Life is not easy. Especially when you are in a family of invisible illnesses and disabilities. It can be serious, funny and downright hard! But we make it. Just like everyone else. We just do it in a different style.

Saturday, July 25, 2009

Spontaneous Recall and Then It's Gone

I found this post written back in July. It was the beginning of a time of introspection. I went away for awhile because I had to make some hard decisions, and in the end, only the person and their God can help them move in the place they need to be. Read this and understand.


I am sure there is a more medical, scientific name for what happened in our house last night, but all I can call it is spontaneous recall.

It was an ordinary evening. Dinner was done, the kids were in the living room watching television. I was at the computer, trying to download all the research for a paper due Sunday. I had just reminded my son to go take his shower. If you are not familiar with my youngest son, he has dysautonomia/POTS, a rare autonomic nervous system disorder. It is not fatal, but there is no cure. One of his worst symptoms, one that has led others to think he actually had suffered from Traumatic Brain Injury (TBI), has been the complete loss of memories of his childhood. Coupled with that was the inability to remember anything short-term either. He needed a phone with constant reminders, even to remember to eat lunch.

It has been a heartbreaking FIVE years since he first told me he thought he was losing his mind and couldn't remember anything. No one could give us a definitive answer, and back then as his health continued to deteriorate, they even looked for tumors. A neuropsych evaluator said that she only saw deterioration like this in terminal, progressively degenerative disease. His therapist counseled me to treat him like an early Alzheimer's patient.

As a mother, I was devastated. Here was the same little boy who tried to memorize his times tables in kindergarten, now getting hung up on spelling the word "the." The entire house became his memory system, and he relied on everyone to keep him oriented. I played music that we all loved. His brother, though annoyed, let him play certain things over and over again. We bought him a phone, not so much for the ability to make calls, but for the ability to keep reminders of everything. Reminders to take his medication. Reminders to feed the dog. Reminders to take a shower.

School became useless. No one has ever answered my question: How can you learn if you can't remember. 5th, 6th and 7th grades were completely lost. Anything he wrote down, he couldn't even recognize his handwriting.

I took old pictures and scattered around the house. I wanted him to at least be comforted by the images. Even though, he would pick them up over and over again, and ask me the story behind each one.

As days turned into years, I stopped using the words, "Don't you remember?" In fact, the word remember was stricken from my vocabulary. We all tried to help him live in the present, even as each new moment became the present all over again. The best analogy came for the neuropsych evaluator. She said it was like his mind took a Polaroid snapshot of each moment and then threw it away. Each moment was never connected to the next.

Then came that night.

All I can remember is that it was like a damn broke and everything flowed with the flood of recognition. Childhood memories that included the feeling of the backpack hitting his shoulders as he walked down the halls in first grade. Holiday celebrations in homes in other states. Smells of food that he no longer liked to eat. There was no rhyme or reason to it, just stacks and stacks of memories. Some as disconnected as ever, but others attached to more memories in odd, disjointed ways. Like how the feeling of the backpack led to a description of the school walls and how they felt.

He went on for the better part of the night. After awhile, I just listened, not daring to speak, hoping that the more he spoke, the more he would remember...and retain. The elation on his face of realizing he did have a past. He didn't just pop up one day, 13 years old. He hugged me again and again, like a long-lost friend. He went around hugging everyone and fingering household items like he saw them for the first time. He went to bed with such a look of satisfaction, I just sat there for more than a half hour, looking at him.

The next morning, he remembered the event, but not the memories. In a week, the event and the memories were gone.

I cannot even write about this anymore! I am in such anguish at his loss and mine. All I know is for more than two hours, one evening, a little boy was connected to his mind. I will never forget that look on his face. The confidence. The serenity.

Today, we are back to square one. I try not to remember in front of him. He tries not to think about how he can't remember. We use reminders for everything. The pictures lay scattered around. And, he asks me again, what day it is.

Monday, July 13, 2009

I'm Back...And Have Great News!

Classes are winding down, but I cannot contain my excitement. Even though I want to talk about my own successes, first and foremost, I want to crow like a happy, proud Mommy for my oldest son, Andrew.

During the big silence here on this blog lately, my son has survived a whirlwind of activity. First came the Youth Summer Job Program workshop and job fair. Then came the week away with DORS (Division of Rehabilitative Services) for a career assessment. We are still waiting on the report from DORS, which usually takes a month or two. We do know that he passed all the assessments with flying colors. That alone makes me very hopeful.

The summer job workshop wouldn't allow parents to even go into the room, which made me very upset. Even though the program was slanted toward children with developmental disabilities, it didn't seem like the program leaders knew anything or had any training in actually placing children with autism or learning disabilities in the job market. Then came the fiasco of a job fair that left my son stressed and turned off. Over 1000 children showed up, crowding the hotel lobby and walkway. We never received the time allocation call, so we showed up first thing in the morning (8:00am) only to find out that he didn't need to be there until 11:30am. By the time our allotted time came, the place was packed and we couldn't even find the end of the line. By this time, my son was visibly stressed and pacing. I decided that the whole atmosphere was not conducive to a good interview and left. If he couldn't be seen in a positive light, what was the point of seeing anyone?

Having a child with high-functioning autism requires a lot of groundwork. Nothing is ever just off the cuff. If neuro-typical young adults need to practice for interviews, it is imperative that young adults with autism practice early and often. For weeks ahead of time, Andrew practiced the right pressure for a handshake. Not too firm to crush their fingers and always more gentle with women, a little more firm with men. We worked on making that eye contact, which was very hard for Andrew to maintain. I literally counted off seconds so he could understand how long to hold a gaze. Low emotional expression is the norm for him, so we practiced flashing those pearlies at least once every minute or so. Even if he just tugged at the corners of his mouth that was better than his usual dead-pan look. He hates smiling, unless there is a joke, so I told him to think of something funny, but don't break out in laughter. He thought that was funny!

Finally we went through a whole series of interview questions, a body language overview and what to do with his hands. Even though his step-dad was with him during the interview (I let him know that having parents was unusual, but that for his first time out, I thought it was necessary), he was to look, listen and learn how interviews go.

After about a week, we got a call asking if Andrew had gone on any interviews. We said no. She mentioned a car painting warehouse. I explained that Andrew has high-functioning autism/Asperger's and also that I had allergies (he couldn't come home smelling like paint or chemicals) and was mobility impaired. I know it came out like a mouthful, but there wasn't anyway to get around it. We needed a miracle.

Well, never underestimate God when you ask for a miracle.

Last week, we got a call to see if Andrew would go out for an interview at a furniture manufacturer in a nearby town. It was for furniture assembly. I pictured sawdust everywhere. I was concerned about glues or stains, but felt like it was better than all day painting. On the day of the interview, I tucked his resume (that I had expertly typed up for him) in an folder and told him to hand that to the person who interviewed him. My hubby took him down and I crossed my fingers.

Well, he came back, saying that they wanted him to come back again to meet with the CFO of the company for a possible office job. I was simply ecstatic! Trying not to make him antsy, I tried to stay calm, while I told him I had hoped for something like this.

Don't get me wrong. I have nothing against working on the warehouse floor, but I don't know a single child with autism that likes noisy, dusty environments with a lot of people (my son hates everything like that from movie theaters, amusement parks to malls). He will do what I ask him to do, but after awhile, you will see the strain in his behavior, mood and body. Plus he would be on his feet all day long and he has low muscle tone in his hands and arms. I knew that initially, he would do okay, but eventually, he would begin to suffer from it.

Well, today, was the interview. I sent him out in his taupe pants and his office blue shirt. He looked just like an office employee, and at six feet tall now, he makes an impressive entry. I prayed he would get that job.

And, he did!

Monday of next week, he starts as assistant to the accounting office, and working directly with the CFO of the company!

I am so excited, I could cry and scream at the same time! They are even negotiating whether he can be paid more due to the different nature of the job from the summer program. He will work 30 hours a week to start and if this works out, he may have the opportunity to return next year during school and the summer after that.

Out of all the hardship we have endured lately (we are financially quite strapped, trying to provide all the special care everyone needs in here), this was a godsend! Andrew is very thrifty with money, so I know we won't have to worry about him squandering it all (he still has gift cards from Christmas!). This will give him experience and confidence.

He participated in our annual community clean-up this last weekend. As he road off in a truck with the other men to pick up items from the elderly, I realized that I am saying good-bye to my little boy. He went off and didn't even look back. Monday, when I drop him off to work (the office is literally 10 minutes from our house!), I am sure he will do the same thing.

It will hurt, but in the end, I'll be okay. I raised him to do just what he is doing; growing up confident and able.

BTW, one line for me. I got a 99.4 in Project Management and 100 in Image Editing.