Saturday, May 11, 2019

She's More Than Money to Me

This week has shown me a lot about people, about beliefs and about the reason people choose the path of what they hope to do with their lives, it also shows me how our system is broken, how money drives too many and how as a parent with this challenge standing, staring me straight in the face I realize how important it is to keep fighting even when I couldn't sleep because I was sick, all night long.

On Monday, I got a call from our BCBA, It was one that I didn't understand the impact of until later this week. When our BCBA is in our home, I listen as laughter fills the house while she works with Seraphina. I smile as Serrie plays chase manding for attention and the want for attention, something we didn't know if we would ever see is precious. I knew it was only time and I was waiting to see the incredible growth and guidance that this woman was going to give to my daughter and my family. We have started to see change in just five short months and I was certain in two or three years, that my child may in fact be a completely different child than the child she is today. Then, that call. The one that said this June she would be leaving, taking a promotion to move to Texas. While tears welled up and flowed from my eyes, I thought of the number of children she could help and as a clinical director what could she do for others that she has already started for us? Then it sunk in. I would need to find someone new, someone to accept our family. Someone to accept her. That wasn't going to be as easy.

I worked quickly giving call to a BCBA that had a relationship with our sweet Serrie. Dead end. Endless calls. Would someone take us? Oversee her? Choose to help her?

So far, the answer no.

Why?

Insurance.

For those who have followed this journey, insurance has been a struggle, from day one. Denials. Limitations. Lack of coverage. It was all in my repertoire. I spent hours, researching, calling, crying, and hoping something would change. I traveled all over New Jersey asking Senators, Congressmen and Representatives to listen to the fact my child and others like her were not getting the care they deserved even though they lived in New Jersey where children, like my own are supposed to be safe, protected and helped. In January that changed. Finally we had coverage. Here we are.

Recently I was denied by PerformCare once again. Instead of fighting a fifth time, I let it go because I didn't want to be greedy. I didn't want to take money from another child, services from someone else who didn't have any services available to them.

Now this.

I am back at square one. And its pretty obvious that there are two types of people. There are those that have chosen this path to help children, children with extra needs, children with autism, children that need them and there are others who have chosen this path strictly for money. Last night our last hope insisted that the least she would accept is $85.00, an hour. Our insurance pays $48.00. That last hope denied my child based on money. I wonder exactly who these people think they are choosing money over helping a child?

I am shocked.

I am saddened.

I know many teachers, they choose the profession to help children. Certainly, they need a living wage but they would never say "no" because nearly $50.00 an hour wasn't enough.

Last night, I was up. Physically ill. Vomiting out the pain that I feel fearing I cannot give my child what she needs, fearing that she won't get what she deserves because I haven't been able to provide it and I wonder, is she not more than money to others? Its apparent she was to our first BCBA, now if only I could find someone that would accept that pay once again.


Thursday, April 25, 2019

I Want To Help You Understand

Dear Sweet Child,

Today, I saw you at the park, as my daughter played in the sand you casually walked over. You needed a friend. I didn't see your parent or caregiver but you really wanted to play. You squatted down beside my daughter and the questions began.

"What is your name?"

No response.

"I said, what is your name?"

Seraphina (in a slight whisper)

I knew you didn't hear but you see sweet child, I rarely get to see her interact so I wanted to understand what the world looked like from a child's point of view.

"Hey, are you okay?"

No response.

"What is wrong with you?"

I glanced in the direction of my friend. I didn't know what to say. I wanted to tell you her name was Seraphina, she's 5, she has autism and a number of other disabilities and she may want to play, she may want to engage but she may not know how. Yet I stood. Quiet. You see sweet child, once I told a child and their mom admonished me, she asked me not to tell her child such personal things. Today, I still hurt from that conversation. Autism is a part of Seraphina. Its what makes her special. She sees things differently. Brilliantly. She's aware. Always. She's listening. Intently. More than we know. She may not always tell us what she hears or what she is thinking but its there. It comes out, in bits and pieces.

As the beauty of the sun beat down on our faces, you asked again.

"What is your name?"

I could see you were getting fed up, and then you asked something else.

"Are you a baby? Why don't you talk?"

I was hurt. Not by you. Your innocence was beautiful. Your desire to connect was incredible. I was hurt by my own reaction. I longed for her to answer, to see that piece of her I know come out from her being and be shared with you but she chose silence. I respect that. For her, its safe.

I decided this was stressing you both out and I moved her to the swing.

Later she scurried with a friend, a friend who knows her, always has, to the sand again.

There you found us. Again, no parent in sight.

You squatted next to me. You began to ask me questions.

"Do you like Spiderman?"

"Sure, he's fine."

"Do you like playing in the sand box?"

"Not really but I like to see my daughter happy."

You remembered and once again, began the dialogue with my daughter. Her silence deafening.

This happened at least once more in the hour we were there and I wondered, how I could help you understand.

Should I find your parent? Did you want to know? You seemed inquisitive and like your sweet little mind was insatiable for information and I thought you would like to know, about Seraphina, how her mind is just a little different but how she's special, just like you.

Instead, I sat, quiet. I watched her play.

My best friend came over. She made me feel safe. I needed her there. The warmth of my tears quickly faded when she sat by my side. She's walked this journey with me and few know me like she does. I felt like I didn't have to continue to guess how to handle the situation with you when she was by my side. I could be otherwise engaged and honestly, ignore you. Eventually, you ran off.

Sweet child, I want to teach you. I want to teach all the children who want to learn. Our world is special. Its special because each person is in it and this world is unique because each of us is unique.

I'm sorry if I let you down, if I kept you from learning today, because perhaps you could have been a child advocate, supporting, loving and accepting others, different from yourself but you see sweet child, I'm just not sure how to help you understand.


Tuesday, April 9, 2019

An Open Letter to the Medical Professionals Who Get It

Dear Medical Professionals,

I remember long ago when I brought my first baby in with severe colic. I was blessed with a physician at Michigan State who got it. I had his email and phone number and while I struggled to manage graduate student life with a colicky baby, you were there. There was a nurse who brought me her own copy of T.Berry Brazelton's "How to Calm Your Fussy Baby" and yet another who told us about "The Happiest Baby on the Block".

Fast forward, I am well seasoned, kind of like a Thanksgiving Turkey and parenting a child with colic is a distant memory but today, I face new challenges I never understood, through all my years of parenting before autism.

Imagine your child being sick. Not knowing what is wrong. Noting a temperature and mood changes, perhaps other symptoms, vomiting, excessive coughing, difficulty breathing. Wait? You don't need to imagine, that is much the life of a young parent with an infant or toddler.

Now imagine that same scenario with a child, twice or three times that size, perhaps even full grown, unable to communicate exactly how they feel. Taking a temperature is a joke because you may get slapped or scratched, getting medication into a child may require a two parent suppository. This isn't what you imagined life would be and then, you see there are the medical professionals, who get it, or want to get it or are eager to learn exactly the life you live.

Today, I had that experience. First and foremost you must understand, years ago, when I knew something was different I sought medical care. The first physician dismissed me saying she was my fifth. He noted he'd been in practice longer than I was alive and told me I just didn't have time for me. What a blow. As a mother, I had spent countless hours with her tiny fingers intertwined in my hard nursing into the wee hours and to hear those words, my heart broke. I knew this child almost as much as her Creator.

Then, there was the Nurse Practitioner who listened. The one who took 30 minutes to review videos, listen to my own stories and poll my children about their experiences with their sisters and as she drew in a breath, she recognized my intuition and helped me to seek appropriate diagnostic testing. From that moment on, she has been my gold standard. In fact, not many could come near her intuition with my own child nor was I willing to see anyone else with this precious gift who now had more diagnosis next to her name than I could have imagined when I pushed her into this world. Yet, time, and trust lead way to the nurse who sat with me and shushed her as I tried to get her to use the bathroom when we suspected potential diabetes or the other Physician who told me he too understood and while his child was different from my own, to make sure I had support and that I kept pushing. He reminded me I was a good mom.

Then there was the nurse, last night, Kim, who listened to me, and took time to learn more about my "verbal" child's inability to be functionally verbal conveying exactly what was bothering her but giving me that chance to be mom and steer clear of traumatic experiences in the emergency room and then today.

I woke, my daughter, still lethargic but seeming just a little better from yesterday, was going in. She would see a physician whom I have liked but never knew personally, well. We walked in, to a nurse I know, and as she tried her best to get her temp and assess her, she knew to be mindful of my daughter's words.

Within a moment, the physician came in, seeing my daughter's fear, she allowed her to stay cradled in my arms, like the little fighter she is, she lashed about breaking an otoscope, launching additional medical tools across the room and instead of frustration, in her eyes, I saw love. I saw the reason people choose to become medical professionals. As she cleaned up and gave a chuckle, she listened to my daughter, kindly giving her sips of water and providing me with a bed pan as she was about to get sick. She knew, from my words, from my daughters fighting that I wasn't about to give up and I feared taking her in. She knew the trauma from a visit to the emergency room could potentially be detrimental to this child's well being and while treating her honored her oath of "do no harm".

She allowed us to go home, armed with a juice box, medicated with Zofran and holding an ice pop. As the sun shined into my windshield I prayed. I asked for His hand in her healing. I knew this illness was too big for me to do alone. All afternoon, I sat. I begged her for sips. I took her on a walk promising a block for a sip, and made it 3 miles. Then, a few hours later, she called. She wanted to know how she was and she insisted that I keep trying to get her to drink more.

We are now 3 full days into this virus that is ravaging my child. My mom called, feeling badly for me and honestly, part of me feels badly but I realize this is a blip, unlike that of a parent who has a child facing a real medical crisis. Still, tonight as I sit close, listening to her breathe, I cannot forget the medical professionals who choose this path, knowing it will be messy and sometimes painful, that it will cause them to pause and thank God for the healthy children they see. I am grateful today, for my daughter's medical professionals and hopeful that like the team I have found, other parents with kiddos on the spectrum can find the same love, compassion and understanding that their child deserves.

Thank you again for choosing to say yes to our children, who can be more of a challenge than your typical kid.

Sincerely,

The Messy Blessy Momma

Monday, April 8, 2019

One Thing I TRULY HATE About Autism

There are so many things that I have learned from this journey on our autism walk. There are so many blessings I try to recognize and count even when its hard to find joy in the moment. Autism is so much more than a diagnosis. Its a different way to look at things, its a mind that works in its own way on its own time. I was a parents for nearly 8 years before our youngest came along and in that time, I thought I understood. Now I can say perhaps I will never completely understand life but I am learning more living life with my youngest child. She's not only teaching me but my entire family and those whose lives she touches.

That all being said sometimes autism is hard. Sometimes its awful. Sometimes I hate certain aspects of it and this weekend reminded me of one.Sickness.

Saturday night, as my little love finished a busy day playing outside, I watched as our bathtub turned black and the joy she found digging turned my white tub into a mud puddle. While she played, I watched and she to shiver. Realizing she had been in the sun most of the day, I figured she was chilled and wanted warm pajamas to make her night better.

While she rested in my arms, I had a hunch. Perhaps she was getting sick.

"Do you feel okay?" I asked.
"Yes." She answered.

And so I finished my night and tucked her in. That night however, I couldn't sleep. I woke. I wondered. Was she sick? Did she understand what feeling okay way? I just knew. Something wasn't right. So quietly I slipped into her bed, cradled her and woke to the beautiful sunrise and felt the warmth emanating from its glory. Except, it wasn't the sun. It was her.

I knew it. I had trusted my mom instinct and realized that she doesn't yet have the ability to know when she is sick.

So, yesterday at day break began my vigilant watch to identify what she needed and what she had. A fever. That was all I could surmise but getting meds into her little body is like wrangling a full sized alligator. So I considered other options. Water. Sips. I didn't want her sick. Juice. Sugar that may cause her to want to eat. Popsicle treats that would cool her temps and give her the fluid she needed to fight. All day when I tried to move, she yelped begging me to return and so I diligently sat in bed, with her, unable to move and when I did to face her stink eye when I returned.

At my wits end, yesterday I shared on an autism page that I HATE when my child who has autism is sick. She can't identify what it is but I know she needs my help. She doesn't understand why she feels sick and moans in her sleep and while awake begging "mommy help me". I am helpless.

Today was no different, in fact even worse.  Today she began to vomit and my heart was in my throat as I realized she didn't even know to flip over and began to choke on her own vomit. Its something every new mom fears but honestly, I thought I was past that stage. I didn't even think to be worried about her choking on her own sick.

There is so much I take from Autism and use to grow myself and my family. There is so much that I cherish because its helping our family to be gentler, kinder and softer but still there are parts I just can't stand. They just aren't fair. In fact, I hate them.

Sickness is one of them.

Sunday, April 7, 2019

The Road to A Championship

Yesterday was one of those moments when you have to change the game plan. Perhaps the plan was always in place but learning to accept that the road to where you want to be isn't the direction you expected to go. It was fitting as I snuggled my sweet babe and watched MSU succumb to a better playing Texas Tech. The loss doesn't  make them lesser players, a bad team or a loser. Each player still has their talent. Tom Izzo is still an amazing leader these young men with a Big Ten Championship under their belt have still found success even when the end didn't look the way they had once imagined.

As a parent of a child with a disability, I have continually had to revamp and revisit my own expectations and celebrate differences and the path that we are on allowing me to grow just as much as that beauty God placed in my care. You see, since she was less than two, I have been working to create the typical childhood experience for a child who is just not typical. Yesterday, I finally got it.

My road to acceptance of a child with a disability has been fraught with fear, sadness, hope, excitement and continues to move forward on this journey with incredible feelings that creep up at every turn and juncture. In fact its often obvious that I am still journeying to acceptance, even now.

Yesterday was beautiful. Although I began my morning in a tizzy trying to send my husband out the door with four of our children while I rushed around getting ready to coach, the day was going to be yet another opportunity to grow as a mother and person. One of my passions in life is working with children. It always has been. I have enjoyed teaching them, working with them, helping them to reach their greatest potential so its no wonder I struggle when I want so much for children who are not my own and can't seem to help the one that is born to me. I always envisioned myself being able to find a way to give Seraphina a "normal" childhood. Why was I trying to hard for something that she didn't want?

As the sun crept out from behind heavy clouds, I stood, whistle in hand working with children my daughter's age. I watched as they carried lacrosse sticks, learning how to cradle, scoop and even play a little scrimmage but my heart was with my daughter a few miles away on another field, with my closest friend trying her best to assimilate into a typical childhood activity. Soccer. I wished she could play on my team but I knew she wasn't ready. Perhaps however she could play soccer, at least somewhat.

As practice ended, I shed a layer, opened the sun roof and drove over the mountain with joy in my heart watching children grow each week on their journey to play lacrosse. As I drove into the field, it was apparent I was driving into the world that is part of a special parents life. One that is hard to explain. That joy faded and my heart sunk as I parked next to my husband, scanned the field, witnessed my older girls playing with children my daughters age and yet, my daughter was not in sight. My husband, head back, resting in the car looked defeated, deflated. It didn't work. There in the backseat was my little one, a bit muddy and disheveled, shoes and socks strewn about, resting. It was too much. My dear friend told me she tried. She had fun. She didn't like wet shoes (heck neither do I). She said she could come back, try again but when I talked to my husband, that look on his face told me, she wasn't ready.

Once again, I realized we were at a new phase of acceptance. We were adding another layer of understanding and a step on the ladder to success. You see, I realized in MY trying to give my daughter exactly what I thought she needed, I was only hurting myself and perhaps unintentionally, her. I realized that dance class I tried, not ready. Gymnastics? Not ready. Now soccer, not ready. I want this, but am I just wanting this for her childhood or my vision of what childhood should be.

This conundrum isn't just for parents of kids with extra needs, I see it in all parents. Parents whose children I coach, parents who wish their children were more successful at academics or sports. Parents that wish their children had more drive to try the arts or dance. Reality is, its our vision and although support is important, perhaps allowing our children to lead is even more important.

Yesterday afternoon, I had that typical parent experience where I watched these two beasts (one my own) run their hearts out on the field and work together to have great success on the field. I watched as they lead us in their own journey which I respected and realized that I had to do the same for my sweet Serrie, extra needs or not.

So as we drove home with the warmth of the early spring air, I decided to accept what is our road to a championship. It may not be a straight path. It may end before I am ready but I am certain there may be more curves in it that I didn't plan for but these curves may allow me to slow down, look at the beauty of the world and accept the differences that teach me to be more understanding and aware of the beauty of the world around us.

One day I know that our version of the Championship will look beautiful. It may not have all the bells and whistles that I will witness with other children but the beauty will be present and the joy will be just as much, perhaps even more.

She may never play sports, take dance class or even participate in typical activities, but we will celebrate the small steps, the joy she finds and the opportunity to grow. We will get dirty and messy and find opportunities to share the beauty this disability has given us to look at life through another lens. Once again, autism is teaching me that the blessing of raising a child on the spectrum is nothing I ever planned or imagined but still the greatest gift God has allowed me to receive.


Friday, April 5, 2019

Have You Heard?

One of the things about getting a diagnosis, like autism is so many people want to help. Its a great feeling and so often people say what they think you want to hear. They also try to find whatever they can to help you.

Last night as we struggled with constant screaming and whining. The ABA Session wasn't really pretty and compliance was at an all time low for our new therapist. In fact, last night when the her boss texted me, I was certain she was quitting. Not true. Though burnout for therapists is high, ours is still digging in and digging deep to help us modify behaviors so that learning is possible.

That being said, my son wished we could cure autism. Truth is we can't. In fact, at times I think there isn't anything to be cured. As I tell all children, you are created to be exactly who you were meant to be. That includes all our parts, exterior, interior, emotional and social. Autism is how our daughter was meant to be created. She teaches through her daily interactions, through her behaviors, through her learning style. We can all teach. We can all learn. We can all be kind.

I am grateful for all those willing to support me and those who are willing to give to myself and my children. Wholly. In the time since her diagnosis, I have found so many things people tout as curing or fixing but like I said, for me, its not about fixing. It about helping my child to be the most comfortable she can be in her own skin. Its about learning to accept who she is but never saying "no" to something that may give her comfort or help her find success.

And so, instead of telling you everything that didn't work, everything that went wrong, I will tell you what I am doing now and yes, how its going right. Usually.

Children with autism, they are children first. They have typical illnesses and diseases. So on top of each medical diagnosis she has that accompany her disability, she also has everything else my other children get. Colds. Flus. Stomach Bugs and strep throat. To try to keep her as healthy as possible and her mood as on target, we use the following protocol each day.

With my other kids, its a quick vitamin when I remember but for Seraphina, the daily plan is much more complex.

First, Fiji water. Yes, she has it in her cup at all times. This has helped her with bowel issues. For months I was told to use Miralax. Hating the medicine and what it could do to her in the future so we tried this water. It works. For her.

Second, the Nemechek Protocol. It works for us. Again, it may not work for you but it includes Inulin, Nordic Naturals Omega Fish and California Brand Olive Oil. I mix the oil into her breakfast and the Inulin I mix in the water or give her a gummy.

Third, Claritin. Yup. She's got allergies.

Fourth, Bioray Happy. I have used this twice and its new on board again now but its supposed to help her eliminate toxins.

Fifth, essential oils. I use the doTerra Kids Rollers. I use a number of them on the bottoms of her feet and also along her spine. I also use InTune, which is another doTerra product.

Finally, we have started using CBD oil. It has been helpful and she will ask for all these supplements to "make her better". I think although its a lot it works for her.

I won't say that this will heal our daughter, again, she teaches more as she was created than a child without her diagnosis. I will tell you that you may see a positive change in your child if you choose to find supplements that meet your family's needs. I would recommend speaking with your doctor or nurse practitioner to make sure you are doing what is best for you. This is what currently works for us but it doesn't mean I won't manipulate our family protocol to benefit our child.

Thursday, April 4, 2019

Politically Correct

Today I had the opportunity to speak with a radio personality on a talk show that will air later this week. While we spoke and covered a number of autism topics, one rang out and made me stop and think. I continued to think. Through the day. I realized it was important instead of just thinking, that I share my personal perspective with my followers so those who have questions don't fear asking.

The question the host posed surrounded the correct terminology for a child with autism. She kindly asked if I preferred child with autism or autistic child. Lately that topic has popped up on Autism pages and personal pages alike. As I shared with the host, sometimes I feel being politically correct stops us from asking questions and knowledge is power.

Today, children are being diagnosed with autism at an alarming rate. I am rocked to my core reading 1:34 children in the state of New Jersey alone are being diagnosed on the spectrum. While that spectrum is vast, still, autism impacts facets of the life of the individual that change them. Forever. It impacts those who love them, live with them, raise them and share a childhood with them. Forever.

My personal opinion is that my daughter has autism. Certainly she has more to her than just the disability but she also is impacted daily. In fact daily is a broad term. We wake listening, waiting, trying to assess what our day will be based on how she wakes in her bed and even then, the early moments may not be a clear picture of the entire day. Autism impacts everything from her physical development to her emotional growth. It stops us all in our tracks when she is overwhelmed by situations in her environment and has impacted her ability to learn, live and share life with her siblings as we once knew it.

I believe that we have been given this journey to share. Our journey. Its nothing like the journey of any other child or adult on the spectrum, but perhaps a window into what a child may experience in one part of their life.

So for me, if you have questions, I'll throw being politically correct out the window so that I can share the journey we are walking. I'll listen to you say child with autism or autistic child and know that most often we are looking to answer these questions so that we have knowledge and in learning we have less to fear and in fearing less we can be a better version or our self.

I can't speak for anyone outside our family but for me, forget PC, ask. Anytime. Anywhere. Any way. We want you to learn about our struggles with hopes that it will help others to be more understanding, compassionate and sympathetic.


She's More Than Money to Me

This week has shown me a lot about people, about beliefs and about the reason people choose the path of what they hope to do with their li...