I would like to introduce you to my son.  He is now a young man and deserves the respect of you and I.  I am so proud of the man he has become.

Derek has an extra chromosome (47XYY) and Marfan's Syndrome .

When I was almost 30 years old I was told I had "pelvic inflammatory disease".  My doctor kept assuring me I was not pregnant.  Finally he put me in the hospital and I had round the clock injections of antibiotics.  After 5 days they found I was about 12 weeks pregnant.  I asked what affect the medication would have on my child, and they answered carelessly "Oh he (I am using he as I gave birth to a son) may have green teeth and soft bones, but not to worry.  They promised "he would not be affected much."

I lived the next few months in joy and fear.  Joy because I had always wanted another child and fear because of the precarious start he had in this world.  Things were strained between his father and I and that added to the stress.

 
Still I very much wanted my baby.

When it came time to give birth they gave me a spinal block.  Well they made a mistake and I was paralyzed.  Because of the lack of oxygen, they had to deliver him in a hurry.  He was 9 1/2 pounds so this was a challenge.  They used forceps which left deep bruises and indentations on his temples.  Again they said this was "not a problem" .

Within the first 6 weeks it was obvious there was a problem.  Derek had problems with sucking and sleeping.  He seemed to be angry at the world and was difficult to feed.  His father and I continued to struggle.  All this time I fought to convince myself there was no problem and Derek was fine.

At three months I had to return to work.  The hardest thing I had to do was leave Derek in daycare.  He still had problems drinking out of a bottle and refused to drink.  Finally I had to teach him to drink out of a cup.

The daycare center was run by a woman who had been in the business for 20 years. When Derek was 8 months old, she told me to make Derek respond to me and those around him.  She said he acted much like a "autistic child" she had cared for.  He was very unconnected to the world around him.  I had him checked out and the doctors said "He's just slow, but he will be fine."

When Derek was almost 3 he would bite himself and pull his hair.  He talked all the time, but no one could understand him.  He tried so hard to communicate with us.  He became so self abusive I was afraid for him.

By this time I had divorced his father and remarried.  We now had 4 children instead of 2 boys, and everyone wanted to chalk it up to changes in his life.  Finally we had him tested and found that he had "minimal brain damage, and the extra "Y" chromosome and severely retarded".   They kept telling me he couldn't do the things we said he did and that he would never be able to finish school.  They suggested speech therapy and he be put in the head start program where he would have to interact with other adults and children.

About the time he was feeling better we were shipped to Germany.  Before we decided to go together we send medical reports  to all services involved and received letters assuring us that services would be available.
So off we went.  (that is a whole other story)

What we found when we got there was those services would be available in anywhere from 18 months to 30 months.  After 2 years of fighting to get a minimum of help, I came back and found my guardian angel.  Her name was Peggy Main and she helped me get Derek in the Crippled Children Association.  She helped me get Derek evaluated at the Children's Affiliates Hospital in Los Angeles.  (They are attached to UCLA.)  After 3 days of testing his birth father, his step father and I.  they found Derek was doing far better than expected.  They complimented my husband and I on the job we were doing.  If you have ever had a handicapped child who is unable to communicate, those words are the life saver you have been looking for.

This diagnosis and words of praise saw us through many rough times.

Derek entered counseling with a psychiatrist and was put on anti seizure medication.  He was doing better in school and was classified as SEH
(severely emotionally handicapped).  This was just one of the many labels they put on him through the years.  He had learned to manipulate people (especially women).  He would use them and make them feel sorry for him.  This got him further than the outbursts.  Still he couldn't always control them.  After years of testing by professionals of all types, he became very good at the manipulation, sometimes I had a hard time making them realize he had their number.

Later he had a teacher that felt that there was no problem with Derek, but being spoiled (ignoring the three inches of medical reports).  She was not easy to fool, but carried it to the extreme.  She blamed him for any situation never looking past to see what the others had done to harass him.  He would come home with pinch marks and bruises from the other students.  Whenever he tried to honestly tell his side she judged him as the cause.  This was as difficult to deal with as the other side of the coin.  This gave his father an out to grab onto and it gave him a way to soothe his guilty conscience.

When Derek was 13 we moved to California.  He hated the move and his new school put him in with students that were more violent and mean acting.  He brought this attitude home with him and took it out on the apartment and me.  Finally the straw that broke the camel's back was an outburst where he put his fist through the hall closet door and threatened to do the same to me.  I called the police and they took him to the County Mental Health Center.

Derek had been having "rage seizures" but this was the worst yet.  He would lose himself and then cry and fall into a deep sleep for 4 or more hours.  They put him on anti seizure medication and sent him home.  I was working long hours at 2 jobs and wasn't sure I could cope any longer.  Still I was getting no help from the school system or the Mental Health Center.  I finally quit my jobs and went back into managing apartments.  I had done this 19 years earlier.  This at least gave me some flexibility for school conferences and doctor appointments.  Derek's father was as usual in denial and offered no help.  It also allowed me a chance to be home when he came home from school.  This helped but he was still having problems.

As he got older and into puberty he had a harder time with his outbursts.  I took him for testing by an internal medicine.  He took X-rays to see if they could put Derek on hormone therapy to stop his growth.  He was already over 6 foot by this time.  They saw that he was still growing, but already had enough hormones for 2 people.  There was no way to slow him down.  So Derek was over 6 feet tall and having violent outbursts.  They said he could grow out of them once he got through puberty, he must stay on the medication.

Now Derek was getting more of a sense of himself and decided he didn't want to take medication.  I would try to get him to take it and he would throw it away or refuse.  He was acting up at school as well as at home.  I again went to the agencies to try to get help.  I finally got Derek into a half-way house called "OZ" .  They helped me to get him into a live in school 40 miles away from home.  I would pick him up on the weekends and bring him home.

He had to take his meds there and classes were small enough he excelled.  He always said how much he hated it, but it was his first chance to find out what he could do.  Those there with him were "bloods", "crypts" and such.  Still he found a path that allowed him to succeed.  I was so proud of the way he was applying himself.  He had weekly counseling, but by this time he knew more than the counselors and only showed them what he wanted to.  After one year he was dropped from the program.  They said "he was doing to well and must not need it any longer".

I was angry and scared that he would fall back into the old patterns.  By this time he was 17 and getting close to 7 feet tall.  Well he came home and here we went again.  He would refuse his meds and didn't want to go to school.  He would sleep in and make no attempt to take any responsibility for any of his actions.  One night we got into an argument because he had not been taking his meds.  He blew up and stomped out.  I went to bed, but not to sleep until he came back in.

The next morning I tried to wake him up.  When I spoke to him something bothered me about his demeanor.  I walked back into his bedroom and asked him what was wrong.  He said he had taken lots of medicine and had no idea how much.  I called the poison control and they said to bring him into the emergency room. Because he had eaten before taking the meds and then fell asleep, most of it didn't get into his system, but this was quickly becoming a problem.  I managed to get him to the hospital before he passed out.  They forced him to drink charcoal and put him under 24 observation.  He said he wasn't suicidal, just wanted to go to sleep and not wake up "for awhile" .  Now I am scared that he will try something crazy.  Still they sent him home.

Whenever and where ever I would look for help, they would tell me I just had to keep doing what I was doing.  There were so many times I wanted to give up.  And so many times I felt I just couldn't go on.  I had been put on Prozac though they decided I didn't need counseling as my depression was chemical.  So once again I am out there on my own.

I now know that without God working with me, I never would have made it.  Prayer is the best help you can have.  A dear friend that had watched this process for 13 years, also helped me through.  Never underestimate the strength a special friendship can give you.  I had to learn I was not an island and to look outside myself for help.

With the help of a very special teacher, in the Special Education Department, Derek and I got him through high school.  The closer we got the harder it was to get him through.  He didn't want to grow up and thought graduating was going to change his life in ways he didn't want it changed.  He wanted to stay a child and stay at home with no responsibility.  I agreed to let him stay home if he would take even just one class and try to work even a few hours a week.  By this time he was on SSI and had some income.

Derek wanted to sleep all day and wander the streets all night.  He didn't want to help or even just take care of his own things.  He became argumentative and got the attitude he didn't care about anything.  I had been in a car accident and off work for 13 months.  I finally was to return to work and became manager of a senior property.  I told Derek he would have to get his own place.  I would help until he could get on HUD, but he had to make it on his own.  We were both very scared.  Still he would never move forward without this.  It is called "tough love", something I had learned years before.

He made friends with people who stole from him.  Provided drugs and beer and took every opportunity to take advantage of him.  He ran up a phone bill over $1000 in 900 number calls.  Somehow we made it through it all.  Still we were unable to get him help as he was now over 18 and they had dumped him out of the system.

His first experience was not successful.  He quit eating, because he was depressed and didn't want to fix anything.  His weight went down to 160 pounds.  By now he was 7 foot tall and that made him look like he was dying.

We both got so scared he agreed to go into a group home.  He would leave within the next 4 months.  He didn't fit in and there were rats and roaches everywhere.

I had talked to a friend of his from high school, who was also on SSI.  They decided to move in together.  It was a joke that they would either kill each other or learn what it was like to live with someone who had the same behavior they did.  I am not sure what it did for his friend, but he definitely learned what it was like to live with someone dirtier (was it possible?) than him.  He developed patience and a desire to live on his own once again.

He has been on his own now for 5 years and has learned to pay his rent first, not do anything that would jeopardize his SSI or HUD.  He knows he can't sleep with friends around, because they could steal him blind.
He has made friends and found a fairly comfortable place for himself.

He feels he is a burden to society and compares himself to his brother who is in computers and makes over $100,000 a year.  Still he now says he is starting to give himself credit for how far he has come.  He knows that things came easier and still do for many others, and he must feel good about himself.  Sometimes he takes 2 steps forward and 1 back, but still he is proving to himself that he can make it on his own terms.

In this year we had more specialists review where he is.  We found some of his slender stature is due to Marfan's Syndrome.  This is the same thing Abraham Lincoln has that made him so gaunt.  As with the 47XYY there is no cure, but it is good to know.  He had a heart echo cardiogram and we were relieved to hear his heart is strong and healthy.  This is one of the dangers of the syndrome.  Still it will take a lot of effort to keep his weight up to 185 pounds.

His struggle will never be over and he will always have to work harder to succeed than most.  He has finally allowed himself to go on Prozac also and it is helping keep things more level for him.  He still wants to drop out and go out on the road leaving SSI and HUD behind.   Whether he will is yet to be seen.

I hope this story will help someone with a special child to see you can not always believe what the so called specialists tell you.  Follow your heart and intuition.  You will know your child more than anyone else.  Fight the system to get the services your child needs.  They will not come easy.  Pray frequently and take the help offered, even though sometimes it is not what you asked for.  Many prayers come true in ways we don't expect.  Know that you are never alone and that God picked you as this child's parent because you will both learn and grow together.

If you would like to know more or morale support please e-mail me or sign the guest book below. Don't Give Up.

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