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.