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What Happens When a #LeadPoisoned Child Grows Up

A letter from mama Jamie in Missouri
Samuel; Current Age 21

October 2013

My husband and I have been married for 27 years. We have 5 beautiful children, with our youngest, age 20, attending college. In 1994, after a routine well-baby check up, we discovered that our second youngest child, Samuel had lead poisoning. [At the time of testing, his Blood Lead Level was 36.] We had resided at the property for almost a year before the lead poisoning was discovered. He was 2 years old at the time of this discovery. His sister, our youngest, was 1 year old and had a much much lower level than Samuel. [In addition, six months earlier, while living at this same residence, I experienced a stillbirth. At the time we lost our son, we had no idea that lead might have caused his death. Now, we can only speculate.] Samuel became a regular patient at Cardinal Glennon Children’s Hospital in St. Louis. He was treated with iron therapy. As per normal procedure, the St. Louis City Health Department came to the city home we were renting and tested the building. The property was found to have 18 lead paint violations, including a piece of plastered wall that was crumbling between 2 walls within our living space. Dust was seeping out under the interior wall. The landlord procrastinated in fixing the wall because she felt that “until ‘something else’ needed fixing, it wasn’t worth the expense of just fixing one thing”. The city health department notified the landlord and received no response from her. In the meantime, we were told that we had to vacate the property within 30 days as the lead contamination was severe. Within 30 days, we were gone.
img154It was difficult to find another place to live on such short notice, especially being that it was so close to Christmas and we had 5 children in tow. Desperate and with no other place to go, we moved in with my father-in-law. Through this whole ordeal, we began to take notice of some troubling issues with Samuel… learning became increasingly difficult for him and he had these “over-the-top” anger outbursts which were very hard to manage – just to cite a couple. In the meantime, while dealing with our son’s needs, we learned that the landlord had been previously cited for lead paint violations before we had moved in, and she never made any repairs nor disclosed the violations. As you can imagine, my husband and I were so, so angry.
We’re not the sort of folks who would normally consider legal action – but after learning about the property AND beginning to see the mounting difficulties with our son, we made the decision to file suit against the landlord’s insurance company.
We hired an attorney and, after a number of years, the insurance company settled with us in January 1999 [for the policy limit of $100,000; of course, we knew that the $100,000img156 settlement was not going to meet all of Samuel’s needs, but asking for more would have required us to sue the landlord personally – which would have resulted in the selling of her personal property (the home where she lived) and all her assets. We were unwilling to destroy her. Later on, we felt this was the proper decision – as we learned that she was planning her suicide if we  launched a lawsuit against her personally. The guilt she was dealing with was obviously enormous, and we knew that she would be living with the results of her poor decisions forever. We felt that this was enough “punishment” for her.]

After the insurance lawsuit, we applied for SSI for Samuel. He was turned down on the first application, but with the help of our attorney and the resolution of the lawsuit, he was approved for SSI/Medicaid. Samuel continued to receive ongoing services with Cardinal Glennon’s speech/language therapy department as well as the occupational therapy department for fine motor skill problems. In addition, he was seen by a child psychologist and a psychiatrist to help with emerging problems with impulsivity and anger management issues. Because we lived in the city of St. Louis, the special education services being offered to Samuel were unsatisfactory. After much investigation, we decided to send Samuel to a specialty school “The Miriam School”.  The school, designed eximg155clusively for children with special needs, was very expensive. After receiving a partial scholarship from the Miriam Foundation and applying a part of Samuel’s “trust fund” money, Samuel became a student at the school. He attended the Miriam School for 6 years. [At the time, the school only worked with kids through age 12.] The learning that he experienced there was awesome. He participated in not only academic learning, but received occupational therapy for his fine motor skill issues as well as other therapies such as “brushing” and additional language/speech therapy services. Even to this day, we still remain in contact with some of his teachers.
Upon Samuel’s “graduation” from the school, his current teachers gave us a lot of advice. One of the greatest pieces of wisdom given to us was the following . . . “One of Samuel’s biggest challenges in life is going to be his appearance. Because Samuel looks “normal”, the expectations that people will have of him will be high. His educational issues and his social/behavioral issues will most probably cause difficulties because he just doesn’t look the part.”

That turned out to be prophetic advice…  Samuel is struggling so much right now. He has always used humor to “wow” people, but when folks see beneath it, things quickly fall apart. Between the ages of 12-18, Paul and I homeschooled Sam. This was not a new venture for us, as we had actually homeschooled all of our other children through high school. Samuel was cooperative for the most part for a little while, but things began to fall apart at age 16. He got his first job as a “cart boy” at a local grocery store – but was fired due to inappropriate behavior – in social situations he couldn’t seem to understand how to handle [“impaired social judgement”]. He was also employed at the local YMCA – but was fired because he acted out too impulsively regarding a particular situation.
Soon after, he told my husband and me that he “wanted to be ‘normal'” – and was “tired of taking meds”. He told us that when he turned 18, he was going to try and be “normal” without meds. We were absolutely NOT in agreement with this decision. But . . . when he turned 18, he quit taking his meds. In addition, his SSI for children ended and SSI for adults re-determination came due. He refused to cooperate with us regarding reapplying as an adult. He also “aged out” of seeing his pediatric therapists and doctors that he had been seeing for years. Everything hit at once, and then finally he was cut off from all support. We felt cut off from any help as well – isolated. Everyone kept telling us that we had no “rights” to help anymore because he was an “adult” now – yet, while that might be true chronologically, we knew that Samuel was definitely not able to do everything for himself.
Within 6 months of getting off his meds, he tried to commit suicide.
Samuel is 21 years old now. He cannot keep a job, nor can he find a job. He has no friends, just short-term acquaintances. He can’t keep any girlfriends because of his social inappropriateness.   Once a person gets to know Sam, they realize that he has “something wrong”. Unfortunately, most people think that he is just a lazy, unmotivated, disorganized louse . . .  again – probably because he looks “normal” from the outside. Everything that his teachers at the Miriam School cautioned us about has come true. Things have been headed downhill for a while now. He tried to move out with some buddies, but things ended abruptly and he came back home. They convinced him to try and help them rob a department store that he used to work at for a short time. [Thankfully, he was not charged.] He has dabbled with alcohol and marijuana, and is sexually inappropriate with girls he doesn’t even know. His license is currently suspended for not appearing in court for a traffic violation. His impulsivity is profound. He has little to no executive function skills to operate in the adult world. Currently, Samuel is living with us. A number of months ago, we did have to ask Sam to leave our home – because he was stealing items from our home and selling them to purchase cigarettes and other items he wanted. It was not the first time we had asked Sam to leave our home since he turned 18, but every other time he moved in with a girlfriend. This time, he had no girlfriend,  so . . .  he slept in Forest Park, a local city park, for two weeks. My husband and I woke up one morning surprised to find Sam asleep on the hammock in our backyard. Upon seeing him laying outside, we invited him in. He was hungry, dirty, and covered in bug bites. He told us that he needed our help in getting his life back on track. This really was a breakthrough. That was a little over a month ago.
Since then, we have been desperately researching ways to help our son. My research has shown me that the frontal lobe is the main part of the brain that lead exposure damages. We have come to the researched conclusion that the lead he was exposed to as a child has caused damage to the frontal lobe of his brain. He truly exhibits every symptom of such damage and we really need to get him services and help to function in the adult world. We have crates of paperwork from his school, speech/language therapists, psychiatrist, neurologist, and psychologist supporting this conclusion. We have tried to talk to him about this, but he becomes uncomfortable talking about it.
He has told us that he knows something is “wrong with him” but he doesn’t want to talk about it in detail or seek counseling for it. He is confused and embarrassed, although he is fully aware of his history. He did finally agree to go see a doctor at the local sliding-scale health care center (I’m sure that he did not share with them his history concerning the lead poisoning), and they just prescribed some sleep medication and an antidepressant. Unfortunately, he doesn’t take those on a regular enough basis to see any benefit. We have tried to help him by getting him involved in vocational rehab, but he stopped attending because he felt they weren’t really helping (honestly, we kind of got the same feeling).
This was all before discovering the depth of information on brain injury caused by early childhood lead exposure.
We have always known that Sam had learning issues and some behavioral issues from the lead poisoning. We just didn’t understand the extent to which the damage caused by his brain injury was causing his inappropriate and destructive behavior, lack of motivation, and poor judgment issues that he has been dealing with. There just doesn’t seem to be much information out there regarding real life studies and outcomes about the various issues that young adults who were exposed to lead as children are having. When Samuel was first diagnosed, all of energies were focused on his educational and cognitive needs. We, as parents, were so prudent about this, but we were obviously very ignorant about the long term behavioral issues that we might face. Very little was said about the behavioral issues and NOTHING was really said about the potential issues that would arise when he reached adulthood. Now, here we are 2013 – feeling hopeless and helpless.
I recently read the MRI studies that Dr. Kim Cecil did with 21 year old adults living in Cincinnati who were lead poisoned as children. Wow! This has been the ONLY thing that my husband and I have found that even addresses real life issues with adults who experienced lead poisoning as children. Honestly, I learned something recently…the comment kept being made that “antisocial” behavior was found to be present in adolescents who experienced lead poisoning as younger children. I always thought I knew what that term meant, but I was mistaken. My earlier interpretation of that word was someone sitting in a basement in a dark room, depressed and isolated – absolutely not Samuel. It was for this reason I didn’t think it applied to Sam. I always thought that Sam didn’t fit this because he is actually a VERY social and charming kid. I learned today that this is NOT what antisocial behavior is. Once again, Oh wow! When I looked up the definition and description, I realized it fit our son perfectly – yet with deep sadness.
I have always been embarrassed to tell people that he was stealing and lying – because it made my husband and me seem like bad parents, like we didn’t raise him right. So many times he seems “flat” or to lack empathy, but once in a while rays of hope will appear… A month ago, when my father died, Samuel seemed quite sorrowful and empathetic. Yet, three weeks ago he became an uncle for the first time – and about that he seems numb and uncaring.
We are not sure how to help our son, but we desperately want to.
We are both so happy to see someone spearheading an effort to expose the lead poisoning issue.  The documentary looks excellent. When our son Samuel was diagnosed, there just wasn’t much information out there. Now, I think things are better for parents of younger children, but we are lost because we are no longer dealing with a child, but a young adult who needs care. If you can offer any resources, doctors, anything . . . we would be forever grateful. Thanks in advance . . . and I’m sorry this letter is so very long.  Just wanted to share our journey

May 4, 2014

After years of frustration and not being able to find resources to help him – things with our 21-year old son are just now beginning to move forward in finding help and solutions for Samuel in his life.
He has started services with The Center for Head Injury Services of St. Louis. After some possible [lead-poisoning behavior related] legal issues, which were dropped (Thank-you Lord!), the team at the center has been terrific. They are doing all kinds of vocational type testing to see where Samuel’s strengths and weaknesses are. He attends their services twice a week. They are one of the only places that understands that whether you have suffered a brain injury through, say, a car accident [“physics-consequent” trauma] OR through lead-poisoning [“chemistry-consequent” trauma] – the injury, and need for services and help are exactly the same!
Yesterday, Samuel was administered a full battery of neuropsychological tests. He had these done twice as a child, but this is the first time as an adult. Vocational Rehab paid for these as well as the vocational testing!
Poor kid . . . his brain was pretty tired yesterday when it was all done. My hubby and I are anxious to see the results, especially comparing them to the past tests. The expectations of the adult world are very demanding, and Samuel has been struggling in a major way. Social Security is still pending and we have applied with MO Medicaid – they are waiting to see results of the neuropsych testing. So . . . this is where we sit right now.
I am committed to writing Samuel’s complete story and sharing it with you here and I am slowly getting things done, but Tamara suggested that sharing these “snapshots” with you would make a difference – so I am starting here – with this, today.
A Pet:

A little example of how Samuel’s executive function is limited…Samuel wanted his OWN pet to take care of. His girlfriend bought him a bunny <sigh>… Well, anyway, I came downstairs and smelled a horrible smell – bunny urine! I questioned Samuel about the need to change out the bedding daily. He immediately shot back and told me “I do, Mom!!” I checked the bunny cage and sure enough, it was clean. I stood baffled at where the smell was coming from. I quickly looked over in the corner of his room and realized that the trash bag that he was dumping all the urine soaked bedding in was sitting in his room! I had to explain to him that although it was awesome he was taking responsibility for the rabbit, he had to take the stinky bedding outside to the trash can EVERY time he changed it. He seemed enlightened by the idea – like he never thought of that!!! LOL! Things are smelling a bit better now!

May 5, 2104

The Bus:
Just this morning, Samuel had a “special educator” work with him on how to use public transportation – using Metrolink and buses to get to vocational rehab services. Things started off less than wonderful. Sam gets VERY frustrated when confused, and sometimes acts out. Inference is another confusing thing – He was suppose to meet the special services educator on the Metrolink platform, but got frustrated because the sign said that only riders with tickets could be on the platform. I tried to explain to him that although that was true, the real meaning behind the sign is that you must have a ticket/pass to board the train. We had a small scene this morning, but he quickly calmed down.  <sigh>

Thank you for reading.  If you are another parent of a lead-poisoned child, please consider sharing even just a glimpse into your life here on These shared stories are being read by (and helping) more people than you know.  Your experiences are touching the lives of other parents and they are feeling supported and validated by so many “aha” moments… (Like when we saw the film in St. Louis in March and realized how much Tamara’s son, Avi and his behavior reminded us of Samuel when he was that age.)

Thank you.


3 Responses to What Happens When a #LeadPoisoned Child Grows Up

  1. Amy Cook May 9, 2014 at 9:18 pm #

    Question for momma: did you have to have a referral to take your son to the trauma center in St. Louis? We aren’t very far from there and would like to take my daughter if possible. Thank you.

    • Jamie Hamilton May 26, 2014 at 1:46 pm #

      Hi Amy!! Actually, our Social Security attorney recommended we contact them. We wrote a letter about our situation. They are a wonderful, caring group of people. The funding for Samuel’s services took some time – no fault of theirs. He was already plugged in with the Developmental Disability Services of MO and Vocational Rehab. Hope this helps.

  2. Jennifer May 13, 2014 at 3:11 pm #

    Thanks so much for starting to share your story. I hope the services Samuel is getting will be helpful.

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