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.


Monday, April 1, 2019

Spectrum and Sharing

Have you ever looked through a prism and noticed the colors that shine through? The brilliance of the rainbow that radiates warmth from the sunlight in the background. Perhaps you have never looked closely at those colors, inspecting each of them and changing your own perspective, closing one eye, opening both eyes or squinting to change the shape or size of the color. The magnitude of brilliance is seen individually even when two people stare at the same vision of light. To me, that rainbow, that opportunity to look at something beautiful and unique is autism. As no two people are alike, no two journey's are alike and making autism work in my family will look different than autism in someone else's family. I have grown to understand this as we have grown in our journey.

This month, as we enter Autism Awareness Month, I ask that people be open, understanding and aware that your journey with disabilities or different needs is unique. I can learn from others just as they too can learn from me and learning to accept that there will be times to listen, understand and grow will allow us to move the momentum forward and change awareness into acceptance.

Yesterday I encountered a lovely family while out. The children, interested and intrigued by my daughter had questions as to why she was in a stroller and when she didn't respond quizzically asked about her. I took pause in not knowing how to respond. Coming home, I jumped on Facebook and asked my friends as to how I should have handled it. For me, its difficult. Sadly, some parents don't want their children to know that children have autism. For others, they think its something their child can get (yes, this has actually been a comment) and yet for others, they are open, want to share and teach their children through encountering others with different strengths and weaknesses. I believe that knowledge is power and frequently share as much as I can. For me, that is our journey but I also respect other families choose to keep their own journey more private. I believe it takes all kinds. I wasn't sure exactly what to tell these beautiful children so I simply said "she thinks a little differently". I mouthed to mom that she had autism and hoped that perhaps she would share more on the journey with her children privately. A number of friends thought my answer was okay, others had some great suggestions and I learned so much from their responses as well. I am grateful to know so many people willing to teach and learn with respect and kindness and I truly believe 15 years from now, this month will be considered Autism Acceptance Month, not just awareness.

For Seraphina, life is different. She sees things differently and since choosing to look through a lens along side her, I too see the gifts in things I never encountered before. Seraphina is considered "high functioning" but even that diagnosis looks different from that of another child with the same diagnosis. Although Seraphina is thought to be of typical intelligence, autism impacts her social and emotional communication and her ability to function in life. She is not deemed "disabled" enough to receive services through PerformCare but she is deemed "disabled" enough to receive a handicap sticker. She is beautiful and looks similar to peers her age and for her, physical capabilities abound. She's never qualified for physical therapy and her ability to throw and catch is on target for children her age. She has strengths like independent play, imagination and the ability to use echolalia to communicate her feelings or sometimes even answer questions. Then there is functional communication. For me, this has always been a hot button and so after some discussion on my post, I want to clarify communication for Seraphina. One comment that stood out was from family and its so hard for me to tell everyone in my family where we are on this journey. Living so far away from everyone, they see pictures and hear stories but to actually explain it all individually is exhausting. Its actually part of the reason I blog. While my daughter has the ability to speak, knowing how she feels is a challenge and something we work on daily. Its also something that we strive to understand.

Seraphina is considered verbal and has recently lost her "apraxia" diagnosis. She knows general words and topics but cannot "tact" or appropriately identify more specific items. Just the other day she couldn't begin to ask for blackberries because she identified them as raspberries. Unaware that the fruits, though similar had different names. A few weeks ago with a new therapist in the house, she wanted milk. Instead of asking for it, she begged for "reefermilk" a combination of knowing we keep milk in the refrigerator and the need for a drink. Seraphina cannot have a conversation with others and even answering simple questions becomes a challenge that we consider a demand for her. Prior to having her in my life, these concepts were all foreign to me.

Yesterday, my two oldest girls giggled with elation when out of the blue Seraphina asked a question of her siblings. I am fairly certain her question of "what is your favorite food" was rote memorization from a program at school but she did ask a question none the less. Shortly there after our hearts fell when her sisters began to converse back and she looked away, out the car window unsure of how to answer. Seraphina has language however she does not have functional language. I often say if I could do anything to get inside her beautiful mind and understand things as she does, I would be the luckiest mom alive.

I don't pretend to know it all about autism. In fact, I learn and grow every day in knowing my daughter, other people on the spectrum and those who love, support and raise these children. I frequently ask questions of others, siblings of adults on the spectrum, parents of those who have already walked this journey and of course any adult on the spectrum I meet today. It is my hope through our story, that I will shed light on our journey and the path to seeing the beauty on the spectrum because honestly, although its the hardest challenge I have ever faced, it is the greatest gift I have ever received.

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 Michi...