Wednesday, December 19, 2018

You Don't Understand Until You Understand

Years ago, puffed chest, I would return home from college and be asked to visit classrooms. I was a natural with kids and children with extra needs tended to gravitate towards me. I now see that this was all in preparation for my greatest challenge and greatest gift, Seraphina.

That being said, I knew nothing.

I will tell you that diagnosis of sensory processing disorder which I thought compared to autism, it didn't. I will tell you I didn't understand that I didn't understand until I began to walk this path.

Tonight, I want to talk a little bit about understanding and thank all those who love, support and lift me up during difficult times. I COULD NOT do this journey without the people who have come forward and strengthened me, many whom I didn't know when my precious baby was diagnosed. Truly, YOU are heroes in my eyes, never backing down even in my honesty, even when that honesty is hard to hear, unbelievable or at the very least, uncomfortable.

If you had told me 4 years ago that a child, a small child, who loved their mother could rage to the point of giving you a black eye, I would have gasped. If you had told me that a child, who was a good, kind soul could pull out clumps of hair faster than you could blink, I would have laughed and if you had told me that I would be raising a child, breathing through the angst and choosing to never give up, I would have said "not me". Honestly? I thought if I ever had a child like that...I could fix it.

Truth is, there is nothing to fix, there is only the promise that I will stand by her and support her and try to help her feel good about the person she was intended to be. Her purpose? It is currently a teacher, not just to myself, her father or her siblings but to many those she meets.

You see, I thought I understood and honestly, I think even my mother thought she understood undertaking many of the more complex cases in her districts but truly, you don't understand until you understand and I don't believe you can understand fully until it is in your family.

I still remember sharing this journey with my family. Some thought I was exaggerating. Some thought she was just a strong willed toddler and I watched as those family members faces fell when they witnessed her first major meltdown before them, on a family vacation nearly 3 years ago.

I am grateful. I feel that because of who I am there is a chance to share our journey so other parents living in our shoes don't feel so alone, they don't feel like their world is a secret because honestly, its not just awareness we need but acceptance and compassion knowing that each day, we can experience challenges that words may not be able to explain.

Tonight however, I am grateful. For friends. For family and tonight I want to express true thanks for honesty. We had a melt down. It was of epic proportions. I am certain if you had peered in our windows, it would have seemed absurd that it was taking three grown adults to calm a child who was writhing in misery. I am sure that it would have seemed absurd that four other children scattered to find their safe place. I am sure that it would have seemed like it was a parenting mishap, undisciplined children or a child that was just belligerent. Instead, it was a child, overwhelmed with the change of the holiday season, provoked by the kindness of a gift and still working hours after other children twice her age had long finished their schooling and homework.

Tonight, I am grateful that those who don't always get it, are honest about it, that they share they feel for us but truly don't know because they don't. I will tell you, if you haven't lived with a child or been the caregiver of a child with a disability, you may not get it, and that it okay. My hope is through our journey and my writing that one day, those who don't get it, won't be afraid to ask questions, to learn to try to understand because in understanding we become softer, more compassionate and more aware of the blessings we do have in our lives and tonight, I am reminded of the blessings I have not just because I have goodness but because that goodness seems extra bright with the difficulties we face.

Seraphina, as I told you earlier today, I know sometimes its hard. Sometimes it seems we don't understand. I know sometimes you feel ugly inside. No matter what, I am here. I will love you. I will teach you. I will try to understand and forever, I will be your mother.

Sunday, December 16, 2018

Its Okay To Say "No"

I hate saying "no". Perhaps this blog is for myself, my own personal use to read and reread reminding myself I can only choose to do so much. That is my problem. My mom, an amazing woman balanced a career, my father traveling, a challenging child and volunteering like a madwoman through my childhood. Need a Scout leader? She's your gal. A docent at a local historical center, grab her an old Colonial outfit and she'll be there. She continues that today. Travel? Sure, but on Thursday she and dad are busy helping their church. I guess, for me, volunteering, being involved and giving of myself in return for the amazing life I have is just what we do.

Sadly, I can't always handle it and as we near the Christmas week, I realize its time to shut it down. For me. For my family.

I was chosen to be a parent of a large family, no we didn't plan it, yes, we know how it happens. After a deflating loss we decided to be open to life. We had no clue God would bless us with three more bundles after mourning the loss of our third pregnancy. We are blessed but in those blessings,  I need to find balance.

This week I tried to do my best. I balanced some volunteering, my mini-job and of course my family but at times it wasn't pretty and to me, that isn't fair to the children who mean the most for me. I am quick to say "yes" when there is a need, in fact just Friday I did it again when Special Olympics came knocking..."can you?". Um, I think so as long as it doesn't interfere with PTA and Lacrosse coaching...SH&T did I just say that? Yes. I did. I want so much to give to each of my children and here I sit trying to juggle and once again in the spot that I find myself so often.

Spent.

So yesterday it happened. The straw that broke the camels back. I won't go into details but I offered to do something for someone. When texts rolled in about how I was not meeting their needs for their time frame, I shut down. For the first time, shutting down, saying "no" felt okay and I thought back to a conversation to a mom I had years ago.

She told me, you have a big family, they are your first priority. You must protect your family first. Give next. She shared she always says "no" first. Then after consideration if God places it on her heart, she can always change her mind. She reminded me how people are always grateful for extra help but dislike thinking they have help and then being let down. This was years ago and though I listened, I never seemed to get it.

And so, today, I am starting. Clean slate. New week. New opportunities and new chances to protect my family. Don't get me wrong we know I will be where I am needed when I can and often where I am needed when I really should be focusing on what is more important, my children but I am finally starting to see exactly who I was called to be.

This life journey continues to show me that our lives are always transforming and when we choose to listen to His word and His call and those He puts in our path, life will turn out just as He intended.

Friday, December 14, 2018

Not Just for Her...A Call to Action




Today I saw it in writing, from the insurance carrier our company uses to administer services for our child. My daughter, whom I fought for, for years qualifies. She will in fact get the services she has deserved since her diagnosis almost 3 years ago. She has autism. She's disabled. Yes, autism is in fact a disability, for her. While it also gives her unique abilities it inhibits her abilities to function as a typical child and for that, it disables her. It impacts her learning, socializing, playing, etc. After her diagnosis I began my fight and lamented the loss of time as I watched as the golden window of early development closing in on us. We are nearing the end, my hope is that its not too late.....

Now, she will be covered. There are daily co-pays however it will enable us to give our child the opportunity to have more success. Thanks to my tenacity (which may have driven my mom nuts), I continued to fight, to write, to speak, to drive, to show anyone and everyone who would listen what this life, this diagnosis, this path did to our family. I also believed that we were chosen for this path because perhaps God saw it could be my calling to change that path and help make it better with the right therapy.

As we celebrated our own long fought battle, I realize that others are still in the midst of their own. First, the diagnosis. It knocks many of us down calling us to get up running, full force only to exhaust ourselves in a short time. Then, learning that the company you work hard for, that you devote time to isn't choosing to cover what your child needs to have the successes that they are capable of and what they truly deserve. Just today I saw yet another post of a parent yearning for coverage for their child, hitting that same brick wall I did years ago and honestly, I can't let it go. As I say in every battle I fight, I am not trying to make an impact for my own child alone but for all children so they, like their typical counterparts have the opportunity to be the most successful they possibly can in the best life they can possibly live.

So, today as I read that yes, my process is complete, my child does in fact qualify for therapies, I am reminded my fight isn't over. I am tired, I want to say I won and move on thinking of just my own family but I can't because there is another mom sitting in a home, lamenting a diagnosis and not sure where to turn. I continue to say that I want to make a difference. I continue to say this isn't just for Seraphina, and so, I plan to keep going so that others can receive the same notification that, yes, their child is covered.

Open enrollment ends tomorrow however some families can't afford the cost of a plan paired with co-pays to give their child what they need and so, I need YOU. Yup, you...my readers. I need you to read, understand, share and SPEAK OUT.

What you need to know is that even if a law in your state says that your services for autism are covered, there are many companies that can choose not to cover such services. These are self-funded companies that are protected by ERISA. This archaic law from 1974 has been amended twice but in reality it needs another amendment. Why? The population of children being diagnosed with autism and other disabilities is rising and that means that if they do not get services needed now that they will continue to need more services as an adult. As parents we want what is best for our children and each of our children have unique needs. So, what can you do? Even if you don't have a child with a disability? Even if you don't live in New Jersey?

Speak up. Speak out. Make yourself aware of this law and your own insurance plan. You can contact your human resources and let them know that they too will continue to have a burden as these children age out of insurance plans held by parents into the system. That being said some of these children will lead more successful, independent lives with the right therapy and even if they can't be successful can we not at least wish the same for all children? THEIR OWN HAPPINESS????

So today, I am writing with a challenge for you. Would you please consider looking at your policy, learning if it covers autism and if it doesn't speaking to human resources? Yes, I get it, its uncomfortable but if this were your child, you would want other to do this for you. If you really want to help, reach out to your Senators and ask them to speak up. It is time to make a change.

Over the last 2.5 years I have spent hours, driving, writing, speaking and while I was blessed to be driven to do this, some parents are not able to and if we, as fellow humans can give to another, then I ask, why not? It is after all the season of giving and this giving only costs time.

Friends, Family, those who just came across this blog, I ask you, please reach out to your Senators, share and help to create change to give all children access to the therapies they need.

Thursday, December 13, 2018

The Holiday Blahs

Lately it seems everywhere I go, someone, somewhere has the holiday blahs. I will admit it used to happen to me too. There is so much to do, so much to be a part of and so little time to focus on what really matters. Once upon a time, I too was that grumpy, overwhelmed, underappreciated person and yes, sometimes I still get that way but in the last few years, the journey I have been on has certainly changed my perspective.

For all of us, holiday's have a different meaning. For many, they are hard, discouraging, filled with sadness and grief.  Long ago, I lamented the losses that I felt at holiday times and then a few years ago, that all changed. It was a hard loss. At the holiday's and I wondered exactly why God chose to dance our angel into his arms so close to Jesus' Birthday but as the phone rang and I learned of my beautiful cousins passing, I lay on the ground outside my home wishing it wasn't true. The day was a blur. I recalled the moments I learned of her diagnosis and the letters we sent, pictures we colored, gifts we shipped and most treasured, the FaceTime conversations we had. I wondered how I would tell my sweet Simone, Clare, the girl she looked up to, admired and loved to get hand me downs from was no longer suffering and instead was dancing into the arms of her Creator. I don't remember how I told her, it was probably a blubbering mess of tears and gasps but that week we all suffered as we mourned our loss of a special soul. Sometimes God chooses children to be our guides to help us become who he intended for us to be. As time has passed I remember the beauty she radiated until the very end. It is that beauty that I choose to honor each December in any way that I can. I used to plan little gifts for others around me but as time has passed instead of planning, I let the opportunity come to me and I also take the time to acknowledge the beauty of others around me that make my life better. Today, instead of lamenting the loss of life (though I do still miss her and wonder who she would have gone on to grow up to be) I try to take this time to focus on what I have and what I can do AND often I see that same genuine kindness extended towards me in return.

Each day, I wake to her face. Her beautiful picture perches above my sink. It stands wrinkled, a bit dirty and frayed and yet, still that picture is one I cherish. I focus on her beautiful face as I wash dishes, wash my hands and work busily keeping the house going and each day I think of her life, much too short for those of us here on earth however still spreading her love through those who loved her.

Now, instead of hustling, grumbling and grumping, I try to remember her beauty, strength and joy that she carried with her each day. I try to offer my struggles for others living with loss this season and I try to find ways to brighten someone else's day.

Reality is, if we look hard enough, we can find good and beauty in each experience, even if its hidden in frustration, anger and pain. I still have those moments that I get tunnel vision and forget the beauty and grace Clare had and fall prey to overwhelming feelings of the holiday season. This season, it looks different to me than I ever thought it would but in its difference I can choose to see good.

I also try to focus on the same love, peace and goodness that I too receive from others. This weekend, I encountered a family who gave that to me. Earlier this week, another woman who made my day better and today, I too had the opportunity to be touched by a person who I met not by happenstance but by circumstance.

When we choose to say yes, to happiness, to peace to being open to giving, when we choose to be open to sharing ourselves with others, often we choose to see the best we can possibly see in life. Recently I read a passage that became etched in my mind. It noted we are chosen for the path we walk by God and sometimes we wish we weren't. However, I will say as I continued on my own path what the story said is true. Each obstacle we face allows us to be who we were intended to be, who we were created to be by Him, and this month, I don't doubt that. Those challenges, struggles, frustrations in your way? They are there, to help you, to allow you to grow to help you identify your purpose on this earth.

As you struggle to send Christmas Cards, gather gifts, attend yet another party, send regrets, remember to choose to see the gift in all these opportunities and purpose in the life that you live and you just may bless others being exactly who you were meant to be.

Happy Heavenly Birthday Tomorrow Clare, I love you and all the lessons you continue to teach me.

Tuesday, December 11, 2018

To The Mom on My Side

Dear Mom On My Side,

This weekend I packed up my daughter with apprehension and drove to Newark to visit the New Jersey Performing Arts Center. I hadn't been there before and like any momma, I was a little anxious to drive in, park and visit the venue not knowing what to expect, except you see, I had an extra bag to carry, my daughter, the one whom I was driving has autism. Autism is such a spectrum and that spectrum surrounds my daughter, daily. Some days, you look at her cherubic face and would hardly believe that she is plagued by physical and emotional pain carrying the burden of her long list of diagnosis' and then there are other days, when I stare into her eyes, wondering where "she" is. I wonder where her mind has taken her and wonder if I can somehow bring her back to me, to the momma who loves her more than life itself.

As we prepared to go, I began to talk to her about the experience. As we drove however she found a snag in her leggings, as I drove I heard her pulling away and glanced back to see her leggings in shreds across the backseat of the car. I laughed. I had to. I quickly called a few local stores on the way to see if they had children's leggings with no luck. I phoned a friend and she was out and about not answering calls and although my husband told me I had no time to stop at Walmart, I pulled in, hoisted her onto my hip and ran through Walmart in black heels with her shrill cheers begging me to run faster. I quickly grabbed three pairs...you see, if she tore one apart in the ten mile ride I wasn't certain we would make it all the way to Newark without multiple changes.

The rest of the drive was seamless--minus the merge into Newark and as I drove into a parking space noted on my pass, I once again hoisted that child onto my hip and trucked out into traffic with her giggling with delight. As the lights changed and we could go, she threw her head back in elation. I smiled, inside and out as she said "hello" to those sitting with blankets and bags on the park bench and wished I had something to throw their way.

We made it.

Almost.

As we climbed up to the first level, I was greeted by a lovely usher who told me where my seats were...smack dab in the last row of the theater. I tried to walk her by cautiously so as to not disturb you, your two toddlers or the families that followed but still felt like a total heel and prayed that she would make it through because if she didn't, that meant climbing back over the people we had just passed. I sat down, breathed a sigh of relief and the show began.

The lights.

The sounds.

The visual stimulus.

Immediately my "mom sensors" peeked. She stopped and shouted "my headphones". Thank God, I had them. I could hear her begging for them as loudly as she could wail while I quickly dug through the big bag of tricks I had with me. As she did, I watched as the attack on senses seemed overwhelming for typical kids and how I see all these attacks differently now that I have my sweet girl but once her headphones were on, she relaxed, she snuggled into me, and she felt safe.



I relaxed a bit.

She did too.

Until her senses were once again accosted by something new.

As a family, running later than myself squeezed into the seats in front of us, the smell of popcorn wafted in our direction.

"Popcorn" she shouted.

"Popcorn".

I sucked in my breath knowing just moments ago, we hurled our bodies over at least 8 people to get to our center seats and prayed that she would relent.

I whispered, at intermission love. At intermission. Expecting her to continue freaking out, I tensed my body and hoped for the best. It happened, she settled in. She waited. She made it. At intermission, I headed down and waited with her in a loud lobby and got her that overpriced popcorn that came with a Rubble hat. She was satisfied.

We made sure to get to our seats long before intermission was over, you see new mom friend, I didn't want to bother you, or anyone around me yet again.

The second half of the performance began again with the lights, sounds and intensity the first half did and I wondered how long I had. As she munched on her popcorn, I figured she'd be calm. I was so tuned in to her I couldn't tell you much about the show except that the parts I did concentrate on were well done and cute and then, as soon as my guard was down, it happened.

She bolted. She's fast and before I could even get up she was in your arms.

She ran past an entire family and got to you and you stopped her.

I was relieved. So often when we are out, people don't want to overstep bounds, so I begin flailing dropping my purse, leaving my other children and high tailing it to get my sweet girl but you knew. You had instincts.

I gathered her into my arms, headed back to my seat and picked up all we had around us. I zipped her coat and she begged to leave. As we walked past you all once again, you stroked my arm. I sucked in my breath, you see, I am used to these conversations and often I leave in tears wishing I had never attempted to have a "normal" life with my atypical child yet the words you whispered gave me the greatest Christmas Gift I may receive this year.

Mom on My Side, you stroked my arm and told me that my child, the one with the headphones, who shouted at one point in the program and ran to escape did well and that I should be proud. I smiled and started to walk away but the words, the ones that took little to utter meant the world, so I returned tapping you gently on the shoulder and thanked you. I told you the words you spoke meant a lot because my daughter, you see...she....and you finished my sentence, "she has autism and you should be proud of her, she did great".

My sweet girl and I did the same walk we had just an hour before, she said hello to those sitting on benches and I recounted our encounter. I thought about the number of times I have been told she needs more discipline or that I shouldn't give her these opportunities and how no matter what I am told, I try. I thought about how the words you spoke didn't take much from you but meant the world to me.

So sweet mom, we may never meet again, your beautiful eyes, they spoke to me, your petite loving frame was like an angel encounter and that lovely British accent won't easily be forgotten. You truly live love and for that I am grateful. I hope one day, I too can be that mom on another moms side because it meant the world.

From my little love to your family...Merry Christmas, you made mine just a bit more Merry. Thank you.





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