Parenting a child with Fetal Alcohol Spectrum Disorder (FASD) is extremely difficult not only because of the inherent issues that appear in a child who has FASD but also because the greater world at large still doesn't understand or "see" the "invisible disability" that is FAS/FASD.
What follows is a very long-winded account with a lot of initial background to try to explain just one incident (of many) that is representative of our lives as parents of a child with FASD.
I've written in many other posts on this blog that our son was adopted from the foster care system. His biological mother was addicted to drugs and alcohol and continued her addictions during her pregnancy with him.
Therefore our son has brain damage in the form of FASD. Yes (according to one seminar we attended) it is brain damage due to the alcohol killing brain cells in utero.
Since our son was very little he had strong emotional and behavioral issues. Anyone that would spend a significant amount of routine time with him would see the issues. He was virtually kicked out of four daycares (we proactively removed him).
Anyone that didn't have to spend time with him on a daily basis didn't really see the issues, because he can be very charming when you first meet him. Those that didn't spend much time with him would love to say to us "I wouldn't worry about it... he'll grow out of it".
But many behaviors he didn't directly "grow out of". It took a lot of intervention. For instance, it took four years, for us, with the help of counselors, therapists, and psychologists to get him out of the "terrible two's" such as he approached the age of six, he would no longer throw tantrums at the lay-on-the-floor screaming and crying intensity and frequency of a two-year-old.
Now, halfway through the age of six, he is still extremely defiant and most often simply does whatever he wants, regardless of what he's asked (or told) to do. He has no problem talking back or even yelling and screaming at adults.
Just last week, after having a bad day of "not listening" with a substitute teacher at school, the young teacher at school pickup, told me with surprise in her voice about when she had asked him to clean something up and he flat out screamed "no" at her in anger and went right back to what he was doing. It was obvious she hadn't seen that type of defiance before. And that is just a small taste of what we experience quite often.
Around the age of six, we went to the UNLV Ackerman Center and after a four-hour testing session with four different highly specialized Ph.D.'s, they confirmed formally what we already knew - our son has FASD (specifically pFAS). He has both physical and emotional signatures of this unfortunate (and avoidable) disability.
While our son is making incremental strides forward, he still struggles deeply with his behavior due to his FASD.
Recently we signed him up for an after school dance class, and the outcome was a really devastating experience for us as parents (he's fairly oblivious to what happened).
The story starts with our son having a good first week at the first class. Usually, this is the case. It's called the "Honeymoon" period.
This time however the Honeymoon didn't last very long.
In the second week of class, our son had a terrible day in class. He wasn't able to follow directions, was very disruptive, and even said things that seemed inappropriate.
I say "seemed" inappropriate because there was confusion in what he was saying, which is often the case with him.
Due to his continued disruptiveness in class, the teacher asked him to sit on the side. While on the side, some of the other class members would look over to him and he said something to the effect of "Don't look at me... They should see these cheeks, not those cheeks".
Our son is also in a Drama Kids afterschool program where the teacher often says that line to the performers indicating the audience should see the performer's face cheeks, and not the performer's butt cheeks when they would start to face away from the audience during a rehearsal activity.
Unfortunately, since our son, who talks (seemingly) non-stop with no filter, was repeating something out of context, it got misconstrued and he was "told on" to the teacher that he was asking to "see people's butts". (This was something that took a while to figure out after talking to him for a while the night after the incident)
I talked with the young teacher after class and told her about our son's FAS and that sometimes he has really bad days. We call them "FAS days". I gave her my cell phone number, confirmed she had it by having her send me a text and told her that any time he gets too difficult to text me and I would be there within minutes to get him.
Unfortunately, the very next week he had another bad day and was put in another situation where failure on his part was highly likely.
On this day, even after displaying poor behavior in class, the teacher allowed him to go, unsupervised, to the bathroom with other boys. As our son is very extraverted and doesn't pick up on social cues, he was urinating with his pants down while goofing around showing his butt saying "Bootie Butt" to the other laughing boys in the bathroom.
Then when leaving the bathroom (I'm guessing the bathroom door was opened while he still had his pants down), he was similarily was around in the front of the bathroom, which is open to the hallway, pulling his pants up and a girl passing by saw. She reported what she saw to the teacher.
Now the pants down thing possibly could have been avoided by me. When we are out at public bathrooms, I usually take my son into a stall where he can pull his pants down to stand and relieve himself. I haven't ever specifically told him not to pull his pants all the way down when he discharges at a urinal in the more open bathroom urinals.
But that is the case with our son. He always needs to be specifically told something, or he has to get into trouble for something specific before he starts to understand what is (or isn't) appropriate. He doesn't generalize, notice what other kids are doing, and most often, he has to be told multiples of times about a particular behavior before it starts to sink in.
This is part of his FASD. Due to his brain damage, he doesn't have that age-appropriate filter found in his peers. So he just does things on impulse.
Some behaviors, like his continual disobedience and backtalk to adults, still haven't sunk in, regardless of the amount of consistent positive or negative rewards we have dried tried.
Anyway... after the bathroom incident, the teacher texted us and we went to get him right away.
We decided, along with the teacher, that he should no longer attend the class.
We thought that was the end of it.
But. Of. Course. There. Was. More.
That night one of our friends, who also had a child in the class, received the following email that apparently went out to the parents of every child in the class, except for us (of course).
NOTE: I changed the instructor names as this article isn't about specifically calling them out.
Good evening dancers!
Miss Kim and myself are reaching out to make you all aware that we have had an issue the past two weeks with a young boy who signed up for our hip hop program.
We did speak with his parents last week as a final warning for bad behavior and this week, had removed him from the class early due to another incident and he will not be returning from this point forward.
We are so sorry for the dancers having been distracted by this student and are confident now that the class will be a much more productive environment.
Thank you for your patience and understanding while we worked through this. Many blessings, Coach Jamie & Miss Kim
Now, if it's not obvious how horrific it was for this business to send this email, let me explain...
First, there are only maybe 15 kids in this class. It will be obvious the following week that our son was the one removed. So this email does not truly have any privacy. This email never should have been sent. We know for a fact that multiple parents didn't complain about our son, so this coach should have just addressed the issue directly with those parents that had complained.
Second, we never discussed that our child had "bad behavior". We discussed that he had a disability named FAS that makes it difficult for him to act appropriately at times.
Third, there was no "final warning". We proactively agreed that day to remove our son from the class.
Fourth my wife and I were blown away at how this coach was so overly concerned for the other parents without regard for us, the people who live a life of dealing with "bad behavior".
Now for my big point of this article...
If our son had Autism or Intellectual Disability, this coach would never have sent an email that had such horrific wording.
And that is probably the hardest part of parenting a child with FASD. People in the general population don't yet understand FAS or recognize it to be a disability, though it is, in fact, a true diagnosis and disability.
In response to the coach's email, my wife sent the following email to the coach:
We have been made aware of the email that was sent to all the
<business name removed>parents at <school name removed>regarding our son this evening. We would appreciate a chance to speak with you tomorrow regarding why you felt it was necessary to send the email.
It is a small school and most parents will know the child who you are referring to, and many were waiting outside when we picked our son up early. If there was a reason you needed to send the email to all parents I would appreciate knowing why. We are personally embarrassed and also concerned for our son's well-being. Our son spent time in foster care and was adopted, and he does have additional needs- he has an FASD. We also were very careful to try to work with the instructor and were willing to do whatever she needed including picking him up early today. We did not receive a final warning last week, and in fact, did explain to the instructor that he had additional needs (FAS) after last week.
Our son already struggles and we work daily to try to give him the chance to have as regular a childhood as possible. Having this being put out publically on top of his everyday challenges could make his life harder. Once children and parents feel they can blame our son for "bad behavior" without understanding the root in trauma and brain damage from prenatal drug and alcohol exposure, the effect on our son could be compounded.
It is acceptable that you have asked us to remove him from the program, and we agree that it didn't work out, but I do believe the decision to send a broad email- even to parents who I know didn't complain- is highly problematic. We will also be speaking with the school tomorrow to discuss how this was handled. Please let me know when you will be free tomorrow as I am available anytime.
And of course, in truly oblivious fashion the coach responded with this email:
Call me tomorrow
<phone number removed>. The email was sent to 8 students parents, not the entire school, and all these kids have been in dance class with your son and half of the parents have been blowing up my phone the past two Wednesday because of this situation. It is not my place to share with them your son's disability’s, but they are aware and they brought it to my attention. Today they were calling Kim out in class and asked that he stays away from their children, as well as asking me to remove their dancers if this continues. My position in informing them as a whole, is to inform them that this will not continue as several parents complained. This is not typical behavior and many parents were very upset and it has become a liability for the business. Their concerns are not him being special needs or behavioral issues, their major concern is about their children and their safety and well being. I will be happy to discuss your concerns.
Your position in informing them as a whole was because several parents complained??!!! That makes no sense!
Next, did you just say that you care more about the profit of your business ("liability for our business"), which uses public facilities, than to work with someone with a disability??!!!
Also, did you just put in writing that people are asking that our child not be allowed to go near their child??!!! And that they are aware of, but don't care that our son has special needs??!!!
Now we have a much bigger issue!
Once again, I ask you, the reader, if you were to replace FAS with Autism or Intellectual Disability in the above email, would you not expect complete outrage on the parent's part to be completely warranted.
Based on the above description of what was happening to our son, we had to keep him home from school for the next couple of days while we communicated with the school administration to be sure there wasn't a broader issue at the school that needed to be handled for our son's well being (again our son goes to school with these kids) .
When we brought the above documentation to the school they did a brief investigation to verify there was no greater issue at the school.
But while the school was overly eager to help us with anything that concerned the actual school day, they could not help us (via its authority) with this after school business. And this was something that really opened our eyes to after school programs.
Apparently, after school programs like these have very little connection with the school. They are just renting space from the school and the school has no authority over them.
Since the school sends home fliers advertising these classes, as a parent, you would think these classes have a close connection to the school, possibly even you might believe they are actually being run by the school. But that is not the case. I write more about this and an incredible safety gap we discovered in my article "After School Programs: Your Child May Not be as Safe as You'd Expect".
So that's about where this long-winded account ends. With some courtesy facilitation from the school (but no actual authority) we ultimately asked for and received, a full refund from the business that ran the after school dance class and also got them to send home a flyer with information about FASD to all the parents.
And so continues on... our lives as parents of a child with FAS.