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?

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?

To the Me of Ten Years Ago

Phoebe nails it!! This is such a moving piece about the evolution of being the parent of a child with special needs. I know it will be OK because it has to be but that doesn't mean it has to be easy. Thank you to everyone who understands or who tries to understand.

Rejection

Her dancing brown eyes, beautiful curls and playful smile make her irresistible to me. The way she sneaks into a room I have just left to see if she can find my phone and steal a couple of minutes of YouTube (almost) always make me laugh.  And her fun-loving spirit that allows her personality to overcome her inability to speak makes me wonder how anyone who meets Caroline could summarily dismiss her once they hear she has autism.

Now, I know a mother’s love hides a lot of imperfections and that Caroline can be a lot to handle but she is so much than a label and deserves to be treated as such.  I frequently explain that John, my husband, is the ladies biggest fan; in his eyes they are perfect. I am their biggest advocate.  This is an important distinction because as their biggest advocate not only do I make sure that the ladies have what they need to be successful in life, including room to fail but I also need to be aware of their shortcomings to make sure we are addressing them in an appropriate way.

One of the most trying experiences of my life thus far has been trying to arrange care for Caroline.  When she was about a year old and I first started looking for a daycare setting no one would accept her because of her feeding tube. So we had to hire a nanny.  When Caroline turned 2, the school Vivian attended agreed to accept Caroline but that was after I visited over 18 schools. The schools that would accept Caroline were WAY over my price range and would only accept her conditionally. The schools I could afford removed her from consideration from the word “feeding tube.”  Then when we moved to Texas and added the label of autism the rejection got even stronger…at least three centers told me that there are special schools for kids like Caroline.  Yes, yes there are special schools and most of them have waiting lists that are at least a year long.  But everything worked out in Texas because we found Kristen.  Now fast forward to the search in Cleveland Heights for care.

First, I posted adds on Sittercity and Care.com for a nanny. In the first ad I mentioned that Caroline has a developmental delay and her primary form of communication is sign language but failed to mention autism.  Two people removed their application as soon as they heard the word—without meeting Caroline.   Then we found a grad student who was studying social work and has a brother with Asperger’s—she seemed to get along with Caroline—I was ready to celebrate!  Not so fast. After one day, she said “Kacie, I don’t think this is going to work. I didn’t realize how stressful and physically demanding it would be to keep up Caroline.” Ummm okay, I thought has my heart simultaneously sunk to my stomach and burned with anger.   I asked her if she could finish the week so I could try to find a replacement. “I have IBS and the stress of caring for Caroline is causing a flare up—today will be my last day,” she responded.  Okay, I really don’t want someone spending time with Caroline who doesn’t want to but this left me in a very tough position. I interviewed 5 more potential candidates who I didn’t feel were a good fit or who ended up accepting other positions. I called the school that we want to enroll Caroline this fall to see if they would accept Caroline immediately—they would not—could not because of staffing. But at this point, rejection is rejection.

This rejection hurt more than not getting asked to the Homecoming dance my freshman year of high school and not getting that job I REALLY wanted combined.  As a mother, I am pretty sure it is always harder to deal with your kids’ rejection.  This rejection is particularly harsh because the admissions’ staff is not rejecting Caroline but rather their idea of Caroline which is predicated on the premise Caroline is nothing more than an autism stereotype or focusing on her feeding tube rather than her.  When you know one person with autism, you know one person with autism.

Autism is not only isolating for the person with the diagnosis but I am learning it can be very isolating for her family.  I don’t think Caroline minds the rejection in fact I am pretty sure she doesn’t but I mind.  But I do and I am fairly certain when Caroline is rejected I feel the pain enough for both of us.

Carrying that Feeling

[caption id="attachment_1328" align="alignleft" width="223"] Brit enjoying life a few months before she passed[/caption]

When my sister, Brit, died her school posted a poem in her memory.  I must have read hundreds of poems looking for the right one. In the end I chose EE Cummings’, “I Carry Your Heart with Me.”  The words floated off the page and into my soul; together these words communicated the love, the loss, the grief, and the need to keep Brit with me always.  Now that I am parent the poem has taken on an additional meaning.  It is my hope that when I leave this world my ladies will carry my heart with them and in doing so remember the important lessons I have taught them.

I realized this hope for my ladies to keep me with them always is part of the reason that I blog and document their lives as I do.  When I am gone and they are feeling lonely and just want to be hugged by their mom or when they are in a tough spot and are wondering “what would mom think or what would mom do” they will have a piece of me that reminds them of not only who I was but who I encouraged them to be. More than carrying the memory of me, I want the ladies to always carry the feeling of how I made them feel--which I hope is special, wonderful and loved rather than stifled, frustrated and looking for therapy.

I am not sure if is weird that think about things like this at the age of 34 when my oldest child has yet to even start kindergarten.  But after the pain of losing my sister and feeling like there are never enough pictures, never enough videos, or words written by her hand I want to make sure that I ease that pain for those who survive me.  And selfishly as I know how precious life is and that it can be taken away in the blink of the eye I want to create an environment that allows my ladies to live life to the fullest but also to create memorabilia from those experiences.  I am not big on selfies and when we go on an outing I try to capture a few pictures at the beginning or the end of an adventure so that I can focus more on enjoying the moment than capturing the moment.

It all comes down to wherever I am, wherever my ladies are I want them to feel the love I have for them (there is no love like a mother's love) and if they are having a hard day be able to float back and touch a memory that will bring a little joy to a rough day.

Do ever think about your legacy or how to ensure your children always have a piece of you?

[caption id="attachment_1330" align="aligncenter" width="640"] The sign honoring the memory of Brit and her classmate Hannah, who passed away just weeks before Brit.[/caption]