ETHAN, 13 (Wasilla, AK) | FASD, Reactive Attachment Disorder
written by his mom, Leah
photographed by Laura Stennett Photography
This story may be a little different than the
rest, for the sole fact that I didn’t have the honor to carry Ethan inside of
me, nurture him, and love him from birth. I saw a quote the other day that said,
“I don’t have a step child, I have a child of my own that I just met a little
later in life….”
When you look at my son, you see a 13-year-old
handsome, smiling, tall, amazing young man. I doubt you’d see his disability. You
won’t see what he’s fighting, you won’t see what he deals with every day, and
you sure won’t see the demons he battles before he closes his eyes at night.
Ethan was 6 when I met him. I was dating his
father. Ethan always seemed a little angry, and his dad told me he’s had an IEP
since he entered the school district. For a couple years, I’d tend to Ethan as
a step mom, and then we moved in together and he wanted to call me mom. His
anger was getting worse, I always knew there was going to be residual feelings
of abandonment from his mom leaving him…but this was far beyond that.
We started the long, long journey of
counseling. Every time we’d bring something up, counselor after counselor would
say, “I think you should get him tested for Fetal Alcohol Spectrum Disorder –
FASD”. I brushed it off, as did my husband. There was no way that Ethan had
this, although his mother left him, my husband said there was “no way she’d
drink while pregnant and hurt him in such a way.”
We met another counselor. It was always “His
anger and resentment is too much; I don’t think I can help him; there are some
underlying issues here that you need to figure out’.
He was diagnosed with ADHD, Depression,
Bi-Polar Disorder, Coordination Disorder, Anxiety, Dyslexia, and every time we
got one diagnosis another would come along that didn’t make sense.
In August 2013, we finally made the choice to
take Ethan to Assets in Anchorage, an FASD testing facility. Several months of
testing was done. We saw a general care doctor, an occupational therapist, a
speech therapist, we had a neuro-psych evaluation done, and then all the
doctors had to come together for their results. They had to send his brain scan
to the University of Washington, along with the structure of his face.
That December we got a phone call – “We’ve
reached a diagnosis, we have an appointment scheduled for January”.
Waiting that long was horrible. My husband and
I still swore up and down that this couldn’t be. Although, when I tried to
cancel the diagnosis process, the coordinator of Assets called me and told me –
“Don’t…”. He had received Ethan’s birth records where the doctors noted he was
suspected as a polysubstance baby. What this meant was that Ethan was exposed
to 2 or more drugs that can cause impairment or distress. These can be anywhere
from alcohol, nicotine, marijuana, meth, or even prescribed medicines. So we
continued.
In January 2014, we sat in a big office room,
with several empty chairs. My husband I sat there waiting, and waiting, and
waiting. The coordinator came in, along with someone referred to as a ‘parent
navigator’. He started to talk about the diagnosis process, and saw my husband
and my eyes glued on him, not blinking, just waiting.
He stopped, and said ‘All right, I’m just going
to give you the news. Ethan has Partial Fetal Alcohol Syndrome. pFAS”. My world
came crashing down right before my eyes, a box of tissue was handed to my
husband and I as we cried, and cried and cried.
pFAS – WHAT?? What is that?! How? You mean to
tell me everything my son is going through was preventable?! I could handle
depression, I could handle coordination disorder, I could handle anxiety, shoot
I can even handle ADHD and Dyslexia…but a 100% preventable disability? pFAS
means that Ethan has every sign of FAS except the size. On a scale of alcohol
related disabilities, the most severe is FAS, followed by pFAS. His prefrontal
cortex is shrunk down to 1/3 the size of a normal brain…not only that, but his
‘thinker cells’ in his brain were killed, and replaced with ‘mass cells’ that
do not fire off the way a normal brain does.
This is a 100% preventable, non-curable,
lifelong disability. It will not go away, it will never go away. Then, another
blow – your son also has Reactive Attachment Disorder. WHAT?! Out of all of the
attachment disorders, REACTIVE attachment disorder? Literally the worst one out
there. I fell into a pile of jelly and just cried and cried and cried. I held
my husband and my husband held me…we walked out of there and said – our son
will not be a statistic, and he will thrive and excel.
Reactive attachment disorder is one of the few disorders that can be applied to infants. It is a disorder caused by a lack of attachment to any specific caregiver at an early age, and results in an inability for the child to form normal, loving relationships with others.
Reactive attachment disorder is one of the few disorders that can be applied to infants. It is a disorder caused by a lack of attachment to any specific caregiver at an early age, and results in an inability for the child to form normal, loving relationships with others.
We sat down, and spoke with Ethan’s biological
mother. Along with the alcohol, she was taking anti-depressants and
anti-anxiety meds. Those mixed into a disaster for Ethan.
Ethan is now 13 years old, on the outside it
looks like we have the perfect life. But what people don’t see is the constant
walking behind him. Until this year, my 13-year-old son could not be
responsible for wiping himself after he went to the bathroom. Until this year,
I could not give him multi-step instructions and expect him to follow them. Until
two years ago, the rages he would break into, and the violence he would put out,
was something that thankfully most parents won’t ever have to deal with.
These are just a few of the things he’s given
me permission to tell you all about. What he doesn’t give me permission for,
and what no one sees, is a whole different story. Ethan wanted to do this photo
shoot to bring awareness. He was also asked to be on the brochure for FASDx to
bring awareness. We both want people to know to not judge a book by its cover.
Don’t think just because he looks ‘normal’ that he’s not fighting something.
What I’ve seen in these last few years is a
child who is emotionally so many years younger than his age, but is fighting
battles grown men would find challenging. I see a boy who is not ‘supposed’ to
love people, form bonds, form attachments, be kind, be gentle, and be patient
do just that and then some. Who looks for the safety of others, and looks at
the feelings of others before he even looks at his. He experiences pure joy
just by watching his family love each other. I see a boy who’s not supposed to
recognize his feelings stand back and say ‘you can’t hurt me anymore’, and ‘I
will not stand for it’.
Ethan fights every single day to achieve some
kind of normal, but falls short a lot of the time and beats himself up for it.
Because he only wants to be like the other kids, and to have his brain work
like theirs.
You never know what is going on with a child
that you deem “normal”. You never know what that parent is going through on a
day-to-day basis. You don’t know how long it took that mother and that child to
get out of the house to even make it to the store to just get milk for cereal.
I made it my mission to educate mothers, and help them to make the right
decisions. I have been to seminar after seminar for FASD, I have sat in with
classes for the head coordinator for FASD in the state of Alaska. I have had
her come to my son’s school and watch him to see how we can help more and what
we can do. I have spoken in meetings, and spoken in events to educate mothers
who think even one glass is okay to drink.
I will wrap this up with a few educational tips
I always try to start with. The one glass of wine you drink, will absolutely
and immediately kill brain cells on the brain your child is forming. The glass
of wine that you drink will stay in your baby’s system much, much longer than
it stays in yours. You have a fully functional liver to process the alcohol. An
unborn baby does not. Everything you drink goes to your baby – everything. Some
women do drink a few glasses of wine, and their babies come out with no
lingering signs of an FASD – others just have those few glasses of wine and
their babies are impaired for the rest of their lives.
Caregivers who wish to learn more about FASD testing can find more information here: https://www.facebook.com/fasdxservices/
Caregivers of children with an FASD diagnosis can request to join these private Facebook groups to connect with others in similar situations:
So Brave of him to share his story...I would say what a wonderful person you are to have fought so hard for him...but as a mom of a child born in my heart, not in my womb, who came with a 6 years of abuse, I know...well...us moms, do what we have to do! It's the same as any bio parent... he sure got lucky in the mom department!
ReplyDeleteHandsome boy! Beautiful photos!
ReplyDelete