Tuesday, April 18, 2017

Our 911 Group

Thirteen years ago we packed up our little family and moved to the desert.  Levi was barely 3, Ellie had just turned 1 and we had a new baby who was 1 month old.  We moved away from our wonderful support group of friends and family.

At this point in time Levi had some behavior issues, but no diagnosis.  That would come later. With 3 children 3 and under, we felt alone and overwhelmed.

One particular Sunday we were struggling to keep the children quiet (not successfully) so those around us could worship, and perhaps carve out a minute or two for myself to listen as well.  A sweet woman behind me leaned forward, smiled at me, and pulled Ellie into her arms. Little did I know I had just met my angel and my first 911 Group member.  Liz and her husband Kyle had 3 children, all of whom were out of the toddler age.  They adopted my family as their own and soon had us over for Sunday dinners, fun afternoon swims in their pool and the occasional horse ride.

As Levi's behaviors progressed from temper tantrums to extreme anger and violence, Liz was the person I confided in about my struggles with Levi.  It wasn't a secret, his behavior was out of control and he had meltdowns in public and private all the time.  I was worried about what might be wrong and she helped me talk things through.  I was worried about the safety of my other children and my own sanity.

Levi was large for his age, but still young.  I could pick him up and remove him from hurting the others, as long as I was close enough when the meltdown began.  Unfortunately, I still had 2 other children to care for and a house to run and I wasn't always within arms reach when the anger and violence began.  And his meltdowns could last hours.  This was physically exhausting and stressful for me.

I was living on caffeine, fear, and adrenaline and was close to breaking with the daily meltdowns.  I called Liz during a really bad meltdown and tearfully asked her to come help me.  When Liz walked through the front door, Levi saw his good friend and an interrupt happened.  The meltdown stopped. He was distracted by a friendly face and forgot about why he was upset.

We had been searching for the reason behind the meltdowns. BJ and I took parenting classes.  We found a psychiatrist for Levi.  We went to a therapist.  We saw multiple doctors and were moving forward with getting him tested.  We were exploring many options to help us understand the source of the problem, but the process can take years and nothing had worked so far.

I realized that having Liz come over stopped Levi's meltdown. We needed to "interrupt" his behavior pattern and then we could distract him with other things.

After I realized this, I called Liz over many times to help me stop a meltdown. I didn't need her for every meltdown, just the most aggressive and violent ones.  I began calling her 1-2 times a week and I soon realized this was too much to ask of one person.

So I prayed and asked God to help me find people that could help me.  I looked for people who had experience with special needs or mental illness because I knew that they would understand and have compassion for our situation.

One older couple I selected because their son had been diagnosed with schizophrenia. One friend I asked to help had bi-polar disorder.  Another had a mother with mental illness.  I approached each friend after much prayer and told them what I needed.  I needed people willing to help us at a moment's notice, who wouldn't be scared by Levi's aggression, and who would come with compassion and love.  Each person I asked was so kind and willing.  I couldn't believe how much God had blessed me.  I soon had a group of people willing to help.  I felt grateful that so many people were willing to help us.

One Sunday after church (which seemed to be a trigger for Levi), he was having a particularly bad meltdown.  I called the older couple and asked for help.  They came within minutes loaded down with board games.  They walked in (ignored his behavior), set up a game, and asked if he wanted to play. Of course he did!  He loved games and attention.  Interrupt successful.

Another friend came as I was trying to load the car with all the children.  Levi hated car rides and was close to kicking out car windows.  She climbed in the car with a about 30 keys on a key-chain and a lock in her other hand.  Again ignoring his behavior, she told Levi she couldn't figure out which key unlocked the lock.  Could he?  Interrupt successful.  And he became so interested in the lock and key puzzle, he left to spend the day at her house.

As the 911 group began easing the burden that was on me, I called on my neighbors next.  I found out my next door neighbor worked with special needs children.  She taught me gentle holds I could use and how to get him to release hair or a bite.  No judgement.  She offered compassion, understanding and help.

Other neighbors offered to be a refuge for my other children who were by now 3 and 4.  I could send them to any of 4 different homes willing to take my children in so they wouldn't have to be around during a meltdown.  Often, they would send someone to check on me as Levi grew older to make sure I was okay.

This 911 Group lasted 11 years.  I am still overwhelmed by the love, understanding and compassion of the people who chose to help me.  I never felt judged by them.  And as Levi grew (he is now 6'4" and 270 lbs!!!) they continued to help us and look after us.  Many of them still check on us to see how things are going.

If you are struggling with behaviors that are difficult to handle, I would suggest you create your own support group to help you.  Here are some things I found helpful when creating this group.

  • If you are blessed to have family close by, start there.  Sometimes those close to us would love to help, but they don't know how.
  • Look for people with experience with mental illness, special needs, or chronic illness.  They will often be compassionate and understanding of your situation.
  • Pray about people that you should invite.  I had no idea my older neighbor worked with special needs children.  God led me to her and she was a wealth of knowledge.
  • Explain to the people helping you what you need.  For example, I needed people who would ignore Levi's behavior but be able to distract him.  I didn't need a person to discipline him, I needed people to love him.
  • Let people know how to get to you.  When I was in the middle of managing a meltdown, I couldn't answer the door.  I needed them to just walk in and find me.
  • Have a code word.  At first I would call people, but after a while I could just text HELP and they would come. 
  • Educate them to the interests of your child.  Levi loved games, horses, puzzles and the park. People came prepared with those things to distract him.
Over the years Levi received the help he needed.  That story is for another day, but during the time of trial and error, we needed help.  Don't be afraid to ask for help.  Some people may turn you down, but many will be willing to help. 

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