Archives: Lessons

Nutrition, Medications, and Allergies

In the next portion of the interview, the physician asks the mother about any changes in Jay’s appetite, his current medications (including over-the-counter and/or herbal medications), and whether any of the medications had appeared to help. The physician continues the Medical History with the following discussion of potential allergies.”

Parents or individuals with disabilities who visit the doctor’s office seeking medical support are usually there because (just like the non-disabled) they have tried OTC drugs or home remedies in vain. Children with disabilities that impact communication or communicate in a different way than the physician require additional time and or support. Plan for it and make the rest of your team aware as well. Rushing will not help and perhaps make the situation much worse. As in the non-disabled population- there is a sense of urgency because of the concern for the person’s safety and health. Dynamics of interaction between caregiver, individual and physician need to take into consideration that this visit might very well be the beginning of a new grieving cycle or continuation of a concern for the future. My behavior as a parent of this child should be perceived as a concerned parent-one who has to interpret the “difficult to interpret” behaviors of the individual. Trust my judgment. I am coming to you because my other options are either not there or have been tried. I am not neurotic, overly protective…But then again I am not neurotic and overly protective…Persons who have cognitive disabilities might not present immediately as such. Where as physical disabilities are visible. Be aware that additional means of communication supports are necessary (visual and physical ways in addition to talking). Imagine being a child with chronic pain and not being able to tell anyone or even know what the word pain means. That individual will need other words, pictures, and means to help give that information. Behaviors that have been interpreted as ‘non-compliant’ might very well be a reaction to pain that has never been diagnosed. A physician who connects with their patients seems to be one that can have a sense of empathy with a patient. Establishing a rapport with person who communicates differently is not impossible but different.

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[ms_accordion_item title=”Share your first experience with a physician that involves your child with a disability?” color=”” background_color=”” close_icon=”” open_icon=”” status=”close”]

 

My first experience with a pediatrician who was someone that was outside of the circle of physicians that were involved in his initial diagnosis – was a pediatrician at the clinic. He was a resident and determined to work with my son as if he was a typical child. He ended up having to use force on my child. It was awful, he hurt my child, was abrupt, clinical and we were out of there in less than 10 minutes. It was all very efficient. I hated it- my son hated it – the exam took precedence over the patient. The product became more important than the process. The patient interaction was lost in abandon for practice.

Initially, I shared that my son had autism, he looked at me and said “ok” and proceeded with the exam. The more insistent he became the more aggressive my son became.

It ended up in a wrestling match but the doctor won because he was bigger, and could talk and had the help of a medical assistant and a nurse. – What a jerk.[/ms_accordion_item]

[ms_accordion_item title=”What lessons have you learned?” color=”” background_color=”” close_icon=”” open_icon=”” status=”close”]

 

My son has the right to dignified treatment and just because he cannot communicate is no reason he is expected to be at the mercy of unknowledgeable practitioners. There is a certain level of uncertainty, fear, arrogance, and hesitation in the medical field that some folks try to mask. I would rather be given the respect for my son and have someone be clumsy, slow and awkward in order to provide respect.

I learned that I did not have to take that type of treatment and I could report someone for that kind of treatment. I learned that I could do this and I did. I also learned that being an advocate puts you in a strange relationship with professionals when you do this. I have learned it is far better to be on the proactive side rather the reactive side.[/ms_accordion_item]

[ms_accordion_item title=”Share the most positive visit with your current physician?” color=”” background_color=”” close_icon=”” open_icon=”” status=”close”]

 

Recent visits with Dr. Parrott, Glaser and Mason have shown me that these people want to understand my child who can’t communicate. They take the time, extra time, get to know his interests and needs to allow him to be comfortable. Jay actually sits on these folk’s laps and acknowledges them in other environments outside of the health care facility. I am not asking that the physicians sacrifice best or comprehensive assessments in lieu of giving my son free reign. I am simply asking to find some sort of balance in the middle.

Approaches that a physician has to working with persons with disabilities are influenced by their pre-service/ medical school experiences and/or by the experiences they have in their lives. Medicine attempts to “fix” someone and the reality of someone with a disability is that sometimes the physician is not able to fix the person.

I learned that people are “where they are” at by virtue of their values and beliefs, but individual experiences that either reinforce or negate those beliefs can influence change.

Physicians are people too.
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[ms_accordion_item title=”How aware of autism spectrum disorders is the medical community?” color=”” background_color=”” close_icon=”” open_icon=”” status=”close”]

 

In the past 7 years I have found there to be a significant increase in the diagnosis of individuals with autism. I have even heard it called “the diagnosis du jour”

The medical community has heightened awareness of the diagnosis. I am not sure if the increased awareness is due to true understanding of the complexities of the disorder, the outcry from parents or all the questions that surround the etiology of ASD. Regardless there is increased awareness of the diagnosis with accompanying increased disagreement regarding causes, effective treatment and interventions.

It seems that it is a disability that brings great conflict between parents, physicians and educators because of all the unknowns.

I think this has influenced how I am treated as a parent when I accompany my child to a doctor’s appointment. There are lots of alternative treatments being investigated by both families and the medical community (everything from a special diet, to a special approach to teaching language, to a unique communication system and others). There is even some differing opinion in regards to the way that a diagnosis is obtained. There is no unified approach and still lots of questions. [/ms_accordion_item]

[ms_accordion_item title=”How have physicians been obstacles in this type of environment in regards to a person with a disability?” color=”” background_color=”” close_icon=”” open_icon=”” status=”close”]

The whole issue of family centered care and family with a special needs member requires all the same values. It is in the implementation of the process where it becomes necessary to “think outside of the box”. This is difficult when there are protocols and procedures mandated by a specific system. It most likely challenges all consumers because of the impact when the two systems impact. I can see how the state of the system causes great frustration. Doctors want to help people, do no harm, cure and keep people well. This is a very humanistic system of people helping people-juxtaposed to a system that places a dollar value on people’s ability to pay, level of care required and values placed on different subgroups of society (elderly, poor, disabled). The whole equation becomes very convoluted.

Physicians have been helpful in understanding the process and helping us to access resources. Physicians can help by valuing my son. Also physicians can help by teaching families how to navigate the system.

A Physician can be an obstacle or a support to a person with a disability based on the basic values that they place on this person’s life and member of society.
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[ms_accordion_item title=”Do you see the type of care your child receives as appropriate, adequate?” color=”” background_color=”” close_icon=”” open_icon=”” status=”close”]

I see the type of preventative medical health care my son receives as adequate but I do feel that if he were to have significant health concerns along with the autism that the system we have experienced would not be able to meet his needs.
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[ms_accordion_item title=”How are you, the caregiver, perceived in the team by the medical staff when you accompany your child to the doctor’s office? Are your comments listened to? Respected? Taken into consideration when planning care?” color=”” background_color=”” close_icon=”” open_icon=”” status=”close”]

This is an interesting question in that I am guessing I am treated differently as a middle class, white, educated, female, health care consumer and compared to a parent who is poor and who has not had the opportunities I have had.

I think I am treated differently because of this and the level of care my son receives is also impacted by this.

When we were foster parents to our other child through the SNAP (special needs adoption program) and our son had a medical card we were served in another clinic within the same facility. This clinic had a different “feel” to it – – I do feel I was respected when I accompanied my child to the doctor’s office but I think that was because of the way I present myself.[/ms_accordion_item]

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[ms_accordion_item title=”What suggestions would you offer clinicians working with Julia?” color=”” background_color=”” close_icon=”” open_icon=”” status=”close”]The healthcare professional should work with us as a partnership to provide Julia with the best healthcare possible. This means that Julia should be treated with respect and sensitivity. Comments such as “she is such a great kid, but we wish she didn’t have Down syndrome” should not be made. The healthcare provider should not look at me with pity in their eyes because Julia has a disability. Instead we need to be rejoicing in the fact that she is doing as well as she is. As a member of the team, the healthcare provider must focus on her strengths.

In a true partnership all parties work together for a common outcome. As part of the partnership, the healthcare provider should listen to both the caregiver (parent) and the child. A parent will know the child the best; they will be a source of information regarding the child. In many cases the parent will know important medical testing that should be done based upon research that is ongoing in the area of the particular disability. They should not be afraid to ask questions. However, the healthcare provider must also accept the responsibility of doing research into disability specific issues. For example, individuals with Down syndrome must have their thyroid function checked regularly; there is a strong correlation with Down syndrome and thyroid disease. Vision and hearing should also be checked periodically. [/ms_accordion_item]

[ms_accordion_item title=”What should a clinician know about Julia’s communication skills?” color=”” background_color=”” close_icon=”” open_icon=”” status=”close”]Because of Julia’s expressive language delays, it takes concentration and extra time to understand her. We have been working on different strategies to help her communicate, strategies that include an organizer for her to type in what she is trying to say. It is important to remember that although her expressive language is delayed her receptive language is not. She can understand what you are saying and will act appropriately. This will require extra time with her in the exam room, so the healthcare provider will need to spend longer than the allowable time with her. Ten minutes into the exam the office assistant should not stick their head in the door and tell the doctor to move on. To prevent this from happening individuals with special needs should be scheduled accordingly to allow the necessary time for a thorough exam.
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[ms_accordion_item title=”What do you see as the role of a healthcare professional in self-determination?” color=”” background_color=”” close_icon=”” open_icon=”” status=”close”]Another critical responsibility for the healthcare professional is to foster self -determination in the individual with the disability. There are many ways this can be done. Greet the individual by name. Include the individual in the discussions that concern their health, including the importance of exercise and good nutrition. As the individual ages sexual health will also be an important area for discussion. Julia has many things she does independently, like dressing herself. She cannot tie shoes, so we have found shoes that either slip on or use Velcro for closing. This is an important step. Julia also picks her breakfast and lunch menus. She knows that she must take a vitamin and we are working with her on getting it out of the bottle. We have started working on preparation of food. The healthcare professional can also advocate in this arena for the individual. [/ms_accordion_item]

[ms_accordion_item title=”What is the role of the healthcare professional in receiving appropriate services?” color=”” background_color=”” close_icon=”” open_icon=”” status=”close”]The healthcare professional should work with us as a partnership to provide Julia with the best healthcare possible. This means that Julia should be treated with respect and sensitivity. Comments such as “she is such a great kid, but we wish she didn’t have Down syndrome” should not be made. The healthcare provider should not look at me with pity in their eyes because Julia has a disability. Instead we need to be rejoicing in the fact that she is doing as well as she is. As a member of the team, the healthcare provider must focus on her strengths.

The healthcare professional must also be able to make recommendations concerning the individual’s placement within the community. In Julia’s case this would be for the least restrictive environment in the educational setting. The healthcare provider should also be able to serve as an advocate to ensure the individual has access to additional healthcare as indicated. This includes therapies, medications, assessments, etc. [/ms_accordion_item]

[ms_accordion_item title=”Is there anything else you would say to a healthcare professional?” color=”” background_color=”” close_icon=”” open_icon=”” status=”close”]Last, the healthcare provider should not be afraid to admit that they don’t know the answers, but are willing to find out. When Julia was young we took copies of the growth chart for individuals with Down syndrome into her pediatrician. They were very appreciative, but did not use it unless I reminded them. We had an insurance issue and had to change physicians. When we showed up for her checkup he had printed out the growth charts and had them at the front of her chart. He also had the Healthcare Guidelines for Children with Down syndrome that he had printed off the web site. This indicated that he had the interest in Julia and wanted to provide good care. I asked some questions about puberty that he did not know, and he admitted that he did not know, but he knew where he could go to find information. This meant so much to us.
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