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Showing posts from 2016

Putting Panic in My Heart

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Recently I heard about a movie on Netflix called "Asperger's are Us". Though there is no longer an official diagnosis for Asperger's according to our developmental pediatrician, she let me know that Seraphina is considered "high functioning" autistic which was once also known to be Asperger's. I thought this movie would allow me to see where my daughter was headed and how her life could be "normal".

As I tuned in, kids set up with dad watching their own movie I began to feel it. I had a burning sensation in my stomach and it wasn't heartburn. As I listened to the grown men talk, I heard the "autism accent" which so many have said that Serrie has and I wanted to cry. I felt my hands twisting around each other and soon I couldn't stop the feelings I had welling within myself.

I have many friends who are amazing and have chosen to adopt children with special needs and I always said when we were pregnant we were "praying for…

2017 The Year of My Family

I am a people pleaser.

I am co-dependent.

I like everyone to be happy. Everyone that is except me. I would give up on my own happiness to make everyone else happy. I would give up my children's happiness to make others happy too but this year I am choosing a new path.

Maybe I was too immature to realize it before. Maybe I wasn't ready to be the best ME or MOM I could be but coming into 2017, I am making some changes.

I am CHOOSING to do what is best for myself and my family. That means making time for me. I will work out because I want to. I will coach what I want to coach because I love kids. I will enroll my kids in what is important and say "no" to things that don't mean so much.

I learned this year that people are very good at doing what is best for them. For their family. I have learned that some care about others and their family and feelings while some just could care less. I have seen it first hand this month and I have decided that its time I stop worryi…

Not the Christmas I Planned

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It was October and with our new family budgeting plan I was already preparing our family for Christmas. We have always had a planned giving program of one thing to wear, one thing you need, one thing you want and something to read. I began carefully finding different things for each of our five kids. I wanted it to be a special year. This year the kids have been so strong in support for their sister and the changes in our family I wanted it to be perfect.

As is life, its just not perfect. I knew that I wouldn't be getting that iPhone 7 for my oldest and the boy who wanted a Hatchimal (a week before Christmas) was going to be learning the meaning of disappointment. Still I wanted it to be a morning of magic and splendor.

As we neared Christmas, we were blessed with additional therapies for Seraphina and due to the therapies we made changes in the family. The kids stood strong as we asked them to change schools, change churches and become involved more in their community. They did i…

Change

I hate change. Its a known fact.

However, autism has taught me to change.

Be flexible it said...you have no control.

Learn to understand that some people will get it, others won't.

Put your family first it said, they need you most.

So we did. There has been a lot of change and its often not just impacted us as parents but the kids as well. The greatest gift is watching them grow from this disability. First, there is Jude. Anyone can tell you a year ago teachers were chasing him outside as he ran to be with his siblings in the big school Safety breech at its best. Then there is Felicity who has become a mini-therapist in our home. As she helps Seraphina you can get a blow by blow of how to fill up a cup with milk or how to put your pants on. I am in awe of how she just knows how to help her. Then there is Cecily, she's had to leave gymnastics and is probably most like me in hating change. She's done it. Beautifully. She has done it with some tears but with strength. I like …

When The Going Gets Tough

You HAVE to be tougher than they are. Today we had our first session with Seraphina's behaviorist from the district. After nearly 4 months in school I was able to get services through the district for in home therapy. She needed it. I needed it. In the past 4 months I have read books upon books, tried strategy after strategy AND attended my own ABA (applied behavior analysis) training. Its been a whirlwind...all while trying to maintain my marriage, raising another 4 kids, coaching (which I loved) and volunteering (when I can) oh yeah, and I attempt to have a Brownie Troop too.

Today however when the doorbell rang, I knew our life was about to change. I had heard so many good things about Miss Bonnie and here she was at my home. Seraphina excitedly answered the door and realizing it was NOT a child and it was an adult who would place demands on her she quickly ran off to find the nearest corner behind a table. Seraphina escapes work. She dislikes demands placed on her and is consi…

Choosing A Path

Since I began writing my Messy Blessy Momma blog its included stories of success and failure. It has featured moments where I probably should have kept quiet and moments where perhaps I said something that made the day better for someone else. In the past eight months however much of this blog has had a focus on our journey with Autism. I call this journey, #serriesstory. Though Seraphina is just one person in our family of 7, she is a component that has truly changed our family in the past year in ways we never expected and I will say for the most part, its only been for the better.

The choice to fight for a diagnosis was difficult. Though I had understanding of autism, I feared hearing those actual words and when I did consult medical professionals, they quelled my fears explaining her behaviors away with the fact that she is child number five. Choosing to get her help was scary. Its was paperwork for days, and that is no exaggeration. I have spent countless hours with a phone to my…

Cessy Sue

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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.

This?

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

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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

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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.

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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…

Sometimes a Loss is a Win

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With Seraphina, things have gotten turned upside down. I have to remind myself that there are four other children counting on me to help them and guide them through life. Pair this with my husbands travel schedule, kids ranging in age from 3 to 11 and just trying to keep up with life and volunteering and sometimes I lose sight of what matters. Yesterday however I was reminded that I need to stop, take a deep breath and make sure I am NOT using all my energy on Seraphina alone. Its truly a struggle for me because I so want to give her what she needs and help her develop as typically as possible.

To try and stay involved with the other kids, this year I decided I would coach field hockey and somehow also ended up coaching soccer for my Jude. He only  went 3 times and though I was annoyed that I got up at 6:30 a.m. on Saturday and he rarely accompanied me, my oldest did. She got up each week this fall and volunteered to assist me in teaching 8 four and five year olds in learning how to p…

Can I Choose to Forgive Myself

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Choosing to let go of the guilt is something I don’t come by easily. I am cradle Catholic. Practicing to this day and I come by my guilt honestly. Always have. Sadly, forgiveness is not something I am good at when it comes to myself.
When I first suspected Seraphina’s autism, I began to recount each individual occurrence of my pregnancy. I wondered what I had been exposed to and how it could have manipulated her genetics. I spent hours trying to determine if her unusual behaviors were just a sensitive, quirky child or a child with a disability that I needed to get help for? When I finally had the courage to get the help she needed when I knew what I was facing was far bigger than myself, we officially had Seraphina diagnosed. Her primary diagnosis is mild autism with a smattering of other smaller diagnoses highlighted on the paper the doctor handed me. As we drove home that day, I immediately wanted an answer. Why? Why her? Why us? What did I do? Was this karma? People always talk a…

Three Gifts I Didn't Realize Autism Would Give Me

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A week ago, I was getting ready for a follow up visit with the Developmental Pediatrician and to be honest before last April I wasn’t really all too sure what a Developmental Pediatrician did or was but I was certain my family of seven didn’t need one. That was until I was ready to get real and acknowledge that my youngest daughter was in fact on the autism spectrum.
Seraphina was born without much notice on a blazing hot September evening. She flew into the world letting us know life would never be the same. With four children at home and no clue as to who this being was that we were brining into the world, I was utterly shocked the next day as I slid her sweet newborn body into a pink outfit that let us know “I’m the little sister”.
Our sweet Seraphina, which takes its name from the strongest of angels would truly begin to show us the strength we needed to lead her in life and the strength she had to show us the life that was planned for her. As an infant, Seraphina was perfect. T…

Don't Make Plans

As I drove home from the doctor's office with sweet Serrie in the back I blared my Dave Matthews CD and thought of years ago when life seemed hard but truly wasn't. Before I had kids I knew how to parent. I also knew what every child needed. I was the child whisperer. Then I had my own kids and they didn't get the memo.

Since Seraphina's diagnosis we have been working hard. There have been up to 9 therapies a week at our most intense point and since she's been in school she's out of the house at least 14 hours a week receiving services for speech, OT and social interaction. I have seen some progression and just today my post on Facebook talked about how I hoped that the doctor would witness such growth.

Today we had our follow up at the developmental pediatrician. I love her. I love her office. I love her staff. I love the nurse. Seraphina has other thoughts. Seraphina refuses the scale. So I got weighed today. Yeah. Not. Seraphina refuses to get measured. They…

Dear Clare

Dear Clare,

Your namesake, she's screaming. She can't seem to control her emotions and she's out of control.

 I named her for you.

When I found out I was pregnant, Seraphina seemed perfect. An angel, like you.

I thought of how my oldest and how she related to you and how when you spoke with us your smile pushed deep into our soul and gave us a sense of peace.

This fifth child, this child who wasn't planned must be a gift. From you. To embrace life. To live life. To accept life. Completely.

This baby, this gift, this blessing, she's been different than I imagined.

I guess that is life.

I am certain you never expected to be dealt the cards you were and to have cancer and battle it when you were just a child.

LLLC.

Live Life Like Clare.

A child who lived with ferocity. A child who loved with her whole being. Can I live life like you? Can I be as positive? As ferocious? As willing to go as far as I can as you did? For my child? For your namesake?

I am certain Clare you…

Rollercoaster

I have NEVER been a fan of being out of control. Its something that must be ingrained within me. Its funny how that changes when you are handed a deck of cards you never expected and you are to manage them with as much strength as you can.

Recently I have felt out of control. I bundle my child up, brush her hair and send her on a bus. She takes it across town to school. There are LOVING individuals there. I am sure of it but while she is gone I am expected to have "me" time. When she is there I try. I try to work out but as I jump up and down trying to get fit, I wonder if they are meeting her needs. I wonder if she has speech. I wonder if she has OT. I wonder if she's making progress and I fall into this hole wishing I could control all that is her life. The way I have for three years.

I was gifted this book. I began reading it and the first chapter resonated deeply within me. A mom questioning to doctors, knowing that her child was different and begging for answers. A …

If I Could Know

Last week I began to get frustrated when I couldn't begin to understand what Seraphina was doing at school. It had been made clear in our individualized education plan that daily communication was necessary but I did not spell out WHAT I wanted to know and hear. Now I understand how important spelling it out is.

Thursday I sent a document that had some of the information I wanted communicated to me but did not include a comprehensive listing. I thought this might make the conversation at home easier. Though it had some information, I learned today its not acceptable and was given another document with some stars near the pictures of what Seraphina's day consisted of.

Never did I understand how much I would want to hear my child talk. Never did I understand what parents of non-verbal children went through and though I ache thinking about the fact I don't know what she is thinking, I am grateful. I am grateful for this opportunity to learn.

Today I sat and dried my hair afte…