Warrior’s Heart

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5 Ways the Environment Can Be Harming Your Child

In the search for a cause and cure for neurological disorders such as autism, ADHD, OCD and others, medical experts and researchers have recently focused on our environment and how it relates to neurological development. Some of the environmental factors being looked at include: air pollution and other sources of heavy metal toxification, genetically modified food, parental age, processed food and diet, screen time, ultrasounds, and vaccinations. Fortunately, if an environmental factor is the cause of your child’s disorder, there are a variety of approaches you can take to possibly reduce or eliminate their symptoms.

Five common factors that can affect neurological development include:

  • Heavy metals
  • Processed foods
  • Other dietary issues that cause allergic reactions
  • Bacteria and/or viruses
  • Neuro-physiological development

This is an excerpt from the Pathway to HOPE Resource Guide. To learn more about these environmental factors and how to remediate them, 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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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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Autism Treatment Evaluation Checklist (ATEC)

A major obstacle in autism research has been the lack of a valid means of measuring the effectiveness of various treatments. Over the years, researchers have published hundreds of studies attempting to evaluate different biomedical and psycho-educational interventions intended to benefit autistic children. Much of this research produced inconclusive or, worse, misleading results, because there are no useful tests or scales designed to measure treatment effectiveness.

Bernard Rimland and Stephen M. Edelson of the Autism Research Institute developed The Autism Treatment Evaluation Checklist (ATEC) to fill this need.

The ATEC online assessment checklist asks parents a series of multiple choice questions. Parents can respond about whether a given symptom is a problem for their child and, if so, how frequent or severe the issue is.

At the end of the assessment, parents will be given a numerical rating… the higher the number, the more severe the autism symptoms.

A child who is old enough to be talking and potty trained, and is not might be considered in the more strongly impacted range and score near 100.

A child who is potty trained, talking, and in a mainstream school with an IEP and a pull-out for special education might be considered “high functioning” and have an ATEC score closer to 40. Often these kids have issues like sensory processing problems, trouble with social connections, inflexibility, hyperfocus on certain topics, or issues with body awareness and coordination.

You can find the ATEC online at https://www.autism.org/treatment-ratings-for-autism/.

This article is 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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12 Questions to Ask When Selecting a Doctor for Your Child

When interviewing doctors to find the one who can provide the best care for your child, ask the following list of twelve initial questions on your first visit: (Note: Some of this information may be available online, or you may be able to ask a few of these questions when making your appointment.)

  1. Are you board certified? If so, what is your specialty and where did you go to medical school? Ideally, you want a board-certified physician that went to an accredited medical school. Early in our search for a pediatrician, we visited a pediatrician that was recommended by several families. During our initial meeting she attempted to offer our son a corn syrup filled sucker. When I said, “No, our son has allergies”, she responded, “Oh, you’re one of THOSE moms.” Yup, I was one of those moms that had an ADHD little guy that didn’t need extra sugar and had a host of allergies. I later found out that she had her medical degree but had not received it in the United States.
  2. Do you encourage parents to ask questions and express opinions? Do you encourage participation in care and encourage the patient and parents to be part of the medical team? Our all-time favorite medical doctor, a neurologist, made a point of beginning his relationship with his patients by telling the parents that he expected and encouraged questions. If the parents were researching information on their child, or seeing something, he wanted to know. He was adamant in his opinion that parents were part of the team and he wanted and needed to hear from them.
  3. Am I able to call you directly in case of an emergency? Our son was an extremely medically complex child and I’m convinced that asking this question and having the cell phone of his Chicago based specialist saved his life when he was eight years old. Our medical specialist took our call, listened to the situation and immediately phoned our local team of doctors and told them how to proceed.
  4. How long is the wait to see you for non-emergency appointments? If there is an emergency what is your response time and how does the office handle an emergency if I’m unable to get in touch with you? These two questions piggy back on each other and are extremely important. Some specialists will have a 4 to 5 month wait, some longer for an initial appointment. Because of the complexity of our son’s issues, I always requested information on what to do in case of emergency, and ask who was on call. Once we became a patient, we would get into the rotation, and have the ability to see the specialist more frequently.
  5. Is this a group-practice? Will we see you each time we visit or will it be a rotation? If you are unavailable, who can I expect to see?
  6. Can I phone or email you with questions regarding a non-urgent situation, and is there a charge for short questions? If so, what is the charge?
  7. If I need to see a specialist for my child, will you work with me to find the right specialist? This will help relieve a lot of angst if you know your doctor is part of the team and willing to work with a team of specialists.
  8. If it becomes necessary, are you comfortable in working together with our family and a team of specialists? This question becomes especially important once you have a diagnosis. At times, we were working with two different neurologists, and one neurologist with admitting privileges oversaw our son’s monthly hospital procedures, based on direction and input from his out of state medical specialists.
  9. Are you comfortable with me bringing a friend or family member with me to the appointment? Is it possible to record our visit so I can best participate and share with my spouse when I leave the appointment?  This is important, as it can be difficult to ask all the questions you need and understand what is going on when your child is sick. The ability to bring a friend or record can help you tremendously.
  10. Do you work with a certain hospital? This important question can be a deal breaker. For example, if Hospital A is the BEST hospital in your area and close to where you live, but the doctor only works at Hospital Z, which is a hospital that is far away and not as highly regarded, you have a decision to make. Is it worth the risk of seeing this doctor should your child need to be directly admitted to the hospital, and your doctor does not have admitting privileges?
  11. Do you keep paper or electronic records? Do you provide post-visit reports that summarize the treatment plan and what we discussed? This can be very important for continuity of care. Having copies of the post-visit reports ensure you are on the same page, and doctor’s notes can be important as well.
  12. Do you take my insurance plan? If not, do you offer any discounts for cash payments or do you have any other payment options? Probably the most important thing I can tell you is to not dismiss a doctor because they do not take your insurance or accept insurance. We have found through our years of seeing medical specialists, that often the BEST doctors, the medical providers that have a solid history of getting their patients to a good healthy place, do NOT accept medical insurance. We’re so used to it, that if we find a doctor or medical provider that takes insurance it is more the exception than the rule and we do a happy dance.

This list might seem daunting, but I know you’ve got this. Heading to the doctor with this list in hand will guide and encourage you as you ask the important questions to find the right physician, medical plan and team to help your medically complex child.

These four steps are 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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Michigan Children’s Special Health Care Services (CSHCS) Program

Michigan has a Children’s Special Health Care Services (CSHCS) Program for Michigan children with qualifying medical conditions. Here is the link to the list of over 2,700 covered, qualifying medical conditions. https://www.michigan.gov/documents/CSHCS-Diagnosis_Codes-11-2003_78380_7.PDF  For more information:

  • Contact your local county health department CSHCS office
  • Contact the CSHCS Family Phone Line at 1-800-359-3722 or cshcsfc@michigan.gov

To apply for CSHCS, the first step is to ask your specialist to submit a medical record less than one year old. This information can be in the form of a letter or report that fully describes the condition and treatment plan. Your specialist will need permission to send the medical information to CSHCS. Click here for an Authorization to Disclose Protected Health Information form or the MSA-0838 form. (https://www.michigan.gov/mdhhs/doing-business/providers/hipaa/authorization-to-disclose-protected-health-information)

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4 Steps to Take If You Suspect Your Child Has a Developmental Delay

What do you do if you suspect there is a medical issue going on with your child?

  1. First, begin by making an exhaustive list of your child’s symptoms. Be as specific as possible. Examples include: my child has an extreme amount of energy and only sleeps 2 to 3 hours per night, my child appears to be exhausted ALL the time, my child sleeps twelve hours a night and still has dark circles under their eyes. Be specific about what you are seeing, including behaviors and illnesses. Write down your child’s symptoms and any observations, as well as any supplements or medications that your child is taking. Have this information, as well as any questions you have, ready to discuss with your doctor.
  2. Second, phone your primary care physician and request an appointment. Tell the office your concerns and, if possible, ask if there are any tests that can be completed prior to your appointment. This will give you a more productive appointment and more data for your doctor to begin helping you. Your goal is to obtain as many data points as possible, as quickly as possible, so you can get to the root cause of your child’s issue.
  3. Third, if you need to find a primary care doctor take these four initial steps:
    1. Contact your insurance company and find out which doctors accept your insurance plan and are in network.
    1. Compare this list of doctors in network with reviews you will find online.
    1. Reach out to various mom or parent groups and ask parents for their opinions. Moms will be quick to tell you what they liked and didn’t like about a doctor.
    1. Seek word of mouth recommendations from family, friends or previous doctors to aid in your research and help you narrow your list. Don’t forget the information you are gathering is based on other people’s opinions. Your child is unique and you need to work with someone that you are comfortable with, who will listen to you and is willing to help you.
  4. Fourth, do not end your doctor search until you have met with your new doctor. You need to be sure you are comfortable and able to communicate easily with your new doctor.

These four steps are 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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3 Questions Every Dad Should Ask

Ads of all type try to convince us that for Father’s Day, dad wants to grill, or golf, or watch big screen TV, or work with power tools. I’ve never been much for the stereotypes, well, okay, I do like power tools. But, instead of following the stereotypes, I do something you won’t find in Father’s Day sales ads.

One at a time, each of my three children and I head out for something to eat. One of them will take me out for a breakfast, with another I will grab a sandwich or some snack food, and the third child and I will get some dessert. And while we’re eating, I ask each of them three questions:

  1. What are you must excited about/looking forward to in the coming year?
  2. What are you most concerned about/worried about in the coming year?
  3. What can I do to be a better dad?

Each year, the answers to questions 1 and 2 change. Although, when each of them turned 14, the answer to question 1 was easy to predict – “Driver’s Ed!” And at 15, the answer was, “Getting a license!” But, through the years, the answer to question 3 has never changed.

“Spend more time with me.”

In my own defense, I do spend a lot of time with my kids. I help them with homework, I enthusiastically attend their sports games, we go to movies together, work on a project around the house, and we talk about stuff. But no matter how much time I spend with them, they want more.

Fathers, my message to you this Father’s Day is to never underestimate how much your kids want you to be involved in their lives.

You are much more than a paycheck to them. To your sons, you are the standard for integrity, patience, and confidence they should aspire to be. And to your daughters, you are the standard for care/protection, involvement, and partnership they should seek in a future spouse. And for all of your children, you should be the inspiration to be the best they can be at whatever they love to do.

So, this Father’s Day, before you fire up the grill, head to the course, or visit your workbench – all cool things to do – let your children know how incredibly special they are and how much you love them. And then, be the best dad ever by checking in with them to see how things are going. These conversations I have with my children are the best gifts that I give myself throughout the year.

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The Faces We Wear – part two

The Faces We Wear - Warrior Mom blog

My friend opened up and told me she was tired, feeling alone and desperately needed time away with her husband to reconnect and remember what it felt like to be “her” instead of the mom of three kids. She needed five minutes to NOT be a mom, to be herself – not the mom that had subjugated her personality for her kids.

Take a moment right now, and ask yourself, how do you see yourself, and how do your kids see you? In my mind, being home, dealing with sick kids was a temporary stop, a stop on the way to FINALLY being able to return to work- back to the life I knew and desired it to be. To paying off ALL the medical bills and having money to travel and experience all the FUN things I longed to do. To my kids, a mom was someone who helped them study, fed them, cleaned the house and took them to various practices and games and doctor appointments. In their minds, my highest purpose and calling was to clean the house and take them where they needed to go – a glorified chauffeur.

My kids could not imagine a fun, crazy, younger me. I was just mom. And my middle child, brought up, “My mom isn’t really that much fun. You know, she’s not CRAZY”. A friend that overheard this comment, laughed pretty hard and proceeded to tell my daughter that she had stories she could tell her about me, her mom! This happened five years ago and the experience startled me. It woke me up and helped me realize how important it was to keep from losing myself. To keep from losing, ME, while I was in the midst of raising children with a variety of issues.

Raising kids that have ADHD, learning issues, autism and auto immune issues tends to be an all-consuming job. My primary job has been scheduling and researching the best and next therapy, and administering supplements and antibiotics that my kids needed. I’ve really missed working outside the home, but instead of being in the thick of a business development deal I’ve been in the thick of wading through research and getting my Doctor of Google as I researched the best therapies and doctors across the country. I was often researching until all hours of the night, starting at 11:00 when the house was quiet and working until 3 am, or talking on the phone late at night with my friends that were across the country and dealing with similar issues. Talking to like-minded friends, who were struggling with similar issues really helped! And through it all, realizing how different our life was because of rude neighbors that were afraid “autism might be catchy”, and different because of the sheer volume of research and discussions we had to complete and have with our team of doctors.

In the midst of this rambling adventure, I realized that I’m blessed. My whole family is blessed. This adventure has helped us to see that we don’t have to go through life pretending that life is wonderful, wearing a mask and trying to figure out how to make our children more popular or be part of the “mommy mafia”. Instead we’ve been focusing on the things that matter. We’ve focused on our kids, getting them better, helping them to feel good about themselves and paying forward our hard won learning. And through it all, yes there’s been times where I’ve felt like I’ve lost myself, but mostly it’s been a journey where we’ve built our own village.

The next time someone asks how you’re doing – what will you tell them? What is your truth…..good or bad or somewhere in the middle? Are you able to see the silver lining, even during the bad times? My challenge for you is to slow down, to stop, take a deep breath, hold it for 8 seconds and then slowly blow the air out and do this for 2-3 minutes. And while you’re at it, slow down long enough to take 15 minutes, just 15 minutes a day or a week to start taking care of yourself. Keep adding those minutes up until you’re ready for an overnight get-away- either with friends or your spouse. You’re worth it and you need to start finding the joy – what makes you happy? What is your prescription for happiness?

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The Faces We Wear – part one

The Faces We Wear - Warrior Mom blog

Recently, I walked past a mom that I know in passing and casually asked her how she was doing. She surprised me. Usually she gives a chipper answer, life is good, great, couldn’t be better, basically has the face on.

Today was different. Today she told me she was tired and she wasn’t doing very well. And what continued was a fairly in-depth conversation. She told me she needed a vacation. She said, “I need a vacation from my 3 kids, from all the sports, parties, etc. I’m just tired. My husband is traveling, and dealing with all the kids activities has gotten to me. I’m ready for it to be done”. She then continued to say, she hadn’t left her kids overnight in years, maybe twice ever. She told me that she wanted five minutes to herself where she didn’t have to be a mom, where she could just be herself. She was tired, she was bored and she didn’t like her life very much.

It was a lot to dump on a casual acquaintance, but I was up for the challenge. I asked her what did she like to do? What gave her joy and made her laugh. She stared at me for a couple seconds and answered, ‘that’s the problem, I just don’t know anymore”. And I wanted to cry for her. This wonderful, amazing person had become a mom – a mom that gave so sacrificially that she didn’t have ANYTHING left for herself.

On the surface this mom and I are very different. She is on the roller coaster of life- she has three children that appear to be perfect. They excel in sports, academics and have a lot of friends. Whereas my three children have various levels of academic and social issues. Instead of spending time learning how to play the piano or another musical instrument, my kids spend their extra time being tutored and going to doctor’s appointments.  Many of the dreams I had pre-kids – the dreams to be a family that sailed, skied, and traveled have not been realized. Each year I think, maybe this year some of the expensive therapies will take and we won’t have to spend all of our money on therapy and home repairs. Maybe this year….

What this conversation did, was help me to realize that even though this women has three seemingly perfect kids, we are not that different. Her kids drive (and possibly hers as well) have compelled them to fill their nights and weekends with soccer games, practice,  parties, sleep-overs, all in the quest to have the perfect child that will succeed in life. While our days are spent with homework. Homework that takes her kids 30 minutes will take my kids up to 2 hours. We’ve consciously made the decision that our kids will be in one sport at a time. We feel that our kids and our family needs some down time, some margin.

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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.