Showing posts from November, 2016

Cessy Sue

For those who don't know our Cessy Sue, things come easy for her. She is sometimes known as the North's Nuttiest Sister trying to make people laugh at the most appropriate AND inappropriate times. She's also the one that likes to be catered to most (I learned never use the word lazy) and enjoys having special treats and outings head her way--and its obvious when she feels she's been wronged or not gotten enough of the attention she is craving. She's stubborn and strong willed and all around a unique creature that I enjoy raising. Every once in a while though I get to see this brilliance that resides in her heart. Its not often. She struggles saying "I love you" most and like me has a heart but will try to pretend she doesn't care.

As we set into the Advent Season, she has been busily running around the house. I wasn't really sure exactly what she was doing. Then this morning I woke up to shoe boxes under the tree. I was annoyed at first thinking T…

The Pony Ride That Didn't Happen

Today I wanted special treatment. We had spent the day getting ready for the week all to end the day with Holiday Lights at the Zoo. We have done this before but this year was special, this year we had all five kids. I really want to make this year magic as we have one on the cusp of not believing and another who is just learning to relish in the beauty of the twinkling lights and anticipation of Santa. This year I will not sit back and allow my house or my chores to get in the way of making memories.

Without knowing where they were going, the kids got ready and headed into the car. As they did, I prepped travel mugs of hot cocoa and marshmallows, a rare treat in this house. I gathered pajamas so that the little 3 would be ready for bed long before their heads hit the pillow and asked one of the girls to round up hats, gloves and scarves for all.

An hour after setting off we pulled into the parking lot and the kids remembered their experiences there in years past and immediately they …

When You Don't Want To Do This

After a snippy weekend full of mom losing her cool and wondering how to maintain it when the kids were racing through the house, tearing out toys and obsessing about Christmas, I melted.

First, I texted my two closest friends. They both were busy today and I really didn't want to impact their day but I was done.

I didn't want to do this anymore.


Oh yeah, this autism parenting. Didn't you know I was really good at supporting my friends with special needs kids. I felt for them. I understood. Really? I didn't.

Today after the kindest of kind older ladies offered my screaming toddler a sweet and reminded me God counted my being at church 3x I just felt I couldn't do it.

Why God?

Why her?

Why me?

As I watched holding her little body in my arms, her legs tensed to the point that it seemed she couldn't control. Tears streamed down her face and she sobbed. No, she screamed until her body went limp. When it did, I relaxed and she began again.

I ached. My heart ach…

Its About Education

If you haven't yet seen the article or video about the teacher in West Virginia removing a microphone from a child who has autism wanting to speak, you can take a look here. I have seen so many posts on Facebook linking to the video and the backlash has been obvious among families of children with special needs and other compassionate families alike.

I have been rather quiet as truly, I am not surprised. In this nation where we are so afraid of being politically correct, saying the right thing or acting fairly to people in every race, religion and socio-economic status, I now have a heightened awareness as to why children such as our Seraphina are treated differently. Its education.

Years ago, people treated others with different values, differently. They treated others of another race, differently and those who struggled socially were treated differently. Our society, sometimes with just one strong voice worked to create a society that is more accepting and understanding. NO, I a…

Making Lemonade out of Lemons

Last week I spent hours crying and my eyes are still paying for the salty tears that dried them out. However, me being me, only allows myself so much time to wallow in self pity before I decide to go full out and get myself into a position where I feel good again.

Being denied services for your child who has a medical diagnosis is nothing short of frustrating. I feel angry and overwhelmed when I think of the responses some of the Aetna Customer Care representatives gave me and when I recall the response of the Human Resources Associate I nearly want to jump through the phone, shake her and say "no, it all won't be better in a couple years".

Accepting a diagnosis of any kind takes time to process and I have been told I processed quickly but I guess that may be my inability to be patient. Finally found a place where it actually helps instead of hindering my life.

On Monday when I finally was told there was nothing more I could do this year to better my insurance benefits o…

Insurance Woes

Many of you know my husband works for a VERY large, VERY well known company. We are a self-funded insurance and because of that they do not have to follow the same laws that are documented in the affordable care act. None of my daughter's medical visits are covered nor does she get any therapy paid for. I decided to write a letter to appeal her medical care denial.

I have spent HOURS on the phone in the last few days crying to customer service associates to find myself at a dead end. I find myself frustrated and annoyed. We did it "all right". We went to school. We got married. We were open to life. We have a child with a disability and we cannot get her the help she needs to find success in the future. I have learned being a special needs mom means being a bad ass and being HER voice. I won't rest until I feel I have done my best.

To Whom It May Concern: In April 2016, I began the process of advocating for my daughter Seraphina. Since she was 18 months old, I knew s…

Everything Happens for a Reason

One dark evening, last March families filed into a lounge at the gym where we were members. Though it was freezing outside, families gathered with excitement and anticipation as the director of the dance and gymnastics program was going to share what we would soon see as opportunity to advance and grow the USAG program at HealthQuest. As we listened intently I became more excited about the opportunity for Cecily and her teammates and envisioned this amazing journey that she and her teammates would share moving forward through the USAG Program here in New Jersey. I couldn't believe what I was hearing and what the gym could bring her. A year prior we had joined HealthQuest as it was the only option to bring our family health and wellness and give each of our children the opportunity to experience all the sports that they dreamed for years but those we couldn't seem to manage. With a larger family there was a delicate balance between dance, gymnastics, martial arts, swimming, and…

In A Perfect World

In a perfect world, I could afford all the therapies that Seraphina needs. She would take water therapy, music therapy, hippotherapy, have an OT come to the house, work with a BCBA on ABA therapy and have endless hours of speech therapy. In this "perfect" world I would still have time for my other 4 kids, for my husband, for my house and somewhere in there for me to be who I am supposed to be in this world.

This world however is not perfect. We have no therapy outside school and that BCBA hasn't even finished her analysis of Seraphina so ABA therapy in or out of school is non-existent. Each day that slips by I wonder what I am missing and how I could prepare her for the world she will one day step into. While fighting on the phone with insurance trying to make appointments with the school and keep up with the other kids, I am up at night wondering what will happen one day when I am gone? I wonder how this world will work with assimilating my child into it.

This weekend I…

There is an Election Today?

Today once again I was truly drawn to my community. In the early crisp hours of the morning I dropped my oldest four at the bus and decided to go vote. I didn't want to get caught up in the goings and comings of the day and forget because I have a theory if you don't vote, you don't have the right to complain. So I voted.

I headed into the parking lot of what is a usually empty voting location to be met with people driving in and out to make their voices heard. The parking lots were full and parking was only available on the grass. I had never seen it like this and though I questioned myself for bringing sweet Serrie with me, I decided to make a go of it. I had the right to vote too.

As we got just inside the door she began to smile and people made light of her being there. "She's not old enough to vote is she?" I giggled as I noted she's probably a better candidate than some. Then we watched as she found candles shaped as teddy bears and methodically cou…

An Open Letter to Those Who Choose Not to Understand

I forgive you. I forgive you for choosing to judge before understanding. I forgive you for choosing to label me as a poor parent before knowing the journey I face and I choose to forgive you for neglecting to be kind when kindness matters most. Why? Because I was you. Before I walked in the shoes I currently wear, I was judgmental, too. I am so grateful to have my daughter who is teaching me each day to celebrate the days instead of focusing on what isn't right or what child isn't perfect.

Nearly two years ago I first noticed my daughter's behavior at church. She was just over one and so well behaved. She was better behaved than other kids her age. With pride I stood holding her close and watched as she stared up at the ceiling and watched the fan go round and round for the entire hour. Every week. Without fail. It was my first sign that my daughter had autism. Though I worried and began to question her behaviors, I wasn't ready to have her assessed until nearly a year…

Happy? Halloween.

Monday was a whirlwind of a day and the end of the night left me deflated and sad. Sure, Halloween is exciting and fun.  Children running around clad in a litany of costumes and families laughing and sharing memories but this Halloween was different for me.
First, my husband was out of town. Why companies send individuals off when its a family holiday that typically means a lot to kids is beyond me. When he told me, I did stomp my feet and whine (okay no stomping but whining did ensue), I knew he had to go. Its his job. The one that pays our bills.

Then, I felt guilt. Before the day ever began I was guilty of falling short. I wouldn't make it to my son's parade. Why? My youngest had to get to the bus. Even though I wanted to make it work, it was impossible. Schools that are eleven miles apart seem to be the bane of my existence lately.

Perhaps that was all part of  God's plan. This year I have watched as friends posted videos of their children. They are beautiful. Each and…