Sunday, January 07, 2007

Our Story

Many families affected by mental illness live in a silent world that exists behind closed doors. It is a world unto itself. A world of extreme frustration. A world that makes you want to scream, sometimes literally. A world that is often violent. A world that is turned upside down. A world where God doesn't seem to answer prayer.

Many families go through this struggle with mood swings and sometimes violent behavior always wondering when it will end. Well our struggle did end, finally! but the struggle with the health care providers, state government, and insurance companies never ends. This is the burden that parents of "special needs" children and young adults often carry the rest of their lives. A burden that does not go away.

Unless you have a "special needs" child, (autism, aspergers, PDD, Bi-polar, schiezo-affective, psychosis, and other diagnosis) you have no appreciation for the struggle involved in raising such a child. Things that the average family struggles with pale in comparison to a family raising "special needs" children. It is all consuming, and many families, as high as 80% do not survive. The day to day drain on your energy caring for that person makes you question everything. However those that do survive, have lived through hell and have come back much stronger for the experience. It has strengthened my faith immensely. One thing it did for me was to increase my reliance on the Lord.

We went through it with our son, and it has affected every member of our family in ways to numerous elaborate.

Andie will turn into a fine young doctor this spring and is today happily married, but the imprint on her life has been dramatic. Our family's ordeal has made our faith stronger and stiffened our resolve to survive no matter what the cost.

Below I have written David's story from my perspective. This was written the year after David was stabilized(2002).

David's Story

David has PDD (pervasive developmental disorder) and is borderline mentally retarded. He was not born with these problems. They developed over time. He also wears bilateral hearing aids and has moderate to severe hearing loss in one ear and mild to moderate hearing loss in the other ear. He was diagnosed with a hearing loss when he was three years old due to his speech delay and inability to speak clearly. As far as we know he was born with the hearing loss which is probably due to nerve damage since it has not been reversible.

Dave was considered normal except for the hearing loss and a heart operation (coarctation of the aorta) until he was 12. He was at that point an average to below average student most likely due to his hearing loss. We pulled him out of the private Christian school that he was in and home-schooled him in an effort to help bring up his grades. Then his real problems began.

At first he was diagnosed as suffering from depression (he would cry for no apparent reason which he could not explain). He was taken to various psychologists to try and figure out what was going on. He was then put on an anti-depressant and became very aggressive, even violent at times, to the point where he would have to be restrained. (There has recently been anecdotal evidence that Paxil may cause bi-polar behavior). At that point his diagnosis changed to bi-polar i.e. manic -depressive. Then he was started on various mood stabilizers to try and even out his moods. At this point in his life (13) he was also going through puberty so his hormone levels were changing and interacting in various ways with the medication affecting his behavior. I have come to the conclusion that giving adolescents powerful anti-depressants is a bad policy. However when the experts don't have the answers and despite prayer nothing was changing in David we had no other choice. It got to the point that we could not live with him.

Anyway, we went through two years of very trying times with him. In 2001 when he was 14-15 he was hospitalized 5 times in an effort to try to reach a medication combination that would stabilize him. Finally after multiple go-arounds with the insurance company to pay for this, he was detoxed (from medication) at a residential treatment facility in Mount Gretna, PA and then sent to Western Psychiatric Hospital in Pittsburgh for three weeks to have better experts examine his case. When he was finally off of all of his medications in Pittsburgh he became totally psychotic. This was extremely hard for both of us to deal with, but at least he was where he should have been placed much earlier in the course of all of his problems. Only when he was completely off of the medication could the psychologists and psychiatrists see him in his true state. (We had to get our local politicians involved to force the insurance company to allow him to be treated in Pittsburgh!).

I took a 30 day leave of absence from my job to stay with Dave while he was in Pittsburgh (the Family Leave Act has been a real blessing to us.). My wife and two daughters had Christmas that year without me since I was staying with Dave and my youngest daughter needed mom at home.

David was then diagnosed with PDD (pervasive developmental disorder) while in Pittsburgh and subsequent testing indicated that he had regressed significantly and became borderline mentally retarded. (He reads at a fifth grade level). However praise the Lord he is now stabilized on high doses of respiradal and cogentin and we can live with him again! (He is currently living at home with us and attends school regularly).

He is also on high blood pressure medication: enalapril, due to high blood pressure from a condition called co-arctation of the aorta. He had an aorta repair when he was three or four years old and last year had a heart catherization done to see if the previous repair could be modified since his blood pressure has steadily increased as he has gotten older. (He is now 16 years old.) The physicians at CHOP determined as a result of the catherization that another heart operation would be too risky.

Needless to say we have been through extremely trying times with our son. And it doesn't end there.

Every year for the last three years we have been to due-process with our local school district over David's educational needs. It all started when we placed him a Christian Academy (private school) where he was placed in the "special needs" category due to all of his problems and his declining grades. However the school district where we live did not give our son an IEP (Individualized Education Plan) as required by Federal law his first year at the Academy. An IEP spells out in specific terms the plan for a child's education. In this way there is a documented plan that the school district MUST follow. Since they did not have a documented plan we took the school district to due-process ( a due-process hearing).

In case you are not familiar with this, both parties; the parents and school representative go before a hearing officer (which may be a judge) to plead their case. Needless to say since the school district violated the law they lost the case.

(We hired an educational consultant to help us out until we were represented by a lawyer. She actually helped my wife formulate questions to cross examine the Special Education Director at the due process hearing. Needless to say may wife was very intimidated by this whole process! It was very hard for my wife emotionally but the Lord gave her the strength she needed to persevere.

We later hired an attorney recommended by the educational consultant who helped us out at the next due process hearing over David's ESY (extended school year). David's needs were great and we had to fight every year with the school district to get him what he needed during the summer months.

The majority of due process hearings where an attorney representing the parents (child) is present usually result in a verdict favorable to the parents. (school districts hide this fact and in fact discourage use of a lawyer for this reason). At most due process hearings where an attorney does not represent the parents (child), the parents lose the case (and this is true even if the school district does not follow the law.) This is because the parents don't know the intricacies of federal school laws like the school lawyer does unless you hire an education consultant as we did.

The School District representative stated at the last IEP meeting that he attended that they were placing David in the school district Senior High School next year. (This would be very detrimental to David emotionally as the academy has surrounded him with the love and attention that the School District would not have given him at their high school.) This is supposed to be an team (IEP team) decision not a unilateral school representative decision. Again they were not following proper procedure and landed in federal court because of it. We are tired of the due-process process since they have reneged on other issues (please forgive my complaining but we are weary).

The only thing they understand in layman terms is raw power and I don't say this flippantly. We have been there and know their methods. We have been to three previous due-process hearings and have won 100% of David's cases.

The Lord is with us. Despite David's multiple problems, He is blessing richly through people that he has brought into our lives to fight for David. We have seen prayer in action! and it works.

So life goes on as we say. Every day brings a new battle and a new challenge, but through it all the Lord was always there when we needed him.

"Can a woman forget her sucking child, that she should not have compassion on the son of her womb? yea, they may forget, yet will I not forget thee. Behold, I have graven thee upon the palms of my hands; thy walls are continually before me" Isaiah 49: 15 - 16. Our rock (anchor) and our redeemer, even in times of trouble, God the Father and our Lord Jesus Christ!

If you wish to contact me regarding an educational consultant, or lawyer for your child you may contact me at


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