Doctors Should Be Partners, Not Dictators

Caroline undergoing a medical procedure that required her to be still.

When I was young, I held intelligent people in the greatest of esteem; as I am growing older, I realize I now most admire those who are kind and empathic.  I research doctors; I try to get Caroline appointments with well-established, accomplished clinicians. But it is not until I meet a doctor or therapist that I know if our relationship will endure.  Yes our relationship.

I don’t have a medical degree but that doesn’t stop me from reading literature.  I don’t think that reading literature makes me a doctor; I think it makes me an informed parent and patient who will partner with a medical team to come up with a medical and therapeutic treatment plan for Caroline.  I will not blindly consent to procedures, tests, or medication.  I will research protocols and calculate the cost-benefit to determine if the side effects are worth the risks.  I am the person best situated to calculate whether the potential benefit of a protocol is worth the risk, not some scientist who sees my daughter on a quarterly basis.  I am the one who stares into her big brown eyes as she signs and tries so very hard to verbally tell me what she wants.  It is me who changes the feeding tube in her stomach every three months.  And as hard as it is to admit--I don’t know my daughter well-- because no one does—she is locked inside of herself to some extent. I do, sure as hell, know her a lot better than any member of her medical team. 

Flashback  

 I am 28 years old standing in a Pediatric Intensive Care room in Phoenix, Arizona. I haven’t slept or showered in days. Instead of eating, I opted to inhale cigarettes (don’t judge, I feel bad enough about my stint as a smoker). I was the shredding thread holding my family together.  Doctors were making rounds; I slapped some water on my face hoping it would wake me up a bit.  Brit was the first the kid being rounded on—if you have spent enough time in hospitals you know that is not a good thing—in the PICU doctors visit patients based on the seriousness of their illness. The neurologist walked in, he started talking and quickly revealed that he had not read the labs that had come in overnight or the notes left by his colleagues.  With some edge, I suggested that he step out and take a few minutes to review the chart before making any further comments.

The words just slipped out of his mouth so causally, “I understand what you are going through but you need to calm down.” I took a deep breath and (rather loudly) said….”You know what I am going through, you understand?  What hospital PICU is your daughter in, what crosstown hospital is treating your dad because I would really like to send them flowers. Don’t you DARE assume you know what I am going through because you read words on paper.  I realize you are a neurologist and CRAZY smart but I encourage you to work on your bedside manner or take a job in a lab. By the way, that was your one mistake.” 

His only response, “One mistake?”

“Yes, I can remove anyone from Brit’s care and you are dangerously close to being adding to that list. And yes, I know what an “interesting” case she is.”   

It was in that moment that I gained my voice.  There have been times since that I have questioned myself more than I should but my confidence grows daily. Between the experience in Brit’s PICU room  and being Caroline’s mom I have not only learned how to advocate but I have forced myself to question doctors with the most impressive credentials.

I don’t want to give the impression that I am always combative when working with doctors and other clinicians because I am not. But I am not afraid to fire a doctor, lodge a complaint, or push back regarding a treatment protocol.  I have grown to accept, “you catch more bees with honey than vinegar” but also believe that it is important to advocate and not to think a doctor knows more than you. 

10 Things Every Parent of Medically Involved Kids Knows (and Every Parent Should Know)

1. You know your child better than anyone else—don’t ever let a doctor convince you they know your child better than you do.  Now, I am not advocating for denial—so use this advice cautiously.  If you don’t agree with a doctor ask questions, if you can’t get answers get a second opinion. 
2. When raising a medically involved child—sometimes finances prevent us from providing our children with what is best. I am no longer shy about asking if the doctor has any of the formula that costs our family $900 a month because insurance won’t cover it.  Ask for samples.
3. If you don’t think your child is responding to the medicine or is experience side effects…call the doctor…insistent on talking to the doctor…explain the potential issues. Listen to what the doctors says and then call the pharmacist.  Use the information received from both of them to determine how to proceed.
4. Trust the pharmacist. If your pharmacist expresses concerns about filling a prescription for your child and ask them to explain their concerns—if they seem reasonable call your doctor before starting the prescription.  This happens more than I would like with prescriptions we receive from urgent care (and generally for Vivian because I try to avoid taking Caroline to urgent care).
5. Urgent care is great for your typically developing child but unless you have no other choice, don’t take your medically involved child to urgent care. If you are seeking treatment for an accident you will have to convince the doctor you are not a negligent parent. If you are seeking medical treatment for an illness…let’s face it our kids’ medical histories are too involved for an urgent care doc.
6. If a doctor is being rude, curt, or dismissive—tell them. I generally say something like, “I find your tone to be very dismissive and I don’t appreciate it. I have waited months for this appointment I would really appreciate if you take a few minutes to just answer my questions.”
7. Go to appointments prepared.  Always bring your copy of medical records with you, have a list of recently ordered tests, and have a list of questions prepared this shows you are respecting the doctor’s time.
8. If your child has sensory issues or does not do well waiting for prolonged periods of time—call the doctor’s office before you leave your house.  Explain to the office staff that your child has special needs and does not do well in waiting rooms so you want to see if the doctor is running on schedule—if not, how behind is he or she? 
9. Whenever possible bring another adult to important appointments so you can really listen to what is being said.  If you cannot bring another adult bring 2 or 3 of your child’s favorite toys, a drink, and a snack…anything that might occupy him or her so you can have a conversation.
10. Remember doctors are mortal beings and might just be having an off day. This is harder advice to swallow when you have waited three months or more for the appointment. However, if you think your doctor is just having an off day, kill with kindness, “I can see you are in a hurry but I really want to understand what this means—can you please explain it one more time or can you ask a nurse to explain it to me? “

I hope you find these tips helpful…remember it is your job to ask questions so you can advocate and prioritize your child’s care.Do you have any other helpful tips?

Never Fear Grandpa Is Here

Adversity has the power to define a person and I have come to believe it has the ability to change a person. 

On my wedding night, my dad and I danced to “I Get A Kick out of You.” This pretty sums up our relationship—we find each other entertaining—but we take each other with a grain of salt.  It took years of therapy to repair my relationship with my father—I don’t know if he ever knew how fragmented it was or that therapy was what fixed it. 

For years, I thought my dad was a mean son of a bitch who didn’t care a whole about anything.  This could not be further from the truth.  My dad is not and was not a mean of son bitch but rather he is an angry son of bitch who is not very good at expressing any emotions other than anger in the form of rage.  And while for years, I thought my dad did not really care about anything the truth is he a man of passion and conviction—he is most passionate about his family.

I share the evolution of my impressions of my dad because it is important to recognize when someone’s grows into their true self. And I believe with my whole heart that my dad has grown into not only the man he was capable of being but the man he wants to be. Growing up my dad was known for his short-temper and extreme reactions.  He would yell so loud the neighbors turned up their televisions.  On the other hand I can remember more times than not we had family or friends living with us because they were having hard times, my dad was forever helping someone with this or that. He  also worked a physically demanding job for 40  years—sometimes he worked two jobs—working 20 hours a day and sleeping in his truck between jobs.  But as a teenager and young adult, I wasn’t able to see this—my impression of my dad was shadowed by his short and erratic temper and his narrow ability to accept any truth other than his own. 

My dad suffered a massive heart attack just before my 13^th birthday- 90% blockage for which he went through an emergency angioplasty.  After the heart attack, he stopped eating salt and switched to a filtered cigarette.  His tempter also calmed a bit but not enough for my liking.  Then in 1998 when he held Britney Nicole Wielgus for the first time, another layer of anger seemed to be stripped away.  And sadly, the biggest layer of anger left after we lost Brit.  When Brit entered first grade my dad retired and became Mr. Mom.  Brit was his everything.  Brit taught us all how to love, how to embrace life and how to dance like no was watching.  And maybe it was Brit who taught my dad that he needed to calm down—stop taking everything so seriously and realize that his temper was going to cost him the only things he truly cared about in life—those things that money cannot buy.

A couple of weeks ago, my dad (who I call Thelma) and I were talking on the phone. I shared with him the many frustrations of finding child care for the ladies (specifically Caroline this summer).  And without missing a beat, my 70 year old, hard of hearing, hard of sight, and barely mobile father said…I can come out and help. You and John need a break.  Now…you may be wondering why I would trust Caroline (aka the Energizer Bunny) with someone in my dad’s state well the answer is simple…they are good for each other.  My dad will sit and talk to Caroline all day long and when she decides to go squirell watching Thelma has no choice but to follow. Caroline gets constant care, attention, and verbal feedback—my dad gets a personal trainer.  In all seriousness, seeing my dad with Caroline shows me just how far he has come, his patience for her is never ending. When he looks at Caroline he only sees potential.  While I was hoping to find another Kristen for the summer—I am so happy that both of my ladies have had the opportunity to spend some extended time with Papa. 

This by the way is not the first time; Papa has stepped in to be our many.  He lived with us twice in Chicago (6 weeks and then 3 months) to help with the ladies.  I am so thankful and grateful for his willingness and desire to spend extended periods of time with the ladies. 

At the end of the day, I am thankful not only that my grumpy dad is able and willing to help with the ladies but that I am able to see my dad as the most amazing grandfather, the ladies could ever ask for. And maybe it was because he was such an angry son of bitch for so many years that I have such a great appreciation for the kinder, gentler, less riled Thelma.  Thanks Dad!!

Post Script:  Many people have inquired why I call my dad (John Wielgus) Thelma.  There is a scene in Sister Act, when Whoopi Goldberg pounds on the floor and says “Alma check your battery,” referring to Alma’s hearing aid battery. Funny part: for years I thought it was Thelma, so I started calling my dad Thelma because he is SO VERY hard of hearing and has been forever. Joke is on me, it was Alma—but he is still Thelma.    

A Note of Honor for the Birthday Ladies!

I have not always liked my sister, in fact there were stretches that lasted several years where I was pretty convinced she was an agent sent by Satan to ruin my life.  No, really—if she wasn’t plotting some evil strategy to get me grounded she was stealing my stuff.  I silently and sometimes not so silently wondered to myself how of all the sisters in the world did I get stuck with her…she and I are nothing alike and her only real past time is annoying me.  

We were stone cold sober--I don't what got in to us.

Luckily as time wore on and we got older, Dawn became a bearable human being. In fact, I actually started to like her. I found myself spending time with her even when I had other things to do. And then one day, I realized—oh shit! Dawn is not only my sister…she might be my best friend.  Dawn grew-up with me so she understood my brand of crazy, when talking with her I never have to start any conversations with do you remember when—because of course she does…but it is so much more than that.

Dawn helped me keep me sanity during Brit’s illness. When Dawn became my only sister, in this world, again; she understood the complexity of my feelings and grief like no one else. Sometimes, we would call each other and just sit in silence together on the phone—or cry—words weren’t necessary. She understood.  Dawn is my strength, my rock, and my inspiration.

The Wielgus Sisters

Dawn is Wonder Woman.  She is an amazing mom to three pretty awesome kids (who might just have the best aunt in the entire world). Dawn is wicked smart, she has an unmatched work ethic, and a kind, giving heart.  I do not know anyone who can not only move mountains on a daily basis but do so with dignity, grace, and a smile. She has a peaceful calm about her until she is pissed off and then she channels her inner mobster (we are still looking for the bodies). And just to give you some examples of Dawn’s awesomeness: she co-founded a family business with her husband the Chiropractor—Dawn handled ALL the business side stuff from becoming in-network with insurance companies to developing and implementing a marketing strategy to getting their practice online with electronic medical records—oh yeah did I forget to mention she went to school fulltime while doing this; gave birth to three children, and frequently volunteered at community events.  WONDER WOMAN!     

When I called Dawn to tell her that Caroline had been diagnosed with Autism—she immediately found a silver lining—“You (and by you, I mean you and me) will never have to wait at Disney again.” Yes, two months later, Disney changed their policy.  But the point is, in that moment when I didn’t know what I was feeling other than everything—Dawn gave me a reason to laugh.  And on the numerous nights, when I called her crying because life was stressing me out—Dawn didn’t tell me it will get better or it is not so bad—she said “You are right this sucks and I am so sorry this is what your life looks like right now.” It was what I needed to hear. 

A week before Caroline’s first Christmas, Dawn drove 70 miles to babysit my ladies so John and I could go Christmas shopping. This is when Caroline who had an NG tube (that was scary to many people) and when she was crying for 16 to 18 hours a day and projectile vomiting multiple times daily.  While watching both Caroline and Vivian, Dawn also managed to clean and decorate my house (including putting up a Christmas tree). I almost cried when I walked in…Dawn said I wished I could have done more.  

One last reason Dawn is special—she has graciously shared her birthday with none other than Vivian for the last five years.  The day after Vivian was born Dawn came to visit me in the hospital. She walked into my room and said “Give me my niece.” I promptly handed Vivian over thinking nothing of it.  No sooner than Dawn had Vivian in her arms than she said “Now, don’t freak out everyone will be fine.” She went on to tell me that my husband had a blowout tire on the highway during the summer in Arizona.  And that my dad had cut off his finger while trying to finish Vivian’s crib.  She assured me everyone will be fine and not to worry—I should just enjoy the peace and quiet in the hospital—oh and I should not disturb her visit with her niece. Maybe Vivian learned her cool and demanding manner from her birthday buddy. 

Since the moment that Dawn yanked Vivian from my arms so she could barrage me with bad news and ensure the safety of her niece I have been fortunate enough to watch with wonder as Vivian has grown in a force to be reckoned with.  At the tender age of 5, this little lady has mastered many skills that will take her far in life.

Vivian dancing

Just the other day, she demonstrated her ability to be passive aggressive.  “Mommy, I am practicing dancing so that when I start going to the dance class you said you would sign me up for I will be ready.  Remind me again, why didn’t I get to dance while we lived in Texas?”  Yes, she might be getting dance lessons for her birthday.

Vivian also understands that sometimes, a girl just needs ice cream for dinner.  And while she enjoys actually eating the ice cream, she takes joy in the fact that she is doing something whimsical.  During these ice cream meals, the joy of the moment often overtakes her and she generously shares her ice cream with her seester.

She understands life is not a race. “Mommy it is not a race. Well, maybe it is but whoever finishes second wins.”  In other words, she sets herself of success at every possible opportunity and understands how to manage expectations.

Vivian has learned the great joy that comes from teaching someone a new skill.  Vivian comes from a long line of teachers on her father’s side and has already expressed an interest in being a teacher when she grows up.  She has a teacher voice and since she was 16 months old she could hold a book so as the ‘entire class’ could see the pictures.  And she takes great pride in teaching or helping her ‘sweetie’ (aka Caroline) master new skills.  “Okay, Sweetie, criss-cross applesauce, now touch touch the green slipper.”

Vivian is amazing for some many reasons but perhaps because of the relationship I have with my sister; I am most proud of the amazing big sister she is.  Vivian is kind, thoughtful, and patient (as is possible for a 5 year old).  She is passionate, articulate, argumentative, and bossy all the makings necessary to develop into a strong-willed, confident woman.

I am thankful and lucky to have both Dawn and Vivian in my life.  Both of these lovely ladies make me a better person, challenge me, and remind me that I am never alone in this world. 

Happy Birthday Dawn and Vivian. Thank you for all you are and all you are to me.  I hope you both have a wonderful day.

What Could Go Wrong?

 When it comes to being Caroline's mom, I have learned to expect and even plan for the unfathomable.  She has a way of making absolutely everything exciting. With a lot of coaching I have come to realize it is so much better to enjoy the ride than to freak out that the destination, time and date have all changed. (Note: this is not a Welcome to Holland reference or maybe it is--you decide.)

Our last exciting adventure took place yesterday. A fun filled trip to the dentist.  Now a trip to the dentist can be overwhelming for any child but for Caroline it is almost unbearable.  I was lucky to find an awesome special needs dentist, Dr. Jacqueline Beard. Not only was the dentist awesome but the entire staff was kind and understanding.  When we arrived, it was just me and the ladies in the waiting room. Naturally, they acted like they owned place.  Caroline squealed with delight when she spotted the large fish tank.  I love when she makes this high pitch sound because I know she is euphoric; however, to some who are not accustomed to this particular sound they might be checking to make sure that glass is not shattering. So while Caroline is expressing her joy, Vivian has appointed herself Princess-Queen in charge of the playhouse.  Very quickly the Princess-Queen needs to use the bathroom.  Unfortunately, Caroline has moved on from enjoying the fish to standing at the top of slide in the playhouse, trying to decide if she should come down. Mind you the slide is carpeted so it is a completely new experience---this decision could easily take 20-30 minutes.  A member of the office saw my predicament and offered to watch Caroline while I ran Vivian to the bathroom.  

When we returned it was our turn to head back to the dentist.  Caroline was still hanging out at the top of the slide. I tried to climb from the bottom of the slide to get Caroline but I failed miserably.  The hygienist was so patient and even tried to hide her smile at my failed attempts. I finally pulled out my phone and used that lure Caroline out of the playhouse down the stairs.  

Caroline trying decide if she should
come down the slide. Vivian attempting
to climb the slide after my failed attempt.

Now for the fun. Caroline climbs in the dentist chair. Notice there is no picture because she did not stay long. As the dentist approached wearing scrubs and latex gloves, Caroline let a scream that shook the building. Not deterred the dentist instructed me to hold Caroline in my lap and then suggested in addition to the bear hug--I am very familiar with--that I wrap my legs around Caroline to further trap her.  Now the dentist does a a skillful job of getting into Caroline's mouth--remember Caroline has both STRONG oral aversions and is a HUGE sensory seeker, especially orally.  In other words she only wants things in her mouth that she puts there and she has been know to bite.  Dr. Beard was fearless as she did her exam.  

The findings sadly evoked fear in my heart.  One of Caroline's molars has such a large cavity that part of the tooth is missing.  So she needs to go under general anesthesia to have a crown put on that tooth, have x-rays done, a cleaning, and other restorative work that is necessary.  I know my dental plan only covers 50% for major dental--but I was relieved to learned that children's crowns cost a lot less than adult crowns. Additionally, Caroline can have a ton of labs drawn while she under anesthesia. And Dr. Beard resisted the urge to lecture me about the importance of dental hygiene for my child with major sensory issues.   

As the dentist is trying to explain all this to me, Caroline is running around the treatment area pressing every button she can find. At that the dentist suggested Caroline and I retire to the reception area while Vivian had her teeth examined.  Caroline was playing in the playhouse while the office staff was explaining the process for scheduling the surgery.  All of sudden I see Caroline reaching into a woman's purse. Yes, Caroline was trying to get her phone. I start walking toward Caroline and the mother stopped me, "No, no don't worry about her, she is fine."  About two minutes later, I hear the woman scream, "Lord NO, STOP, STOP!" I look behind me to see Caroline with the woman's keys in her hand running quickly toward the electric socket.  

Notice Caroline with one shoe...yes
the picture is blurry because she was
moving that quickly the entire time we
were at the office--except when she was
deciding if she should slide or not.

I grabbed Caroline, the woman grabbed her keys. I apologized and made a joke. The dentist came running to the reception area and offered her assistance.  I asked if she was interested in keeping Caroline overnight for observation...the offer was declined. To tell you the truth I don't it was even really considered.  

I finished getting the ladies together--which included putting their shoes back on because Caroline ALWAYS takes off her left shoe and Vivian decided to take off both shoes because Caroline did--shoes on and we head out the door.  Yes, it was POURING.  I just looked behind me, to the left, to the right...nope there were no hidden cameras this was really happening.  

But we made it home, we survived a trip to the dentist and Dr. Beard is even keeping us a patients.  All is good in the world.  Now, if I wasn't Caroline's mom I would have freaked about 12 times during this experience. But since, I am Caroline's mom I was happy Caroline did not cause the poor woman in the waiting room a heart attack, we did not scare off  Dr. Beard, and that the cost for this procedure is going to minimal compared other medical expenses. As Caroline's mom, I have learned to be thankful for things that would have put me the fetal position before becoming Caroline's mom--so thank you, Caroline for making more appreciative. 

10 (Hopefully) Helpful Tips and Tricks from Caroline's Mom

My head is swirling. The legal size notepad in front of me is filled with a list of phone numbers that I need to call or should have called already. I dial the first number: voicemail. The second is a wrong number. The third only accepts intakes on Wednesday. Autism is not covered by the fourth program. There is at least a 6 month, 2 year, several year wait list for the fifth, sixth, and seventh numbers. After calling the ninth number I am informed that Caroline will be considered for services after I fill out a 10 page application and send a copy of all of Caroline’s medical and educational records. There is an answer at the tenth number; unfortunately, the doctor is not accepting new patients. And finally the eleventh number the doctor is taking new patients but they are scheduling for August. With that I decide that to take a break—today is probably not the day to call the insurance company to discuss the meaning of “medical necessity”.

Being a parent of a child with special needs requires great organization and communication skills as well as a high level of self-awareness. Ohio is the fourth state that I have established care for Caroline. Along the way I learned a few tips and tricks.

10 (Hopefully) Helpful Tips and Tricks from Caroline's Mom

1. Get your documents organized—kids with special needs generate a LOT of paper between medical and educational records; applications for programs, and medical bills. I keep a copy of ALL of Caroline’s medical records, yes all of them. They are now in a binder and sorted by specialist and then by date…many of them our scanned and saved electronically. This saves a lot of time when applying for government programs because almost every program requires documentation of diagnosis to determine eligibility. The binder that sits next the medical records binder holds every educational document we receive. The third holds medical bills---paid bills are filed in the back with a note including the date they were paid, in the front I keep all unpaid medical bills filed by amount (let’s just say this binder is top heavy). In each binder, I keep a piece of notebook paper so I can document every conversation I have minimally I document: who I spoke with, the date and time, and a brief summary of the call. I hope to move this documentation to a Google Doc but right now the hard copy is nice to have.
2. Find a Social Worker. Social workers are the best way to find out about services and programs that can benefit your child. In Ohio, Milestones (a local nonprofit) connected me with this information. When I contacted them I didn’t beat around the bush. I explained that my daughter has autism, failure to thrive, global developmental delays, is nonverbal, requires nutritional support from a g-tube, is medically involved (has had several surgeries) and our insurance does not cover most of her treatment. I also share off the bat that my husband and I make a decent living (though more than half of it devoted to paying for Caroline’s care) so we are not eligible for programs that consider income. Why waste time…I cut right to the chase. I also make sure to ask about respite. I know it seems like a luxury but next to the wait list for waivers the wait list for respite is the longest.
3. Find One Good Therapist and One Good Doctor. One, only one? Yes, because that one doctor and one therapist will connect you with other amazing therapists and doctors. Don’t stress about finding a whole team at once.
4. Make a Memorable First Impression at Your Child’s School. Let them know you are organized, articulate, and informed. When it comes to getting services a first impression goes a long way. I like to bring all my records and copies of advocacy materials. I also make a habit of citing recent court cases and any bad publicity the school has received. I know it is low but again information is your friend. I received some great advice from a neighbor (who I never met in San Antonio) about how to prepare for an IEP her tips and the knowledge I have gained being married to a high school principal make me pretty effective at getting Caroline services but I still haven’t cracked the code to getting enough services.
5. Don’t Be Afraid to Accept Help. One of the reasons that I developed such close friendships in San Antonio so quickly is because when people offered to help I said yes. And when they said I would like to help but I am not sure what I can do, I would say it would be great if you could XXXXX...It took a long time before I would ask for help but my life is a lot better now. By the way I am looking for a volunteer administrative assistant…if you know anyone who is interested message me.
6. Create Task Lists and Consider Using Google Docs. So when someone does offers to help I know what needs to be done. I put everything on the list and share it with John, my husband. That way, when either of us has a free moment we can work on the list and mark it complete.
7. Find a Friend. Someone who isn’t judgmental but is available to catch up after bedtime. It helps if she likes wine.
8. Know When To Kill with Kindness and When to Have an Edge. I am super, super nice to anyone connecting me with services. I try to strike a balance between infuriated and understanding when talking to the insurance company—I mean it is not the customer service reps fault that the company chooses not pay for any of Caroline’s services.
9. Know When to Take a Break. Raising a child with special needs is exhausting. I have learned the only way that I am any good to anyone is when I take time for myself. And sometimes, after a couple of really bad days—I just take a week off. I don’t call the insurance company, I don’t do any filing, I don’t make any new appointments---I just maintain. And that is okay—I am Caroline’s mom but even Caroline’s mom is only human.
10. Make Time to Be a Parent, First. This was really hard for me. I spent so much time trying to find the right specialist, fighting with the insurance company, and reinforcing therapy that I wasn’t bonding with my daughter. Don’t forget to be a parent—yes part of parenting a child with special needs is organizing and advocating but the most important part is being present your child’s life.

These are tips that work for me. Believe me, I know my processes and lessons don’t apply to every parent who has a child with special needs but if they help one parent, I will be happy. What tips and tricks do you use to organize your life and keep your sanity while parenting a child with special needs?