Winter, 2007

Craig’s Story

I wish I could go back in time, to tell myself how good my life would be, and how  my wonderful  son would turn out.

Everyday my son Craig wakes up happy and goes to bed happy.  He has countless friends, a job he loves, a busier schedule than mine, and never complains.  He loves his family, God, and everyone he meets.  I feel honored to be his mother.  He may see life in a simplistic way, but we can all learn from him if we just slow down and take the time to appreciate the little things.

Craig’s life began Sept. 27th 1984, at 6:26 pm.  He weighed 7 lbs  1 oz and was 20 1/4 inches long.  He was my first born and he was perfect.  My dad came to the hospital and laughed out loud about his thick black hair, ( I think he was jealous, my dad is bald).    Craig progressed normally, walking at nine months, and babbling around age one.  I went to bed every night dreaming of him doing great things with his life, like “finding the cure for cancer, or “hitting the winning run in the World Series.” I had big plans …..

Then everything changed. Craig was about 18 months old and one afternoon as I was talking to my mom in the kitchen, I saw Craig’s feet fly off the floor and his little body hit the floor, he was having a violent seizure.  We scooped him up and drove to St Joseph Hospital as fast as we could.  On the way he vomited and aspirated it into his lungs, he was turning blue and purple.  Even being a nurse myself, I had never been so terrified in my whole life.  Craig underwent several tests, spinal tap, blood work and spent the night in the hospital with IV antibiotics. He had a temperature and it was feared he had developed pneumonia from aspirating.  We were sent home with a weeks worth of antibiotics and prescription for medicine to sedate Craig for an EEG.  The doctors were trying to find the cause of the seizure.  On the day of the test I gave Craig the sedation medicine and headed for the radiology department.  However, the medication didn’t make Craig sleepy, but rather he was wired for sound.  The technician tried to hook the electrodes to his head, but just as fast he was ripping them off.  The test had to be rescheduled, and a higher does of sedative was prescribed.  Once again, it failed.  The doctors were reluctant to go any higher on the dosage.  In the meantime, family and friends were hinting to me that Craig seemed slower at progressing in speech than other kids his age.  I had snappy comebacks every time, like “boys are just slower than girls” or “I’m just babying him too much and he doesn’t have to talk”, or “the doctors say everything is fine.”  But, deep down, way down in the depth of my soul, I knew something was wrong.

We had an appointment at Children’s Hospital in Seattle where Craig was seen in neurodiagnostics and finally was able to have the EEG.  The tests revealed the seizures he was having were febrile, which means his body could not handle temperature changes, but as his brain matured, he would grow out of them.  The doctors had other concerns, however.  They scheduled visits for IQ testing and one with a child psychologist.  When they were testing his IQ, I was asked to leave the room because after each question, I was asking “he’s ok-right?”  I could not bear to think of him as being anything short of perfect.  Dr. Matt Spelt, the child psychologist, looked at all the test results and diagnosed Craig with hyperactivity and mental retardation (which I know is not politically correct, but is the terminology they still use in the medical field to this day in diagnosing).  Dr Spelt was stumped because he felt Craig was too social to fall in the autistic criteria, but thought Craig may have autistic tendencies due to the fact that he would obsess on particular objects.  The particular object he was into at that time was vacuum cleaners.  He called them “buzz buzzes” and would actually fall asleep with the Sears catalog on his chest, opened to the vacuum section  He suggested we make Craig a “focus of concern” in the school district and enroll him in special education.  I think I was in shock, but what hurt the most was that my mom was worried about what the neighbors would think when the “special” bus came to our door.  I cried for days outwardly and I cried inside for years to come.

Craig started Robert Gray developmental preschool at age 4. He was traumatized when the bus came to pick him up, and he was strapped down in the seat, being taken away from his mom for the first time, the poor thing didn’t understand what was happening.  In class he was very hard to handle.  The children would be split into groups and stay in each group for 3 minutes, then rotate to the next station.  The teacher told me Craig was unable to stay in his group for more than just a few seconds.  He was also stuffing his mouth so full and so fast at snack time he would gag himself.  I saw these same behaviors at home.  Craig acted like we had starved him at one time!  His speech was hard to understand and he spoke very rapidly.  At night he was having nightmares of the buses coming to get him.  One night I couldn’t get him to calm down and had to drive to the bus garage to show him the buses were asleep and not going to get him.

The next year, as Craig continued on with developmental preschool, the school started mixing “typical” kids with the developmentally delayed students.  Some parents were very vocal about wanting their kids kept away from the developmentally delayed kids, thinking that their child would not receive the same education or pick up some bad habits.  I was crushed.  I thought about taking Craig to a deserted island somewhere to protect him from being made fun of.  But, I knew that was not an option.

The next year Craig was ready for kindergarten and needed to go to the school closest to our home, which was Alexander Young.  He was to be integrated into a regular classroom.  His IEP (Individual Education Plan), stated that he was to have an aide assist him.  The school did not provide the aide.  His teacher said he was unmanageable and disruptive.  I asked the principle at the next IEP meeting why there was no aide for Craig and he replied “I don’t know why you are fighting for an aide, no matter what we do, your child will never be normal.”  I fired right back at him with “Well, he may never be a rocket scientist, but he is going to be the best he can be and if that means getting an aide for him, then that’s what he will get!”

All the while, my mom and I would pray that Craig would be healed, even taking him to services to be prayed over. But, what we didn’t know, and God did, was that Craig didn’t need healed, he was already perfect and his life would be extraordinary.

 I met with Harry Carthum at the administrative building and had Craig moved to Stevens Community based program.  He thrived! He was put on Ritalin and he had a peer group.  He was still being integrated in some classes, but since he couldn’t read or write, it was becoming more difficult as the years went by.  A few years later, Craig was taken off the Ritalin because he was developing facial ticks, which was a rare side effect.  But, as Craig matured, so did his attention span and no other medicine was needed.

Before I knew it, Craig was ready for high school. I was so nervous!  I felt like I was sending the lamb to the slaughter, I thought the kids would tease him without mercy.  I could not have been more wrong. 

Craig went to Aberdeen High School and really loved being a bobcat!  He was so social that he got to know everyone and their business. He never got intimidated and would talk to everyone. He helped on most of the sports teams, earning several letters.  The students and parents got together and bought him a Letterman’s jacket, which they presented to him at a pep rally.  What was so touching to me was that Craig was given an honorary spot on the wrestling team.  He could not compete for real, but during each match one of his teammates would let Craig join them on the mat for some wrestling, allowing him to pin them.  What a great bunch of kids!!  When I went to the first match I was worried that I would hear someone in the crowd make fun of him, but to my surprise, everyone was cheering.  I had tears in my eyes as they held up his hand in victory.  The kids taped all the matches and presented it to him at the sports award banquet.

 Craig also loved helping with basketball, football, and marching with the band.  He was one of the People’s Choice award recipients, nominated by his teacher Randy Conolly and voted on by the students. Craig’s teacher once told me that taking Craig around town was like traveling with a rock star, everyone knew him and wanted to talk to him! Craig’s innocence and loving, happy spirit is endearing.  He still believes in Santa Claus! When I tried to tell him that Santa doesn’t exist, he would simply reply “your funny mom!”  Just think what a wonderful world this would be if we all had his outlook on life.

The age of 21 and graduation were approaching fast, and once again, the “worried mom” syndrome kicked in.  Me of little faith wondered just what would Craig do?  Would he just be sitting around the house with nothing to do?   Well, the school personnel was already planning and working hard to help Craig find a job.  Tammy Heth was Craig’s job coach and helped him  get several volunteer positions within the community.  She helped him prepare a resume and assisted him in filling out applications.  Before Craig graduated, we met with his teacher, Randy Connolly, DDD Case Manager, Julie Gardner, and his job coach, Tammy Heth, to brainstorm on job options for Craig. Tammy continued to work with Craig after graduation and thanks to all her hard work and efforts, he finally got an interview with Wal-Mart.

The foundation was laid in school by his teachers and job counselor.  Then, after graduation many more people began taking an active roll in his employment path:  his DDD case manager, supervisors and other employees at Wal-Mart, Patty Lignoski and Vera Kalkarf, who work for the county and found funding for the hours Craig would need a job coach.  I got to choose which provider I wanted and I chose to go through the CAPP office, where Shawna Myers was selected.  She is now assisting Wal-Mart supervisors and Craig to help him pass his cable testing (computer tests required for all employees of Wal-Mart).  We also met with Pat Buff, Social Security Benefits Specialist, who assisted us in ways to make sure Craig’s          employment and Social Security were working together to bring out the best outcome for Craig.  These people and more continue to be involved in Craig’s success and I owe them all so much!

Craig also keeps busy when he isn’t working.  He participates in Special Olympics, recently bringing home a bronze medal in bowling and track.  He loved being on the baseball team that took 5th in State and can’t wait for basketball to start.  Tara Wingate and the other coaches for Special Olympics are wonderful people.

Just before my mom passed away, we were watching a TV show that was discussing a new gene therapy that could reverse certain types of mental disabilities. We both scrambled to find a pencil to write down the number, then we both stopped and smiled at each other.  Why would we want to change him?  He is perfect, we should all be more like him and learn to really care for one another.  Thank God for unanswered prayers.

I have learned so much from my son.  He sings like no one is listening, he dances like no one is watching, and he is truly happy.   All my years of worrying about what his life would be —were all for not!  I wish I knew then what I know now!