American Lead Poisoning Help Association, Inc.

You are not alone anymore...

Julian - Twelve Years Later

April 30, 2009

Twelve years ago lead altered my family’s course forever, only it took until this year to really start to see the long-term effects of lead on my son.  We renovated a 200-year-old house in rural Ohio, and had never heard about lead paint or poisoning or hazards; we purchased the house six months before Title X disclosure was enforced.  Julian was only ten-months old when initially diagnosed with a venous level of 44 micrograms per deciliter, went through two rounds of oral chelation, and then all we could do was wait and hope. 

Fast forward to this past year – physically, it appeared that he dodged the bullet.  He’s almost thirteen, and has stretched out to 5’7” tall, and a solid 180 pounds.  But what happened inside his skull was the alarming part of the equation. 

Neuropsychological testing over the past two years indicated that there is measurable deterioration as he matures.  His grade average declined from an A-B average in fourth grade to straight F’s in seventh grade.  The school stonewalled us on placing him into an Individualized Education Program (IEP), basing their rationale almost solely on his 135 IQ.  “He SHOULD be able to do the work,” they would say. 

Every time my child has fallen into another bureaucratic crack in the system, I’ve been there to pull him back out and move forward.  I’m not one to sit back and let my son fail, just because that’s what the statistics say is going to happen.  The problem was getting a school district to actually understand about lead poisoning and the long-term effects of lead.  Those of us in lead, personally and/or professionally, are all familiar with the list of long-term effects: concentration-issues, hyperactivity, greater chance of dropping out of school, and incarceration.  By Thanksgiving 2008, Julian was failing all five major classes, and the school refused to do anything, so I contacted the Superintendent directly and threatened to bring down the wrath of the lead community.  He knew I was livid and agreed to start the Child Study Team (CST) meeting process.

The next hurdle was the CST psychologist, who advised ME that my son “only had elevated lead levels for two years.”  The guidance counselor warned me that “he probably won’t get placed with an IEP, he’s too smart.”  Then, the social worker told us exactly where to start with the “New Jersey Department of Education Parental Rights in Special Education” 6A:14-3.5, “Determination of eligibility for special education and related services;” section 9 specifically addresses “lead poisoning” as other health impairment, and the resulting diagnosis of “Traumatic Brain Injury” under section 13. 

Let me pause there just a moment to reflect that last diagnosis.  TBI - this scares me more than the initial diagnosis of lead poisoning.  With Julian, there are no other outstanding issues that would cause his behavior, this is a “pure and simple” lead poisoning case; renovating with a baby in the house twelve years ago, I caused TBI in my son as he grew older.  His skull is still intact (and covered by a mop of golden-red curls), but under that, his brain has been permanently damaged by his early lead exposure.    

As this current school year progressed, my husband (who has tried to convince himself that once the lead was removed, our son would be ok) started to understand what I have been fighting for – that the damage from the lead was NOW starting to surface, twelve years after the exposure.  He sat beside me while I took on the Child Study Team Psychologist, and at the second meeting, when the CST Director repeatedly apologized to us for all the misinformation that different members of the CST had provided.  Julian was placed in inclusion classes immediately, and after the first full 9 weeks with an inclusion teacher, he has A-B-C grades for the 3rd marking period this year.  Total “new” costs to district – zero.  The inclusion teacher can handle a caseload of up to ten students, so just simply re-arranging his schedule, Julian is starting to thrive again.Dealing with lead and the long-term effects are a daily battle in this house, and there is no end in sight, as long as the Department of Education remains entirely removed from lead, ESPECIALLY for those children that the system wants to label as “autistic” “ADD” “ADHD” or other categories.  Special Education rates are sky-rocketing all over the US, costing more for taxpayers.  Children who are lead poisoned do not only reside in at-risk cities – they are all over the country, in ALL areas, and by ignoring the problem, these children are left behind, yet again. 

As I’ve told others, this year has been the most challenging of all, including the initial diagnosis, chelation and treatment.  It’s a long, frustrating road that families travel down without a roadmap to consult for directions.  My son should be ok now, but what about the other children, the cases that were closed after the blood level receded below intervention or the lead removed from the child’s environment?  What happens to those children when they fail out of school? 

Keep up the fight everyone!  Lead’s not over until every child is tested and everyone knows about the long-term PERMANENT effects.  And let’s invite the Department of Education to the table, in every state, so that they understand their role in this public health battle and how it relates to I.D.E.A.  Parents should not have to reinvent the wheel every time this happens, and they are not alone anymore… 

Leann Howell
Founder and President
American Lead Poisoning Help Association, Inc.