Sour Grapes

God is not unjust; he will not forget your work and the love you have shown him as you have helped his people and continue to help them. Hebrews 6:10

Almost immediately after the initial autism diagnosis seven years ago, even before the self-pity and grief had ample time to set in, I turned to scripture to try to find out why God would choose our family for the task of raising a child with special needs.  With the help of search engines and the topical index in my Bible I was able to easily find many familiar passages that slowly began to speak peace into my heart.  The story of the blind man in John 9, David’s description of God’s handiwork in Psalm 139, and God’s very own declaration that He alone creates us each with our own strengths and weaknesses in Exodus 4:11 gave me a glimpse of hope in some of my darkest days. When I find myself beginning to question why, I am able to use verses such as these for my armor.

Currently, I am reading through the book of Ezekiel.  I’ve had to take a different approach with this particular book, because I would find myself unable to recount the details of the passages.  Summarizing a small group of verses at a time has allowed me to conceptualize what I am reading.  If not for this method of note taking I may have very likely skimmed over Ezekiel 18: 2-4 without a second glance.

“What do you people mean by quoting this proverb about the land of Israel: ‘The parents eat sour grapes, and the children’s teeth are set on edge’? “As surely as I live, declares the Sovereign Lord, you will no longer quote this proverb in Israel. For everyone belongs to me, the parent as well as the child—both alike belong to me. The one who sins is the one who will die.

Just because I may eat sour grapes, my children will not have to make pinched faces. Hallelujah!

School is back in full swing.  We are now the proud parents of a third and first grader, and to prove it here is the obligatory first day photo. 

 

Having Jacob and Maggie attend a Christ-centered school has been a major blessing for our entire family, and both seem to be adjusting well to the new school year.

Baseball and dance will be resuming very soon.  Jacob and Maggie cannot wait to see all of their teammates and dance partners.  Surrounding ourselves with other families who “get it” is therapeutic for me, too.  I’m so ready!

Maggie is fully healed from her surgery a few weeks back to remove her tonsils and adenoids.  The entire staff at the University of Kentucky hospital were very compassionate and accommodating to her particular needs.  Aside from an overnight stay for observation and a two return trips for a secondary ear infection, the entire experience was smooth and well worth it.

Today I am thankful for time for reflection and popsicles.

I’m Different

So God created mankind in his own image, in the image of God he created them… Genesis 1:27

Do yourself a favor and watch this sweet video of Maggie’s solo at her kindergarten graduation.  

Sorry, one more.  This is a clip of Jacob and Maggie’s competition last month with A Chance to Dance.

This week Jacob said something that paralyzed me.

“I’m different.” 

He was not asking me if there was something in particular that set him apart from his peers, he was stating a fact.  I had anticipated that perhaps one day in the distant future Jacob and/or Maggie would come to the realization that they have qualities (quirks) that make them standout from their friends.  I just hadn’t prepared myself for that revelation to be made at such a young age.  Jacob was not able to give any reasoning for this new understanding, but appeared to be quite disheartened.  Had he overheard some of his friends making innocent comments? Had he noticed my incessant method of helicopter-parenting? Had someone said something rude and hurtful?  I was completely caught off guard.  Rather than lie to him or go into profound explanation about his diagnosis, I looked him in the eye and assured him that he is in deed “different”.

Being different shouldn’t have to be viewed as negative.  Giving Jacob the only rationale I could think of with so little warning, I told him that he is unique because God made him that way and He makes everything just as it should be.  Fortunately this answer has seemed to satisfy his curiosity for the time being. I fear that one day either Jacob or Maggie may come to harbor some resentment or even question God’s reasoning for bestowing them with these differences.  I myself still get hurt and angry when I see my children struggle with daily tasks and communication through no fault of their own.  And I am not proud to admit that I have questioned God’s purpose on more than one occasion.  Why would a loving father enable his children to suffer?  If I wasn’t confident that He loves Jacob and Maggie more than I ever could, this very question would have the ability to shake my faith.

I hope and pray that the next time either of them come to me wanting to discuss why they are different I will be better prepared.  Perhaps the conversation will go something like this: My dear sweet child.  Yes, you are different.  But that does not mean that you are any less beautiful or wonderful (Psalm 139:14).  Before I even knew of your existence, God knew everything about you and created you to be a reflection of himself (Genesis 1:27).  I have asked many specialists why you were born different, but they do not offer an answers of assurance, only speculation.  Many more times I have asked God why he would do this to you, why he wouldn’t heal you from this disability.  My darling the truth is I do not know exactly why He allowed you to have a disability, and I am not meant to know his reasoning in this lifetime.  It is beyond my understanding. Through God’s word I have come to embrace the fact that He created you to display His works (John 9:3), and because of you I see God at work each and every day.  You were given an extra special purpose for your life – to be a light of hope in this dark world. By watching your struggles and accomplishments I have learned more about God’s love than I ever could have through a Sunday sermon.  Because you are “different” I am a better version of myself.  Yes, you are different but you are perfect.

Today I am thankful for another successful season of Miracle League Baseball and A Chance to Dance.  Tomorrow we will be missing the conclusion of baseball season in order to attend Jacob and Maggie’s dance recital.  Pictures to come!

 

Choose to Laugh

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 receive from God. 2 Corinthians 1:3-4

The saying “if you don’t laugh, you’ll cry” has become the Hall family motto over the years. Some days, actually a lot of days, I feel like it would be easy to wallow in self-pity because let’s face it – life is tough.  At times I feel like I have to make a conscious effort to find the positive in an otherwise crummy situation.  Sometimes it’s easy, sometimes it’s not.

It has now been  a little over a month since Tyler’s job and our family dynamic has changed.  Since then, Maggie has tested positive for strep throat three times.  This morning it was obvious to this self-proclaimed Dr. Mom that we were dealing with strep again (or still).  Thankfully, our actual doctor’s office has a twilight clinic and Maggie was able to be seen immediately.  After the testing positive I opted for Maggie to have a Bicillin shot since two rounds of oral antibiotics weren’t kicking the infection.  Maggie wasn’t happy with me, but she handle the shot much better than I anticipated.

Shortly after leaving the doctor Maggie appeared to be feeling a little better so we stopped and grabbed a cup of vanilla ice cream with rainbow sprinkles on our drive home.  Remember the rainbow sprinkles, they will come back into play later in the story.  She had not had an appetite all day so I figured anything in her tummy was better than nothing. After a few hours of resting at home I realized that I had run out of pull-ups for Maggie who still has accidents throughout the night so we jumped in the car and made the quick trip to Meijer.  Jacob could not have been a better shopping assistant, but poor Maggie kept her hands over her ears and kept telling me to “go faster”.

With pull-ups and Maggie in the cart and Jacob debating over the check-out candy selection, I was optimistic that we would make it back home before the approaching storm.  Quietly Maggie started telling me to “go faster” again and began to dry heave.  I panicked and looked around for anything that I could use to catch the vomit that I knew was about to come, but before I could grab one of those reusable grocery bags Maggie threw up rainbow sprinkle all over check out lane number nine and then used me as her own personal towel.  Keep in mind that we were only at the store to grab essentials, so I was not able to leave until we had finished our transaction.

I walked out of Meijer holding Maggie in my arms, smelling of curdled milk and wearing remnants of what was once ice cream toppings to what looked like a scene from The Wizard of Oz.  From the rolling clouds I thought that any second Mrs. Gulch was going to ride past on her bicycle.  At this point the logical thing would have been to get in the car and drive straight home, but that would have just been too easy.  You see, my sweet Margaret is a book lover so when she saw pages of books (aka sale flyers) being tossed around the parking lot she had a mini meltdown.  I knew that for my sanity and hers that the logical thing was not going to be our thing.  With storm clouds overhead, Jacob and I chased down this week’s circulars all while looking colorful and smelling divine.  Fortunately, the kids and I were able to make it home safe just as the storm arrived, but because of the lightning we had to wait until the storm passed to rinse off the smell of vomit.  I absolutely hate it that my girl is sick again, but I am laughing because if you don’t laugh you’ll cry.

Today I am thankful for an awesome after hours clinic and doctor’s office.  I am thankful for Lysol and air fresheners.  I am thankful that Jacob has not caught strep from Maggie, and for the medicine that is going to help her finally get rid of this infection.  We serve a good God!

He is risen, indeed!

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11

Routines and schedules are critical in our home, but thankfully Jacob and Maggie are two very resilient kiddos.  For the time being Jacob and Maggie are unaware of the major changes taking place for our family.  As the realization of our new (yet eerily similar) circumstances set in, J & M will have to adjust their expectations of day-to-day life.

With past life-changing situations I admittedly did not conduct myself by faith.  Worry and anxiety ruled my day-to-day, but this time is different. It is different because I am relinquishing all control.  Each former change that I feared was used by God as something beautiful and good for my family, and I know this time won’t be any different.  I’m not naive.  I completely expect to have times of hardship, self-pity and doubt; I only hope and pray that those thoughts do not consume me.  I don’t believe that it was God’s intent for us (his people) to live lives of ease, for without trials we would have no need to turn to Him.  On this Easter I am reminded that we each have our own cross to bear.  All of the decisions that Tyler and I are faced with are deeply impacted by the possibility that we will be caring for and supporting our two children as they grow into adulthood.  I never would have imagined that I would be Googling floor plans of polygamist homes or securing my doors with double cylinder locks to prevent wondering, but I accept that we are not a typical household.  May my fears never keep me from making the best decision for my family.

Today I am thankful for the time spent with my little family worshiping together on Good Friday, watching Jacob and Maggie hunting Easter eggs, and the opportunity to worship again on this Resurrection Sunday.

Talk To Me

God often sends us messages of hope when we need them most.  One day I can read a passage in my Bible without knowing that its significance is being lost on me.  I can return to the same passage days or months later, and the words seem to leap off the of the pages.  Earlier this week I was reading in Ecclesiastes and was captivated by the words in 3:14, “God works so that people will be in awe of him.”  I will never truly understand why Jacob and Maggie were born with a disability, but I do understand that God is using them daily to show me and others His greatness.  Because of their differences and delays I am constantly reminded of God’s ability to work miracles.  With each new phrase spoken or triumph over a sensory obstacle I am in awe.  Tyler and I even joke that at this point we should not surprised by the things the kids do or say, but this week I was reminded that their small accomplishments are gifts from above.

I have memories of both Jacob and Maggie as toddlers with no ability to communicate verbally.  Their frustration level, as well as mine, was at a high – CONSTANTLY.  More times than I’d like to admit I found myself and my children in tears because we couldn’t understand one another.  I pleaded with them to talk to me.  Now eight and six years old, Jacob and Maggie have had a combined 12 years of various intensive therapies and the progress that has been made is definitely awe inspiring.  However, I cannot help but see the irony of my daughter yelling while I was on a phone call, “Mommy! Talk to me!”  God is gracious and loving, and possibly has an uncanny sense of humor.

This week Jacob and Maggie will return to dance class after a brief break over the winter holidays.  Their performance during the Christmas recital was perfection!  I couldn’t have been more proud of their hard work and ability to captivate the stage (I’m only slightly partial).

Yellow Dot Program – Kentucky has adopted the Yellow Dot Program to alert first responders of necessary medical information.  This program is ideal for families with young children, or in our case children with special needs that might not be able to adequately communicate necessary information in the case of an emergency.  Click here to request your Yellow Dot folders.

Today I am thankful for snow days and interrupted phone calls.

 

Oh, Back to School

I have no greater joy than this: to hear that my children are walking in truth. 3 John 1:4

Tomorrow is Maggie’s first day of kindergarten.  How can this be? Actually, she should have started school last year, but Tyler and I chose to hold her out an extra year in order to maximize her hours of intensive ABA therapy.  I have the normal  typical worries about sending my youngest to her first day of school, but because Maggie has been in a school-like setting for four and a half years it is not separation anxiety that overwhelms me.  Been there, done that.  My biggest concerns for her are 1) that she transitions smoothly into a new environment with new-ish faces and, 2) that her language impairment and SPD do not interfere with learning and socializing.  Overall I am excited for Maggie and what awaits her this school year.

The anxiousness that I feel for Maggie beginning school tomorrow is trumped by the considerable amount of uneasiness that I feel because Jacob is not.  Over the past couple of months I have been kept away by the stress and worry of making the best decision for Jacob and his needs.  We have been blessed with a phenomenal God-centered school, and the past two years Jacob has had teachers and classmates that have shown him what it truly means to live like Christ.  They are the BEST! All summer Jacob has asked to go to “his” school, which has made the decision making even harder for this momma.  In order to address some social issues that we have been concerned with we have decided with the blessing and support of our school that Jacob’s start date will simply be postponed while he continues with his intensive therapy regime.

I have prayed and prayed asking God to show me the best solution, and preferably make it very obvious.  The last thing I want to do is make the wrong decision for either Jacob or Maggie because my emotions.  I have prayed asking for God to take control of the situation, because His ways are not mine, they are greater.  Now I must pray for peace in our decision and that Jacob is not upset by it.

I am always on the look out for Christian-based special needs reading material, and was excited to snag a copy of this gem last week.  Using the format of a reference book, I am easily able to find inspirational scriptures related to the areas of focus that I feel are present in life.  I’ve been keeping this book in my car, reading in between therapy sessions, and Romans 5:3-5 jumped off the pages. We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance.  And endurance develops strength of character, and character strengthens our confident hope of salvation. And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love. 

Even though I would prefer that circumstance were different, and we weren’t having to decide between traditional school and a therapy-based program I know that we have multiple things to be thankful for in this situation.  I am thankful for an intensive therapy-based program in close proximity to where we currently live.  In early 2012 our family decided to temporarily live in separate parts of the state in order to meet Jacob and Maggie’s needs.  We are now able to live under one roof in a location that is central to more therapy options than we could ever fit into our schedules.  Second, I am thankful for a Christian school that accommodates my children and their individual needs while making them feel loved and welcome.  Lastly, I am thankful for a son that wants to go to school.

**I know the first verse is taken out of context, but I came across it last week during reading and it has stuck with me ever since.

The Halls Take Flight

I said, “Oh, that I had wings like a dove! I would fly away and be at rest. Psalm 55:6

On the way to and from school each day we pass right by our local airport. Often the planes fly right overhead, and Jacob pretends that he can reach up and touch them.  He has been regularly asking to fly, so for our recent family vaca we decided to go for it.  Some may say that attempting to fly with two autistic children would be considered brave, however I tend to think that the whole idea was verging on the side of lunacy.  After weeks of social stories and carry-ons filled to the max with sensory-seeking/sensory-diffusing gadgets, Tyler and I loaded two very excited kids onto their first flight.  After reading about other’s experiences I boarded the airplane in defense mode, but in spite of all of my reservations Jacob and Maggie were perfect passengers.

 

Once we landed safely both kids were verbally requesting to go directly to the beach. Past experiences at the beach resulted in Jacob having meltdowns because of the extreme sunlight and heat.  We had prepared for our outdoor adventures to take place during the early morning/evening hours, while the middle of the day was going to be reserved for indoor activities.  To our surprise sun sensitivity was not an issue this trip. Jacob loved riding his surfboard, and Miss Maggie enjoyed looking for “baby sharks”.

Until next time, St. Petersburg!

Today I am thankful for this tiny triumphing over in our autism journey.

Humbled

 

Do nothing from rivalry or conceit, but in humility count others more significant than yourselves. Let each of you look not only to his own interests, but also to the interests of others. Have this mind among yourselves, which is yours in Christ Jesus. Philippians 2:3-5

My children inspire and humble me each and every day.  Their perseverance and determination is immeasurable.  They are my heroes.  However, the kindness and generosity of others does not go unnoticed nor unappreciated.  Due to their ASD Jacob and Maggie will always likely need to depend on someone else for their care and well-being.  The idea of Jacob and Maggie not being able to properly care for themselves is crushing to me.  Not because I will never be an “empty-nester”, but because I am always going to worry about who will be there for them when I no longer can be.  Since Jacob and Maggie have been participating in organizations like the Miracle League and A Chance to Dance, I have been comforted by seeing selfless people dedicating their time for others with special needs.  Without a doubt the stars of the games and performances are the participants, but none of the extracurriculars would be possible without the effort of the “buddies” and “partners”.

Dodgers

ACTD

ACTD

ACTD

ACTD

Last week Jacob completed the first grade and is officially on summer break.  We were blessed again with another amazing teacher who encourages all of her students to live for God.  The example that she has set for her students and their families is priceless.  I love how she referred to Jacob as her “ride or die” partner.  

Next month will be our first attempt at Vacation Bible School for the kids.  Because we will be in a setting that is familiar for Jacob and Maggie and surrounded by people who are aware of their disability, I am feeling optimistic.  VCS is something that I looked forward to every summer growing up, and I want the same positive experience for my children.

Today I am thankful for the the volunteers that help Jacob and Maggie have a chance at a “normal” childhood, teachers and therapists who love my children as their own, and for a church family that encourages us to participate in events even when it puts us out of our comfort zone (sometimes I need that little extra motivation).

Telecommunication

I will fetch my knowledge from afar, And I will ascribe righteousness to my Maker. Job 36:3

Dr. Larrow and his team at the University of Kentucky have been a tremendous help in all aspects of our autism journey.  The knowledge and personal experience that Dr. Larrow and Melanie offer is not lost on our family.  At each of Jacob and Maggie’s follow-up visits we have a group of people that are invested in our entire family’s well-being and progress.  A few months ago we were asked to participate in an article that highlighted the telecommunication program that is now in place with the University of Kentucky and the Highlands Center for Autism.  Other families with special needs or disorders will likely relate to the fact that just because services are available, doesn’t mean that the services are accessible.  Like many in our situation, we have traveled three to eight hours for doctor appointments and evaluations, but with the use of modern technology many families have been able to reduce their travel.

If ever you are in need of a behavioral pediatrician I highly recommend ours.

Here is the link to the article – https://uknow.uky.edu/uk-healthcare/uk-pediatrician-helps-families-build-greenhouses-behavioral-development

Today I am thankful for all of the resources that God has made available to our family.  He is humbling me and making me realize that it truly does take a village.

Follow the Leader

 

To him the doorkeeper opens, and the sheep hear his voice, and he calls his own sheep by name and leads them out. When he puts forth all his own, he goes ahead of them, and the sheep follow him because they know his voice. John 10:3-4

Like with most parents, Tyler and I have always tried to put Jacob and Maggie’s needs before our own.  To receive proper services and therapies we have uprooted and temporarily divided our home, left jobs, and said good-bye to loved ones on more than one occasion.  With each new move we have made I have been overcome with aching fear; not knowing if Tyler and I are making the best decision for our family.  Having faith in God’s plan was something that I had to consciously work at daily.    A year and a half ago Tyler and I made a decision that we felt was the best fit for our family and the needs of Jacob and Maggie, but I struggled more than anyone with changes it placed on all of us and questioned if we were making a mistake.  I now see clearly how God directed our path long before we were ever made aware of a need for change.  How amazing is it to worship a God who is omniscient?! A few weeks ago while I was praying I told God that I wanted and needed Him to be in control of our situation, because worrying about schools, therapies, and houses was beginning to take its toll on me.  Almost instantly I felt the stress of my everyday dealings ease, and my tasks seemed less daunting.

Last month Maggie participated in her first dance recital with her A Chance to Dance friends, and she blew me away.  I was preparing for the possibility of a meltdown, but Maggie danced her heart out!  Because she enjoyed it so much, Maggie is continuing with dance classes and will be participating in an upcoming competition.

And this picture of Jacob was too precious not to share.  Each Wednesday his school begins the morning with chapel, and he felt the desire to assist.  Oh, how I am so touched that he is at a school that embraces his differences.  Jacob will soon be joining Maggie for behavior therapy.  We are trusting that it will be extremely beneficial for him.

Today I am thankful for all of the changes that I once viewed as challenges.