Renewing the Mind in the Middle of Painful Change - Conclusion

I believe wholeheartedly that following Christ means a pathway of bends in the road, so we cannot see what lies ahead...but trust Him one day at a time.  I had no idea whatsoever what lay ahead when Caleb was born...but Jesus led me all the way.

After the hearing, I knew the decision would move at the pace of bureaucracy, and it would be months until I heard if we had prevailed or if we did not, which meant we would have to appeal to a higher level.

It was amazing the peace I had after that hearing.  I hardly thought about the decision.  Here was the timeline:

• November 1997 - Caleb was hospitalized in Pittsburgh
• January 1998 - Caleb went into a re-opened group home near me
• March 1998 - Informed funding for those services would cease April 1; filed due process through Ohio Legal Rights Service against our local county board of developmental disabilities
• July 1998 - Feature article about case appeared in The Cleveland Plain Dealer
• August 1998 - Administrative hearing; then hearing before the county board members

It was December.  I was sitting in a conference room waiting to meet with folks running Caleb's group home to talk about a behavior plan or something.  Kevin, Ron, and Heidi walked in and congratulated me.  For what????

I had not heard yet.  But the board members reversed the superintendent's decision, and Caleb would continue to get residential services just minutes away from me.  I would remain his mother, guardian, decision-maker, advocate, case manager, and his constant.  Caleb would be assured of a life of safety, contentment, and functioning to his highest potential.

So back to Genesis 50:20:  

You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives.

So how did Caleb's autism and this decision affect the lives of others?  I don't have enough time, but here are a just a few ways.

• A new group home was created based on Caleb's needs making openings for 3 additional guys to have a place in a residential setting.  (There are long waiting lists!)
• Caleb's needs created 14 autism specialized classrooms in our local school district.
• Because of my experience and my job, I was able to walk beside a parent during her two-year journey with her son to fight this same fight. 

And I could go on...

I still hurt daily and yet the tears are what create the rainbows I've experienced to see God's hand on Caleb's life.  Without the renewal of God's word and leaning totally on Him (and not following after the idols of power/control, affirmation/approval, and security/comfort), I would not have made it.

But as the Psalmist wrote, "Surely the Lord has done this and it is marvelous in our eyes!"

Renewing the Mind in the Middle of Painful Change - Part 5

I sat around a large table, next to my attorney...and the county board superintendent sat on the other side, next to his attorney.  All witnesses, including myself, were under oath.  There was a wonderful feature article in the Cleveland newspaper about this case.  At this point, my hands were wide open and I knew just as Abraham laid Isaac on the altar...so had I placed Caleb on the altar of God's will.

The Sunday prior, our pastor preached on Nehemiah 4.  I remember it was incredibly powerful!  And somehow the pastor referred to the story of Joshua and Caleb in an illustration and stated boldly, "Caleb has a great God!"  I wrote it in the margin of Nehemiah 4.  I had also underlined passages in that chapter that spoke directly to me about the opposition I would soon face.

They all plotted together to come and fight against Jerusalem and stir up trouble against it.  Nehemiah 4:8 (NIV)

 Don't be afraid of them!  Remember the Lord, who is great and awesome, and fight for your families, your sons and your daughters, your wives and your homes. Nehemiah 4:14b (NIV)

Our God will fight for us! Nehemiah 4:20b 

Was that sermon a coincidence?  Absolutely not!  And I had my Bible laid open to Nehemiah 4 during the hearing.  God whispered peace to my heart through His word.

I had no agenda but what was in Caleb's best interest...and what was God's will.  None of our witnesses had an agenda different than that.  Caleb's neurologist testified as expert testimony without charging a dime.  All of us had only one thing to present...the truth. And the rest was left in God's hands.

Tomorrow...the verdict and the conclusion.

Renewing the Mind in the Middle of Painful Change - Part 4

After several months, the county agency providing supports to individuals with developmental disabilities and their families no longer wanted to pay for Caleb's intense programming.  At one point it was costing $300 per diem.  As the superintendent said to me,

"I'm not interested in taking care of your son so you can take Caribbean cruises."

It was cruel and a slap in the face...as if that was my plan!  I wanted three things for Caleb:  to be safe, able to function, and contentment.   That was impossible given Caleb's inherent issues in a family home (plus we were doing it alone).  Even his neurologist (a MAJOR autism expert) concurred that Caleb's needs were beyond the capacity of any family.

With the help of Ohio Legal Rights Service, I sued the funding agency who wanted to stop services.

Out on a limb for what was best for Caleb...the stakes were HIGH.  If we lost...if the agency could prove that Caleb no longer needed these services...I could lose custody.  But just as the pioneers traversed an unknown land...filled with dangers they could not predict...I refused to be deterred because my focus was on what Caleb needed, not me.

To fight for your 9 year old son to live outside of his home is so counter-intuitive as a mother.  I prayed for guidance and peace and confirmation that I was doing the right thing.  Secretly, I wanted a sign.  God brought one that renewed my mind and gave me amazing peace.

Sunday noon, after church.  Pulling into the driveway after church, I noticed a baby sparrow on the ground beneath a nest that had been built on the ledge of a 2nd floor window air conditioner at the house next door.  Getting the ladder out, the bird was placed back in the nest -- but the mother quickly kicked the baby bird out.  I called the park service to get some advice.  The naturalist on the phone told me if the baby had feathers it was probably time for the baby to go...that it was best to let nature take its course.  Then he said, "Do not worry...that mom's job is not over.  She will continue monitor the baby on the ground to ensure its safety from harm."

I hung up in tears.  God had used birds before to speak to me.  God had given me a tremendous gift of a new perspective, a renewal of my mind, convincing me that beyond a shadow of a doubt that this was part of His plan.  I never looked back.  That did not mean, however, that it did not hurt.

And I embrace the verse:

What is the price of two sparrows--one copper coin?  But not a single sparrow can fall to the ground without your Father knowing it...So don't be afraid; you are more valuable to God than a whole flock of sparrows.  Matthew 10:31, 33 (NLT)

Isn't God's word powerful?

Tomorrow -- the legal process begins.
 

Renewing the Mind in the Middle of Painful Change - Part 3

Mea culpa to my readers...yesterday I came home from work exhausted and went to bed early...so I apologize.  Back to my story...

Despite my quest to help get Caleb all I could that would serve his attainment of his highest potential (and at the same time to defer my pain and at least pretend I had some control), while Caleb obtained the best services and education possible at that time, his autism  was swallowing him whole.  At age 8, my darling boy was still nonverbal, incontinent, becoming continually agitated, becoming aggressive, becoming destructive.  He was no longer safe, no longer functioning, and definitely not content.  I did not know how to help him.  My marriage was over.  I had no idea the price my daughter had paid as Caleb took my entire focus.

Eventually, my mother and I drove him to Western Psychiatric Institute and Clinic, part of the University of Pittsburgh that had a psychiatric ward for children and adolescents with developmental disabilities and psychiatric manifestations.  He was now a danger to us and to himself.  He was admitted for 30 days for further assessment, adjust medications, and make programming recommendations for increased opportunity for success at home and at school.

Caleb's autism we now knew was extremely severe.  His issues were inherent; part of his underlying disability.  There were three things that he desperately needed to make sense of his world and to not be in so much distress.  They were:

• A controlled environment
• Behavioral programming
• And structure and predictability

He did not come home to me.  The county re-opened a closed group home (it had been a convent at one time) with one-on-one staff where the environment was controlled, structure could be provided, and they could begin behavioral programming.  This was in January.

My heart was crushed with excruciating pain of a mother who felt helpless...hopeless...

But the Lord is close to the brokenhearted and saves the crushed in spirit. --Psalm 34:18 (ESV)

And He was...

Until tomorrow...

Renewing the Mind in the Middle of Painful Change - Part 2

I wanted those days back...but they were gone forever.

Normalcy was out the window...my world became about fighting to get Caleb services, trying to keep a child safe who had no fear and very little sense of pain, advocating for him to be included as much as possible with other children, and trying to manage a child with whom I could barely communicate.  I had this highly active child who was often agitated and all my interventions seemed to fall flat and not make much difference.

When I was carrying Caleb, I knew he was a boy and named him Caleb due to Numbers 14:24:

But because my servant, Caleb, has a different spirit and follows me wholeheartedly, I will bring him into the land he went to, and his descendants will inherit it. (NIV)

Prior to his birth, I prayed that Caleb would be different...envisioning him as a man of God not afraid to be in the minority by proclaiming his Lord. How do I get my arms around this?  Lord...this was not what I meant when I prayed Caleb would be different!  Often I would have to renew my mind with:

For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.  My frame was not hidden from you when I was made in the hidden place, when I was woven together in the depths of the earth.  Your eyes saw my unformed body; all the days ordained for me were written in your book before one ever came to be. Psalm 139:13-16 (NIV)

I took my grief and channeled it into advocacy and activism...getting linked up early to others who were in the same boat only further down the river.  That is, other parents of children with disabilities...many who were also Christians.  I was a sponge soaking in all I could about Caleb's rights, the special education system, learning a whole new language, and understanding autism.  Often I used this to defer my sadness...but what I did not know was that God was preparing me and Caleb for so much more.

In time I would be able to say the same as Joseph:

You (Satan) intended to harm me, but God intended it for good to accomplish what is being done, the saving of many lives. Genesis 50:20 (NIV)

More tomorrow...

Renewing the Mind in the Middle of Painful Change - Part I

Honestly, I don't know if I can write this...  It began 25 years ago (and hasn't ended), but yet, it is still so painful.  Without this story, however, my life would be drastically different.

I gave birth to a beautiful little boy, Caleb, in January 1989.  He stole my heart and life could not be better.  I had my happy little family:  mommy, daddy, my girl, my boy.  He was bright...interactive...smiled easily...affectionate.  But by 18 months, there was reason for concern.  He had lost his words, he was falling behind developmentally, he became more agitated and harder to know how to parent him.

It wasn't until he was four that we were rescued from the quicksand of "developmental delay" only to face the 40,000 feet high mountain called autism.

I could only remember the prayer I had prayed before he was born:

For this child I prayed and the Lord has granted me my petition that I made to Him.  Therefore I have lent Him to the Lord, for as long as he lives, he is lent to the Lord.  I Samuel 1:27 (ESV)

 Yet, I was crushed...grieving and craving for the time back when all seemed right in my world.  I needed control.  I needed security and comfort.  I needed approval...reassurance that I had not failed as a mother.

I was broken.  (continued tomorrow)

Practicing Gratitude When You Don't Wanna

Hot, searing tears well up...pour out...sting...

No one warned me of the unrelenting power my children have over me...even as adults...

I hung up the phone.  Those who know me, know I've focused the past 22 years of my life on advocating for children and adults with severe disabilities AND their families...

Inspired by my courageous Caleb...

But today it all feels for naught as he is being terminated from his day program provider and the other options are not viable.  And barring a miracle (for which I still believe)...he will be at home, without structure and limited stimulation 24 hours a day.  It's complicated...a system that is to serve fails.

But my post is not about that...it was about giving you some context for what I write now.

Gratitude is easy in the nice warm fuzzies of life...it is practicing gratitude to God when the feeling is not there at all that it becomes a sacrifice...it is pure obedience.

Friday, Caleb, Edster and I went out for a drive in our mini-van.  I sat back with Caleb, helping him as he ate his lunch...only to have Caleb lay his head on my shoulder and lean up against me...for at least a half hour.

Caleb's autism tends to manifest itself like a pinball...pacing or moving to self-regulate.  Kodak moments don't come often.  But I am so grateful for those moments on Friday.

Yet...even without those moments...I will praise and express my thanksgiving to God...because He is worthy as I'm reminded in the Old Testament passage:

Though the fig tree should not blossom,    nor fruit be on the vines,the produce of the olive fail    and the fields yield no food,the flock be cut off from the fold    and there be no herd in the stalls,18 yet I will rejoice in the Lord;    I will take joy in the God of my salvation.  Habakkuk 3:17-18 (ESV)

 Caleb has a GREAT God...and I will take joy in Him.

Remembering God's Mercies When I Hurt...Part II

I really had no idea how God could break through and help me see His gifts in the pain I spoke about in my last entry...I doubted  it could be possible.  My perspective was dismal.  That was my first wrong move.



This week we had psychosocial intensive time with the two doctors doing their pediatric palliative care fellowships with us over the next 12 nonths.  On Wednesday. I was able to spend four hours with one, talking about my role as a social worker on the team, my training, educating about areas not necessarily covered in or known from medical curriculum.  She knew about my son and that a part of my acquired knowledge was enhanced by the necessity of being informed to advocate for him.  She asked, "What things became available to your son because of this, that he might not have received?"

To answer, I had to pause to think...and blessings came flooding in.  These are only some of the things I shared with her:

• At age 5, I sent Caleb to Vacation Bible School, along with his 8 year old sister, at The Chapel...a mega-church in Akron.  They had a "special needs class" but I wanted Caleb to be in a class with typical children (his severity of autism was still not known).  He was assigned a one-on-one to aide him as he needed.  Fourteen years later, I was at Barnes &  Noble and saw a woman reading a book on Asperger's Syndrome.  I walked past her and said, "That is an excellent resource."  She asked if I worked with children with autism and answered "yes."  She stated her concerns that her adolescent son might have this disorder and she did not know anyone with autism...except a little boy who came to Bible school named Caleb.  My eyes welled with tears and I said, "That was my son."  This was the woman assigned to him and she said with tears, "Ohhhh, he taught us SO much more than we could give to him.  He was such a gift!"

•  In his school, the largest public school district in our county, they were not "used to" having students with autism and most were classified as multi-handicapped placed in classrooms  that were not designed to meet the complex needs of autism.  This was not acceptable and I pushed for the district to create an educational setting for him in the regular school that met his need for environtmental controls, programming and structure.  It was so successful that Caleb was the pioneer of the ACHIEVE classrooms -- 14 of those classrooms were established all over the district by the time he graduated, all because of him.


• By the time Caleb was 9, his need for programming, a controlled environment, and structure, was becoming more than I could provide at home.  He was becoming extremely agitated, aggressive with his frustrations toward property and sometimes me...flailing out of despair rather than targeted purposeful attacks.  Unable to work and receiving no support services, I filed due process against the agency charged with meeting these needs.  I was in a full blown court case.  The stakes were high!  He needed to be in a group home setting in a regular house in a regular neighborhood -- no more than 4 in the home plus trained staff.  I must tell you this was SO counterintuitive as a mother!  I would die on the sword for him if he would have benefited - but I was expending all I had and still he was not content, functioning, or safe.   I so needed a word from God to know I was following His plan.  Faithfully, before I could even ask, he provided!

After church, getting out of the car in the driveway, I noticed a baby bird on the ground.  Looking up, there was a nest of sparrows on the ledge of a window air conditioner.  I got out the ladder, climbed up, and put the baby bird back in the nest.  Immediately, the mother flew and kicked the baby out.  Distressed...I called the metro parks.  The ranger asked if the bird had feathers...which the baby did.  He said, "Then it is most likely time for the bird to go."  I asked, "What about cats?"  The ranger said, "Oh, just because the baby is out of the nest, the mother will still monitor, feed, and protect.  Her work is by no means over."  I said, "So you're saying it's best for nature to take its course."  He said "absolutely."

I hung up the phone, eyes welled with tears.  How could it have been any clearer?  How could I doubt God's Providence?

I recalled what Jesus said in Luke:  Are not five sparrows sold for two pennies?^[a] And  not one of them is forgotten before God. ⁷ Why,  even the hairs of your head are all numbered. Fear not;  you are of more value than many sparrows.

Caleb had a great God and we won the due process.  Now living 15 minutes away...he is content, safe, and functioning at a level beyond my dreams.   This was an unheard accomplishment and became known across Ohio.  A group home was created and structured around his needs, opening opportunities for three others with the same needs yet unserved.

And my reflection and answers on Wednesday to this doctor brought many more blessings and gifts to mind, because of this beautiful soul God chose to bestow to me.  Too many to mention here.   No longer did I see the pain of Sunday...but only the mercies showered on me over the years and God's gift of remembering and reflecting on it with the doctor.

With gratitude,

Remembering God's Mercies While Hurting...Part I

Sunday was devastating!  Church was wonderful...time with my husband out shopping for new polos and oversized T-shirts for my son, Caleb.  Have I told you about him?  That would take a separate blog alone!  But let me try...briefly.



Caleb, named after Caleb of the Bible who chose to stand in the minority and about whom God said, "has a unique spirit and serves me wholeheartedly," is 23 years old, has severe/profound autism, nonverbal, functions at an 18-month level, and lives in a group home with 3 others; it is also staffed 24/7.  He has extroadinarily high  needs of environmental controls, structure, behavioral programming, and predictability in order for him to be safe, content, and functioning...equating to the best life for him as possible.

Very often on Sundays, we get Caleb and take him to his favorite place - McDonald's - and go for rides in the country.  But this past Sunday, going to the group home, I was flooded with pain, hurt, and anger...as so many of the basics with regard to staff providing care responsibilities had been totally neglected and the competence of staff was very questionable.  In truth, except for one staff person where I am sure the issue is competence, the true issue is laziness.



So...how do I find the gifts or look for the mercies of God when I am blinded by righteous indignation that Caleb, dependent for full assistance with everything, is not served with the dignity and the quality of life he is entitled to?  Well, stay tuned, as my next entry will show you how this was possible and how God incredibly reminded me of His providence and gracious mercy in the middle of my hurt.

With gratitude,