Tag: Warrior Mom life

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What to Do After You Have a Diagnosis

During our years of dealing with medical issues, I’ve spoken at conferences and also was asked by Children’s Hospital of Michigan to speak to a group of residents about how to speak to patients that have chronic medical conditions.

Here are the initial questions we’ve compiled to help you navigate your child’s diagnosis:

  1. What is the name of the disease or condition? When you go home, you will Google the diagnosis for recommended treatments. You will also want to check blogs and social media sites for anecdotal evidence regarding other families experience with both treatments and medical practitioners.
  2. Is your child’s life expectancy, both short and long term, affected by this condition?
  3. Will it impact my child’s home or school life?
  4. Is there anything we need to be aware of as we begin this process of learning about their illness? Where can I learn more about my child’s condition?
  5. What level of support do you feel my child will need at school, home and in the community?
  6. How did you arrive at this diagnosis? What tests did you use? What are the diagnostic criteria for the diagnosis?
  7. How did my child perform on the tests that were used?
  8. Are there any other evaluations needed to confirm the diagnosis or to help in treatment planning?
  9. Can I have copies of the medical reports that detail this process as well as copies of your medical notes and follow up notes from this visit? It is important to have a copy of the medical reports for your child’s personal medical binder. You will need to begin building your own personal binder with your child’s medical reports, lab work and treatment plans. Depending on your child’s medical condition, you may be working with a large team of medical providers and it is important that you have ALL of your child’s medical information readily accessible to you and your team of doctors as sometimes there may be a lag in obtaining reports from various medical offices.
  10. Based on your observations, what therapies do you believe would be most beneficial for my child? Is there a specific plan/order of treatments that should be followed?
  11. Can you please advise what educational therapies and supports will be needed?
  12. What community resources are available to my family, including resources to support parents? Please see this link on the Healing Complex Kids Web site for a list of community supports. (insert link- work in process).
  13. Do you have any recommendations for what I should tell my child about the evaluation/diagnosis? Where can I get more information?
  14. When should my child be evaluated again in the future? What timeline for follow up should we be following? This is especially important when dealing with specialists that have a four to five month initial wait. Before you leave your appointment, get out your calendar and make your next few appointments.
  15. Can you share with me some success stories of children with my child’s diagnosis that have recovered or dramatically improved their quality of life? If the medical provider tells you no one has recovered or improved, then RUN (do not WALK) out the door and do some additional research to figure out where you should be taking your child. Even children that have severe genetic conditions have the ability to improve and you need a medical provider that will help you put a plan together and will celebrate your victories and help you along your journey.
  16. Ask your doctor what are the pros and cons of the various therapies/alternatives they have discussed with you.
  17. Is my family eligible for any government supports? For example; “Michigan has a Children’s Waiver Program (CWP) which makes it possible for Medicaid to fund home and community-based services for children who are under age 18. To be eligible for the CWP, the child must have a documented developmental disability and need medical or behavioral supports and services at home. In addition, the child must have behavioral or medical and habilitative needs at home on a consistent daily basis that meet requirements for the level of care for an Intermediate Care Facility for Individuals with Intellectual Disabilities (ICF/IID).” 
  18. Michigan has a limited number of waivers and it can take years to receive a waiver. To begin the process Contact the Access Center in your family’s county of residence at: https://cmham.org/membership/cmhsp-directory/  Be prepared to describe your child’s needs, their functional limitations, the in-home help and services you are requesting, and your family’s income and resources (including private insurance and Medicaid eligibility). (https://www.michigan.gov/mdhhs/0,5885,7-339-71550_2941_4868_80988-427535–,00.html)

This checklist an excerpt from the Pathway to HOPE Resource Guide. To purchase your copy (Oakland County, MI residents pay only S&H thanks to a grant from United Way of Southeast Michigan and from Oakland County government), visit https://healingcomplexkids.org/product/2021-pathway-to-hope-resource-guide/.

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I’m a Warrior Mom – not a saint!

A couple months ago, my son and I traveled to a university hospital to complete some testing and meet with some doctors from one of the medical specialty clinics. The day started off pretty uneventfully, until the head doctor walked into our room with her entourage of doctors-in-training. The doctor began by smiling at me and my son, than she said something that had my eyes instantly fill with tears.

She told me she had been to Eastern Europe and toured some of the orphanages and that my husband and I were saints. By adopting our son, we had likely saved his life and she wanted to commend us. If we had not adopted him he would probably have died.

The mere thought of my son dying, alone and scared in an orphanage instantly invoked two emotions. The first was extreme sadness at the thought of losing my precious son and secondly, anger at the insensitivity of this doctor.  Seriously – she was going to commend me for being a saint – lift herself up in front of her students, like she was some expert when it came to medical care in Eastern Europe and she’d admitted to only visiting a couple orphanages on ONE visit.

My son was sitting across from her. And he was suddenly extremely anxious, pale, scared, and very concerned – because all he heard was he would’ve died if he had not been adopted. He heard that his parents saved his life and suddenly he was preoccupied with the thought of death. “I would’ve DIED”… was what he heard. It didn’t take much to go to the next step – mom, does that mean I’m going to die?

And it was a difficult position for me to be in. What should I say to the doctor? I was battling sadness, anger, and sheer incredibility that she would say this in front of him. Then to add insult to injury, when I told tell her that we really shouldn’t continue in this vein, she indicated that he didn’t understand what we were talking about. WHAT!!! Can you hear my Warrior Mom roar?

I was flabbergasted and furious! Our son has been tested at other facilities and previously shown an above average IQ and a photographic memory. And she tried to tell me that in their testing they had not found the same thing and she did not believe he understood what she was saying. Therefore the testing since the age of 3 at various other highly regarded institutions must be incorrect. Furthermore, the testers at this university hospital repeatedly stated that our son was ill on the day they tested him and they did not feel they got the best out of him. Aghhhh!

So how do you prevent something like this from happening to you and your child? We’ve learned the hard way that people understand things better when there is a story to tell. So feel free to tell this story, our story- about a doctor that insisted on talking negatively about a child and scaring him so much that he talked incessantly about dying and for more than three weeks after the meeting and kept asking, “What did the doctor mean by you saved my life?”

Here are three things that I believe you can say to a doctor, prior to meeting, that are in the best interest of your child.

  1. Doctor, please, try to review in advance any information I’ve painstakingly written down for you. And doctor, when we sit down to discuss the information, please make it possible for me to meet with you alone and then with my child. It’s really important that you DO NOT review behavioral issues in front of my child. This is not a good practice as it can lead to further regressions and issues. Please review the information I’ve spent hours working on and then sit down with me, the parent, privately.
  2. I’m not a saint. I’m a parent that has a sick child. I’m here for help and answers. Please don’t grand-stand in front of your medical students and try to pretend that you are empathetic and understand what I’m going through. Unless you have a complex (special needs) child and have been living with that child, dealing with numerous issues day and night for more than 11 years, you don’t know what it’s like to be me. Visiting an orphanage in Eastern Europe and seeing the quality of care does not give you the right to judge me or my child and to make grandiose statements. Instead, PLEASE tell me that you’re aware of issues/problems with medical care and you are happy to see HOW our family is helping our child and you are here to be part of the solution. Please don’t become part of the problem by going on about what a saint we are for adopting our child. We’re not saints. We’re tired parents that have spent a ton of money and traveled to 17 states to get our kid better. I want to listen to you and get good information from you. When you start out in the way you did, dear doctor, you lose credibility and reinforce why I have trouble finding good doctors to help us.
  3. Don’t disparage what my team of doctors are doing or have told me to do to help my child. If you disagree, think of a better way to say you disagree other than tell me there are unscrupulous doctors/therapists that see you coming and want your money. Yes there are. But give me some credit. JUST because another institution is not doing something that is cutting edge and done by only three locations in the USA, do not tell me that what they are doing is not worth it. Consider that the parent sitting in front of you has not only spent a ton of money to get their child to this point, but they’ve also spend hour upon hour doing research. And yes, if I were a few years younger I would DEFINITELY be going to school to get my official M.D.

And finally, when I come into your office -look at my entire child. He is smart, funny, curious, imaginative, and one of the fastest runners in the 6th grade. Look at him, see his sweet smile, his cocky grin. Be present!

Our family has been to hell and back and we’re still going down that road as we work to recover our child. We’re not done, but until we are done, we will be researching and interviewing a lot of doctors. If you’re good enough to make the team, then you’ve earned our respect and we will expect you to play nice with others. Meaning, do some research and don’t get lazy and just sit back on what you learned last year or the year before. I’m a mom. I got my doctorate from Google.  I spend countless hours every day, week, month and year learning EVERYTHING  there is to know about my son’s illness. When you ask who his primary care provider is, you’re looking at her – me – his mom (and dad too). We know more than you do about our son and his day-to-day needs and issues. If you’re good enough to make the team, you are someone that we trust and someone that we want to listen to.

So please listen with your ears and your heart. When I bring my son to see you, I’m bringing my precious child. We’re on a schedule. We have to squeeze out as much joy and fun as we can, but we also have to accomplish as much as we can during the next 5-6 years to get him as well as possible. So help us – work with us, let’s make sure we’re on the same team.