are the Masters Family. We are composed of Gary, Gina, and
Logan, our son,
celebrated his fourth birthday on March 17, 2007. He is a
very special and unique little man.
pregnancy was awful from the start. We were in the process of
a home and
prior to her becoming pregnant with Logan, she had had several
pregnancy, it was undoubtedly stressful for her and for me.
Logan did not move much which brought on many questions in
itself. Gina had a one vessel umbilical cord, which is
common in Down's Syndrome children. She was taking
progesterone, both the shot and vaginally. As well as
being a high-risk pregnancy, she was in labor for 36 hours, due
to the hospital sending us home. They told us she was not in
labor because she was only dilated 2 centimeters. Later,
we found out that Logan's head was stuck in the birth canal and
Gina's pelvis was not going to expand any further. They
finally performed a c-section.
things were unusual when they removed Logan from the womb. He
never cried, never made a sound. I became very nervous and
scared. I knew this was not right. Although I had some
fears, my son appeared healthy and nothing else really mattered.
Logan was an
excellent baby. He never cried unless he was hungry. He would
just lay on his back and play. If you tried to put him on his
belly, he let you know that he did not like that.
As Logan got
older, from 6-18 months, we began to notice -- or I should say,
I did not notice -- that he was not doing the "typical" things
that you would "normally" see for a child between those ages.
Logan never babbled or tried to talk. He would only grunt,
but at that age, we thought this was his way of trying to talk.
We later realized that was not the case. Logan did not
crawl until a week before his first birthday, and even then, he
went backwards - not forwards. My wife and I chuckle about
it now, but until he crawled, his method of getting from place
to place was what we called "turbo rolling" because he could get
some speed up! A week after he crawled, he then began to
bang his head on various things - from the floor to table legs.
I went as far as putting foam pipe insulation around the top of
his playpen. When that failed, due to him biting it, I
replaced it with blankets. I also had to pad his entire
crib with layers of blankets so that he would not injure
All of the
signs and things that seemed to be abnormal in his development
we brought to the attention of many individuals. We were
comforted by the advice of all, that "he was a boy. They develop
slower than girls," "he is just not ready," "don't punish
him; he is only a baby once,"he's healthy, don't worry about
anything." Although our suspicions were suppressed by
words of comfort, we as parents, were not satisfied.
First, we went
to see an ear, nose, and throat doctor. Logan had had
chronic ear infections (eight) by the time he was 22-months old.
The ENT did a hearing test and checked his ears and told us that
all seemed to be fine. Then, the doctor asked us, "Have
you considered he may be autistic?" We replied, "no, he
does not display those characteristics." Then this ENT
made the most offensive comment to us. He said, "This is the
problem with young parents today. They can't see the
forest through the trees." He then continued, "There are
rules in child raising and he (Logan) should be able to say 18
words by 18 months of age and be able to talk to a stranger and
the stranger should be able to understand him." I was
furious, but open-minded. My wife was in tears but did not
accept that as an answer since she had worked with autistic
children before. My wife said to me that, yes, he has some
characteristics but not the clinical features. Finally,
when Logan went in for his two-year wellness checkup at
24-months, we told his pediatrician about our experience with
the ENT. Our son's pediatrician gave us a number for Early
our visit with the local ENT, we scheduled an appointment with
an ENT at our local children's hospital. The ENT there
suggested that Logan have tubes placed in to have his phrenulum
released (phrenulum is the small piece of skin under the
tongue). Logan this this "released" or cut once before he
was 10 days old due to being tongue-tied. It had grown back. So,
we scheduled this surgery for July 5.
Intervention specialists came out to our home and evaluated
Logan on his cognitive, motor, behavioral, physical, and speech
levels. We were devastated by the results. He was
behind developmentally in everything for his age. They pointed
out to us things such as: he was unable to stack blocks, unable
to place pegs in a hole, and was not able to speak any words at
all. He was unable to throw or roll an object to a person. He
was unable to climb on the couch or stand up without the aid of
someone or some thing. He was unable to go up or down a step or
initial evaluation, Logan began therapy in June 2005. A
speech therapist and an occupational therapist would each come
to our home once a week for one hour a day. The things we
were most concerned about at that time were, 1) his inability to
speak, 2) his low muscle tone, and 3) his not being able to use
a fork and spoon. The first thing was to develop a means
of communication. Our therapist at the time wanted us to
use flash cards but we decided that when Logan would have an
outburst, it would be disastrous to flip through flash cards
trying to find what he needed. My wife then decided that
since she knew sign language, she would teach him two words a
week. He excelled in this area and by the time he was
three, he was able to sign approximately 150 words in ASL sign
language. In addition, his frustration level had decreased
and, in turn, he would band his head less. Although this
was progress, other things were starting to arise such as more
hand biting and pulling his hair.
Logan started Early Intervention, we made an appointment with a
Pediatric Neurodevelopmentalist at a local children's hospital.
When we met this physician, in September 2005, for the first
time we were astonished at the amount of time he spent with
Logan. He spent 5 hours with Logan, with us, talking to us about
Logan, walking with Logan, and playing with and testing him.
It was a good feeling to know that he truly cared about our son.
He told us that he would be the first to write him off as
autistic - and that he did display some autistic traits - but
that there was something else going on. That day, Logan
was given an initial diagnosis of Global Development Disorder
with Apraxia. We left the physician's office very relaxed,
knowing that there may be something more underlying with Logan.
The NeuroDevelomentalist recommended that we take Logan for
blood work and we did that and after he received the results, he
would contact us. As you may expect, we had routine and
frequent doctor's appointments for the next few months as well
as various therapies.
With all that
was going on, trying to find the root of our son's lack of
development, my wife and I stayed very focused. We knew that
feeling sorry for ourselves and Logan would not do him justice,
so aside from Early Intervention, we decided to see what other
programs were available for children with delayed development.
We found that the local colleges and universities in our area
had various programs for nominal fees. We first signed Logan up
for speech therapy at a local rehab institute where he received
an additional hour of speech therapy each week. At first
we were a little apprehensive about getting him involved in so
much therapy but he loves to learn and as long as that stays
true, we will feed that fire. In addition, we enrolled
Logan in a day care for two hours per day so that he would
develop social and interactive skills.
As time went
by, January 2006 came and it was time for Logan to get blood
work done which has always been very difficult, but we managed.
He has "rolling" veins and is always tough. So, we waited
for a response from the doctor regarding the blood test results.
In the meantime, we had to start to prepare Logan to transfer to
the 3-5 year old program. You see, there is a 0-3 program
run directly by the county we live in and a 3-5 year old program
run by a school district and overseen by the county. Logan
would be 3 in a few months and preparations needed to be made.
He would receive his therapies based on the school year.
We had also arranged for Logan's first IEP (Individualized
Education Plan) for March 10, 2006. This would establish
what therapies he would receive for the semester.
received a phone call on March 8, 2006, from the
NeuroDevelopmentalist's office. It was about 7pm and the voice
on the other line told us "your doctor would like you to come in
in a few weeks for Logan's appointment" which was coming up at
the end of March. We asked why but the secretary did not know
the reason. We prodded her for as much information as we
could because we were very scared now. It is not often
that your appointment is moved up, especially when there is a
three-month waiting list for children under three and an
18-month waiting list for those over 3. She finally gave us the
number for Logan's NeuroDevelopmentalist's office. We
called immediately and we were surprised to have reached him so
late. He was very reluctant to speak to us on the phone
about the matter, but my wife was very persistent, explaining
that it is unfair to leave us in limbo about our son until his
next appointment. Again, he remained very reluctant but
Gina finally convinced him to tell us. He told us that
Logan has Smith-Magenis Syndrome, a deletion or mutation of the
17th chromosome p11.2. He explained briefly to my wife
what it was and gave us one of the Internet address of the only
reputable website about this disorder.
We were in
shock over everything. I did not know how to feel or to
act. I wanted to break down, but we also did not want to jump to
any conclusions. We spent the rest of the evening on the
computer doing research about Smith-Magenis Syndrome. We learned
a lot that night, about who we are and who we were about to
become, as well as just how much we love our little boy we call
Syndrome) is characterized by a recognizable pattern of
physical, behavioral, and developmental features. Common
features include: characteristic, yet subtle, facial appearance;
infant feeding problems; low muscle tone; developmental delay;
variable levels of mental retardation; early speech/language
delay; middle ear problems; skeletal anomalies; and decreased
sensitivity to pain. The syndrome also includes a distinct
pattern of neurobehavioral features characterized by chronic
sleep disturbances, arm hugging/hand squeezing, hyperactivity
and attention problems, prolonged tantrums, sudden mood changes
and/or explosive outbursts, and self-injurious behaviors. A more
complete list of physical, developmental, and behavioral
characteristics, please refer to
When we read
the characteristics of SMS, we knew "this is Logan". He
has all of the classic characters; the self-injurious behaviors
such as head banging, hair pulling, hand biting, and gouging at
his ears till they bled. He also has the poor muscle tone,
speech delay, and poor fine and gross motor skills. Logan
has a speech delay as well as delayed toiletry skills. He also
has explosive outbursts at times, usually when he has done
something wrong, but was unable to control the outcome of that
Logan also has
the decreased sensitivity to pain and temperature. This is
extremely stressful on our family as you may imagine.
Imagine yourself - or a loved one - being unable to response to
temperature or pain. Imagine melting the skin off your hands but
not realizing it until the damage had been done. Now apply those
situations to the one you love the most. Think about the stress
of daily life and the panic that goes with it just walking out
your front door.
One of the
greatest battles we fight daily is Logan's sleep disturbances.
Logan's body secretes melatonin during the day, usually
mid-morning, and not at night such as with most people.
This makes for some late nights and always very early mornings
(4 am - 6 am). Logan used to have many sleep disturbances
and at times would wake up every 45 minutes to an hour
throughout the night. We now supplement him with a
melatonin supplement about a half hour before he goes to bed,
usually between 8 and 9 pm. On the other hand, he may fall
asleep or nap for up to three hours at a time.
When we met
with Logan's NeuroDevleopmentalist, he explained to us that
Logan would need to undergo some medical tests to rule out any
potential threats. Some of the tests he underwent were a
cardiac test, x-rays of his kidneys, x-rays of his forearms,
hearing tests, and eye exams. Many of these tests will
need to be conducted on a routine basis so as to be proactive if
these problems were to arise in the future. He is also
required to have routine blood work to monitor his cholesterol,
thyroid, and other blood chemistry. All came back
negative, however, they will need to be monitored regularly.
turned three, his therapies stopped with the Early Intervention
0-3 program and the Hazleton program started. Logan
qualified for and received 39.5 hours of therapy per week.
He received speech, physical, occupational, and special
instruction therapy throughout the week as well as having a TSS
(Therapeutic Staff Support) worker with him. He also
attended and still does attend speech therapy at College
Misericordia for one hour per week and one hour of speech
therapy per week at the John Heinz rehab center.
excelled in his therapy. He loves to learn. As he has
grown as an individual, his self-injurious behaviors have
decreased somewhat. He has started to combine his sign
language skills with a few words he has been able to say. The
therapy has enabled him immensely. We focus on his poor muscle
tone, both orally and physically. Orally, we have focused
on strengthening the muscles in his mouth and tongue. He
still drools quite a bit for a three year old. It is
amazing to watch the therapists work with Logan. He is so
in-tune with what is going on and usually there is little to no
outbursts or non-compliance.
In September of
2006, Logan started school at the ripe age of 3 1/2. He
would go to school from 8:45 am to 11:30 am. He would
receive all of the same therapies but in a classroom setting.
He does so well; he has good and bad days but is usually very
compliant. They mimic a school setting, have field trips,
and do various craft projects and activities. After coming
home from school, Logan eats lunch and usually is then ready for
a nap. He then attend daycare with his mom and his TSS
where he received more personal instruction.
We have been
trying to work more on a being in public places with Logan as
well. He has never really functioned well in public areas.
Usually, public encounters end up in some type of explosive
outburst that involves Logan either hurting himself or throwing
something. In the summer of 2006, we went out to dinner to
a Chinese restaurant and took Logan with us. Our dinner
was abruptly ended after Logan grabbed a plate out of the
servers hand and threw it about 5 feet. This type of
behavior is common of Logan which is why the three of us have
only been out to dinner 4 or 5 times. My wife and I only
have been out to dinner by ourselves about the same number of
times. We do not feel comfortable without our son with us and we
feel it is very unfair to him. There have been very few
times in Logan's life that he has not been with us. We usually
do not leave him with anyone other than his grandparents or
ourselves. We do not do this to keep him from society but
we are cautious of what other do not know about Logan and how
they may react to his behaviors as well.
Logan used to
sleep in a crib, but as he got older and stronger and bigger, we
were forced to place his mattress on the floor and put a crib
tent over his crib. We had replaced his crib tent a few
times due to Logan ripping it. We also need to secure his
crib to the wall because he was able to shake it. We soon
realized that Logan would require a different type of sleep
system. We knew he would not stay in a toddler bed, especially
when he awoke during the night. My wife and I knew if he
were able to mill around his room, he would not try to go back
to bed. We also worried that he may injure himself.
Ever since Logan was born, we have had a baby monitor in his
bedroom and ever since he was one years old, we have had a
surveillance camera in his room to monitor him. We also started
to look around for bed alternatives and found that there was not
much available. One company was shut down by the
government due to too many deaths caused by their beds.
Another company made primarily geriatric beds, which left only
one other company that we were aware of. We contacted the
manufacturer and inquired about their beds. They sent us the
information but reminded us that we would need to go through a
durable medical equipment supply company to acquire the bed.
This bed is fully enclosed and is a padded canopy bed.
This would ensure Logan's safety as well as a longer-term
solution for sleep growth. We informed Logan's
NeuroDevelopmentalist about the bed and asked him for his input
on it, and he gladly took on the task of seeing if the bed would
be right for Logan and his condition. It took some time to
get the bed but on December 28, 2006 the bed and delivered and
set-up for use. It has been one of the best things for Logan.
He actually enjoys being in it. He plays and has fun. As I
stated earlier, when it comes to sleep, Logan needs a melatonin
supplement, which has always been a treat.
With regard to
the melatonin, we first started out by buying the tablet form of
the supplement and crushing it between two spoons and then
adding the powder form to jelly or putting it on something and
attempting to get it into his mouth. As you would imagine, this
all happened with kicking and screaming and did not go well. We
next moved to taking the crushed form and adding it to his milk
or juice. This was a bad idea. Melatonin does not dissolve
in anything, hot or cold, thick or thin, it only clumps.
We then moved to the liquid melatonin products which are
wonderful except for trying to find a supplier to obtain it
from. It also only comes in 2 or 4 ounce bottles which
only lasts about three nights . We have now hopefully
reached the end of our melatonin journey. We found a "natural"
supplement that has worked spectacular. Ever since we have
started giving Logan this product, which was in January 2007, he
has actually slept through the night without waking up - not
every night, but about 85% of the time. I think that it is
important to state that when I walk about a full night's sleep,
I am referring to 6 to 8 hours, which is the most Logan has ever
In the fall of
2006, Logan underwent his second surgery in which he had his
tonsils and adenoids removed and a second set of tubes put in
his ears. One thing that we have learned is that
anesthesia and Logan do not agree. He usually awakes from the
anesthesia very violently. He has just undergone his third and
hopefully his last surgery in February 2007. This surgery was on
his teeth. Logan has such poor muscle tone in his mouth that he
stores a lot of excess food in his mouth which has in-turn, led
to premature decay of his teeth. Luckily, however, no
teeth were extracted and all were repaired.
As of March 10,
2007 I would like to say that this is a father's rendition of
his son's life thus far. Logan will be 4 years old on
March 17. The most important part of this biography is
that my wife and I love our son very much. We are so proud of
him and everything he has accomplished and overcome in his life
thus far. Although he has gone through a great deal for a
child his age, we realized there is always someone out there who
is worse off. I have given you a short life story of my
son, Logan. What you have read has been insignificant in
comparison to the great joy our son has brought to our lives.
For all the trials and tribulations our family deals with on a
daily basis, there is so much joy. Logan is a happy young man
and my wife and I try to have Logan experience everything that
he can. Logan loves to help around the house. He helps
clean the windows and he just loves to vacuum. He likes to
wash the dishes and help mom wash the floors. He really
enjoys mixing eggs so we can scramble then. When I am home, he
likes to wrestle with me and sit on my shoulders and walk around
the house. As far as outside activities, he loves it whether
it's winter or summer. He helps whenever he can. Recently we
started our seeds for our garden in the basement. We put dirt in
the egg crates and planted our seeds together. He always
helps me in the garden. Whether he is pulling the
vegetables prematurely or eating them right from the garden, he
is still there by my side. He likes to wash the sidewalks
with the hose as well as squirt his dog with the hose.
Logan loves the water -- from the pool to the ocean, from
the creek to the bathtub! He loves to ride on our ATV.
We put his helmet on and drive around the yard. We even
plow snow together. We go for walks in the woods and go to
the beach. We play on his swing set and do chores around
the house. We do everything as a family. We eat together
and we play together. We even work on the computer
together, just as he is watching me type this story.
Logan is the
very best thing that has happened to Gina and I. Every day, he
brings us closer together. He is our diamond in the rough.