|
"Honey,
you must give your children roots,
but you also need to know when its time
to give them their wings!"
I often think of this with our
children and little by little I am trying to do that. I am
learning to let go with my teenager who doesn't have FAS. I know I
can trust him to make his own mistakes and be his own person and
grow up the way he decides to grow up. I can let him learn to fly
on his own. And I can allow him to become the person he is, not
the person I want him to be. And that's okay. One of these days he
will leave the nest and I will be soooooo sad, grieving the
leaving of my "baby." I know he will fly just fine,
because he has good roots and strong wings. He will soar to
heights I can only dream of.
I want my son with FAS to have the
same chance for independence. But I know it will take longer
before he is ready to leave the nest. After he leaves, when I
can't be with him, he will need a support network to help him
manage.
Steve Neafcy describes what
happened when he tried to leave the nest too soon:
My problem was not knowing I
was FAE until age 43 years. I was expected to fly with the flock
when I had a broken wing! Using this broken wing to try to glide
with all my peers was a living hell but the worst was failing
and seeing the Disappointment in Mom and Dads Eyes...
Our alcohol affected baby birds,
like all other baby birds, want to leave the nest. Everyone
(family, society, school, psychologists) seems to say we should
give them their independence, even if they have disabilities. If
we don't we are called "overprotective" and "hypervigilant"
and accused of not allowing our children to enjoy the freedom that
other kids have that our kids should have too. We should let them
fly, so we're told.
Let's look at those wings.
They look normal. Hmmmm. The wings aren't broken, they just
didn't develop fully, they are stunted at baby bird size
underneath all those feathers, and cannot support an adult bird in
flight. But nobody realizes that until the grownup baby bird
takes a flying leap out of the nest and lands on his little beak!
Oops. Too late.
Now the wings really are broken. So
we take baby bird back into the nest, but now we have a baby bird
that's a grown up bird with a bent beak, wobbly wings, and a taste
of the freedom of flying through the air. And he wants to taste
that freedom again, so he flies again, even knowing he might crash
again. So it goes.
Now, what if we can't take
baby-boy-man-bird back into our nest? Or what if we can't keep him
there now that he has been out of the nest? With broken wings and
a bent beak, he will be the laughing stock of all the other birds
and he will also be a candidate for becoming cat food. Yeah,
there's cats out there, and dogs, and coyotes, just waiting for
our little birdies who try to fly but can't.
I'm not going to explain who the
predators are, you can figure that out. Vulnerability is a
secondary disability, remember? So is arrested social development.
So is impaired judgment, and lack of impulse control.
Not conducive to flying freely in
those tempting blue skies. When our birdies fly, they see lots of
pavement and never a mountain top.
This message is not a slam to
the moms and dads of birdies who have flown and crashed. They
didn't know this was going to happen. They all tell me that if
they had known then what they know now, they would not have cared
if they were called "overprotective" or
"codependent" or "hypervigilant" or
"neurotic" or whatever else we've been called. They
would be even MORE protective and vigilant.
This message is not meant to
squelch any parents' hopes for their child's future. The
failed flights that we see today are due to lack of adequate
intervention in the early years, and also were fueled by false
hopes fed to us by the disabilities community and others who,
meaning well, have pushed independence and inclusion and
mainstream as though our kids could just sail right along with
their peers if we only "let go."
Maybe some of the little ones
really will be able to fly when they are older. The chances for
independence in living and employment for kids with FAS/E growing
up in the 80's is very low, according to Ann Streissguth, but I'm
sure that chances will increase as we learn more about effective
intervention strategies for FAS/E. We also need to work on selling
the importance of these interventions to the "system" so
that our birdies get the support they need to fly, even if it
means flying with them to support them when they start to veer off
course or take a dip too low.
Even if only 10% of those birdies
with bent beaks & wobbly wings are able to fly, that means
that one in ten might be able to make it. We know that the range
of alcohol effects is wide, and each child has unique abilities
and disabilities. We know that there are many problems that are
inherent with the syndrome. But we also know that a few can
function somewhat independently. Parents can draw from the wisdom
of those who have travelled this path before, but in the end they
will need to rely on their own judgment to determine if and when
that time to fly may come. Every child has the right to earn
whatever degree of independence he or she is capable of without
jeopardizing the loss of that indepencence. The child also has a
right to safety and quality of life. It is crucial to be able to
recognize the limitations without losing hope of fulfilling the
child's potential, in order to find the balance that offers the
greatest chance for success.
We need to be realistic in the hope
we offer to younger families. It is not fair to encourage parents
to have unrealistic expectations for the future of their children.
Hope that is built on false ideas today will be crushed
mercilessly in failed attempts to fly tomorrow. I think it is
healthier to give parents a realistic hope mixed with warnings of
the dangers inherent in FAS/E that might be a little hard to
swallow now, but in the end a lot of pain and grief can be avoided
for families.
I was fortunate enough to have good
information available to me as during Johnny's adolescent years,
and I had the foresight, even before Streissguth's reports were
released, to know that Johnny would never be able to fly on his
own. So I prepared him for this, starting way back when he
would talk about "when I grow up, I want to drive (marry, be
a daddy, become a famous drummer in a band that makes millions of
dollars, etc.) Now, I was careful enough to not burst his bubbles
completely, but I also loved him enough to not let him believe
that all those dreams would come true. Instead of taking away his
dreams, I changed his dreams a little. He can learn to drive (way
out in the middle of nowhere), and marry (if he ever finds someone
who will have him), or stay single (no shame in that, I learned),
be a daddy (to a puppy or two), make lots of money (70% of minimum
wage is a lot of money in John's eyes) and become a famous
drummer (almost everyone in Tucson has seen his video or has seen
him on TV or in the newspaper, so he feels famous).
Does he want to fly? Of course he
does! But he knows his abilities and his limitations. I remind him
of both as often as I need to in order to keep him balanced
between reality and dreams. He accepts his disability, with
moments of frustration occasionally expressed with verbal
outbursts that are not unlike those of my non-disabled son
(non-abusive and quite appropriate). For every moment of
frustration with not being able to fly, John has several moments
of appreciation, joy, excitement, expectation, hope, and happiness
about living his life in this nest.
And I take him flying with me as
often as I can. No "real" independence is in John's
future, but he feels free at times and he feels happy most of the
time, and he is safe and secure within the limitations of the home
nest, and accepts the restrictions of flying only when he has his
wing supports on (mom, brother, mentor). This boy-man-birdie has a
straight beak and a strong body and a bright mind and a happy
spirit. The wobbly wings don't really bother him that much,
because they just aren't an issue. But we never forget for a
moment that those wings will not carry him farther than he can
fall.
My job as mama bird was never to
prepare John to fly off on his own. My job has been to ensure that
the proper supports are in place so John never has to experience
the pain of hitting that pavement or the fear of being confronted
by predators. My job is not done yet, so I'm keeping this little
bird right here under my wings, that have become stretched and
strong over the years of being "overprotective."
"Somewhere over the rainbow,
bluebirds fly... Birds fly over the rainbow, why then oh why can't
I?" Let's find some rainbows! And lets help our kids fly, but
never, never alone. I made a promise to John once. He came to me
with such anxiety and fear. He said, "Mom, I know I can't
behave when I'm on my own, and that I need you there to remind me
of what I forget. Mom, I'm afraid that someday when you aren't
here to be with me, that I won't be able to help myself, and I
will do something bad and get in trouble, and I will go to jail.
Mom, I don't want to go to jail. I think I would be better off
dead than going to jail." I made a promise to John that day.
I said, "John, I will not let you go to jail. I will do
everything in my power to keep you safe and to protect you from
your disability. You know you need someone to be with you all the
time, every minute, in order to stay safe." "Yes, Mom, I
know." So we work together to educate the "system"
and to look for alternate means of support, because these old
wings aren't going to hold up forever.
Some birdies don't need too much
support, and some can actually fly with minimal assistance, but
there has to be some kind of safety net in place just in case.
Hurray for the few who can make it and thrive. May they see all
the rainbows and mountain tops they long for. Remember though,
this is the exception, not the rule. I'm not being pessimistic,
just realistic. I feel fortunate in that it is relatively easy for
me to provide John with wing supports (for now, anyway). Some
birdies are heavier, so to speak, and need stronger supports than
parents can offer.
Sometimes the community is not
willing or able to help with those supports. I want to reach out
to some of those parents and offer help. That is so hard to do so
far away. That is why I do everything I can to gather twigs of
information and tips on building stronger nests. Let's all work
together to strengthen our communities so we can take our kids
over the rainbows and up to the mountain tops. Let's work on
making own own nests secure. And let's be careful about false hope
that is given as misguided encouragement that could result in
parents pushing the birdies out without safety supports.
During the early years of my
parenting John, there was not much information available on what
to expect for his future. I had to wing it, so to speak, and had
to rely on basic good parenting and my own maternal instincts.
There is so much more known today about what intervention
strategies work best. Even though we can't change the primary
disabilities of impaired neurological function that stunt social
development, we can learn how to parent in ways that minimize some
of the more avoidable pitfalls, and increase the chances of
success in school and on the job, with relationships and with life
in general.
We might not be able to
strengthen those wings, but we can strengthen the safety nets,
and we can encourage our young to fly tandem, with mentors and
coaches, who can accompany them as they discover all that life's
expansive horizons have to offer.
Return to FASD Central
Journey
to the Nest: FAS Community Resource Center
and visit Thresa's site |
Making connections to promote
restoration and renewal for families and children in crisis and trauma