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?

Together We Can

When I first realized that there was something “wrong” with Caroline, I did not tell many people the extent of the problem. John and I suffered in silence. We did not stop volunteering for extra responsibilities at work, we did not bow out of bringing homemade snacks for Vivian’s class, and we did not sleep.  I did not want people feeling sorry for us.  But as things progressed and we could not hide some of the challenges we were facing-I became an open book. I felt like others could benefit from my experiences and my candor, so I shared.

I have navigated four different insurance policies and social service programs in three states since Caroline’s birth. My previous professional experience working for government and in nonprofits came in handy as it offered me a fundamental understanding of bureaucracy and advocacy.  This week, I hit a brick wall in terms of my ability to provide for my daughter.  You may have been following my attempts to get Caroline’s speech services covered by Cigna. I thought I had been successful; however, I learned this week that under the insurance policy offered by my employer Speech, OT, PT, and ABA are not services currently covered for those with a diagnosis of Autism.  I called Cigna and pleaded my case; they suggested I call my employer.  So I did just that, I called the VP of Talent.  He very politely explained that he could not make exception to allow these services to be covered for Caroline at this time. But he could offer a silver lininig: OT, PT, and Speech would be covered as of January 1, 2014.  I took a deep a breath and referenced the research that spoke about the importance of early intervention and intensive therapy—I choked back tears as I explained this decision could be the tipping point between my daughter, Caroline, being high functioning and being institutionalized as an adult. I explained that these four months are essential and that it would cost me $15,000 out of pocket to pay for Speech, OT, PT, and ABA.   He explained that as a parent he understands how difficult and emotional this must be but there was really nothing that could be done. Now logically, I know you catch more bees with honey but I also know I don’t have time to beat around the bush.  My employer was either going to be helpful or they weren't. I needed to know immediately so I could figure out my next move.

I have learned the hard way that having a child with special needs turns life into a game of chess. Every move needs to be calculated. One must always be thinking about the consequences of each and every action and this must all be done in a sleep deprived, highly emotional and stressed state. And believe me I know, life can always be worse. Today, I read a story about a loving mother who killed her severely autistic son because she could not receive the support she needed to treat the medical condition that exasperated his autism symptoms. Four years ago, I would have judged that mother and questioned her humanity--today, my heart aches for her son and for her.

In the moment,  when I was told there was nothing that could be done to get my daughter the medically necessary therapy she so desperately needs and I felt like I had exhausted all options I was mad, so mad. I was seeing red.  I could not think straight and I could not hold back the tears-strategy was not top of mind in that moment. All I could see was Caroline in an uncontrolled fit of rage because she was frustrated by her inability to communicate.  We had come so far, I had fought so hard every step of the way to make sure that Caroline was receiving the services and the support she needed—only to be shut down now. Now, that she was starting to really eat by mouth, now that she was saying “bye-bye” and “more”, now that she could walk up the stairs. We have overcome countless surgeries, feeding tubes, and daily therapy since she was six months old. I was not the parent who put her head in the sand when I saw a problem; I searched for an answer and for the best treatment options for my daughter.   I thought about taking FMLA so I could work with Caroline using some of the strategies I observed but I realized that we need the money I would receive from selling back my sick days.

I am angry and frustrated but mostly worried about Caroline’s future. I don’t where to point my anger anymore. Is it my employer’s fault, Cigna’s, mine, the government’s—who knows?  During this moment of crisis it is not prudent to wonder why this black hole of care exists—one that will likely bankrupt my family and many more like us. But rather, I need to focus on solutions that will allow Caroline to resume receiving much needed therapies.   

To help Caroline receive these much needed therapies donations can be made via giveForward.

Diagnosis

I wrote the following a few days after Caroline was diagnosed but was to not ready to share:

The words stung like nothing before and that is saying something as I am no stranger to tragedy or adversity.  I had been asking the question for nearly three years but now that someone was willing to answer the question-I wished I would have never asked.

Is it better to know?  Of course, it is.

Will I be able to come to terms with it? In good time.

What are the next steps? Fight, fight like I have never fought before.

Caroline is engaging, hardworking, funny, and joyful.  She also doesn't sleep often, is fed through a g-tube, has over a 40% developmental delay, and is medically involved.  And now, one of the best developmental pediatricians in Chicago feels like, "Caroline is on the Spectrum...she is not a typical presentation but she is on the Spectrum."

When I heard those words, the first thing I thought was at least we have an answer. But I didn't stay there long, I immediately drifted to do I agree with diagnosis? And have been stuck at what does this mean...for Caroline, for our family, for me??

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Today, I wrote:

Autism (moderate to severe), Mixed Expressive Language Disorder, Motor Coordination Disorder, Sensory Processing Disorder, ADHD, Failure to Thrive, Reflux, and Severe Global Developmental Delay. Everything preceding Failure to Thrive, we learned about in the last month.  At first, I wasn't sure about the Autism diagnosis but in the time since the diagnosis Caroline has picked up several obsessive behaviors, her need for sensory input is rarely met.

There is no time to process what this means.  The books tell me that I need to "grieve" for the loss of the parenting experience I imagined when I first discovered when I was pregnant; however, they also admit no responsible parent with a child who has received this diagnosis has time to do so.  Don't get me wrong, I find time to cry and places to direct my misplaced anger--sorry John and any telemarketer who calls me.

Ever since the Autism diagnosis was confirmed I have been mobilizing.  Our amazing developmental pediatrician recommended intense therapy around 40 a week. 40 hours a week! All the literature says early intervention is key to her success, it can make the difference between high functioning and not so high functioning.  I have been trying to get a straight answer out of my insurance as to what therapy is covered and how much therapy is covered for weeks. Based on the information, I have received the ideal amount of therapy would cost about $100,000 out of pocket for the first year alone. This does not count doctor appointments, prescriptions, eternal feeding supplies, medical equipment (weighted vests, etc), or transportation to all these activities.

Caroline is amazing. I want to give her the opportunity to reach her full potential and I will move the world to do so-but I also realize that resources are limited and we have to make tough decisions. I am coming to terms with the diagnosis but I am having a hard time coming to terms with the fact that we will not be able to provide her all the care and support she needs and deserves.  I spend countless hours researching programs, doctors, hospitals and just as much time reading books about kids who have had amazing outcomes trying to figure out how we get from here to there.

My last thought, everything does not  happen for a reason.