my wounds. So thankful!!

Thank you for your continued love and support for us on this journey. Tears fill my eyes (here I go crying again!) that I have people lifting Sarah and us up in prayer.

David also is starting a new job next month and will be traveling more. I am going to wait and see what that means for our family, but will be on the lookout if the Lord opens a job opportunity to me.

Another twist on our Autism journey, but I am thankful our Lord knows the way!

 

 

 

Monday I start a new job. Funny thing is, I never applied and never interviewed for it. I’m still in shock how it all unfolded. It happened so quickly in these last three weeks!

The job, you ask? I will be the Office Manager/Administrative Assistant to a company that provides speech, occupational therapy, physical therapy and ABA therapy (the same therapy we do for Sarah) for special needs children. I will be the voice on the other end of the phone when parents call looking for help for their special needs child. Isn’t it amazing how God works?

II Corinthians 1:3-4, “Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.”

This job will allow me to work from home if I need to for Sarah. All I need is the company cell phone and my laptop and I can work anywhere. Next summer, with Jim off to college and the other kids busy with their activities, this will be a huge blessing!

Though, this was not an easy decision because I loved the people I worked with and I enjoyed being involved in a ministry. I cried out to the Lord and pour out my heart to Him asking for direction.

I thought of Isaiah 48:17b, “I am the Lord your God, who teaches you what is best for you, who directs you in the way you should go.” and

Isaiah 40:11, “He tends His flock like a shepherd. He gathers the lambs in His arms and carries them close to His heart; He gently leads those that have young.”

“….He gently leads those that have young.” This is so tender of Him because you just can’t move quickly with little ones! It reminded me of when I went to the store when I was 7 months pregnant with Jack. I had my 16 month old twin girls on each hip and had 3 year old Jim holding on to my shirt hem. What a sight! I got some stares, that’s for sure! A ‘quick trip to the store’ was an exhausting production!

Even though my kids are older now, I still will always need to care for Sarah. I love that He continues to gently lead because it is still hard for my heart to move quickly.

What a blessing that the Lord leads like a shepherd. He goes before me and directs me. It became clear that He brought this new job to our family and now I will be helping parents find hope and receive the services they need for their children.

There is a song by Chris Tomlin called “Good Good Father” and there is one verse that impacts me every time I hear it. It says, “As you call me deeper still.” Just when I think my faith is at a good place, He gently leads me deeper still to trust and to follow Him.

He is a good, good Father and when I start my new job, this new adventure, He will continue to gently lead me deeper still.

Thank you for your on-going prayers for Sarah and for us! We truly see a huge difference in her!

I have had the blessing of attending the same church my entire life.  The Lord led my parents here in a very sad way; my grandfather died during a Sunday evening service at this church.  Three weeks later I was born and my parents moved to this area and started attending our church to be supportive of my grandmother.  In many ways, my church has become my home away from home.

When Sarah was first diagnosed with autism, it was if my church family also received the diagnosis.  The love and support was amazing!  We had very few special needs kids attending our church and we had no real procedures in place.  Our church family, lead by our Children’s Ministry Director, Bonnie V., knew we needed something in place for kids like Sarah and the “Helping Hands” ministry was born.

“Helping Hands” allow us to attend church services together or do other things, such as serve as leaders in our youth group.  We come to church with our bag of goodies (coloring books, toys, treats) and we know Sarah is getting the one on one attention she needs.  I can’t even begin to name all who helped watch Sarah!  We had high school students, college students, moms, dads, grandmas, teachers and speech therapists.  Some had experience with specials needs children, others just wanted to help.

All I consider to be beloved friends now.  There is a special place in my heart for those who love and desire to help who have come alongside us on this journey to ease the burden. Their hour of service was our sanity and our time to refuel.  The Helping Hands ministry is such a precious gift when your spirit is dry and your soul is weary.

Currently we have the most dynamic duo in Pam and Sarah V.  These two ladies for years have been watching Sarah for us.  Pam has such a sweet and calm presence about her.  She and Sarah “chill” and Sarah loves her time with Pam.  Sarah V. is the master of crafts and Sarah enjoys their creations.  I love when I come to pick up Sarah and they are intensely working on a project.  I feel like I am interrupting something precious–something that has slipped past autism and has allowed our Sarah to break forth.  These ladies love Sarah and are such a blessing to us.   Watching Sarah can be exhausting and since she is basically non-verbal it is a very one-sided conversation.  An hour of care is taxing but they do it without complaint and with such joy.

I found this quote from Emily Colson, daughter of Chuck Colson and the author of Dancing with Max: A Mother and Son Who Broke Free:

“Many believe autism has reached epidemic proportions. We may need to build bigger schools to hold them all, but we don’t need bigger churches. When God reaches for His spiritual tool belt, He builds love and compassion in us. And when we let God grow our hearts, there’s room enough for everyone.”

I am thankful for Pam and Sarah V. (and the many others who have worked with Sarah-bless you all), let God grow their hearts.  Their compassion for our girl is something that the world peeks at with great wonder.   Why do they do this thankless job?  It is because God took His tool belt and created something beautiful!

They are the Helping Hands, but it is us who have the grateful hearts!

“Then King will reply, ‘I tell you the truth, whatever you did for one of the least of these brothers of mine, you will do for me.’”  Matthew 25:40

Have you ever gone through a season in your life where you feel like you are being hit from every side?  You feel like Job, where over and over he heard bad news from a messenger which ended in the line, “…and I am the only one who has escaped to tell you!”  (Job 1:15-17, 19) You think nothing else can go wrong, and then you see the messenger in the distance coming towards you.

While the past few weeks have not been as bad as Job had it, they certainly have been pretty rough for my family:

• my Dad’s horrific knee surgery that resulted in infection and the long painful road he is facing,
• Jim’s knee injury which resulted in medical and therapy bills that we were not expecting and him losing three weeks of his senior season,
• a 3^rd sewer pipe break in 2 ½ years in our basement (nothing like starting out your day finding 2” of standing water!) and the headache of dealing with not having a kitchen sink/dishwasher for 2 weeks– not to mention the cost of this repair,
• and a car expense we were not expecting.

Whew!  I am looking for the white flag of surrender!

It reminded me of a story my friend, Loren W., shared in Bible Study.  We were talking about peace and she shared this story of a king who asked his kingdom to draw him a picture of peace.  It came down to two contestants.  The one painted a picture of a lake that was picture perfect.  The lake was calm, the sky was blue and the mountains in the distance were a beautiful backdrop.  Everyone in the kingdom thought this was the perfect picture of peace.

The king looked at it and then saw the other entry.  This painting had a rough and rocky mountain with a thunderous waterfall.  It looked scary and powerful.  The king looked closer and awarded the prize to this painting.

The people were puzzled and wondered why he chose this painting and he explained that in the midst of this mighty waterfall there was a bush in the rock cracks.  In this bush the artist painted a mother bird on top of her eggs fast asleep in her nest.   He went on to explain, “Because peace does not mean to be in a place where there is no noise, trouble, or hard work. Peace means to be in the midst of all those things and still be calm in your heart. That is the real meaning of peace.”   (A Picture of Peace, Author Unknown)

I have been thinking of this story a lot lately, especially as this summer we went to Niagara Falls.  The sound of falls was deafening!  Just to be so close to a mighty waterfall and the roar and pure unbridled power of it, I was awestruck but it certainly did not conjure up a picture of peace for me!  Maybe that is why I have been thinking about this story so much because in the midst of the chaos the momma bird made a choice to find peace.  Wow, feels like my life right now!  I want to be like that momma bird and find rest and peace in my Savior in spite of my surroundings.

“Find rest, O my soul, in God alone; my hope comes from Him.” Psalm 62:5

“Peace I leave you, My peace I give you.  I do not give to you as the world gives.  Do not let your hearts be troubled and do not be afraid.”  John 14:27

Update on Sarah:

Today we had her annual IEP (Individual Educational Plan) and it went GREAT!  What a difference a year makes!  The teacher said Sarah rarely cries, is easily redirected and hasn’t had a meltdown at all!  They are working on job training skills and Sarah is very happy.  We are so grateful for your faithful prayers for her!  Bless you!!  It was 5 long years of a very dark time with her behaviors and we cannot thank you enough!!

I have my Grandmother’s clock next to my bed.  My Mom’s mom died over 18 years ago, but this digital clock still continues to be my faithful companion on my night stand.  My Grandma Palms loved clocks; she loved the different faces of the dials.  In her little condo you found clocks on the wall, on the bookshelves and even on top of her old record player.  If that wasn’t enough, she always had a watch on.  It was flipped over so the backside faced up and turned in so it rested on the inside of her wrist securely holding her Kleenex tissue.  I always loved that she did that.  When she passed away I took two clocks, the digital clock that was on her record player and an anniversary clock that was on her bookshelf by her front door, to remember her by.

I was looking at this digital clock amazed that it has been 18 years since she passed away.  At that time, I was expecting my firstborn and now he is entering his senior year in high school and all the excitement and changes it brings.  I can’t believe how fast time has gone by!  How can this be?

I remember when Sarah was first diagnosed with autism and over and over again we heard the importance of early intervention.  Specialists said the most gains we would see in Sarah would be before the age of 6.  After that age, while she could continue to improve with therapy, the gains would not be as significant as before.  For that reason, they stressed intense therapy at that early age.  We did and they were right.  Then I blinked and my six year old girl is now 15.  How can this be?

“Teach us to number our days aright, that we may gain a heart of wisdom.”  Psalm 90:12

Right now, I am not numbering my days as I should.  Summer is ending and just thinking about the back to school schedule is making me hyperventilate.  I am not ready for the busyness of fall and the many firsts and lasts of having a child graduate from high school will bring me.

In my Bible’s notes, it says that the word ‘gain’ could also be translated as ‘harvest’.   ‘…that we may harvest a heart of wisdom.’  A harvest is the end result of something that took time to mature, to grow.  It is the outcome of hard work and patience.  It is something that is treasured.  It is something that is celebrated.

Maybe that is why my Grandma had so many clocks; that she would be reminded of the importance of time!  This fall, I want to start cultivating my heart’s soil for my own harvest time.  I want the Lord to teach me what it means to not just “get by” or “survive” this season of my life, but to truly enjoy what this season brings.  I’m praying for Him to produce a bumper crop harvest of a heart of wisdom full of treasuring the days He gave me!

We truly thank you for praying for Sarah (and us!).  We are so deeply, deeply grateful!!

**September Praises and Prayer Requests found under the tab at the top of the page.  Bless you and thank you for praying!!

Sarah loves music. She sings more than she talks. In fact, as I type this she just sang a phrase from “High School Musical.” (This is interesting, since she hasn’t seen that movie in months.) I have used this to help her learn her address and phone number and it has worked. In fact, the whole family learned our phone number this way. Jack recently shared with me that when he was in kindergarten the teacher asked for his phone number. Without skipping a beat, Jack sang it back to her. He said the other kids looked at him and he thought, “What? Doesn’t everyone sing their phone number?”

Music reaches Sarah in ways words alone can’t. If she is happy a tune is bound to break forth. It is delightful to hear her sing and it can be quite comical when she sings the wrong words to songs.

Other times, music helps you see into her heart….

Sarah has amazing aides at church that allow us to attend the church service.  (One day I will write a blog about these amazing people! It brings me to tears with their selfless gift!) One aide, Joan, was watching Sarah on Wednesday night church. Knowing that Sarah loves music, she took Sarah into the sanctuary where the Praise band was practicing for the following Sunday’s service. She and Sarah sat together as they played, but she was taken back when she looked over to see tears streaming down Sarah’s cheeks.  Joan wondered what was wrong.  Sarah wasn’t upset; in fact, she was listening intently to what they were singing. When the chorus was sung again, she saw another tear trickle down Sarah’s cheek. Joan was so moved and she took out a piece of paper and wrote down the chorus to share with me.

The piece of paper read:

He knows my name
He knows my every thought,
He sees each tear that falls
and hears me when I call.

(“I have a Maker” (He knows My Name) by Paul Baloche)

Psalm 56:8, “You keep track of all my sorrows.
    You have collected all my tears in your bottle.
    You have recorded each one in your book.”  (The New Living Translation)

If you know me, you know I cry. Autism has certainly made my heart a tender mush which actually is a good thing and I am thankful to Him for it.  I tease, though, that when I read this verse that He must have a pretty big bottle with my name on it!  It is not a bottle; it is more like a vat! 🙂  I’m thankful that even with autism; Sarah knows this truth, too.  The Lord knows our Sarah and each tear she cries. He knows what she is thinking when we don’t have a clue. His eye is always on her and He hears her (and me) when we call out to Him.  That is music to my ears!

**August Praise and Prayer Requests can be found under the Praise/Prayer tab at the top of the blog–thank you for praying!!

An Autism meltdown.  There is nothing quite like it.  Comes with no warning, it is a firestorm of anger and frustration and then it dissipates leaving you baffled and weary.

When Sarah was 3 years old these meltdowns were frequent.  One moment she was swinging on the swings, the next moment she was charging at me.  She would lash out at me with her arms and legs in a wild frenzy, all the while screaming out in frustration.  I truly had no idea what caused this sudden change.  The only thing I could do to protect her and myself was to scoop her up and bear hug her.  I would rock her back and forth, sing in her ear and pray and cry out to God in desperation to calm her heart.

She fought me.  Boy, did she fight me!  She did not want to be held and it became a battle of the wills as I tried to hold on to my bucking bronco.  If she could manage to free one arm she would start hitting me again and I would tuck that arm in again as I rocked back and forth and “shhh” in her ear.  I tried the trick that my dad used on me when I was a child and refused to go to sleep; I would take slow, deep breaths.  It was a way to calm her down (and myself!).

It could take 5 minutes; it could take 15.

Slowly, I would feel her body begin to loosen.  I felt her giving in and letting me win.  Her hands that were clenched fists, slowly unfolded to little fingers stroking my back.  Her screams became less and less as she quieted down to listen to me sing or whisper my love for her and then she let out one giant sigh.  She would look in my eyes and then I knew my Sarah had come back to me from that dark place.  Sometimes she was so worn out from the episode she would fall asleep in my arms.

Why did she resist me so much?  Why did she give me such a fight?

Zephaniah 3:17: “…He will quiet you with His love.”

There are times my actions towards the Lord are much like a Sarah meltdown.  It is not pretty as I come to Him as a ball of anger and frustration.  Thankfully, He is never baffled and is never weary of me.   He holds me close, never letting go and whispers His love for me.  It can be a battle of the wills at times.  When I finally give in and loosen my fists to open hands to Him, a wave of peace floods my soul.  He calls me back from the dark places and reminds me I am His.  There is nothing quite like it.

Sarah has had a remarkable year!   The teacher and I pass back and forth a spiral notepad to let each other know about what is going on with Sarah.  David and I have seen such a dramatic difference in her and we know it is because of your faithful prayers!  Thank you!!

Here are some excerpts from the teacher (unless specified it is from me) this past year:

October 29: “Sarah had a good day.  We finished (decorating) our pumpkin and she didn’t want to leave its side.  She was so stinken cute!  (Teacher sent me a photo of Sarah doing her school work at the group table-instead of her desk- so she could be next to the pumpkin.)

November 12: “We had an assembly today, “Music around the World.”  Sarah really enjoyed it.  At one point she ran up to the stage and started banging on the drums!!  She waved her arms in the air and shouted, “Bongos!” then she went right back to her seat.  The performer asked everyone to applaud her because she did a great job and she stood up and took a bow!  It was awesome!”

December 2: My note to the teacher: “(This morning) she keeps yelling, ‘Good Morning, Freckles!’ to me (I have freckles).  She thinks she is so funny!  Slept better last night.

Teacher’s reply: “Sarah was in such a good mood.  She talked about you all day. 🙂  She kept saying, “Come on, Mama!  We got to go do the chores!”  Ha Ha.

December 9: Sarah was in a really good mood.  At one point she jumped up from her chair and screamed “Mom!” and rambled on about your beautiful arms. 🙂  Have a good night.

(She loves my arms; I don’t know why!  They are NOT beautiful!!)

December 11: “Sarah did good today.  Just a little sassy when we played bingo-she was cheating!  ha ha”

December 17: “Sarah had a great day. We had winter carnival-lots to do and see.  NO tears or whimpers all day! Not once!  Whoop Whoop!”

January 23: My note to the teacher: “Good night overall.  Screamed last night-hasn’t done that in a long time.  She was mad.”

Teacher’s reply:  “Sarah had a really good day.  I asked her if she screamed last night and she said, “Yes, I screamed in the house.  I’m amazing!”

March 4: “Sarah has been doing a fantastic job here at school.  The Behavior Specialist came to me to ask my opinion about Sarah’s behavior plan, if it is still needed or not.  Sarah is easily redirected and when she does start to cry she takes out the family photo and is happy to see the faces and sings.  The data shows her crying is at a minimal and does not go beyond 15 minutes.  I am surprised if it lasts a minute!  She has only dropped to the floor once for me and does not pick her nose.  She even transitions with ease from one subject to another or room to room without a problem…we are all so very proud of Sarah.”

April 15:  “Sarah had a really good day today.  We went outside for a while and she was practicing her dance moves! You rock, Sarah”

April 23: “Real good day.  Very happy.  She is doing so good.  She used to tell me ‘no’ when I asked her to do laps (they walk the hallways around the school), but now she asks for them!”

May 8:  “Sarah had a great week.  She has been talking a lot about Daddy today.  I asked her if Daddy has pretty hands and arms!  She laughed so hard! 🙂

My reply:  “All weekend she said he did (have pretty hands and arms) and I said, ‘Hey it’s Mother’s Day, not Father’s Day!’ and she would laugh!”

May 19:  “Sarah had a really good day.  One of the boys was having a hard time…and was upset and started to act out.  Sarah said, “Suck it up and be a man!” lol She is so funny!  She was also saying, ‘Time for worky worky, don’t be a turkey.’”

As you can see, Sarah talks a lot more at school than ever before (and much more than she does at home!).  This past year we are seeing such positive behavior that we have not seen in a very long time!

“Answer me when I call to You, O my righteous God.  Give me relief from my distress; be merciful to me and hear my prayer.”  Psalm 4:1

Praising the Lord for His mercy and for answering our prayers for Sarah!  It truly has been a year of encouragement!  Bless you for coming along side us on this journey!  Our hearts are overwhelmed and so deeply grateful that you would pray for Sarah and us!

June Praises and Prayer Requests are under the Praise/Prayer tab at the top of the blog-thank you for your continued prayers!