After answering the
door, Delessandro sat on the couch; little Carime was in the kitchen looking
curiously at me as I came into their new home.
This little family has been through a lot in the last few years, but they
always seem to keep pushing forward. It
is just like any other home one might walk into where the living room and the
kitchen and dining areas are all connected; and the layout of the home almost
seemed like a perfect example of its members.
Mathias was in his room drawing and Martinique was getting ready for her
day in hers; Cande was attending a memorial service in town. With all of the directions that everyone was going
in they seemed just like the architectural layout of the home: they were all still connected. They are connected by love.
This home like many these
days hold that of a blended family and this one specifically is bilingual: English
and Spanish. The bilingual element
seemed to greatly affect the dynamic of the home as I found myself speaking in
Spanish and often receiving the answers in English from the children. There are five immediate members of the
family and another waiting to be born.
As I sat
down with a very pregnant Martinique to discuss the two very special boys in
her home it was clear to me that she had carried the burden on her own for most
their lives without much support from the people around her. From her first marriage, to her own family; this woman has struggled to figure out
how to help her children to develop and grow basically on her own. Most autism parents, when they realize that
there is something different about their child, feel ignored by many people around them: doctors, educators, and
family. This is her journey into
discovering autism and how it has affected the family and her life in unique
ways.
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| Matthias' drawing has helped him immensely to grow. |
She began
with her oldest child and how she noticed the various things that stood out
about his early development. Matthias from about three months old he started lining objects up by
color, size, shape, etc. Most of what he
did seemed pretty amazing to others, but she was not sure if he was just picking
up on such skills from the other children in her in home daycare or if it was
something else. By the time he was about
fourteen months old other amazing things began to manifest themselves as
Matthias started communicating through spelling; he would use food or Legos and
his first intelligible word was Superman. I remember thinking about the large
size Superman action figure on his dresser as she shared the story with me. Aside from the seemingly extraordinary skills
he was displaying he only started really trying to use speech at a year, but
then stopped again at eighteen months completely. It is common to see what is known as a
regression at these ages and also why it is hard to really want to put a
diagnosis on a child, since they seemed to do amazing things previously.
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| Delesandro loves interacting and engaging with people |
She then spoke of her other son,
who had just gotten up from watching television and was
playing with his little sister, and how she realized that he was also struggling in his social development. With
Delessandro it was slightly different than his brother; he did not seem to exhibit the same abilities. He never really acquired
speech until he was much, much older and much unlike Matthias he seemed to
struggle greatly with his fine motor skills.
He just appeared to have so many more difficulties than his brother did
at the same ages and Martinique obviously worries about this by focusing on ways
to help him find success. She is discovering
that his struggles with being able to express himself that it displays itself
in his behaviors and they work hard with him to help him to overcome his
deficits. His strengths seem to lie in
his ability to enjoy the company of others (as Matthias struggles with this)
and the ability to hone his gross motor skills is pretty remarkable. Delessandro has a great imagination and
listened to him as he played with his siblings during the interview and
Martinique expressed his great improvement playing baseball.
Unlike many
conceptions, two siblings on the spectrum do not have to be twins and sharing diagnoses
does not mean that they will require the same kinds of intervention. In fact from my observations the only other
things that they even share was difficulty potty training, sleeplessness, and
that they are bilingual. As I sat and
watched and listened to them play with their baby sister, their personalities
were so very unique from one another. Matthias was quieter more quirky in his sense
of humor while Delassandro was louder and more rambunctious throughout his
play. I was touched by their sister who adores them and her laughter seemed to ripple through the
air as her mother and I spoke. If only more people saw the world as a child does, I think we would live in a nicer world.
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| Carime watching and playing |
The
struggles seemed to continue for this little family and a few years ago another
person came into their lives and likely the love of Martinique’s life; although
an educator, he is still a novice in the world of autism. Their relationship has struggled as he has
had evident stress over just how overwhelming it can be to raise children on
the spectrum, but he has transitioned amazingly and works hard to help them in their journey. Just a few years ago they
invited their daughter Carime into the world and she has been a bright and
shiny light for all of them and they expect another son in just a few days
time. Cande is still struggling to
understand their little combined family, but he is trying. He spends time bonding with the boys through baseball and takes time to patiently talk to them while they are having a hard day. However, Martinique continues to hold her head up and
takes nothing for granted; very realistically accepting whatever might come
from their relationship’s future. It is
hard for a woman to be able to accept that any might stay when the road to this
point has been long and alone.
In fact, unable to
really grasp what the issue was with the boys and not having a supportive
network of family and friends around her, she could not seem to get the answers
she needed to help her sons. She recounted an experience from her past before her current relationship with Cande, “I did research on behaviors and disorders but
nothing seemed to fit our experience and my husband at the time disagreed with
everything…friends and family continuously told me how to raise my children and
what I was doing wrong with them…the struggle to find a conclusion never ended…” Besides the lack of family support, educators
often do not listen to her and because the school that they are currently in
has managed to help the boys somewhat, she sees that they could be doing so
much more; however, tends to remain silent to keep the peace and hope for
something better to happen. This is
common as parents’ voices get lost or ignored to appease a budget or the
educator’s inability to acknowledge that the parent may have a valuable
point-of-view.
Of all of the stress from the schools, perhaps the hardest has come from her family. It really is a common thread amongst the people closest to autism parents, because
they are just that…too close. They
cannot see what is really happening as the child seems ‘normal’ and in cases
like Matthias’ have specific gifts that fall out of the realm of what society
conceptualizes as possible for children with special needs. That is just the nature of autism as many of
the people who are, are brilliant and beautiful. Family just does not want to believe what is
happening; it is too painful for them. I sat
heartbroken listening to her, but understanding what it was that she was going
through as I have been there as well. It is reason one that autism
awareness is important and why people need to be educated on how to better
understand what the parents are going through. The journey need not be so lonely.
This lack of
understanding and support then leaves the parents of these remarkable children
feeling very alone and overwhelmed and often helpless. Martinique is no different and I could see
the wear on her face as she shared her experiences with me. There is evident pain as she shared multiple
experiences of her parents and siblings blaming her or expecting her to do more
for the children without really helping.
Since their diagnoses in 2013 (after years of concern and questions) for her sons at the ages of five (Delessandro) and seven (Matthias), things have gotten a little better
as if the proof of autism has helped to quell some of the issues that people
have had in the past with her parenting, the marks of the pain are still there though. Not all wounds heal and the scars remain long after the damage is done. They are written on her face and in her voice even as we spoke that day.
She admits
that she tried to deny what she already knew about her sons for a time only
The life of
an autism parent is always one that will be extraordinary and when asked what
she felt had changed her most she said this, “I have come to realize I now live
as though I, myself, have autism. I find
myself thinking ahead for the boys and planning and sometimes stressing…” It’s the love of a mother as she tries to put
herself in their place and to help them in every way that she can. The journey is just beginning for her as a
fresh diagnosis will open doors and yet still closes others, but after meeting
with her I think that she will be able to take those things as they come and
find successes.
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| Matinique patiently explaining why we were taking pictures of them |
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