Psychology 440
April 21, 2014

Caretaking for a Sister with Down Syndrome My four year old sister was diagnosed with Down syndrome. We are both of Mexican-American descent. Our parents were recently deported back to Mexico and due to the fact that I am 25 years old I was granted primary custody of my four year old sister Isabella. I am currently in the Reserves which allows me to provide for not only myself but Isabella as well. I am off during the week and work part time on the weekends. Being a caregiver for a person with Down syndrome has its struggles as well as its rewards.
Down Syndrome Down syndrome is a congenital disorder that is caused by a chromosome deficiency and results in an intellectual impairment as well and some physical abnormalities. Some abnormalities include a single line on the palm of the hand, short stature as well as a wide facial profile. There are different types of Down syndrome and in this case Isabella suffers from trisomy-21 which is caused by a defect with chromosomes 21and typically makes an extra copy. (Dierrsan, 2013). Those with Down syndrome have poor muscle tissue as well a higher risk for heart problems which may result in early death. Down syndrome causes children like Isabella to be developmentally disabled and while she may be four years old her mind is of a two year old which why her outburst are extremely intense at times. As she gets older she will continue to be delayed. This does not mean she and other children like her are not smart or cannot be successful they just completed task a different way and at a different pace.
Caregiving Context Currently I am the primary caregiver for my sister Isabella after our parents were deported back to Mexico. We live in a small one bedroom apartment in San Diego, CA. my boyfriend also lives with us and acts as a tertiary caregiver due to the fact he will help out occasionally while I am at work.
Although Isabella is four years old because of her disability it is more like she is two years or even younger. Her teeth are delayed coming in and are a little more sensitive that others and therefore she must be fed softer foods. I provide care for all of her ADLs which include feeding her, getting her dressed every day, bathing, changing her diaper as well as helping her walk. Whether I am at work or home my boyfriend is great with helping Isabella with IADLs. This would include preparing her meals, picking up after her, taking her to the park or appointments she may have as well as doing grocery shopping.
I am not eligible for any type of support as a caregiver which is why I stay home the majority of the time taking care of her. I am in the Reserves which provide us with healthcare and money but due to the fact that I do not bring in enough with just that I have a part time job which I work mostly every weekend. When I am working I need someone to watch Isabella and that is when my boyfriend steps in and helps out. We coordinate our schedule so that one of us is able to watch her as we are hesitant about others watching her at this point in time and the finances are not there to hire someone.
The Impact of Caregiving on the Caregiver The first empirical study I examined looked at those adolescent children were perceived to have a higher quality relationship with their disabled sibling, especially those with Down syndrome (Pollard, 2013). Ever since I was granted custody of baby sister I feel a greater sense of responsibility and closeness with my sister especially because I know things are hard without her having our parents here. The study showed that those who have siblings with Down syndrome have a better overall sibling relationship than those with siblings without disabilities. However, higher levels of stress were also reported (Pollard, 2013). As rewarding as it is to care for my younger sister at times it is very stressful and frustrating. It is especially hard to deal with on certain days because I think about how I did not chose this for my life but I have to remember Isabella did not chose this for her life either. As we both get older our relationship will continue to grow stronger and stronger. Just as much as I teach her she teaches me a whole lot more. The second empirical article I read looked at the factor that show family functioning with a child who has Down syndrome which was used with a mixed methods design. Family functioning and marital adjustment were comparable to families of developing adolescents (Povee, Roberts, & Bourke, 2012). Career was shown to have an effect on behavior issues. There are times when I am at work and Isabella starts to act out way more than she normally would and I feel it is her way of expressing that she is mad that I am not there with her. Although Isabella can really only ever remember me taking care of her she frequently talks to my parents and at times I think it is difficult for her to understand the concept of what has really gone. A key theme these two articles suggest would be that sibling relationships are important and crucial to the development of a sibling with a developmental disability. In both instances relationships were stronger and the reason being is they are able to feel empathy for one another and due to the fact that normally siblings are not caretakers they do not experience as much stress as primary caretakers. Another key theme was that at times outburst by the child are due to other circumstances such as lack of parent involvement or when the caretaker must go to work to help provide the child does not understand this concept. All in all both of the articles talk about the importance of sibling relationships and what crucial role they play in one another’s life.
Community Agencies The first agency is 501C-3 nonprofit organization called Down Syndrome Association of Greater Cincinnati which was established in 1981 whose goal is to change the needs of those with Down syndrome. There are over 1,300 people who have Down syndrome (of all ages), 3,000 family members and over 300 local professionals. DSAGC gives support, inspiration and information that may help those with Down syndrome so they may reach their ultimate potential. They are funded through fund raising events, corporate donors, community events, charitable foundations etc. DSAGC does not get any money from membership dues. Although there is no cost to join there may be outings that require money for admission or for meals. The executive director, Jim Hudson, has been working for DSAGC since September 2012. Other members of the DSAGC are Lucinda Hurst (Board President), Miguel Garcia (Vice President), Melissa Skavalem (Security), and Matthew Swendiman (Treasurer). The next agency is Association for Children with Down syndrome (ACDS). ACDS is located in Plainview, New York with a second location in Levitton, New York and was founded in 1966 by a group of parents who were trying to find service for the children who had Down syndrome. The agency has progressed into a lifetime service that gives families of those with a variety of disabilities from birth all the way to late adulthood. This is a public charity and 501C-3 nonprofit and 90 percent of the yearly budget is committed directly to serving our constituents. ACDS is dedicated to giving a lifetime of resources of outstanding quality for those with Down syndrome and other developmental disabilities. The school serves 270 children and about 75 of are offered day care and over 250 who receive adult services. The main three people who run this agency is Cecilia Barry (Principal), Linda Sperber (Director of Program Development) and Thomas Forester (Director of Residential Services). Each of these agencies has shown different ways in which they provide positive aspects. DSAGC has two positive aspects about their agencies. One aspect I was very impressed with was the fact that there is a link for other resources such as families who need extra help around the holidays. It allows families to have more than one option for help. Another positive to this agency is on their website they have another link to read about what to expect for those who are new or expecting parents. This is a great tool and opportunity for those parents who may be blinded as to what is about to happen and therefore gives them some light at the end of the tunnel that they are not alone and things can and will get better. ACDS has two positives about their agency with one being that there is a plethora of contact information which would make it easy for an inquiring parent to figure out where and who they need to call for more information. Another positive about this agency is that they offer numerous programs all age specific and based on their ability. This allows them to be able to serve those of all ages and disabilities. Just as both agencies have shown positive aspects they have also shown negative as well. One negative critique I have about ACDS is that in one of the sections it talks about those over eighteen are encouraged to get Medicaid but does not state how much it is for those younger than eighteen or those who may not have Medicaid. I felt the way they had the website set up was a very effective and useful way to help those caring or dealing with a developmental disability. The only other flaw I can say this agency had was that it was such an awesome one that they need more than two locations in New York because there are so many others who could benefit from this wonderful organization. A negative critique I have about DSAGC is that although there is contact information throughout the website it is not clearly stated and therefore you have to search for it which can make it difficult for a busy caretaker who only has time to get the number quick and make the phone call. Another negative critique would be that it does not specifically state where their locations and what the qualifications for these specific programs are.
Palliative Care A palliative care therapy plan that may useful to my sister would be to make sure she is as comfortable as possible. Children who suffer from Down syndrome typically develop heart problems as a result of this having a good diet for her is important. Also behavior therapy is another important as because with heightened frustration they will tend to act out themselves or by hurting themselves. Benefits from this type of therapy would be that my sister will be a lot more comfortable as well as a lot healthier too. Isabella would benefit most from this type of therapy and care providing because these are all different ways and tools to make her feel not only relaxing but possibly could give her a longer and happier life.
Internet Video Resources When searching for videos that would be useful resources for a family member caring for someone with Down syndrome I was amazed by how many informative yet heart wrenching videos that were actually out there. There were two that stuck out most to me which were “Down syndrome: My Sister Kassidy” and “A Girl with Down Syndrome: Teaches What Really Matters”. These two videos display personal stories of those who are caring for a loved one with Down syndrome and the obstacles they have not only faced but have overcome as well. The first video was created by girl, whose younger sister was born with Trisomy-21, to educate others on what the disorder is all about and her experiences with growing up with family member with special needs. She expressed how she was first told about her sister having Down syndrome and how she and her other sister embraced the differences. It gives viewers ideas on how to first introduce the fact that a sibling may be different. Her experiences shows that from the time their sister was born the mother told them right away what was going on which allowed them to learn about the disability as their own sister and parents were. She quoted something that I felt was a saying to live by “Kassidy isn’t Down syndrome, Kassidy HAS Down syndrome”. Kassidy is the one that inspires her two sisters most to never give up. The sister talks about how Kassidy does not see herself as different but her dislikes are the same as everyone else. Kassidy may be bad at Math but others who are not good at Math. This video shows how something that may be seen as something negative can be turned into a positive aspect and as a family treating them with respect and patience is what is important. The second video is about a girl name Abigail who was born with Down syndrome and had her first open heart surgery before the age of one. Doctors had told her parents that would not live past one year old yet in the video it shows Abigail as a beautiful 12 year old young girl. She loves sports and attends a regular Junior High. Her basketball coach Katie Busby explains how she played sports but spent the majority of the time on the bench and it is her philosophy that children need to know how to win, lose, and most importantly play by a team. Coach Busby personally approached Abigail to join the basketball team and Abigail’s initial response was “to be the mascot?” and was shocked when the coach expressed that she wanted her to actually play on the team. Her parents came to her first game expecting her to sit the bench but to their surprise she was being put into play. Abagail found herself with the ball and ran down the court, which the referees ignored, and as teammates and opponents encourage Abagail to shoot she finally made her first basket after only six tries. Everyone cheered in excitement and it shows others that it is not always about being the best out of everyone but to be the best you. Just because she has Down syndrome does not mean that she should be limited to what she can achieve and accomplish. This important for those who are caring for children with Down syndrome because it shows them that it is okay for them to step outside the comfort zone and try new things.
Video Links:
“Down Syndrome: My Sister Kassidy”: https://www.youtube.com/watch?v=e6b-xdsZsTg
“A Girl with Down Syndrome: Teaches What Really Matters

Conclusion Caring for a four year old with no developmental disabilities is difficult as it is but caring for a four year old who has Down syndrome is even more challenging. I never though at 25 years old I would be responsible for another life but seeing the joy as well as the progress Isabella makes every day make it all worth it in the end. Down syndrome is a very unique as well as challenging disability. It requires a lot of patience not of for the caretaker but for the care receiver as well. As caretakers, we need to take a step back and empathize with them and create positive and healthy situations/environments for them to be in.

References
Deirssen, M., . (2012, December). Down Syndrome: The Brain in Trisomic mode. Nature
Reviews Neuroscience, 13(12), 844-858. doi:10.1038/nrn3314
Pollard, C. A., McNamara Barry, C., Freedman, B. H., & Kotchick, B. A. (2013, July).
Relationship Quality as a Moderator of Anxiety in Siblings of Children Diagnosed with Autism Spectrum Disorders or Down Syndrome. Child and Family Studies, 22(5), 647-657. doi:10.1007/s10826-012-9618-9

Povee, . "Family functioning in families with a child with Down syndrome: A mixed methods approach." Intellectual Disability Research 56.10 (2012): 961-73. Web. 10 Apr. 2014.
Loitman, . (2011, October). Palliative Care for Patients with Down Syndrome #243. , 14(10),
1174-1175. Retrieved April 5, 2014