After a week we determined that it was time for Connor to get reconnected with school. The first step was to get Connor in to "Hospital Home Bound." This was a program for students who are too sick to be at school. The Administration of the Elementary School made my wife's life hard. To participate in the program parents of students who they would like to have in The Hospital Home Bound Program, had to personally request medical records to be sent to Connor's school.
It was on page 27 of the school handbook. The school districts we worked for in the past and our children attended always requested medical records themselves. This delayed Hospital Home Bound for our son by a week. My wife was made to feel like she was a horrible mother for not reading the whole handbook and knowing she had to request medical records herself. I have worked for the school district for 4 years now and have yet to read the entire high school hand book in spite of the fact I have helped update most of it. The handbooks of most schools are far too boring to read through from cover to cover. School Handbook are meant to be a reference book.
We still were looking for answers as to what was the cause of Connor's illness and memory loss. We knew that every time our son had a grand mal seizure he had brain cells die. We needed to first find out what was causing the seizures grand mal and petite mal and then find out what caused the illness and memory loss to begin with. We took our son to Atlanta several times to specialists at a seizure disorder clinic there. Unfortunately he never had a seizure when we took him there even after a repeat MRI. They even tried to induce seizures in Connor but could not get him to go in to one. They could only identify and help him if the medical people witnessed his seizures. What would frustrate us the most is that frequently he would have seizures on the 2 1/2 hour trip to and from the clinic. Often times he would have more than one seizure.
We were offered meds for him but the side effects to the meds offered were as bad or worse than what he experienced. What needs to be understood is this. My wife and I believe meds are great when they are needed and taken for the right reasons, but to just throw meds at a problem without knowing for certain what the problem is, is wrong. We were looking for answers that we never found. We are still looking for those answers.
Once Connor finally was involved with Hospital Home Bound program he did well. Over the next three weeks Conner was able to relearn so many things. At first learning academics was slow and then what was to be a common occurrence occurred, something that we were never able to understand brought a chunk of his memory back. Sometimes it seemed like a word, other times it was a smell, still other times it was something he saw. Just as Connor lost chinks of memories he regained chunks of memories though in considerably smaller chunks. This speeded up relearning academics though in an uneven manner. Social memories, memories of his classmates, his personal memories and memories of people in his life continued to be slow. Physically Connor was still in recovery as well but recovery in this area was slow and he tired easily.
Connor quickly bonded with his Home Bound teacher and so was very upset when at the end of three weeks it was determined he was ready to come back to school. He was very much afraid of how people would react to him at school because of his seizures. I explained to him that teachers and staff in the Special Education classes had staff that were trained to work with students who have seizures and that he would not be alone in having them. We would face his regular class later.
It was decided that Connor would be reintroduced to school slowly by bringing him in to the school environment through Special Education. He was to spend a week to ten days being assessed and taught before reintroduced to the regular class. He was terrified but bravely agreed to at least try to do his best at school.
The Special Education Staff was especially kind to him. His academic testing showed a remarkable recovery to his memory for academics. It quickly indicated that he did not qualify for special education though we could have pushed for 504 based upon his grand mal and petite mal seizures. Looking back we would have been wise to ask for him to be placed in 504 because his seizure disorder would have qualified him for 504. As it turned out Connor did not need to be on a 504 plan. Being on a 504 plan would have allowed his recovery to be a little more time for recovery. Just one of those things we wish we would have thought of but by this time we were just too worn out to think things through.
The decision was made for Conner to go back to class a half day at first. This would allow Conner to slowly get used to being in his 5th grade class. Connor's 5th grade teacher , his Hospital Home Bound teacher, my wife and I worked together to help Connor be reintroduced to his class. He began going to his class a half day. His Hospital Home Bound teacher teacher came to help him 2 days per week.
His teacher prepared the class before Connor came back to class. As best as she could she explained to her students what Connor had been through, and what he was going through. Most of his peers were extra kind but all were at least a little bit afraid of him.They were afraid him for at least three reasons. He was only in class half of each day at least at first. He had grand mal seizures and then could not talk for a half an hour after each seizure. He acted differently. As hard as they tried not to be they were a little afraid.
I tried to help his memory of people in his life and of his social experiences by bringing him along with me when I sold tickets to sporting events for our school. His peers would approach him a southern friendly way greeting him and asking him if he remembered them. He was so afraid he held my hand and hid behind my back for the first three weeks and little by little he grew braver.
By the second week of October Connor let us know that he was determined to go Trick Or Treating. Houses in our neighborhood are a good ways from each other and so we tried to discourage it. When Halloween arrived Connor got dressed up and walked the length of our driveway and then he got worn out, too tired to move forward. I ran to the end of the driveway and helped him back to the house. He and I walked back together. I could not tell what he was thinking, only that he said I just can't Trick Or Treat. My heart was heavy and I felt a deep sadness.
Ten minutes later my older daughter and Connor called out to my wife and I saying "Mom, Dad come here." Expecting the worse we sprinted to where they were. My daughter said "Connor has a great idea. tell them Connor!" Connor asked if he could dress up in camouflage, hide in the ivy, be covered in leaves, jump out at older children, teens and adults and yell to scare them?" I said "Only if your mother and I can watch! "This was the spirit of our son, this was our son's twinkle, his zest for living, his sense of fun, this was our son. Our son was back!
My wife and I hugged each other tightly and celebrated a miracle! Whatever terror almost took our son away from us failed in it's attempt. The spirit that was our son that we hadn't seen in so long was back and the laughter coming from my children out in the front of our home proved that our son was back. Our lives were changed forever but our son was back. The memory of this Halloween Eve was forever tucked in the hearts of my wife and I to be brought out whenever we forget to be thankful. Connor still had a road to recovery ahead of him but for us that Halloween Eve will always be remembered as the night our son came back.
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Did you ever figure out what was causing the seizures?
I am very impressed with how courageous Connor is and how strong your family is. It sounds like you did the utmost to make sure he got what he needed.
How very frustrating, and typical I think, that the doctors discount any seizures that they don't see. It's written into a typical "SOAP" intake form: subjective/objective/assessment/plan. That is, YOU are the subjective one, THEY are the objective ones. The patient and family are presumed ignorant before they walk in the door. That's my observation. But of course, I'm subjective!
It was very heartwarming to hear about Connor's Halloween! "Our lives were changed forever, but our son was back." Very fitting concluding paragraph to this part of the story.
God bless you all. Still praying for a happy ending.
You and yours are in my prayers
hugs to all
It does sound like things are going good for the little guy.
Praise God!