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]

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. 

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 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 know they are loved 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?

 

Vivian Knows Best

The phone rang and in a fit of frustration, Caroline clawed at my right eye.  It hurt and left scratch marks all around my eye, the marks match those on my left hand and arm. My Sweet Caroline gives me a new scar almost every day. The pain from this assault pales in comparison to the sadness and frustration; I see when I look into Caroline's eyes during these trying moments.

My employer made the decision not to include insurance coverage for autism as part of our benefit package at the start of the calendar year – in August of last year I was lead to believe it would be covered—John and I have been paying for all therapy out of pocket since January.  We just took out a loan against my 401k to pay for therapy this summer but we can only afford therapy at less than therapeutic levels.  Caroline’s minimal access to therapy shows every times she leaves a scar on my body, hurls an object at me or the floor, engages in compulsive behaviors, or the fact that it is harder to get Caroline to say Momma even with a reinforcer. Don’t get me wrong, Caroline is wonderful, the light of my life but right now being her mom is a traumatic experience.

I realize how tired I am when at the dinner table, Vivian reminds me “Mommy you need to tell Caroline, first rice then candy.”  At four, Vivian understands the first-then technique.  The other night both girls wondered into our room around 3 AM,  John was singing to Caroline trying to calm her down—I acted like I was sleeping because I did not have the energy to engage—Vivian told John “Daddy, I think you need to stop singing to Caroline—you are only exciting her.”  Vivian was right. At 3 AM John was too tired to notice that Caroline was screaming and flapping out of excitement—he was just following his instincts.  To be an effective parent to Caroline one needs to know when not follow instincts like singing an overtired toddler to sleep and when to ignore them.  Vivian, even in the middle of the night, knows enough to remind us how we parent Caroline when we have our wits about us.  I find this comforting because it means at our best we are consistent enough for Vivian to pick up on our behaviors and for her to notice the effectiveness; I find this exasperating because we are too tired to be as consistent as we should be.

Part of the exhaustion and Caroline’s mounting frustration is surely attributable to our recent cross country move from San Antonio to Cleveland.  The move had to be made and had to be made quickly and cheaply which did not allow me to plan as much as I would have liked. The move has left John and I even more physically and emotionally drained than normal.

The sadness and frustration that radiates from Caroline’s body during her bouts of frustration are tearing at my soul.  The move was difficult but it had to be done for so many reasons—in the moment we are dealing with some setbacks but in the long run I see a lot of opportunity in Cleveland for the entire Buzzard Family.  I am stronger than this moment and will get through my tedious to do list that involves fighting with the insurance company, identifying therapists, establishing medical care, applying for social programs, and finding childcare for the summer and afterschool in the fall so I can get back to the business of enjoying my family.

I Thought We Had More Time.

An amazing and thoughtful blog about how quickly our kids with special needs grow up.