Interview Questions
Recently, a very special college student who is like a daughter to me, sent an email.
She is majoring in Special Education and was given an assignment to interview the parent of a child with a disability.
She asked if I would be willing to answer her questions. I was happy to help.
It didn't take long to write out my answers. The words just poured out.
Little did I know tears would be streaming down my face almost the entire time.
I'm not sure it really matters, but I felt the need to share. Here, in part, are her questions and my answers.
What is the background information of your
family and child with a disability?
Josiah
joined our family in January, 2002. He
is the youngest of 5 children and was born with Down Syndrome. We knew at 4 months gestation that our child
had Down Syndrome. Josiah was born with
a unilateral cataract which necessitated surgery at 9 weeks of age. Through out much of his early life he was ill
and hospitalized frequently. At
approximately 4 years of age, Josiah received the additional diagnosis of
PPD-NOS (Pervasive developmental disorder not otherwise specified ). Presently, Josiah is 10 years
old, non-verbal, not potty trained and has minimal self help skills. That being said, he is a delight and a
precious blessing. I can’t imagine life
without him and am honored to be his mother.
What are your family strengths and support system?
The
biggest strength we possess as a family is our love for God, which spills over
into every area of our lives. We have
compassion and kindness and acceptance and empathy. We laugh a lot. We look for the joy in struggles and work together
to find solutions. As in any family, we
face struggles and road blocks and don’t always shine as we should in the midst
of difficulty. We are by no means,
anywhere close to looking like a story book family. Life with a child with disabilities changes
everything. However, we know we can do ALL things through Christ who
strengthens us and so we persevere, casting all our cares on Him.
We
live far from family and therefore do not have a support system in place. Our greatest support has been each other. My husband is an amazing man, who goes above
and beyond in caring for our son, often times picking up where I leave off and
always there to do whatever is necessary.
We tag team through much of life.
What are your Family priorities, resources and concerns?
I’m
not sure we have any defined family priorities.
We used to have family meetings years ago and I’m sure had those
continued, we would have, by now, some defined family goals. From my perspective it would be to put God
first, others second and ourselves last.
I would like us to be a family that makes a difference in caring for
others. I want our lives to count, not
in acquiring wealth or notoriety or accolades, but in being there to impact the
lives of others and make the path they are walking a little brighter and the
load they are carrying a little lighter. My dream is for our family to reach
out to others who have children with disabilities, to provide respite for
them. Ultimately that is my deepest
desire.
We
have few resources at our disposal in caring for our son. The state in which we live does very little
to support families raising children with disabilities. Josiah goes to the local public school, has
wonderful teachers and phenomenal aides who love him and take great care of
him. His needs are met. However, he is definitely not receiving the
kind of instruction that will help him to be more self-sufficient and
independent as he gets older. They work
primarily on academics and only minimally on life skills. In my honest opinion, it is glorified
babysitting which affords me a break. If
we had resources available, Josiah’s school day would look very different. He would be in a special school, receiving
therapies and specialized attention by ABA trained professionals who work
as a comprehensive team to ensure Josiah is able to be as independent as
humanly possible. At this point, Josiah
requires hand over hand assistance to do most everything.
My
biggest concern in regards to Josiah is his long term care. Who will love and care for him in our
absence? I do not want him to be
institutionalized or separated from his siblings, yet it is unfair and
unimaginable to ever expect one of them to care for him when we are gone.
What are your greatest challenges?
The
greatest challenge is in daily living.
Little things that many years ago I took for granted have taken on new
meaning. Here are some examples:
It is
no longer possible to run a quick errand.
Dr’s
appointments are extremely difficult and require both my husband and I to be
there, in order to help hold Josiah for the Doctor to examine him. He is small but extremely strong.
We
are not able to do much together as a family.
Either my husband or I take the kids places, while the other stays home
with Josiah.
We
almost never eat out at a restaurant.
My
husband and I very rarely have date nights.
It’s challenging to find babysitters who are capable and/or interested
in caring for a child like Josiah. When
we do find them, the cost of paying them to watch him is extremely high. The average rate for a babysitter for a child
with special needs is $15 an hour, even if the sitter ends up just sitting on
the couch next to Josiah, while he plays with beads.
I
feel obligated to keep Josiah constantly engaged and challenged and working on
some sort of task when he’s home. Most
of the time, he has no interest or desire to do anything. It becomes a struggle to work through pretty
much everything and ultimately neither of us wants to continue. The flip side is, if I let him enjoy doing
nothing but play with beads or a balloon, then I feel guilty that I’m not
helping him. I feel solely responsible
for Josiah’s success in acquiring necessary skills.
Our other
children sacrifice quite a bit. They
don’t receive the time or attention they deserve and most likely want, because
we are constantly caring for Josiah and his needs. They almost never have both parents in
attendance at school functions or special events.
Josiah
is sick a lot. He doesn’t sleep well. That impacts us greatly. We are often sleep deprived, running on fumes
and living in survival mode. It is
difficult for me to work outside of the home, which impacts our finances, my
need/desire for friendship and outside activities etc.
What are your hopes and dreams for the future?
I
don’t know that I let myself dream or hope too much about the future. I believe God is in complete control and I
take great comfort in that. I trust that
He knows what lies ahead and will prepare us for each next step as needed.
Secretly,
my greatest hope is for Josiah to someday talk.
I would love to hear my little boy say even just one word. It breaks my heart that he doesn’t have a
voice and is not ever able to tell me how he feels or what he is thinking or what
is going on in that incredible mind of his.
I
guess my hope for the future is for Josiah to be a blessing to others, for his
life to have meaning and purpose and intentionality.
What should teachers know about working with
families?
There is so much
more, hidden beneath the surface, than what you are seeing. Families are doing the best they can and
often times it is not even remotely close to what it should be. They know that. Supports need to be put in place for families
to help them through the obstacles and hurdles they have to step around and
jump over. Sometimes they just need a
listening ear. Often times they just
need a break. Love on their kids. Love on them.
Wrap your arms around them and tell them everything is going to be
okay. Encourage them. Be a source of joy and delight. NOTICE something, anything remotely positive
that you can about their child or the way they are dealing with the child and
mention it. Let them know you
noticed! If you are a Christian, lift
them up in prayer.
And if at all
possible, give them the gift of respite.
Even for just one night, offer to watch their child for FREE, so they
can have some much needed time, together as a family.
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