Autism parenting
is some of the most helpless feelings that a parent will ever encounter as many
parents, especially ones whose children pre-dated the most up-to-date in
education, care, and intervention, struggle to help their children become less and
less lost in the rest of the world. With
numbers of autism diagnoses on the rise, many times adults on the spectrum are
left behind as the focus is on children.
There is still so much need for support, understanding, and solutions
for those families that are trying to see what kind of future that their
children have on the spectrum long after the see other children seeming to have
successes where their child has not.
In this article,
Jimmy is a single father to a nineteen year old son that is considered
extremely low functioning autistic and he is realizing that his life will
likely be spent in perpetual care of his child.
As explained above, there were so many limited resources and knowledge
about autism when they began their journey, that his son Kyle has never been
able to find his words. Special Education programs, especially, are often woefully underfunded and children are often viewed as disposable
because they are assumed to not be able to go any further; expectations are very low. In Kyle’s case his autism was exacerbated by
severe seizures that he had from the time he was a baby and although his father
is uncertain if these seizures were the cause or just made the autism worse he
doesn’t really know.
Autistic children and people
diagnosed before this last decade are often being left behind in this world as
the focus for intervention is often placed on children in the birth-to-three category. Recent advances in intervention are helping
many of these children to surpass what was believed as possible. Kyle is a nineteen year old autistic young
man; his father Jimmy is a single parent and his primary care-giver. As with many autism families, employment
outside of the home is a challenge and even more so when the parent is on his
or her own. The journey that these
parents whose children seem to be left behind, is often one that leaves them
feeling bitter, helpless, and extremely alone. During a series of conversations with this
single dad, I began to sense a lot of that as he often relies on the part-time aide
of outside caregivers in his home and is a way of allowing him a break so that
he can do the things that he needs to do during his day. Many of these ‘low’ end spectrum children
need constant and perpetual supervision and can be very draining to a point
that is beyond the comprehension of others that cannot fathom or understand the
rigors of autism parenting. It is more emotionally difficult than it is physical.
During a conversation via Skype
with Jimmy on one occasion he turned the camera onto his son who was sitting on
the other end of the couch with a remote, a box with some wire coming out of
it. His father marveled over what it is
that fascinated his child with these items as they were nothing special or
seeming interest to anyone else except Kyle.
If a person that does not have a child on the spectrum were to watch
this activity, likely notes of confusion, judgment, or just discomfort would
play out on their faces, but most parents have discovered that it doesn’t have
to make sense to the rest of the world as long as it does our children. It is always interesting to me how ignorance
leaves people incapable of reaching out for edification on a subject, but it is
easier to take what they may not be comfortable with and ignoring it as much as
possible. This is how I see many of our
autism children over the age of 13 years old:
forgotten, ignored, not the focus of most of the intervention and
research. Don’t get me wrong, I find it
very comforting that so many parents find relief for their children these days
and that the intervention (although far from adequate still, the world still
doesn’t understand just how much autistic people can do if given the
opportunity) is so much better as what is known about autism becomes more
understood.
Kyle is just one more child that
has entered adulthood that has been looked over, ignored, and basically cast
aside. His parents were not given enough
information as to what they could do for Kyle on their own, because there wasn’t
enough information to be given.
Certainly information about this subject was more than the decade
before, but there just wasn’t enough advocacy, understanding, and awareness
when Kyle was a child for him to really be given many opportunities. In fact, his most of his childhood
his parents just felt that he was delayed, they didn’t even know the word
autism until years after their journey and it had been briefly mentioned in an IEP. “Up
until he began to have seizures at the age of two months old, he was developing
as any other infant would. He'd follow things with his eyes and giggle at
things. When the seizures hit is when he began a quick and steady regression. I
don't know that we really recognized it as autism at the time and we hoped he
would get better. I don't recall the word autistic ever being brought up the
first few years as much as developmentally delayed.” It is hard for people with children that are
not on the spectrum or that have children with no issues in their social development to
really grasp how dire this is.
For Jimmy, in our conversations,
seems to understand just how forgotten his son has become. He relayed one story about a single educator
that knew a little sign language and had been working with Kyle on it and he
was even using some of it to communicate, “I do wish that they would have
continued with the ASL in school, who knows where he'd be now with his
communication skills…He always had a difficult time in school mostly because if
behavior issues which undoubtedly arose from various frustrations with the
inability to communicate for one thing.” However, as with many schools that do not see
the potential of a child with special needs, as soon as she left the school no
one really bothered to follow up or continue this education. He seemed to lose what little he had learned
at that point. That has been one of the
vast public education system’s issues is their inability to see potential in
children with special needs and the need to invest in them. Things have changed somewhat, but it is still
often the case. A child on the autism
spectrum is often limited by the limitations of others, in this case the school. Like many parents, the Faris' were relying on these systems to be educated on proper methods to teach out children and unfortunately they haven't been or aren't. One
of his greatest and best dreams for his son at this point would be to have some
way to communicate with the rest of the world, but at this point, “I would hope
that one day he'd be able to be able to communicate better his thoughts and
feelings…My dream would be that he be able to be independent one day, though I
know he never will. Also that at the very least, that he can be potty trained.”
Autism is not just about the
person with it; it affects the entire family; people in the world do not often
see just what it is that families go through daily. In the US, divorce seems high, but in our
Special Needs community there is about a 78% marriage mortality rate of those
with a child of unspecified special need; for autism specific it is about 92%. It is not just about marriages, but the whole
family as parents begin to have guilt about the time their child with such
great needs takes from the other children. I think what Jimmy shared shows what many
marriages seem to face, “I'd have to say that the first five years of our
marriage were probably the best ones, the ones before Kyle came along and
changed things. I found that once the seizures started that Kyle then took the
majority of our time. He took time away from my other children as well as our
marriage. Before he came along I spent a lot more time with my older son doing
things like camping and such. One of my biggest regrets is how much time Kyle
took away from Tanner and also my daughter when she came along. Time I'll never
get back. It hurts to think about, like not being able to say go on scouting
camp outs with Tanner because there was no one else to take care of Kyle. He
had various caregivers over the years but he's always been such a challenging
child that I've really never been able to go very far or do much. His mother
was never much help as she was always working. I think that work has always
been her form of escaping; escaping from Kyle and his autism.”
On the outside, in the rest of
world, people do not understand the struggles and often there is judgment
passed based specifically on ignorance of the situation as to the parenting decisions
that people with children on the spectrum need to make. But imagine this…imagine watching your child
who seems so detached and lost from the world continuing to spiral further and
further away with each passing seizure with each passing day he becomes a
little more lost from you. What would you do? How would you
try to help him? Conventional
medications were not helping Kyle and the Faris’ felt like something needed to
change, especially after an outburst at the neurologist’s office left them
without care for Kyle. It is sad, but
the truth is even the educated people who should know better and understand the
situation best can still ignorantly refuse to treat a person’s needs based on
their own stupidity. This is whenJimmy and his then wife decided it was time to try something new and different...marijuana.
Below is a video from their local news station:
I can almost hear the potential
gasps and the outrage of this family seeking such a controversial topic of the
day, but what is different about marijuana than the other drugs that have been
coursing through Kyle’s veins to curb his seizures and that I might add…weren’t
really doing the job. I cannot say that
if I were in their position that I would not have reached out for another
solution and another way to help my child.
A funny thing happened though, the marijuana helped to stop the seizures
and it helped him in other ways as well, “Once we got his seizures under
control with his medical marijuana, he did a lot better behavior wise and also
improved in his ability to receive and understand instructions.” This help didn’t come in time, though. The Faris’ marriage ended through a series
of events likely exacerbated by the years of stressful living with a child with
severe autism. Lack of support and lack
of enough alone time together created a recipe for failure and ultimately
divorce.
It has been difficult on Jimmy
as he has always been the sole care provider for their son and the two of them
are often on their own together with only intermittent weekend help for him to
allow him to have some time away from.
It is difficult as many parents with children on the spectrum are shut
away from the world and often left isolated due to their circumstances and lack
of community and family support. He has
found solace in trying to focus on him through exercise and other supportive
meetings outside of the home when he is able to go. It is a lonely job that he has and he
realizes it may continue to be one for a long time to come. Statistically, single parents of children on
the spectrum will either jump from relationship to relationship as they try to
find a person that will meet their family needs or live on their own trying to
function within the constructs of society while still being available to their
child, “[The hardest part about being a parent to Kyle] I would say is the
communication barrier and not always knowing why he has some of the behaviors
that he does, like when he acts out by kicking and screaming and throwing
whatever he can get his hands on across the room. Also, all the time that he
demands, you can't just leave him alone and expect him to take care of himself.
It's a constant job; you have to be with him at all times. The only time I get
a break is when he's at school or has a caregiver or is sleeping, and even with
all that, you never know. I get calls from school when he's having issues, I
help the caregiver if need arises due to behavior, and he wakes up during the
night, usually more than once and needs attention…”
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