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Looking for a Different Way

Raising children with fetal alcohol syndrome (FAS) is incredibly challenging. We tried countless therapies and medications with little success. While searching the internet for something, anything to try, I came across FASD assistance service dogs. After reviewing the 4 Paws for Ability website, I was convinced and overwhelmed with relief. I felt like I found an answer to my prayers and why I pursued a service dog for my daughter.

The Reality of FAS

Miss Bee has decent expressive language skills. Her receptive language and cognitive skills are significantly impaired. Her memory is unreliable making consistent recall challenging. This deficit requires constant reteaching.  If an educator is not FASD informed, they become frustrated. 

Miss Bee’s fine motor skills are also impaired. Buttoning a shirt is a struggle however, she can apply liquid eyeliner like a make-up artist. Hand tremors, most likely caused by medication, impede her adaptive skills. Verbal directions must be broken down to single steps and repeated over and over.

Living with Brain Damage

Imagine what it is like for Miss Bee and other children to live with an unreliable brain. It is heartbreaking witnessing her struggle to complete simple tasks. Miss Bee’s faulty brain frequently becomes overstimulated and anxiety-ridden. What appears to others to be a tantrum in a child who is much too old for this kind of behavior, is her brain going haywire due to sensory overload. A nuclear meltdown will follow if I don’t immediately intervene. This type of meltdown will rage on for hours and is beyond her control.

In addition, Miss Bee has a permanent intellectual disability (low IQ). She is unable to process the world like individuals with healthy, well-developed brains can. Prenatal alcohol exposure causes permanent, incurable, and completely preventable brain damage.

Consequences

It took eight years to figure out Miss Bee’s diagnosis – FAS, intellectual disability, and mental illness. FAS affects one’s ability to learn from natural consequences. If I touch a hot stove I get burned. I learn from this experience and won’t touch a hot stove again. Miss Bee cannot connect cause (touching the hot stove) with the effect or consequence (being burned). She is doomed to repeat the same dangerous acts over and over. She cannot help it. The only way to keep her safe is with constant, eyes-on supervision and removing the stove knobs.  Locking up all knives and sharp, pointy kitchen utensils, tools, and razors are necessary.

Failed Therapies

I reached out to countless specialists and therapists but nothing helped (in hindsight, therapies failed because the providers were not FASD informed). When therapists set goals, Miss Bee was unable to reach them. The therapists became frustrated and began looking for other causes for her lack of progress. I became their target and parent blaming ensued. Miss Bee had a vivid imagination and during “play” therapy with family member dolls, she often made up wild stories. The therapists were sometimes convinced that she was reenacting our home life.

I could feel their judgment and feared they would report me to CPS. When I tried to explain that she was creating these scenarios in her imagination, they were skeptical. Cognitive behavior therapy (CBT) or talk therapy is rarely successful with children with FAS. The therapists should have recognized her FAS years earlier and used other therapies. They frequently caused more harm than good.

Missed Opportunities

When I think about those early therapy sessions, I am appalled that none of the professionals connected Miss Bee’s tiny stature throughout childhood and her obvious FAS screaming facial features. None of them bothered to read the adoption documentation I provided them from the courts that noted her prenatal alcohol exposure. I began to believe the therapists and felt like a failure.

Playing is supposed to be fun and not studied with such critical eyes especially given Miss Bee’s intellectual disability. The therapists should have recognized Miss Bee’s confabulation, a symptom of FAS. The program we attended only served foster/adoptive families.  Addiction is a leading cause of children landing in foster care. I still marvel that therapists had little understanding of FASD. We were discharged due to my daughter’s lack of progress. We failed therapy! My family was left worse off than when we started. 

Sensory Challenges

Miss Bee used to resort to self-harming behaviors when sensory overload struck. She pulled her hair. She ended up with a ring of very short hair around her head that no longer fit into braids. To others, her hair was neglected. Their harsh judgment resulted in constant mean comments. Strangers in the grocery store gave me business cards for hair braiding. The rude comments were often heard by Miss Bee and crushed her. Despite my best attempts and lots of help from professionals, I could not prevent Miss Bee from damaging her hair. She also picked scabs and chewed her nails and cuticles until they bled. These behaviors were coping mechanisms.

Miss Bee developed a horrendous phobia of spiders after she encountered one in her kindergarten classroom bathroom. She refused to use school and public restrooms. Her phobia became all-consuming. She began seeing spiders that were not there because she was petrified and hyper-aware. Dust bunnies were spiders. A light breeze on her back was surely a spider in her shirt. After a real spider web encounter at the park where Mac practiced soccer, she refused to step foot in that park for years.

Miss Bee was unable to use the bathroom all day at school and it became a medical emergency. If her medication remained in her bladder all day it would cause permanent damage. As soon as she climbed in our van during pick up, Miss Bee screamed in misery the whole drive home because she had to go so badly.

After so many failed interventions I was desperate. Coping with these constant behaviors in addition to poor sleep was a nightmare. Miss Bee woke multiple times every night and she was dangerously wandering around the house. She stopped napping at age two. Not only was I at the end of my rope trying to keep Miss Bee safe I was sleep-deprived for years. Something had to give.

Hunting for Interventions

I researched online for alternative strategies to cope with a child with FAS. At the same time, both of my children were constantly begging for a dog. I will always wonder if it was coincidence or divine intervention that led me to 4 Paws for Ability, a service dog agency in Xenia Ohio. To my surprise, 4 Paws trains FASD assistance dogs. They provide service dogs for disabled children and veterans of recent wars. I read everything on their website. The fundraising requirement was overwhelming. Coping with a difficult life was overwhelming. I initially dismissed the idea of applying for a service dog. 

The Lure

Ironically, I kept revisiting the 4 Paws website. Was this be the solution? I  shared this option with my friend Linda. She is a voice of reason. I thought for sure she would tell me to keep looking. She is a dog lover, I should have known better. I asked her to review their website.

Linda understood my interest in this program and encouraged me to apply. We had nothing to lose. How was I going to meet the fundraising requirement? Linda assured me that we would do it and she offered to help. She is one of the most generous and thoughtful women that I have ever met! We would figure it out.

Application Process

The staff at 4 Paws do not consider the severity of a child’s disability. They require a note from a physician verifying the presence of a disability. I spoke to Miss Bee’s physician and he was on board. He completed the medical verification. I sent in my application and received an email confirming a phone interview with the Director of 4 Paws, Karen Shirk.

Nerves set in with a vengeance right before the call. The conversation focused on how a 4 Paws dog can help Miss Bee. We also discussed what tasks the dog would be trained to perform to help. The director approved us for an FASD assistance dog. A solution was within our reach. 

How Tethering Works

Miss Bee wears a belt connected to the dog’s vest with a flexible cord. Tethering will help with safety awareness. I have to constantly grab her shirt or arm to stop her from mindlessly walking into a street with no regard for the traffic or light. When I stop, the dog will stop and Miss Bee won’t be able to proceed.  The tether will stop her.  No matter how hard she tries to pull, the dog is stronger and will stop her. I wanted to cry with relief.

Behavior Disruption

Our dog will be trained to stop Miss Bee from chewing and picking her skin and pulling her hair out. Miss Bee will be halted by the dog’s snout nuzzling the offending hand and redirecting her to pet him instead. The dog will get to know Miss Bee so well that he will be able to sense a meltdown coming and disrupt.  I will learn techniques and commands, over and lap, to place the dog on her legs to calm her like a weighted blanket. Instead of losing it, she will be able to relax and pet him instead.

Most Important Task

Miss Bee ‘s service dog will accompany her in the bathroom, to this scary place, to help her stay calm to her bladder. This alone was worth the fundraising and expense. I would regain some freedom. The dog will sleep with Miss Bee. I was hopeful that a dog’s presence would enable her to feel secure and stay asleep.

Fundraising

With the help of my village, we sprung into fundraising mode. I was most in awe of Judy. She gets my children’s social anxieties and dysmaturity. Judy approached local businesses to solicit in-kind and monetary donations. This task would have given me the willies. Judy was a pro and she secured a lot of donations for the raffles. Linda helped me create a plan for a spaghetti dinner. She even approached her church about donating the use of their hall and kitchen and she invited her congregation to attend the event.

We used gift cards donated by several food stores to purchase the food. Linda and Judy, Deb, Tracey, and Amanda along with her teen daughters volunteered to work at the event. Linda surprised me by flying in my sister Beth in to help.  Lots of donations came from complete strangers. I worked with amazing colleagues at UCLA. They gave generously and several attended our spaghetti dinner. My friends and family also made significant donations.

Mission Complete

We managed to meet the fundraising requirement in 3 months. Miss Bee was assigned the class of January 2015. (Please visit the 4 Paws website for information on the current fundraising requirement and waiting period). 4 Paws have a private Facebook group for parents.  Each class has its own Facebook group. We had the opportunity to get to know the families in our class before we met in Ohio. This is why I pursued a service dog for my daughter.  Obtaining a service dog has been the best decision I have made for my daughter. Ned is a blessing.

Check out my Service Dog posts:

Fundraising for Our Service Dog

Our Service Dog Training Journey