Fix Me

September 17, 2014September 17, 2014 / simplynikkicat / 10 Comments

I once had a complete stranger call me, a lady who knew of me through someone, and say “if you would just put your son on the gluten free diet you could cure his autism…he would be alright.” Wow!!! Talk about being caught off guard. “Alright”…now there is an interesting adjective. “Alright” falls into the same category as “normal” for me. Both words project an image of how things should be rather than a truth that is achievable. This morning I found my self reading a wonderful article in Psychology Today about this very thing in relation to parents of children with ASD (Autism Spectrum Disorder). So many people offer advice to parents with special needs children but I wonder how many of them take the time to think about how their words are processed in the minds of a parent fighting the battle of a lifetime for their child? I wonder how many people who are offering up such advice have ever walked a day in the shoes of a special needs parent? If you get a chance I highly recommend you checking out the article. Not only because it offers outstanding insight but because you will also understand what prompted my heart to write this post.
http://www.psychologytoday.com/blog/the-wide-wide-world-psychology/201409/parenting-child-autism-resist-pressure-find-success

“Many parents equate success to having their child act more like a “typical kid,” displaying as few characteristics of autism as possible.”

I can not begin to tell you the amount of times that Matt and I have heard in regards to our son, Santino; “he’s going to ok, right?” “He’s going to be able to talk, right?” “What are you doing to make this better?” “Did you know that if you just (fill in the blank) he would be much better, all better, CURED?” And with all of those well meaning questions comes the neon sign that screams “YOU ARE NOT DOING ENOUGH”. Parents of ASD are trapped in this claustrophobic vortex that has them believing if they don’t try every magic autism bullet then they might just miss the very one that could have been the cure for their child. Because the goal is to make our children “alright” and “normal”…right?!?! That is the American dream, if something is broke we fix it. But how can you give advice on how to fix something if you don’t fully understand it? I wonder how many people actually realize the cost of all the things they are recommending when they tell parents about the new miracle autism cure they read about or heard on the news? Holly Robinson Pete once answered the cost question honestly when asked by Matt Lauer…$150,000 a year…that’s how much they pay a year for their child’s therapy. Last time I checked the average ASD family cannot afford even 10% of that figure. You know what that figure looks like spelled out for Santino…nine years diagnosed at $150,000 a year = $1,350,000…so far. Last time I checked Trump was not my last name so that therapy bill is a no go for my son.

“Mothers of children with autism have stress levels comparable to combat veterans” ~ University of Wisconsin-Madison

Back up. Did you just read that quote? Now reread it? My jaw hit the ground when I first stumbled across this finding. I think I may have even said a prayer of thanksgiving. Not because I put myself on the same playing field as the American heroes who have risked their lives and seen and experienced the horrors of war. Believe me I am no hero and I do not believe I should be equated to those who have rightfully earned the title. However, this finding does show just how hard living with autism is. How brutal it is to want to help your child so desperately but having to come to terms with that fact that every child with autism is unique and there is no one therapy method, pill, diet, or magic potion that will work for every child on the spectrum. What the parent of ASD has to come to terms with is throwing away words like “alright” and “normal”. Those words are subjective at best and when people place pressure on parents to therapy their children to that goal they set them up for failure.

“Oh yes, you shaped me first inside, then out; you formed me in my mother’s womb. I thank you, High God – you’re breathtaking! Body and soul, I am marvelously made! I worship in adoration – what a creation! You know me inside and out, you know every bone in my body; You know exactly how I was made, bit by bit, how I was sculpted from nothing to something. Like an open book, you watched me grow from conception to birth; all the stages of my life spread out before you, the days of my life all prepared before I even lived one day” ~ Psalm 139: 13-16

Long ago Matt and I abandoned the trap of “normal”. We have worn an armor that allows us to smile and politely say “thank you” when the “did you know” questions come in by the well meaning person who became an autism expert after watching Nightline, Oprah, 20/20, 60 Minutes, or the NBC Nightly News. Walking away from the pressure of “we need to do more” was the hardest but wisest decision we have ever made. It was hard because the mind wants to play the “what if?” game with you and with autism there is always something else you could be doing. However, it was the wisest because we recognized that in a quest to make Santino “normal”, in an unrelenting pursuit to fix him, it would be so easy to forget that our little boy is so much more than his autism diagnosis. Along the way God opened our eyes and our hands to let go of the need to fix Santino. We don’t need to fix our son because autism didn’t break him. We discovered the truth…the one thing that is not subjective is the simple fact that Santino is fearfully and wonderfully made. His being “alright” doesn’t hinge on him looking “normal”, his “alright” hinges on the fact that God created him and He has a purpose and a plan for his precious life. Helping him reach the fullness of God’s plan is what makes him “alright”. There is no better Santino than the boy I see squealing with laughter, the boy whose eyes dance with joy. We do what we can with the resources God has blessed us with. Santino has a wonderful team of therapists, aides,and teachers who have put together a therapy program that will help Santino and we have full confidence that by the grace of God Santino will reach his fullest potential. Notice I said fullest potential not; cured, normal, or all better. We must never lose sight that it is in our weaknesses or what the world calls our shortcomings that God makes us strong. I believe with all my heart that God will use Santino and his autism to bless many. How He will do it, I don’t know, I just know that He will.

“Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, a honest compliment, or the smallest act of caring. All of which have the potential to turn a life around.” ~ Leo Buscaglia

During a public melt down how I long to see just one reassuring smile…one person who isn’t judging my parenting or labeling my son a brat. How I long to tell the lady in the doctors office staring at my son that she is rude. The secret yearning to make this my Facebook status from time to time; “I love it when you give me unsolicited parenting advice about my special needs child. Your criticism is great greatly appreciated. – Said no mom ever!” How I wish people understood the way their stares unnerve my older son and make him feel uncomfortable to be in public with his brother. This is the why many parents cling to hope of “normal”. “Normal” doesn’t get stared at, it isn’t judged, it isn’t dissected, it doesn’t kick your butt on a daily basis. It also isn’t realistic. What if I told you that your reaction and interactions with a family with autism could make all the difference in the world? Would you sit up and read a little closer? Would you want to know what an ASD parent really needs to hear from family, friends, and strangers a like? I can tell you and it’s really not that hard. Instead of telling an ASD parent what they could or should being doing better, what if we all lifted our voices in encouragement.

“I see what you’re doing with your child and I think it’s wonderful.”

“I know you are already doing so much for your child but I saw this special on TV and they talked about (fill in the blank) have you ever heard of that?”

“I heard (insert the child’s name) say a new word, offer a smile to a stranger, interact with another child, go melt down free, etc. that is so awesome, I can see the progress they are making. All the hard work is paying off.”

These are the words the often worn and beaten down parents of ASD need to hear. They don’t need you to tell them what they are doing wrong or what needs improvement…they already feel inadequate for the job they have. They don’t need you to stare at them during a meltdown…they are already shattered by having to watch their child struggle so terribly. The one thing the family of autism knows for sure is that they are different…no one needs to highlight that for them. That is often a painful and lonely reality. What is the remedy? Kindness. How simple is that…be kind. Parents with children of autism don’t need you to help them fix their child, they need you to show them kindness, love, and compassion. There is no quick fix for autism, no easy or sure therapy method for success. There is a famous saying that states “if you know one child with autism then you know one child with autism.” Autism is unique and different for every single person on the spectrum. But autism is just a part of who these precious people are. They do not need you to fix that part they need you accept who they are as a whole. To see the fearfully and wonderfully person that God has created for a purpose.

“If I could snap my fingers and not be autistic, I would not. Autism is part of who I am.” ~ Dr. Temple Grandin

Success for my child is not dependent on fixing him. Some of the greatest and most creative minds have belonged to people on the spectrum; Mozart, Einstein, Newton, Grandin, etc. In the article I read this morning the author stated that success, like beauty, is subjective…it truly is in the eye of the beholder. For me success will never equate “normal”. Who defines normal anyway? Success for my son rests in the hope that God has created him for a plan and purpose and that He has given us the resources we need to unlock his full potential. I cannot worry about my lack of money or my inability to try every autism therapy out there. All I can do is trust my God and pray bold, audacious prayer circles around my son. My hope rests in the words of Jeremiah 29: 11-13 “For I know the plans that I have for you; declares the Lord, plans for welfare and not for calamity to give you a future and a hope. Then you will call upon me and come and pray to Me, and I will listen to you. You will seek Me and find Me when you search for me with all your heart.” When you see my child do not see a boy broken by autism…see a beautifully created child that needs acceptance, a little extra help, and a whole lot of understanding. See a little boy who has a bright future because God has a purpose for him. He is not a problem that needs to be fixed, he is a person that needs to be loved for who he is.

A Picture Paints A Thousand Words

September 8, 2014September 8, 2014 / simplynikkicat / 8 Comments

“The best part of the day…When you and me become We” ~ Winnie the Pooh

I am thinker. As I sit down and write a blog I often think through my words very carefully, over and over again. But some days a post is just meant to be simple. The message is simple, the thought not complicated, just a simple truth. The picture for this post is like so many we have seen; a young couple embarking on the journey of marriage. In a wedding picture you see love, adoration, a deep connection…we see a “happily ever after” beginning before our very eyes. The romantic in us gushes at all the blissful implications of the wedding photo. From this moment our happy little couple will go on a fabulous honeymoon, buy a house with a white picket fence, have beautiful babies, and they will all grow to be successful and happy. Ahhhhh…that is exactly how it will go…right?!?!

“Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps nor record of wrongs. Love does not delight in evil but rejoices with truth, It always protects, always, trusts, always hopes, always, perseveres.” ~ 1 Corinthians 13:4-7

Fourteen years ago this picture was taken. A dreamy-eyed 24-year-old girl married her 26-year-old Prince Charming. As the danced together so close they dreamed of what their future would hold. The sky was the limit and they were ready to soar to the top…together! They were on the fast track to their happily ever after and nothing could stop them. How could they have ever known that the future they envisioned and the reality that lay ahead would meet like two cars in a head on collision.

It happens to every marriage. The moment when the fairytale imagined up by the Grimm Brothers, Walt Disney, and Hollywood movie producers meet face to face with the reality called life. It usually doesn’t take a couple long to realize that marriage is hard…really hard. It requires a lot of patience, forgiveness, grace, understanding, compromise, and the list goes on and on. In fact as you begin to realize the full complexity of marriage you begin to understand why so many couples who have just longed for a fairytale end up in divorce court…marriage turns out to be way more complicated than what they signed up for. All they wanted was a happily ever after and what they got was a lot of hard work. Marriage is, in fact, the greatest example of why something created and ordained by God should never be rewritten by man. Man inevitably screws it up and creates it be something God never intended.

Seven and half years into our marriage Matt and I had completely lost any ounce of the illusion called fairytale left in us. In less than a decade our marriage had dealt with unemployment, an autism diagnosis, and the death of a child. Now before you go and feel all bad for us…don’t…there were a lot of amazing things that happened in that action packed seven and half years too. God blessed us with three beautiful children, we had been blessed with a home, Matt found some great employment opportunities, but most of all we truly discovered what it meant to be dependent on God. You see in that first seven and half years of our marriage while the illusion of fairytale combusted God’s intent for our marriage, the words of 1 Corinthians 13:4-7, came alive. We began to understand that our marriage was so much bigger than us falling in love and choosing each other; in fact we didn’t choose each other at all, God had brought us together. Our life together is so much more than a happily ever after; our life together is about fulfilling the mission and purpose that God ordained for us long before we ever even knew “Matt and Nikki” existed. How beautifully the Apostle Paul articulates the message of love in the 13th chapter of 1 Corinthians. You see it always comes back to the fact that God is love and when we love God, His love abounds and comes alive in us and in our marriage. God designed love to be patient and kind, not to be arrogant or prideful, to be shared and not hoarded, to be giving and not selfish, to have a heart of praise when life is going great and the strength to persevere when soul crushing heartbreak threatens to take you down. God has given us everything we need to succeed in our life together. He has given us everything we need, not so that we can just have a mere happily ever after; no God thinks much bigger than that, God gives us everything we need to have a joy and a peace in our marriage that surpasses all understanding. And the greatest gift is knowing that our joy is never dependent on our circumstances but always present because of God’s place in our lives.

“Now at last they were beginning Chapter One of the Great Story no one on earth has ever read, which goes on forever: in which every chapter is better than the one before.” ~ C.S. Lewis

Today its been fourteen years since the picture on this post was taken. Fourteen years full of happiness and heartbreak, ups and downs, mountain tops and valley’s and I would do it all over again in a heartbeat. There is not a single moment of my life as Mrs. Matt Catherincchia that I would trade for the world. It is as his wife that I discovered everything that matters most…true love. Love for my Savior, love for my husband, love for my children, and love for all those around me. It is as his wife that God has given me my true purpose in this life, my true ministry and together we will travel down the road ahead. Whatever is in store good, bad, happy or sad; the next chapter will better than the last because God has ordained our union for something far greater than happily ever after, God has ordained our union for a purpose that will be everlasting.

A picture does tell a thousand words. It shows a connection, it shows bond. It illustrates a union created by the very One who is love. It highlights love that endures regardless of circumstances because it has been woven together by the Savior and lover of our souls. It shows two very flawed people who have been brought together by a perfect God to live out a mission far greater than themselves and in accepting that mission God has given us the sweetest most sacred love for each other. This picture shows the world the love of my life fourteen years ago, today, and always.

I Love You Matt! Happy Anniversary.

Carpe Diem

September 2, 2014September 3, 2014 / simplynikkicat / Leave a comment

Is it odd that I often see September as the month of new beginnings rather than January? September always feels like a fresh start. While January has a bitter, cold, dreary demeanor, at least here in Michigan, September is the best of all of worlds. Days are still warm enough to feel like summer and nights start to have just enough nip in the air to stir the excitement of all that autumn has to offer. It’s the kind of chill that prompts you to envelope yourself in your favorite old sweater. You know, the one that you long to be reunited with every fall. You start to itch for trips to the cider mill, pumpkin spiced lattes, the beautiful colors of changing leaves, and fantasy football…LOL…not so much on the last one but that will make my husband happy. Yes, September is a month full of promise, full of new beginnings.

“You’re off to great places! Today is your day! Your mountain is waiting so…Get on your way!” ~ Dr. Seuess

Remember those “night before the first day of school jitters” you used to get as a kid? It was the same feeling you got the night before you embarked on any new adventure. The excitement and anticipation would course through your veins and manifest in an all consuming fluttering that left you feeling like a whole colony of butterflies had taken up residence deep in your stomach. It made you giddy, it made you anxious, you were so ready for the new adventure that it made sleep nearly impossible. This was my oldest son’s reality last night. Today was his day, the first day of middle school. All summer long he has been anxiously awaiting this new adventure. He has been so ready to tackle the new opportunities that being a big 7th grader will offer him. Honestly, I am amazed at what a deep thinker he is at times. He has told me many times that the start of middle school is a fresh start, a time to really come into his own. Wow…what 12 year old boy thinks like that? He definitely doesn’t get that from his mama. When I was starting middle school my biggest concern, I hate to admit this, was whether the cool kids would like me or not. Today he faced his mountain, Mt. Richards Middle School. Like a climber getting ready to conquer Everest he made sure he was prepared. Checked off all his supplies, made sure all forms were signed, practiced his locker combination, and roamed the school to get a feel for this uncharted territory. He was ready. At 6:00am the alarm went off and he was up, today was his day. The bus doesn’t pick him up til 7:40 so we had plenty of time to chat and double-check that he had all he needed. About 20 minutes before his bus came I saw the first sign of something other than excitement in his face, nervousness was settling in. He looked at me and said “mom will you pray over me?” My heart soared. For the last few minutes I had with him this morning we spent time in God’s word together and then I prayed over him. Somewhere along the way my little boy turned into a young man who knows that when you face the unknown mountains of life you seek after God’s presence in prayer and then you get going on your way. “You don’t need to know everything about the mountain ahead to take the next step.” This morning those words of Pastor Louie Giglio echoed in my head as I witnessed my son preparing to take the next steps on an unknown mountain climb.

“Carpe Diem! Rejoice while you are alive; enjoy the day; live life to the fullest; make the most of what you have. It’s later than you think.” ~ Horace

“It’s later than you think.” How ominously true those words are. One thing I know for certain is that life is short. Not one of us is guaranteed a tomorrow yet we live as if we have all the time in the world. Sunday as I sat in church our pastor spoke about creating margin in our lives. It was the final week of a sermon series about creating margin. What is margin? It is the amount of time, the amount of ourselves, that is available beyond what is necessary. Most of us have no margin because we live in a culture that celebrates busyness. One of the single greatest weapons the enemy uses against us is our schedule. We are so busy doing what is seemingly important that we fail to give time and attention to what is truly important. I just read a quote the other day that simply said “If you didn’t have time to pray or read Scripture today you are busier than God intended you to be.” I LOVE THAT!!! God created us to have margins, some of the best things in life happen in the margins. It’s in the margin that we are intentional, thoughtful, compassionate, and obedient. It is in the margin that we become more intimately acquainted with our heavenly Father. It is in the margin that we exercise the idea of carpe diem.

“The stakes are too high to die with a small vision.” ~ Pastor Louie Giglio

What if we all went to bed every night with the very same anticipation that kids do on the eve of back to school? Or think about a small child on Christmas Eve, their eyes illuminated with hope, their smiles give away the all-consuming excitement in which they eagerly await all that Christmas morning has in store. Just conjuring up that image brings a smile to my face and a flood of memories of that euphoric feeling. But maybe, just maybe, the key to carpe diem is wrapped up in the carefree example that our children set for us. An emotional connection to an eagerly anticipated event. What if the very way we live out carpe diem is dependent on our attitude, our sense of urgency, and an overwhelming desire to be used by God every day? What if we adopted the Dr. Seuss attitude that everyday is our day to shine…shine brightly for the One who created us. Embracing that the mountain that lies before us is the very thing that God will use to bring glory to His name if we would only trust that He will give us the tools to climb it. What if we treated every day like an Everest climbing experience? Eagerly anticipating the adrenaline rush of conquering something new. Today is brand new…nobody has been here before and no one will be here ever again. What you do with today is unique to today but its outcome could have a ripple effect that reaches beyond generations. But we MUST start every day fully prepared for the climb. Immersed in God’s presence by spending time with Him and in His word. Approaching the day with a heart of thanksgiving. Why? Because a heart of thanksgiving is a life full of joy. The joyful climber will not waver if the conditions get rough. The joyful climber understands that their joy flows from the One guiding them rather than the circumstances of the climb. Carpe diem, seizing the day, is not only possible but it should be pursued by everyone who has heart for people and a heart to serve Jesus. Seizing the day starts with recognizing that every day is precious. Seizing the day means approaching every day with anticipation and excitement. Seizing the day starts when we realize that everyday God desires to use us. Seizing the day starts with a heart of gratitude…gratitude for what you have and generous spirit to share it with others. Seizing the day starts with seizing the One who created the day…everyday! God doesn’t want us to merely survive this life, He wants us to thrive on the adventure of sharing His love.

“This is the day which the Lord has made; Let us rejoice and be glad in it.” ~ Psalm 118:24

September is the month of new beginnings. One season changes into the next, a new school year launches, and new mountains are meant to be climbed. Is there any greater way to start anew than to rejoice in the day the Lord has made? A day made so that we could be in His presence and experience His love. A day made so that we would have that the honor and the opportunity to share His love with others. My new beginning is to live a life of carpe diem…I will seize the day because every day is a gift from the One who ordained me to be a part of it so that I may serve and glorify Him.