Lindsay Donahoo

EDUC312
Dr. Finn
19 October 2015
I had the opportunity to interview a woman named Andrea who was blessed
with four wonderful children, one of which, her son Alex, has severe special needs.
The interview turned into a deep conversation and I learned more than I ever could have
imagined. As I write this paper I am informed this the seven and a half year old boy,
whom I am writing about might not make it through this beautiful fall day. While I dont
know this family, I grew to know extreme details about their everyday struggles through
our conversation. Our interview was over the phone, because with her schedule with her
son and all of the numerous things that unexpectedly happen with his health it is almost
impossible for her to make plans for anything. It was very easy to talk to Andrea because
she is very open and knowledgeable about her sons disabilities, which she informed me
was not always the case. Our interview consisted of a discussion of his disability, when it
was identified, how people reacted, a typical day for them and many other things
pertaining to Alex that she freely discussed with me.
When I asked Andrea to describe her sons disability, I was not prepared for the
answer I was going to receive. Alex has what is called Mitochondrial myopathy, which is
an energy deficiency in cells. He doesnt have many mitochondria, which are the energy
producing cells, but the ones he does have are disordered. Also Alex has several
repertory problems, which consist of chronic lung disease, COPD and reoccurring
pneumonia (the reason he is currently in the hospital). Alex is non-verbal, non-

ambulatory and is hypotonic. Additionally he has low muscle tone, seizures and cerebral
palsy. He has had severe seizures lately and it has made it impossible for him to continue
to stay in school the rest of the school year. I then proceeded to ask her how/when did
she find out about his current disabilities. She informed me that at five months old, the
seizers were first identified. Then at eleven months old they found several muscle issues
through a biopsy. Right after she told me about the muscle biopsy, she had to go and we
planned to talk at another time.
Next we discussed how her friends and family responded to the news of her sons
disability. Andrea told me how strange the different responses were from people in her
life. First she started talking about friends who she no longer has in her life. One of
these former friends told her that she needed to figure out the sins that she was
committing in because God was obviously punishing her and that is why she had a
special needs son. Another former friend slowly stopped talking to her until she was no
longer in her life, because she didnt want to deal with the problems Andrea was dealing
with. Some of her friends have special needs children some of them dont, but the friends
she does have are all understanding of the position she is in and are accommodating with
her hectic schedule. She informed me that her family is fragmented on this issue. Her
father passed away when she was very young but her step-father who she is very close to,
has struggled with thus issue and it has plagued his spirit. Her mother on the other-hand
is very positive and keeps living each day to the fullest. Although her husband, is
negative at times about the situation theyre in with their special needs son, she keeps him
going and tries to show him hope. She continued to say that they now live in a new

reality, and its easy for them to blame themselves. Andrea also told me the divorce rate
for familys with special needs children is very high.
Lastly we discussed her typical day with Alex. She starts by getting him ready for
school and gives him his breathing treatment with his nebulizer. While he is getting his
breathing treatment he is fed through his feeding tube for his specialized diet. He is then
given his daily medication, which consist of 12 different pills. These 12 different pills
must be grinded. When his breathing treatment is finished she does chest PT on his Alex.
This is where Andrea cups her hands and beats around his chest and around his back to
break up and het his congestion out. Then she uses a deep suction catheter to get out that
congestion. After that she changes his diaper (she said hopefully she only has to change
it once before they leave for school) and put on his clothes. He has special shoes that
Andrea puts on him along with his back brace TLSO. This brace is flexible and helps
with his scoliosis. Alex has an older brother and sister who help dress Alexs twin
brother in the morning. She takes Alexs twin to school and then takes him to the nurse
first thing and gives him water. Then the nurse gives him a breathing treatment and feeds
him 2 hours after that. Alex must be fed every 4 hours and receive water in-between.
When he gets home from school he is fed again. Also the breathing treatment can be
given every 3 hours. She informed me that she has all of the equipment needed for her
son, the only thing that she cant do on her own is give him an IV. He has bath time, she
reads to him and he has playtime. Then around 7-7:30 p.m. she gives him another
breathing treatment and caught assist. He then receives his final chest PT and 5
medications for the day. Unfortunately, Alex passed away Sunday, October 18, 2015. He
was only given one year to live, but he lived seven and a half years with his loving

family. I had a very hard time learning this information just thinking about what the
family is going through, but I know he is no longer suffering and he is in a better place.