Dawn Atkinson is the author of a new
"In This Together: The Journey of a
Mother & Child"
Interview was conducted December 8,
BRIGHT's Question: You have really appealed
to those parents entering into the world of special needs. Do you see
your book filling a well-needed gap?
I do see this book filling a gap. I
decided to write it, in part, because of my own frustration of not
finding a book such as this when my child was young. I feel like it
could have been very healing to make a connection with another parent
who could understand what I was going through.
I hope the people who are just
starting this journey get the most out of it...specifically, that they
are not alone. Someone else in the world understands their heartache on
a level that anyone else without a special needs child can't (despite
their best efforts).
But I also think that there's
something in it for parents of older children too. In reading my book,
it will bring them back to the beginning of their journey and I believe
that revisiting that place once in a while helps us to clearly see how
far we've come as parents and as human beings.
For the professionals, who I hope
read this book, I want them to be able to see the bigger picture with
our kids. I want them to understand that there is a whole other story
going on in life besides the 15 minutes they spend with our child.
For friends and family members, I
think this book will serve as a voice for their friend or relation who
parents a child with special needs. Sometimes it's very difficult as
the parent to explain what's going on both on a daily basis and what's
going on emotionally. I think being able to read about it puts it into
another perspective for them.
BRIGHT's Question: How would you advise a parent to
channel angry feelings towards what happened to their child into a
I'm a firm believer in journaling. I
think it's important to have a place to write down what you're
feeling, be it negative or positive, that is safe from censure or
recrimination. A journal is the one place where the truth comes out and
by doing that, often times we can find the answers we seek. Even if the
question is, "Will I ever be ok again?"
Having a journal though will not
necessarily resolve anger, but it helps to focus the anger and
"put it some place" so that we can be functional for our child.
For myself, I didn't wake up one day
and decide that I was going to put the anger behind me. In fact, it
took a good five years because, although I knew that I could not live my
life angry, I also felt that I couldn't just "put it behind me" either.
If I did that I felt like it meant that I forgave the doctors and that
felt too much like a betrayal of Jake. (It's really a much more
complicated issue that you think!).
I guess when I started seeing all the
good things that came out of this tragedy, it was easier to "release"
the anger...which is different than making a conscious decision to move
past it. Does that make sense?
BRIGHT's Question: What are the good things that
have come out of this?
Dawn's Answer: Because of what happened to Jake, I got an
extraordinary opportunity to grow as a person that I would not have
People always say that everything happens for a
reason. In the beginning, I could see no reason for such a tragedy to
be visited upon my child. Over the years, however, I came to believe
that we are, indeed, all here for a purpose and that is either to
teach or to learn. I have come to believe that, at least in this
lifetime, Jacob is the teacher and I am the student for he has taught
me much more about life, about love and about courage than I could
have ever hoped to pass on to him. He has taught me that I am much
stronger than I supposed.
Jacob has a generosity of spirit that is
difficult to see while looking through the eyes of a typical life. No
matter what goes on in this crazy world, Jacob's innocent presence
offers a shelter to even the most cynical.
He is my Muse and he inspires me to help other
people see that his life, though limited in the eyes of some, has
great value and purpose. He motivates me to help other parents in
their journey, that they might see how meaningful and fulfilling life
can be. I could go on for a mile with this question, but I'll
BRIGHT's Question: You went through
quite an additional journey with the building of your home. What advice
would you have to adapting a home for disabilities and what in
particular do you see you could not do without?
About the house? Well, let's just
say that if I had to choose between building another house and death by
fire, I would probably strike the first match! That said, it is likely
that I had such a difficult time because I am an "Idiot Magnet". Idiots
are apparently drawn to me by an invisible force!
Be that as it may, however, if I was
going to advise anyone, I would tell them to spend the extra money and
hire a general contractor! Failing that, expect that it's going to take
at least six months longer than what they tell you.
There really isn't anything I could
do without....Wait, strike that. I could have done without the Jacuzzi
tub in the master bathroom. Though my step-daughter faithfully dusts it
once a week, I still don't have the time for a good soak. (I wasn't
kidding when I said that to Liz Walker!)
Everything else was a necessity, like
the elevator since Jake is non-ambulatory; the wider hallways and door,
etc. If anything, if time and money allowed, there are a few things I
would either change or have added, like a Barrier Free Lift, for
BRIGHT's Question: How have you
navigated through the educational system?
Dawn's Answer: I started early...very early. When
Jake was only a year and a half old, I started checking out schools.
Also, I immersed myself in all the information I could find about IEPs,
etc. Additionally, before beginning the navigation process, I already
knew what I wanted for Jake, where I would compromise and, more
importantly, where I wouldn't.
I think it's important not to walk in
blind. If you do that, your child could be missing out on some
important services. Remember, this is your child and you don't have
to accept the "first offer". There is almost always room for
Also, I stay on top of things. For
example, if they want to decrease Jake's OT from 3 times a week to twice
a week and I don't necessarily agree, I will say, "OK, we'll try it your
way and then revisit the issue in 2 or 3 months. If your way doesn't
work, then we'll do it my way."
Advocating for your child is
important, but it's also important to be flexible on issues that may not
be as important as others. Sometimes, even if I know
my way is better, I still will give them a little time, even if it's
just long enough to shoot themselves in the foot!
BRIGHT's Question: What are your hopes and
aspirations for Jake?
I just hope that he continues to be the happy child that he is. I hope
that his struggles are lessened because I am his mother. I hope that
when he is ready to move on to the next life, he can look back on this
one and know that I loved him and that he did a great job as my teacher.
BRIGHT's Question: What are your
continuing therapy and trying new ones for Jake?
I am always on the lookout for new treatments and therapies for Jake,
but I find that as he's gotten older (and I've gotten wiser) I have
been able to balance my "wants" for him vs. what he really needs.
BRIGHT's Question: Can
you elaborate, Dawn, on how you have been able to balance your "wants" for him
vs. what he really needs?
This is a difficult question to answer, but I will endeavor to try. Because of the profound damage done to Jacob's brain,
developmentally, he is at the level of a 3 to 6 month old. He
cannot tell me how he feels, and because he has no concept of time,
I cannot tell him "It will only hurt for a little while".
Therefore, any therapy I try would have to have a significant
success rate in order for me even consider doing something that
might be invasive or painful.
Take the Ketogenic diet for example, which was suggested to me when
Jake was maybe 5 or 6 months old. First, Jacob is in the category
of seizures that are the most difficult to control. The ratio of
success with the diet in this group is about 15%. Success is not
complete control of seizures, but rather a 50% reduction in
seizures. On top of which Jake would require surgery for placement
of a G-tube (which he didn't have at the time), and a lengthy
hospital stay. At that time, they would starve the kids for about
two days to begin the program. As much as I wanted Jacob's seizures
to be under better control, I could not put him through all that
with such a slim chance of a good outcome. He would not understand
why he was in all the pain from surgery, nor would he understand why
he was so hungry and not being fed. In this case, the ends did not
justify the means. That's
probably the best way I can answer that. I hope it helps somewhat.
BRIGHT's Question: For those of us who didn't have access to your
T.V. interview, can you tell us a little bit about your park
Dawn's Answer: Well, it's not my park endeavor. I actually
came on board the project late in the game as a sort of media
valet. I had gained a lot of media contacts because of my book,
so I offered my services to the moms who created Adventures for
They are a group of three mom, Eva Quinlan,
Erica Barrett, and Mary Bruzzeze who have children with special
needs and live in Peabody, Massachusetts, (Jacob's school is in
Peabody) who got together to raise funds to build a universally
accessible playground. The city of Peabody donated a parcel of
land to the project but did not have the money to build it. So,
through lots and lots of fundraisers, these moms have been
collecting money to not only have the playground built, but they
have also created a fund to support and maintain the park for
It's not only important for children with
handicaps to have a safe environment to play in, it is also
important for non-disabled siblings to have a place where they can
play with their brothers and sisters....finally. There will be
adapted swings alongside regular swings; ramps leading up to
slides; play stations that are wheelchair accessible, etc.
Adventures for Angels will be the first
public universally accessible playground in New England! The goal
is to raise $165,000 and to date they have $90,000 toward that
BRIGHT's Question: Will you
write more books? What topics?
Dawn's Answer: Yes, I would like to write more
books. Currently, there are two floating around in my head. When "In
This Together" doesn't need me as much, then I would like to start
writing again. The two books I have in mind are a "Chicken Soup for the
Soul" kind of book and the other is a book about what to do now that
you're the parent of a child with special needs.
I'll keep you posted. Also,
your readers might want to check out my
website. (www.dawnatkinson.net) if
they would like to contribute to future books.
BRIGHT's Question: What are your thoughts
In a sentence? It's the one thing that I believe will truly be of
benefit to Jake in the future. I just wish the future was now!
BRIGHT: Thank you, Dawn for taking the time to talk with us.
You can purchase Dawn's book from the link below: