Friday, March 30, 2018

An Oldie But Goodie

****This is a talk I gave in 2013, carrying Seraphina. Seraphina is named for my cousin, Clare, who helped heal me in my adoption. She continues to be a presence in our life as Seraphina is named in honor of my cousin, Clare. How PERFECT it is that God called me to name Seraphina after Clare the child who taught me most about life until Seraphina arrived.******



Faith in His Sacrifice for Us
“It is finished” our Savior, Jesus Christ proclaimed after hanging for hours on the cross. We know it took much effort for any words to leave his lips, however he spoke those words and shortly after, he bowed his head, took his last breath and gave up his spirit here on earth.
Each year on Good Friday we have the ability to remind ourselves that although he gave up his earthly spirit, his spirit would forever be carried on in our lives.  He proclaimed these words as a victory over sin and human death and made true the promise of the gift of Salvation.  After his brief life, here on earth, he ascended into Heaven as was planned by God.  His life was lived out in complete accordance with His Father’s plan.  Jesus tells his disciples in Matthew, “If you want to save your own life you will lose it; but if you lose your life for my sake, you will find it”.  He offers his own life as the first example of these words and today people all over continue to try and live their lives for Him so they too can reach the promise of his eternal salvation with him.
The three words he speaks in his final moments on the cross, “it is finished” are so powerful, so full of meaning, so concise, that many of us don’t begin to grasp them fully until we have carefully read the scripture, studied the Bible and listened to numerous scholars and theologians.  This was true for me.  Until recent adulthood, I believed this proclamation was simply Jesus’ utterance to note that his suffering on earth was over and that his time bearing both the figurative and literal crosses of physical life were coming to an end. 
The three words sealed the promise our Savior made in choosing to die on the cross.  His death is the single greatest gift we will ever receive allowing us to join him in Heaven for Eternal Life.
Salvation. Wikipedia states that “ In religion, salvation is stated as the saving of the soul from sin and its consequences.[2] It may also be called "deliverance" or "redemption" from sin and its effects.[

During the past few weeks, this preparation for Easter, we call Lent, reminds us to work to deepen our understanding, gain a stronger sense of faith and grow into a closer bond with our Savior, Jesus Christ.  We are also called to recognize the gift our Savior freely chose to give each and every one of us. His life.
 For many of us, we struggle with the gift of Salvation.  We consider the pain and suffering Jesus went through from the Garden of Gethsemane through his crucifixion feeling each and every sin ever to be committed.   We question our own worth of the gift of Salvation.  We struggle to accept the fact that although we are never truly good enough for the gift of Salvation, Jesus chose to die for our sins anyway. To better prepare our hearts to accept this gift of Salvation, we must remain open to what the Lord has in store for our lives at all times. During Lent, we are afforded the opportunity to reach into ourselves and answer the call to spiritual growth.   Through that growth, we are welcomed to come to the Easter Celebration cleansed, renewed and reborn with hope that should we live the life that was prepared for us, as Jesus did, that we will reap the benefits He promised to us in his dying on the cross.
To grow, often we are presented with opportunities.   They arrive in our lives in many ways but sometimes by pushing us through trials and tribulations allowing each one of us to feel the changes as they arise.  We have the opportunity to leave that growth and feel a true gift of renewed strength and spirit.  Each one of us, when called should gladly accept our trials and tribulations in life just as Jesus did along the path to his crucifixion.  These trials didn’t just come in the final hours of Jesus’ life but through his entire journey here on earth. He welcomed these challenges knowing that he was living out the plan Our Heavenly Father had for him.
The Plan.  As humans, so often we believe that we have the best plan in place for ourselves.  Sometimes we find ourselves unable to hear the words of the Holy Spirit in our daily lives.  We believe that paired with our own plan that if we try to live as good Catholics, attending mass, receiving sacraments, working diligently and living in love for others, that we are living His plan.   That being said, the plan we have for ourselves isn’t always the road God has in mind for us.
 We are blessed in our lives with a purpose.  We must learn to listen and use His purpose for our lives for good.  He has the perfect plan for each one of us, just as he had a path planned for his only son.  As we travel the road in which we have planned, we may encounter something God has in store for us that we consider to be unplanned or even unwanted.  We see this portrayed through Jesus’ life and should expect that God’s plan for our lives is helping us reach our goal of Salvation.  It is very difficult at times to accept His plan and sometimes we find our physical body and critical mind turning away from these challenges, believing instead, our goals, dreams and realities are the right option for us.  These bumps in the road are often a life changing event.  These events can even become a cross in our life that draws us one step closer to our Lord and living in eternal salvation with God.  When these events arise, we are called, like Jesus to accept the burdens with grace, dignity and strength.  Instead of turning away we must fight our humanly urge and live the way Jesus showed us to live. We must take up our cross because in doing so we grow closer to Jesus.  I am sure you are familiar with the poem Footprints, “it is in time of difficulty when I carried you” Jesus tells us.
This concept has always been difficult for me and I expect it’s something that challenges us all.  However, in the past two years, I have been blessed to deepen my own faith and understanding of my purpose in life by witnessing the beautiful faith of my young cousin Clare. Like Jesus, and so many other faithful followers, our Clare traveled a road she didn’t plan. You see, Clare was diagnosed with a rare form of cancer when she was just 12 years old.  Like Jesus, this child took up her cross and through her experience said “yes” whenever God asked her to follow his lead. With the grace of an adult, a faith like Jesus, she stood firm in front of certain death empowering others and teaching them how to live.  Like Jesus, she saw her death as a triumph. In December, it was finished for her here on earth.  Her triumph over her own battle was won as her body would succumb, but her spirit, her faith, her teachings, her legacy would linger in the lives she touched.   As Angels stood before her, calming her fears, I am certain she danced joyfully into our Father’s Arms after having bore the yolk God had for her here on earth. 
Her life has taught me to accept the challenges God has chosen for me and live them with grace, strength and perseverance.  Live them as an opportunity to serve Him and to be more like Jesus. Earlier this month, as I began to wander away from my focus of Lent, I was once again reminded of Jesus’ “yes” for me and for each of you.  I was reminded that like Jesus we are called to say “yes” to His plan when he chooses to use our lives as a cross. In doing so, he strengthens us, he helps us to grow in our faith and perhaps those who watch us endure may grow closer to Him as well.   The words that called me back were simple but have meant so much to me.  Today, I wish to share them with you.
 If these are the small crosses we must bear to get ourselves into Eternal Rest with our Heavenly Father, we should gladly carry them.   This was said to me during the week of the three month anniversary of our family losing our beloved 14 year old, Clare.  It was spoken to me by her mother.  We wept.  I wondered exactly how we were to bear the burden of losing someone who taught so many so much.  That was until later that day when the Holy Spirit spoke to me as I was driving and still feeling the pain of her loss.  I wondered, “How GOD, am I supposed to move on with the pain I have in my heart?” He answered shortly after, with a church sign that said “If the burdens are heavy, I strengthen your shoulders”.  At that moment, I thought of Jesus outstretched on the cross, in physical and emotional agony, dying for each one of us, and the pain subsided.   If our Savior could say “yes” to death, to dying for each of us, then how can we not say “yes” to Him?  Always?  How can we not choose to remember his words “It is finished” and work to live a better life to serve God and each other?
Because of the words Jesus spoke on the cross, Clare knew and trusted in the Salvation he set before her. The salvation he promised was waiting for her, at the end of her journey which she had so bravely accepted and lived for.  In her dying, she reminded us to live the life He planned for us, to accept the crosses we must bear and to say “yes” to all that He has in mind for our lives just as she did.  When Jesus died for us, He reminded us that “It is finished” isn’t the end of life but the beginning of Salvation with Him.

Saturday, March 24, 2018

Girls, They Have Autism Too

I can't tell you the number of times I share Seraphina's diagnosis and I am told "wow, but she's a girl, I didn't realize they had autism too".

Yes. They do. The rates that they are diagnosing autism in girls is alarming and why? Many of those "girls" don't present in the way a typical male does. They may talk. They may make eye contact. They  may even "seem typical" but reality is that girls have autism too. It may not LOOK like autism in a boy you may know but its there and its going to rear its ugly head when it chooses to.

I still remember clear as day the week that I knew Seraphina was different, that in fact she had autism, it was in my favorite spot, Ocean City, New Jersey and today, it still remains my favorite spot. Perhaps it was the crashing waves drawing the life I knew out to sea or maybe it was the memory of my childhood that propelled me forward and beckoned me to notice the subtle differences that my own daughter had that my other daughters didn't present with.

So many times I am asked, how did you know and so here, are a few ways I knew my little love would one day be labeled as having autism, or disabled or a child with special needs.

The first time I realized that my child wasn't like the rest of my kiddos was when we were on the beach. I was suffering with a case of Lyme and was dressed like a bad Michael Jackson impression under beach umbrellas as the beach I grew up on as a child. I watched as my parents, my uncle and my husband played along side my children and there I saw it, my girl. Eating Sand. Yes, I get it, kids eat sand. Babies try sand. Toddlers may do it once or twice, but she was eating it and eating it with vigor. She had no qualms about inhaling the tiny crystals into her mouth no matter how many times I jumped up from my chair, swiped it out of her mouth and returned to the safety of my beach umbrella. She continued to eat it. The entire trip.




That week was life changing because although I noticed that my daughter could get things on her own, play for hours by herself and was not even aware of what her name was, I still held onto hope that she was just a late talker, a child who didn't smile as much or she was just mellow like her dad who seems to be bothered by nothing at all.

Perhaps that was my first worry that I tried to push down into the depths of my soul but the week continued to have moments that although I wanted to believe those who knew and loved my daughter were right, I was keenly aware that they in fact were wrong.

It was the trip to the Pier, Jillian's Wonderland Pier that I spent hours at as a child riding the most incredible rides with my cousins and watching my child ride a fire engine round and round for hours thanking my lucky stars that I had bought the unlimited ride pass. I knew it wasn't normal and though I giggled at the movie I recorded on my phone, that giggle wasn't just pure joy it had an undertone of nerves.

It was also the family pictures, the ones where although she was nearly two, she resisted sitting. She would barely sit and clung to the fact that I her mom, or her dad be near her at all times for she feared not touching someone she could count on and so, I napped, when she did, I slept when she did and when my husband and I weren't there, my mom stepped in as that extra mom who wanted to give her the comfort she yearned for.



And finally, her screaming...the words she once had were replaced. They were replaced by inconsolable screams that though I had heard time after time, drove others away. Her inability to communicate was something that I had not noticed was completely gone until that week, when away from the hustle and bustle of life, I looked in her eyes, and knew, the child I birthed, the one I raised for the first 18 months was gone, and this girl, this new girl had become my daughter and the coming years would call me to be the strongest, most courageous person that I could ever be because not only was I my own voice but the voice for my child as well.


So this post is for all the moms of girls who are wondering, who are questioning, who are asking themselves, do girls have autism too? Yes. Yes mom they do and those girls will open your eyes to something you never understood, never believed you could endure and never knew how much you could love until you choose to help them get the support they need.

As I tell all my friends, if you are worried ask, if you need help, seek it...and its better to rule things out then live life wondering. How blessed I am that my uncle invited us away that week, the one where I shut down and opened my eyes to the reality that yes, girls have autism too and my daughter is a girl who lives with autism.

Tuesday, March 20, 2018

Its the Typical Things



Today was filled with crazy emotions. It wasn't anything good or bad just emotions that I never realized I had before I had children. In fact, after I had children I never realized I had these emotions because honestly they never had to be drawn up from the deep within my soul and recognized.

You see, autism has a strange way of popping up, just when you think you have it under control. Sure it may be in the expected ways, a meltdown, the discovery of a co-diagnosis or even the realization that you have yet more people to share your diagnosis with (probably why I am so open, its easier for me).

It also shows itself in ways that you didn't expect and today a dear friend put it best, it isn't the college scholarships that we are missing out on or wishing our kids got, plenty miss out on that. Its not being picked first for a basketball or baseball team because you know those team captains in gym have their set players and even typical kiddos are left for last, its the simple, typical moments that remind you of what you are missing.

Today, I spent time on the phone with my daughters amazing case manager. The poor woman is stuck with me for at least 7 years and has already dealt with me in my most difficult special education parenting moments (I am getting easier I think). She was kind. She was caring and I was reminded how blessed I am to have the school district we had. Upon arriving in NJ we were told to expect 2 years. Its been 8. At first I hesitated to try and make friends. Why worry about leaving people behind, but this is home, and as I posted on Facebook earlier, it takes a village and I believe my generation has to dig in, dig deep and push to get these kids on track to raise the future, but you see, we can't do it alone and since letting people in, I have realized just how amazing this little town is not just for me but for my entire family and how they love Seraphina.

Now, that being said, after the amazing talks, which weren't easy for she nor I at times, I started my afternoon rounds of pick ups and while I waited, I scrolled through Facebook. Its my bus stop ritual, and I am pretty sure many other parents have that same ritual too. There it was, autism. Staring me in the face. It was autism because as I scanned pictures and posts, there were children. Children I loved. Children in my child's class. Children registered for Kindergarten. I was excited for them. I stuffed the emotions down, "liked" pictures and thought of how exciting their futures would be and then I found myself gazing. Thinking. Wondering. What would Seraphina's kindergarten look like. To be honest, we are still not sure but I know it won't be her smiling, holding up a sign that says she registered. It will start much differently with a battery of tests, meetings and interpretations of diagnostics to give her the best chance at success. I am blessed to be in a district that wants what is best but even in those moments, those meetings. It is hard. Its one of those suck wind, gasp, wipe tears and move on for you see Seraphina is so much more. In her little life she's teaching just by living and though my others did too, now I am outside myself realizing it and understanding how to be present, be aware, to look for growth and understand opportunity. Seraphina won't have this experience and although its this simple, typical experiences that I never acknowledged. I never realized they were so beautiful. I never understood how important simple rituals were or what they meant, not always to the child but to the parent and now, I miss it. Who knew something as simple as snacks, a few questions about a child's address and a picture would mean so much? Certainly not me, until now.

So friends, parents, parents of all typicals, relish in those moments because sometimes you don't realize just how much you want them, need them, yearn for them until you no longer have them.

Monday, March 5, 2018

Balance

Just yesterday I asked a friend with 4 kids how she and her husband do it. Divide and conquer she said. That is right. We can do that so today when we had two basketball games, one extra after school activity and CCD, I figured we had it in the bag. Not knowing the plan for CCD, I decided it was best I NOT send my husband to church with Seraphina. Who knew if she would make it and so instead I took her with me, to basketball...and I had to drag my poor daughter's friend. I think she got a lesson in parenting she won't ever forget.

Its been a tough week, we had snowstorms (luckily we didn't lose power). We had days off of school and honestly, my daughter has just been off. I am finding she goes on this path of strength, struggle and success....we are in that struggle phase where there is scripting (thank you Pinkilicious) and a ton of screaming that is followed by kicking, biting, hair pulling and head butting and honestly, these days are tough.

Still, she's my girl. She teaches me and today when we got to the playoff game for my 5th grader, I thought I had it in the bad. Armed with a bag full of treats, toys and my trusty phone I was golden...or so I thought.

In the fourth quarter, the other team came from behind. As the crowd intensified, children began to play basketball behind us. She noticed. She wanted to play too and I couldn't fault her. I tried to give her the soft ball we brought her, no luck. I tried to offer snacks. No luck. I tried to offer books, toys and candy and stood there shuffling back and forth trying to keep her off the court and away from the kids playing hoops on the sideline.

It happened.

She melted.

I tried to sit with her. I tried to hold her. Nothing seemed to matter except that she get her hands on the ball that these cherubic like children had playing in the back of the gym. She must not have been the only one bothered as the referee also asked that they stop, and they did...for a minute.

Then it began again.

She watched. She yearned. She wanted that ball with all her being.

I shuffled, I talked, I tried to get her into something else, all with my back turned to my daughters last 5th grade game.

So much for balance.

The scales were tipped and autism had the heavier hand.

Within moments a full blown melt down ensued. I became increasingly aware of my surroundings and immediately saw eyes on her. I tried to console her. I tried to hold her and finally, I sat, with a hard fall onto the concrete. I shushed her much like I learned in the "Happiest Baby on the Block" and finally she calmed. As she did, a neighbor looked on. He offered kind words. A friend was supportive and another grabbed her coat so I could cover her and shield her from the lights, sounds and smells of that gym.

Still I wondered, how do I balance this? How can I be here for her but yet be here for my other children? Am I doing this all wrong? Should I have stayed at home and begged rides from neighbors and friends? Honestly, selfishly I want to watch my kids play too.

With Autism, finding balance is hard. Finding opportunities to go places, as families is a challenge and finding the strength to do it without fear of what others are say or thinking is near impossible-for me.

Tonight was a mess. There was no balance and by the time I got to the second game, as my middle child began to ask questions I had no patience. Can there be balance when we as parents of special needs children try to find it and if so, how? Right now I feel like the scales have tipped and I am flat on my face trying to pick myself up.

If you are an autism parent or a parent of kiddos with special needs, what do you do?  This momma was bogged down tonight and honestly, I am not sure I can make it work in the future.

Trust; Shattered

I have sat and refrained from this post because honestly, I am minimally impacted by the situation at hand. I didn't lose my job, I am not owed money and I have a great team standing behind my child at school but once again I am reminded that I struggle to trust. I do. I always have. Its been a recurring theme in my life. I say it began with my adoption and I know for some that is hard to believe but I believe some suffer with a primal wound from their adoption. One that never heals, that is carefully bandaged by the love and care of adoptive parents but when instances occur that peel away that bandage, people like myself hurt. No more or no less than others but for me, it reminds me of yet another shortfall, my inability to trust. Once again, I am sitting here, feeling that I can no longer trust, feeling I need to pull my circle in tighter and realizing that I try to find the good in everything even when good is sometimes hard to be found. I don't want to be jaded, I don't want to feel like I can't trust but right now, in this moment, I don't and I am writing this because as I scroll through posts on Facebook, get phone calls from others parents, employees or practitioners, I am reminded, I am not alone and I want them to realize, they too are not alone.

I've shared out insurance woes and won't rehash all of them but it is said from diagnosis to age 5, a child is able to gain the most growth when they live with an autism diagnosis. I didn't know that my insurance, from an amazing company would cover no therapies, none that are suggested by the pediatricians, lawmakers and therapists themselves but because of loopholes, we were not covered.

I lamented that loss, picked myself up, began reading and found training. I was going to give my child what they wouldn't and then, it happened, I found the Disneyland of autism, a facility that provided therapies no matter what your ability to pay. We could pay. We did pay. For each service. I diligently put money in the jar every week, sometimes upwards of $100.00. I wanted the facility to know what they meant to me, that I would skip that meal out to give her what I couldn't alone. I was grateful. When I learned of ways to help I did it. I reached out to friends for support, many supported the facility, this non-profit that was serving my child day in and out and so many other children, some with no ability to pay. Sure, I knew that my insurance was being "billed" but I also knew they would never cover a penny so I wasn't concerned. Fast forward and I was seen out calling on friends, pounding the pavement, going to do speeches on this facility and what it had to offer, heck, I was even a speaker at the grand opening in its new facility. However, during the end of that relationship I felt something wasn't right and I was scared.

Sadly, my gut was right, when the doors of said facility closed due to choices of one person. I sat, sobbing, shattered. Shattered for the employees who gave to my child and feared their names pulled through the mud. I lamented the loss of services for my child, for other children, for children who don't have the team and support that my daughter has from her school and shattered for myself, how embarrassed I was that I asked so many to support me and my cause. I tried to just "get over it" but its flowed over into other situations, situations that continue to present themselves today.

Strangely last night I replayed another incident that occurred recently and considered maybe I was too harsh because of this situation causing me to question others. I wondered how one person could impact my life in a way that causes me to tailspin and regress into that space where trust isn't found. Then today, I got online and saw I wasn't alone. Others feel this way too. We are not alone in our sadness, in our hurt, in our distrust but we are still a community. We are a group that has strength, strength in numbers and so I sit and wonder can I take that shattered trust, glue the pieces together and make us stronger? Perhaps that is a new goal.

So today, all you families, lamenting your loss, all you employees who are feeling alone, all you individuals feeling some of what I am, you are not alone, our trust may be shattered but we will be stronger for the road we walk. Peace, Love and Light.

David.

I'm not really sure WHAT to title this blog. A child? A child I won't meet? A child who helped me see my path as to my God giv...