First, Miss Angie is amazing. She is healthy and thriving and everyday with her is a gift. She had a sleepover with some of her favorite people, went to a band concert where she tells me she danced during the concert, and she is excited to start swimming lessons, which she tells me EVERY SINGLE DAY. She is doing "normal" like only she can. In fact, I think she is the strongest one in the family right now.
We have learned that Baby Ezra has West Syndrome, which doctors identify as "catastrophic childhood epilepsy". It is a lifelong disability causing permanent developmental delays. Some other test results are still pending, but this is what we know so far. Ezra is at home again now and he is receiving strong steroid treatments for the seizures. The treatment cost is an astronomical $2000/day. Don't even get me started on how I feel about drug manufacturers and insurance companies. Actually, the drug company has a program to pay the patient co-pays for the medication and Ezra's insurance company won't accept their payment. So many challenges ahead for little Ezra and his parents.....
Then there is Levi. I have been particularly quiet on this subject. Now, I am going to share with the hope that others will be educated and may be able to pay it forward to someone else who needs support and understanding. Levi has Alcohol Related Neurodevelopment Disorder, commonly known as Fetal Alcohol Syndrome. His biological mother used opiates, methamphetamine, barbiturates, and marijuana during her pregnancy as well. Levi's brain is severely and permanently damaged and his condition was 100% preventable. He was not given a choice. I could go into great detail about ARND and FAS but I will just share the basics:
Brain and central nervous system problems
Problems with the brain and central nervous system may include:
- Poor coordination or balance
- Intellectual disability, learning disorders and delayed development
- Poor memory
- Trouble with attention and with processing information
- Difficulty with reasoning and problem-solving
- Difficulty identifying consequences of choices
- Poor judgment skills
- Jitteriness or hyperactivity
- Rapidly changing moods
Social and behavioral issues
Problems in functioning, coping and interacting with others may include:
- Difficulty in school
- Trouble getting along with others
- Poor social skills
- Trouble adapting to change or switching from one task to another
- Problems with behavior and impulse control
- Poor concept of time
- Problems staying on task
- Difficulty planning or working toward a goal
Levi has every single one of these symptoms and some that are not listed. Just one more fact: Alcohol use is far more damaging on the developing brain than drug use.
If you know our family, you know that Levi has received a variety of treatments for his conditions since birth, including several out-of-home placements. In early April, we realized that we needed another secure placement for him when he started exhibiting risky behaviors, such as leaving home and school for hours at a time. Children with drug and alcohol exposure are particularly vulnerable to becoming victims due to their poor reasoning skills and inability to sense danger or predict consequences. Levi's social and emotional functioning level is at age 6 or 7. We were terrified for his safety.
Unfortunately, the Department of Developmental Disabilities could not find a placement this time. Levi became #16 on the waitlist and we were told placement might happen in about 6 months. In late April, we begged for a "crisis placement" which is supposed to take 24-48 hours and we were again turned away. We sought help at a children's hospital and with law enforcement-still nothing.
Last Friday, our worst fears were realized. Levi was playing with matches in the school bathroom and he started a fire in the garbage can. He was interviewed for over 2 hours, arrested and taken to the juvenile detention facility for 4 days. I am not ready to write about that particular experience yet, but I will tell you this-it was devastating. Levi is charged with three misdemeanor crimes and he is now involved in the juvenile justice system. The school IEP team has determined that his behavior was a manifestation of his disability and he will not be expelled but we have chosen for him not return to school this year. The legal process will take time and Levi will be held accountable for his actions. So, indirectly, will Toby and I. Toby is currently unable to work and is at home with Levi, who is under house arrest. Levi is very, very sorry and regrets his actions, which is often not the case for children with FAS.
I know this is getting long, but I share it in detail to try to facilitate understanding. The situation is so complicated. Toby and I do not believe that Levi should be relieved of responsibility for his behavior, but we do believe his disability should be considered and we believe it will be. Our family has been treated with respect by school staff and by the juvenile case manager and they have educated themselves about Levi and his disability. We are overwhelmed by sadness and feel that Levi, and our family, was let down by the systems that are supposed to support and protect children with disabilities.
Please share our truth when you hear people gossiping about Levi. We live in a small town and we know people are talking. Please think of Josh and how this affects him when you consider telling our story. Please pray for Levi as we continue to advocate for a placement for him where his needs can be met. I appreciate being able to tell our story and be heard. Thank you to all who have already reached out to support our family. It means more than you know.
