This interview began months before it was actually given,
but the true beginnings started years and years before that in a little town in
Washington State in a sleepy little Junior and Senior High School. The first time I actually ever remember
Shonnie was when she was in the eighth grade and my family had just moved back
from Alaska. She was a few years younger
than I was (I was actually in her older sister’s grade) but one thing for sure there was no way that anyone could really forget the blond, bubbly,
and outgoing young woman whose father was not only our school’s English
teacher, but the football coach as well.
I was quite the opposite of her in many regards with my dark hair and very quiet/shy nature, and I didn’t really socialize much with her because she was a
few grades below me (well I didn’t socialize with anyone really)…but
that was the thing about this irrepressible little place, although I moved away
to graduate from another school it was as memorable as the people who lived there.
So imagine how remarkable it was that some twenty years
later that I would reunite with and discover that someone who I remembered in
such high regard shared something with me. We both shared being autism moms.
The moment we started talking about our experiences in her sister's home for what seemed moments was really almost an hour that first visit and much the same the second
visit while I had the interview with her. I really admire this woman in so many ways. I am so pleased she
took the time to share with me and other families by helping to educate about what our families go through,
feel, and have gone through during our time as parents to our beautiful spectrum babies.
As
I sat in my car between meetings, I began my interview with
Shonnie. Just as it was so many months
ago when we first started talking about our special kids a seamless interaction
happened. It was a conversation that can
only be shared between two parents relating with each other about their
children on the spectrum. Her relaxed
manner, sense of humor, and basic perspective about how she feels about her
daughter is much like how I see my sons.
Of course we are two separate individuals with very different views
about certain aspects of autism; we share the most important thing: Love.
We love our kids and neither one of feels that the other is wrong or
mistaken. We both understand that how we
raise our children is built on that love and that our similarities are much
more valid and important than the very few differences that we have. It is true, even when the rest of the world
doesn’t want to see it, that no one can truly understand what
it is like to be a parent of an autistic child unless they have one. People can read about it; they can even try
to put themselves in our shoes, but they will never know the hardest parts of
parenting our spectrum kids and how those hard times will lead often to the
most rewarding and special moments that we will ever have.
Shonnie is an amazing
person all of the way around. She is
bubbly, she is strong, she is
determined, she is full of life, and she is an autism mom. Like all of my interviews she and I started
discussing when it was that her and her husband began to realize that Macall was on the
spectrum; like so many other parents the signs began to show themselves at
about one-and-a-half to two years old.
Her daughter’s diagnosis then came at three years old which is about the
standard age that specialists tend to feel most comfortable making that call. Macall would be considered
mid-spectrum (spectrum is based on verbosity) she comprehends most words in
speech; however, she struggles to verbally articulate her own responses to others. Her use of speech is intermittent and there
is some echolalia (she will repeat words randomly after hearing them). Shonnie believes there
might be an element of stubbornness coupled with a likely secondary issue like
dyspraxia that inhibits her child’s ability to use her words. Seeming stubbornness is pretty common with children/people on the spectrum and the use of
speech can be based on motivation or their desire or lack thereof to interact with others. Autism is a socially based disorder in which
the person having it often feels stressed by the interactions between
him/herself with others, which stands to reason why someone on the spectrum would choose to
avoid speech based interactions. Macall is much
like this, but her sweet and gentle personality shows itself in other ways
outside of her use of words. There is an air of whimsy and genuine kindness in her smiling eyes.
It is the issues with
speech that seem to sadden Shonnie most as she desperately wants and hopes that
some day she can communicate better with her daughter. Especially those times when Macall is having seemingly unexplained tearfulness and sadness; possibly even pain that she is unable to express
verbally to her mother. There is nothing
so helpless to a parent than to watch his or her child, know that the child is suffering,
and not be able understand what it is making her poor child suffer. And it is in these moments most of all, that
she hates autism; Shonnie wants only the best things for her children and
Macall is no exception. She wants for
her child to be able to share what she is feeling, not have to struggle with
all that she struggles with, and for not to have pain or discomfort. If she had ability to speak or share her feelings in
some way this would help all of those things.
And so she hates autism and what she feels autism has kept from her daughter. This is not an
uncommon feeling for parents with children on the spectrum. They love their children more than life
itself, but hate the disorder that has ruled their lives so very completely. She loves her daughter in
ways that perhaps, much like her daughter, she cannot articulate just how strongly and completely those feelings are.
For Shonnie’s husband, the
hardest thing for him is not knowing for sure what to do for his daughter’s
future. In reality, most parents make a
plan in the back of their minds as to how and who will be there for their special children when they will no longer be here. The hope always is that these children will
grow into sustainable adults, but with interventions mostly focused on the
younger children (as it is important to focus early on) there are very few that
carry on after age ten.
We need other programs specified for these autism children especially as they grow into
young adulthood. It is the only way for this to become a reality. Schools, government agencies, and other
‘resources’ often generalize special needs too severely; they do not focus what things relevant and important to autism programs. There NEEDS to be autism specific programs which focus solely on helping young adults into independence. It is because of these 'unknowns' that it is so hard for
her husband to make a financial plan for Macall. They just do not know
where she will be in the next six years; or for that matter, where they will be as they age in respect to what her continued needs or care might be later on.
Macall’s siblings, two
brothers, are amazing social models for her and even though they may not see it
they are helping her all of the time by being exactly who they are they are, but they are helping her. Like most teenagers, her oldest brother struggles
with his sister’s behaviors and is a little embarrassed at times as he learns
to accept and cope with her differences. While the younger brother seeks always to try various ways to make his
sister’s life better and find ways to help her as she struggles with things
that others do not. Both boys love their
sister and are finding their way with her; often times the siblings without
autism feel this way. Just like their
parents’ they feel a little helpless; which is why many become over-achievers
to compensate for their spectrum sibling.
And like many parents Shonnie struggles to maintain balance for them all, and often feels the slight pangs of guilt when Macall’s needs seem to necessitate focus away from the boys.
But as with many families
with a member on the spectrum, the needs of their sister and her safety often
have to dictate the course of their choices. Especially since Macall has wanderer/runner tendencies, like many spectrum kids, her home
is the safest place for her to be because of this. Shonnie shared
a few stories of Macall's elopement with me and they are similar to many I have heard from others and have even experienced with my own sons. One in particular involved a terrifying
incident where little Macall found herself right in the middle of a very busy
road with cars driving insanely fast all around her. What came to Shonnie’s mind, and mine as well as she shared was: Why would people continue to drive
knowing that there is a small child in the road? Why wouldn’t someone stop and try to help
this child find her way home or at least stop the cars from driving passed her? It had to be obvious that this was no place
for a girl of her age, but we live in an age where people are afraid to get
involved, so much so, that no one even knows how to be a true neighbor anymore. This is just some of the things that we face
when our children potentially leave our homes: safety from the dangers that they do not
readily understand. Social media has
brought to light many missing autism children’s cases and it is terrifying for those of us whose children are amongst those who wander. Elopement usually ensues after a stressful or
overwhelming episode for our children, which is why it is so hard for us to plan anything from simple trips to the store to harder longer trips like vacations.
As many parents are apt to
do, their homes become their spectrum child’s ‘safe-place,’ they often limit
visits with people to their homes and most activities are based on the need of
the child who requires just a little more.
They work and try all of the time to find activities and things to do
outside the home for the entire family. Is is always their hope that Macall is able to make it
through the event…sometimes; many times, they have to come home and depending
on the day the plans just don’t happen.
It is these times that Shonnie feels the saddest for her other children,
but especially with the move from Washington their network of support lessened. This is not uncommon for autism
parents/families. The lack of support sometimes causes them to isolate a little more from socializing with friends or participating in activities together as a couple. But they still try and are committed to each other and their kids.
As has been expressed trips outside the home are stressful and like many parents, Shonnie
has faced some adverse reactions to her child in public. Ignorance is the main cause, intolerance
another, and it is the families who suffer most. It was about five years ago on a plane to a family wedding that a
fellow passenger ended up making an already stressful moment worse for this family who was just trying to take a simple trip like anyone else would do:
"...I sat next to Macall and Bill sat with the boys. Just before the flight was full and doors were shut, the man sitting in front of Macall's seat turned around, scowled at her and growled, 'Will you PLEASE stop kicking my seat!' I said in my sweetest voice, 'I'm sorry, sir, my daughter has autism and doesn't know any better. She doesn't mean to kick your seat; she's just adjusting herself.' He barked back, 'I DON'T CARE! Control your child!' I was not expecting that response. When most people find out her 'misbehavior' is due to a disability, they respond with understanding or at least give me the deer in the headlight look and ignore us from then on.
The doors of the plane were being closed and we were instructed to turn all electronics off. This made Macall really agitated because she LOVES her iPad and that was the only way to make her sit even somewhat still in her seat. Because she was mad about her iPad being turned off, she started fussing and kicking her legs out, which made the man in front of her even more angry. So, I switched seats with her, but she was mad about changing seats...she was spiraling into a meltdown and I was running out of options on how to redirect her behavior in such close quarters! As the last passengers were boarding, another guy walked up to the grouchy guy and told him that he was sitting in his seat and needed him to move. Grouchy guy was NOT happy about moving, made the guy show him his ticket to prove it, but moved...which placed him in front of Macall again, since we had traded seats earlier! Noticing this, I tried to trade seats with Macall again, which was making her REALLY mad at this point! (the whole time this was going on, he kept muttering things loudly directed at Macall and me - something about us being inconsiderate or something - and kept looking over his seat with a scowl).
The more agitated Macall became, the faster I started to lose it, and before I knew it, I was crying. Yes, the situation was stressful, and the grouchy guy was an ass, but I usually don't break down. In my experience, when a normal human man sees a woman crying, he usually softens a little...not this guy. He didn't care that I was crying. He didn't care that Macall was crying. He didn't care about anyone but himself...which upset me even more and made me feel like this epically bad situation wasn't going to get any better. I was wondering how I was going to survive HOURS on this plane with my dear daughter..."
People see our children
and assume that since they look ‘normal’ or that because our children have
special needs it is not their issue to deal with. If this were true why does the saying
go: ‘It takes a village to raise a
child’? At what point does our
compassion for people end and begin? At
some point, people will need to understand that until a cause for autism is
definitively found a cure cannot be made and with numbers rising all of the
time we all need to realize that this is something that isn’t going away. In many ways, autism families (as well as
other families with children with special needs) face our own kind of prejudice
and it can come from anyone at any time and in any place. In this instance, the behavior of the man likely made Macall's issues far worse. Autistic people are more sensitive to those kinds of feelings than people often realize. The fact that she is a child quite frankly makes his behavior completely inexcusable; I almost worry about/pity his children if he has any. To be that angry over something that no one can control is probably the uglier side of human beings, but my favorite part of her sharing this was that the flight crew had her back; they showed compassion for the situation. They could have easily sided with him.
Although this man might seem to have a viable excuse for his ignorance, most families who
have special children like ours have had to from time-to-time deal with
schools whose educators aren’t always open or amendable to changing their idea Of how our children should be taught. These are people who shouldn't be ignorant and yet sometimes are much worse than someone in a position to know less. I don’t know if they even realize or mean to limit themselves to what
they perceive our children of being capable of, but many aren’t able to reach
outside their scope of knowledge to accept or change how they do things. Many have ‘their’
way of doing things and our kids will challenge that; I invite teachers often
to throw away any idea of what they thought teaching was and embrace a new way
of seeing things. This next instance
Shonnie shares is one that many parents face with public schools. In a
perfect world, everything would always be done the same way for everyone…but
what a very boring world that would be (1) and that is just not the way the
world is (2):
"...Macall's Essential Academics teacher called me one day & told me she had been battling the principal for quite awhile in Macall's defense on a number of things, but in this instance, the Principal wouldn't relent. She was told that under no circumstances was Macall to be allowed to nap at school, regardless of what the parent (me) had requested. If Macall was allowed to nap, then she'd have to allow ALL students to do it also. She was also threatening truancy because Macall was missing a few general Ed classes (PE, Art & Music) repeatedly. That was ridiculous because those 3 classes had to be adapted for her anyway because she didn't always have the skills to play with her peers (although, all 3 of those teachers did an excellent job of including her in as many peer activities as possible, then let her run the lines, ride a scooter, or whatever else her heart desired, when peer games were too difficult for her). After being given the heads-up, I went into Macall's ARD IEP meeting. Everything went smoothly for awhile, but there was a lot of tension in the room. Anyway, when they brought up the nap subject towards the end, I was very professional, but made the Principal look stupid when I said, 'you realize the purpose of an Individualized Educational Plan is to create a learning environment that HELPS the child learn, not HINDER them from learning, right? That's where the word INDIVIDUAL comes in...it's not one size fits all...that's why there's a meeting & paperwork. She needs rest to be able to learn. Her body doesn't always allow her to get 8-9 hours at a time. Her body doesn't function like a "normal" kid. Autism does that. In fact, sleep issues are a common issue with kids with autism. Are you aware of that? I would be happy to share some additional information about autism if you'd like." She was (angry) and asked me if perhaps Macall was doing it on purpose to get out of schoolwork. 'If there's a medical reason for her to need to take a nap, then we can make a special exception for her, but I think it could just be a behavioral issue.' I remember making a sarcastic remark about after having missed out on a full nights rest for almost 10 years, I'm pretty sure I would've addressed that by now. In fact, I had/have been working with her pediatric neurologist for the past few years to remedy that issue. I would be happy to ask him to write a letter to the school, giving them their 'medical exception'...which I had on her desk the following day. It was ridiculous how clueless & difficult she was about disabilities, but hopefully I was able to educate her a little."
This particular
administrator has since left, but the reality is that so many upper level
public education bureaucrats have long since forgotten that these are children,
but instead see them as dollar signs that can make or break a budget. Putting kids in boxes with labels and cookie
cutter molds is one way of keeping costs low.
Until we completely fix that seeping wound we will not fix education;
many teachers have tied hands and their salaries are so small that they cannot
fix the situation on their own. They
also are not able to speak up or make needed changes, because like anyone else they
have to keep their jobs. Many do try,
but like any other group of people there will be those bad apples who besmirch
the profession, unfortunately.
Although, Shonnie has
experienced some negative things from the outside world, she feels as the
prevalence rises and more knowledge about autism is made known people are far
more understanding than they once were.
She admits that there have been times that someone might still cast a
look of disapproval or exasperation, but as soon as they see her signing with
her daughter they tend to realize the situation and are more understanding than
they might have been otherwise. It
is this reason that I continue to share stories of families, cover the
statistics and rate of growth of diagnoses, and to address common questions, or
just share the good things that our chikdren bring to this world. Ultimately, we will continue to face a form
of discrimination for some years to come, but it is my hope that as I continue
to write these blogs and share that it will help somewhat ‘normalize’ children
with special needs. They are just like
anyone else, they are different and it is the differences of all children that
we see diversity and the betterment of human beings to learn from each other.
Shonnie and her family
hold my utmost respect and she keeps advocating and protecting her daughter
just like many mothers do. They finally
have her daughter in a school that she deserves to be in with educators that
are unafraid to reach outside of the box and look at alternative ways of teaching
Macall. They all work together to make
it happen (as ideally it should be between teachers and parents). It is my hope that more educators and
administrators learn to be much the same way as it will only help the child in the end.
I would like to thank Shonnie for patiently waiting for
this article to come out while I was moving my family this last fall, but that
is what is amazing about autism parents we know just how hard it is to adjust
to change and acclimate to new routines.
Thank you so much. I have plans
to keep moving forward and interviewing families and bring in educators this
year to gather their perspectives and ideas for change in the public school
system. I am excited to begin this new
chapter of the blog, in my personal life, and for my sons.
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