PSN Issue
By: 
“Real Life” with…
Terry Loren
Photographer
Since this issue talks about dating and marriage for parents
with special needs children, we thought it would be interesting to talk with a
bachelor, Terry Loren. Terry has been a bachelor for 43 years. He started
dating Christine 5 years ago. Christine is a single mother, and her only child,
Heather, has cerebral palsy. Terry and Christine are now planning for their wedding which is scheduled for November of this year. Terry
is a professional photographer who specializes in Youth Sports Photography. His
photographs of children with special needs reveals an insight and understanding
that can only be gained from working with over 10,000 children.
PSN: Tell us a little about how you
met your girlfriend? How did she tell you about her special needs child?
TL: I first met Christine during a photo shoot for a Miracle League
baseball tournament where I was taking pictures. Christine
was on the board of the Miracle League, she helped organize the event. The second time, I was at West Minister Academy for
a photo shoot for graduating seniors. Christine’s daughter Heather was one of
the senior’s graduating. I saw Christine and Heather at the same time, there
was no formal introduction needed.
PSN: As a bachelor starting a relationship with a women with special needs daughter, how did you feel
in the beginning?
TL: A little unsure, never really being close to anyone with special needs
or dating a person with a special needs child. I admit I was a little hesitant.
I was not sure how to act or behave etc.
PSN: What is Heather’s disability, Can you
explain?
TL: She has Cerebral Palsy, a speech impediment, bi-polar disorder, and
mild retardation. Her fine motor skills are weak, she cannot write her name or
cut her food. But, she can do a lot more than she lets on. She has a great
sense of humor, she cracks up, gets jokes and likes to
joke.
PSN: How was it in the beginning? Your relationship with your girlfriend and your relationship with
her daughter?
TL: When we first started dating, we didn’t really interact with Heather
too much. Heather was older and in
high school. I think we dated for about six months prior to having a dinner
that included Heather. I invited both of them to dinner at my house.
PSN: Most of us that bore children with
special needs often feel overwhelmed… did you have similar feelings? Did you
want to run the other way?
TL: No, I never felt that I wanted to run. I felt that Christine hadn’t had
many breaks in her life and that life hadn’t been very fair. I could see that
the “day to day” could be overwhelming for Christine. I never felt overwhelmed
until we moved in together and had lived together for a while.
PSN: You moved in together. Living day to
day with a special needs child is different than a couple of hours here and
there. Can you tell us a little about your experience?
TL: It seemed to me that Heather had been catered to pretty much her whole
life. Her family had done more and more for her as she
got older. I think that for many it’s easier to do something for a child (with
special needs) than to make or teach them to do it for themselves. I felt
immediately that Heather had more potential than she was exhibiting. She was
capable of doing more for herself. Heather was also very inquisitive; she had
lots of questions about school, boys, etc. We spent time together after school,
played basketball and talked every afternoon. It was challenging in the
beginning, as I wasn’t able to understand her because of her speech impediment.
It was frustrating for her as well. I had to ask her to slow down her speech,
spell the word etc. She had a relationship with her father and he could
understand everything she said and they carry on regular, lively conversations.
Having a conversation for us was more difficult, I
didn’t know her speech patterns or impediment. I had to learn to really listen
and even then it could be difficult because she can’t pronounce things
correctly.
Christine and I started down
the road of having Heather become more independent by doing more for herself. Christine had started having Heather do things for
herself, but prior to my living with Christine, she didn’t have the back-up to support the follow through. Heather’s Father was
not very involved, he didn’t require much from Heather, he didn’t discipline her or make her mind.
I was the “new guy in town”, I hadn’t come to love Heather yet. So, I used our
afternoons together to build a relationship by talking and trying to get
Heather to understand that everyone is not always going to give in to her and
she would not always get her way. I talked with Heather about the importance of
picking up after herself and practicing good hygiene- brushing your teeth
everyday, combing your hair, etc. Especially if she wanted a boyfriend which she did want at the time becuase
her best friend had a boyfriend. I used our afternoon talks to explain to
Heather about how doing things for yourself, gives you feelings of pride and
accomplishment that allows you to gain more independence.
PSN: We’re you involved in discipline?
TL: No, because of Heather’s age I wasn’t involved in the discipline. It was
more like strategy sessions with Christine. I would try to bring things to
Christine’s attention and to Heather’s attention…separately, of course.
Explaining to Heather that there are certain ways to behave and certain things
are unacceptable. If you want your mom to do certain things (like take you to
your friend’s house) you may want to do what your mom asks you to do. I made
sure I supported Christine in whatever discipline decisions she planned to
implement.
PSN: We’re you involved in any of the CARE,
IEP’s, doctor’s visit or plans for the future?
TL: I was involved from the first moment, even before moving in together. I
started going with Christine to the meetings because I assumed it was like
going to the doctor’s office for your results: you only hear half the things
that are said to you. Therefore, you need the other person to pick up on the
things you didn’t hear. Heather was in her second to last year at school. The
first meeting they discussed with us what Heather could and couldn’t do. I
think the meeting was called an Evaluation plan. It was a plan of attack of how
they were going to handle, train and educate Heather at that point. What Heather’s strengths were, where
she had improved or had fallen back. It was interesting and it was all new to me.
PSN: IEP Meetings can be pretty
overwhelming for most Parents, what was your take on your first IEP meeting.
TL: I was surprised by how many people actually had a role in Heather’s
life. Whether it was for academics, speech, occupational therapy, or a medical
person keeping track of her medicines, there was someone in charge of that
area. It was eye opening to me to see exactly where they saw Heather, as
opposed to where we saw Heather. It was eye opening to me because these people
(her team) really didn’t see the potential Heather had as far as doing things
on her own, and becoming more independent. At home, she is responsible for doing her own laundry,
folding the towels, stripping her bed, and organizing her drawers and a lot
more.
PSN: How did the dynamic change once you
moved in?
TL: The dynamic changed because I became the referee. Christine had a lot
on her mind and was going through a lot when I moved in. Heather was graduating
from High School and her father had moved 3-hours away. Christine was now faced
with working fulltime to pay the bills to support them and having the sole
responsibility of caring for Heather. Plus, the stress of not knowing what’s
going to happen with her daughter’s future was affecting her. All of the
unanswered questions “weigh” on a parent. You have to
deal with it, yet you can’t leave it in the front of you mind all the time.
That would just absolutely work you to a frazzle.
I think Christine was a
little reticent to have me involved in the beginning. However, I think she
realized she needed someone as the load was getting
awful heavy. Having a daughter that needs you and relies on you for everything
can be daunting without help or support.
Basically, I became the referee between the two of them. I tried to lighten the load on
Christine as much as I could by trying to diffuse some of the pressure that can
build up. You know what it is like in a normal mother and daughter relationship
and how it can turn sideways in a hurry, especially when the child is trying to
become more independent. I think Christine was putting more pressure on Heather
to do more, Heather has a tendency to be lazy, she has
no inner motivation.
PSN: What was your biggest surprise or
“Ah-ha” moment?
TL: Christine had told me that Heather would have episodes where she would
get very frustrated and act out. My biggest ah-ha moment was seeing Heather
physically attack Christine.
Heather had never behaved or acted like that when I was around. Prior to
the first time I witnessed it, it had only been hearsay from Christine…telling
me about it and showing me scars. Until you actually see it, you don’t have a
full grip on it. After I saw how Heather behaved, things changed immediately. I
laid down the law that under no circumstance was
Heather allowed to hit her mother. And, if it happened again, we would call the
police: no ifs, ands, or buts about it.
I told Heather that under no certain terms are
you ever to hit your mother. If
you did, you are an adult now and you’re going to go “bye-bye”. Plain and
Simple! They had to “Baker act” Heather once when she was younger, so, she knew
what we were talking about. I made it very clear that under NO circumstance was
she allowed to attack her mother. While I am living here, it will not fly. I
don’t know what was allowed to happen prior to my living here, but, it will not happen while I am here.
PSN: What was your biggest challenge?
TL: The biggest challenge was getting Christine to understand and accept
that Heather has limits. That no matter how much you wish for a normal child
and all the things that traditionally go along with a normal child: graduation
from college, a wedding, a grandchild, etc…, those
things are not going to be available for your child in the same way. You are
going have to take what you can get and ENJOY!
(Note: Your child can graduate with
their class and still attend school until they are 22.)
Disclaimer: All information on this site is of a general nature and is furnished for knowledge and understanding only.