We dream dreams for our children, do we not? As with any starting point in life, we have expectations for the progress and outcome when we are preparing for the birth of a new baby. There are hopes and ambitions - each one different from our neighbor and each one the same in some large points. I am no different.
I dreamed for Olivia that she would blossom into the same beautiful flower that her mother is. That she would be generous and loyal - that she would esteem family and home above all else and foster an environment of of joy and devotion as her mother has done. I dreamed that she would someday find a man, a tall and powerful man who was capable and kind, and who would be as stalwart in his love of her as in his love for Jesus. In my dream she would be a loving mother who brought her children to see their grandfather to be doted over and indulged.
I dreamed for Jack that he would grow into a man of action and kindness. That he would be enterprising in his service to God and others. And that he would be blessed with a wife of beauty and compassion, who would buttress him in the ways that he was weak and encourage him in the ways that he was strong. That he would lead his home and be an example to his friends. And that he too would bring his children to the old homestead to receive the same well-intentioned counsel that he had come to value from the moody old man.
I dreamed for Josiah that he would follow his brother in resolution and goodness. That he would be the physical and emotional presence that his namesake, my father, is so well known as. I dreamed that he would be powerful of mind and constitution, and that he would uphold his father as he had been upheld in youth. That he would find a wife to be his match and his temporal salvation, and that they would raise up ever more grandchildren to play and fuss at holidays while Christy and I looked on.
I dreamed for Jalen that he would be a powerful and striking man of universal appeal. That he would have the perspective of white culture with the pride of black culture. That he would share in my love of hip-hop and his mother's love of gospel. That he would be a mender of hearts and a builder of alliances. And that he would find a lovely wife who would be the counterpoint to him in every beneficial way. Maybe I dreamed in a little more detailed manner for him owing to the nature of his entrance into our home.
I dreamed for Judah that he would mirror the vivacity and solidarity of his childhood home with his adult life. That he would be fierce in his love for his siblings and parents, and that the strength which he drew therefrom would be the seed of greatness in the family he would found on his own. That he would seek a wife who would not only love and embrace him as a man, but also yearn for connection with his people and heritage. And of course, that he would bring many children into his home to share in the dynamism and love of a large family.
I try not to think about what might have been, 'cause that was then. And we have taken different roads.
As I look at Josiah on a night like tonight, my love for him is as big as the cold, starry sky. He is six and a powerful boy physically. He evidences a love for Christy and I that matches ours for him. He runs to us and looks deep in our eyes. He laughs and laughs and we laugh back and reach for him and delight to hold him close for just a split second before he's off again. He jumps on the bed that we're laying on and we reach for him with hand and foot to keep him from toppling over the footboard or slipping off the edge. We try to catch his attention and give one another a kiss to make him giggle and shriek. He will never know the dreams I dreamed for him, and I wish I had never been so presumptuous about the future.
Jalen is another matter on paper, but no different in my heart. His narrow little world of words lacking true meaning and actions without thought may never be the same world I live in. He is beautiful in soul and appearance, and he loves music, but if he is ever to be a leader and a husband then we will need an unprecedented miracle. He is smart to be sure, maybe brilliant - not in ways that mean fame and fortune, but in ways that may mean productivity rather than isolation. I love him dearly and am so glad to have him in our family, but my feelings are always ringed with a gossamer halo of regret for the dreams that I had.
For the other three children, my dreams have changed. Now they are more of a pleading reaction to my nightmares. I hope that they will find it in their adult hearts to care for the brothers of their childhood. I pray that they will be tender to their brothers' needs and forgiving of their difficulties. I hope for and encourage them to find a mate that will be kind and generous to my precious and vulnerable babies. My dreams have gone from bright, bold ambitions of glory and blessing for each to plaintive, quavering hopes that they will forsake themselves for the good of the least of these their brethren. My chest tightens even at this writing to think of what has been taken from me - my dreams.
We can't go back again There's no use givin' in And there's no way to know What might have been.
- from Christy "Count it all joy, my brothers,when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing . . . Blessed is the man who remains steadfast under trial, for when he has stood the test he will receive the crown of life, which God has promised to those who love him." James 1:2, 12
People often ask us, "How do you do it?" How do you face what God has called you to with a spirit of faithfulness and a desire to be joyful no matter what? We of course share our complete inability without the sustaining grace of our Heavenly Father, but we also share the fact that we know God has been preparing us, for many years, individually and as a couple to face the trials and joys of Autism. Yep, you heard me right. There can be joy and indescribable beauty in suffering, and one of the ways God taught me this was through the joy and heartache of losing Joseph.
Joseph Todd Nance was born on July 6, 2005. He surprised his parents Tommy and Stefanie by arriving prematurely during their summer beach trip. After a helicopter ride to a hospital equipped to care for a baby being born six weeks early, Stefanie gave birth all alone to their first born. When they returned home, they set out on the adventure of all first time parents of learning to care for and love their baby boy. They could have been considered more cautious than most, documenting every feeding, every time they gave him gas drops, every diaper change, and the time and length of every single moment that Joseph slept. They were meticulous, and cautious, and superb at being Daddy and Mommy to their precious Boo.
I had grown up beside Stefanie's family my entire life. She knew my love for children and she knew my experience with caring for a premature baby. Our Jack had been born ten weeks early, and he spent the first six weeks of his life at Duke. I was thrilled when Tommy and Stefanie asked me if I was interested in caring for Joseph when Stefanie returned to work. They knew that I would care for Joseph like he was my own, and our children Olivia and Jack were excited to have a new baby and future playmate at our house. Joseph provided me that fulfillment that I longed for that comes from caring for a new baby. And so we settled into our routine of early morning pick-ups at Hico Baptist Church (which was halfway between Tommy and Stefanie's house and our own), and of Joseph's scheduled feedings, diaper changes, and naps. I had no idea what God had planned, and how we would forever change our lives on October 18, 2005.
That day started like any other. Jeremy was home for a bit that morning, and so he kept Olivia and Jack at home while I made the trip to Hico to pick up Joseph. I can see it like it was yesterday. After Stef gave some instructions, kissed Joseph and said her goodbyes, we were off to the house. The morning was uneventful other than Joseph having a monstrous spit up after eating his bottle and before his midday nap. Spitting up was common for Joseph, but he got me good that time. Let's just say it required a complete change of clothing on my part. After I changed Joseph, I got him all settled down for his nap. The kids and I played with toys in the same room where he slept, I put away laundry, and I checked on him several times. Right before putting Olivia and Jack down for their naps, I checked on Joseph again right before 12pm. I will never forget that moment. The moment when I realized that Joseph wasn't breathing. The moments that followed felt like an eternity. Olivia and Jack were by my side the entire time. They are moments that come to my mind often. Some of the most heart-wrenching and painful moments of my life. But in the midst of agony, there was also beauty. Tommy and Stefanie were unwavering in their care and concern for me. In the midst of the worst moments of their lives, the fact that they even thought of me leaves me speechless to this day. Tommy crawling out of the police car just to embrace me and tell me everything is going to be okay. The gift of being able to dress Joseph for the last time. The beauty of kneeling before Stefanie with Joseph's head in my hands while she called out to our Heavenly Father brokenhearted but rejoicing in praise for the gift of mothering Joseph. I remember locking eyes with Tommy as she prayed. We both knew that it was as if heaven had opened, and Stefanie was surrendering her most precious gift back to Jesus. I felt as if I was truly on holy ground. Joseph's memorial service was perfect, and the love that Tommy and Stefanie had for him could not have been more beautifully conveyed than when Stefanie read the letter she had written to her sweet boy. I could go on and on.
Jeremy often reminds me that we make God so small when we try to pinpoint one specific "why" for the trials He brings into our lives. God has used Joseph's life and death to touch many people, and I know that He is continuing to use Tommy and Stefanie to this day to encourage others. I promised Joseph, as I held him for the last time, that my life would change. That I would be better for loving him. God has grown me and changed me through all of this, but it hasn't been easy. I have dealt with immense guilt for not being able to save Joseph. It has been a lesson in surrender. Surrender to God's sovereignty. It meant acknowledging that I trust and believe that God is the giver and taker of life, that He appoints a specific day for every man to die, that He orchestrates the events in our lives primarily for His glory, but also for our good if we love Him. I would be remiss if I did not mention how God has used the unconditional love of my husband and the gift of his wise council to see me through what would have been unbearable to endure without his loving support. Jeremy has been my greatest confidant. He knows my thoughts in my darkest moments when I am allowing myself to get swallowed up in grief. Those moments when I am tempted to make God small and me big. None of this is about me. It is about my Heavenly Father, and how He chose to use the life of a precious little boy named Joseph Todd Nance to bring Him infinite glory and to remind us all that His ways are past our understanding and that we can find comfort in knowing that He indeed brings beauty from the ashes of our lives.
Choosing to see the beauty in the suffering of losing Joseph, prepared me to see the beauty in Autism. "Oh, the depth of the riches and wisdom and knowledge of God! How unsearchable are his judgments and how inscrutable his ways! For who has known the mind of the Lord, or who has been his counselor? Or who has given a gift to him that he might be repaid? For from him and through him and to him are all things. To him be glory forever. Amen." Romans 1:33-36
We've talked a lot on here about the boys and their needs, and also about how Christy and I feel about and are impacted by their needs. Today I want to focus on the impact that the boys have on the other members of the family and the impact that others have on the boys and us. Don't worry if you didn't get all of those prepositions - just keep reading and all will be revealed.
Let's start with siblings. What must it be like to grow up with a severely Autistic younger brother? Or better yet, to grow up with two severely Autistic older brothers? Jo and Jay are bracketed by their older siblings, Liv and Jack, and by their younger sibling, Doo-doo. We used to call him that because it rhymes, but now it's more for his stinky attitude. Liv can remember when Jo was a baby, before the disgnosis. She has lived through the changes that have come into our lives with this disorder. Her interactions with Jo are not unkind, but she does have to watch for his aggression as he is almost her size. She also takes care that he not get in her room unsupervised as he is rough on frilly and fragile things. It's like she had a baby brother that got bigger, but never got any less baby about him. It's similar with Liv and Jay. She remembers when we brought him into our home through adoption, and like Jo, he has always been her baby brother and in most of the ways that matter in human relationships, he is still her baby brother. That doesn't sound like such a sad thing until you consider the boon and felicity that a sibling relationship can be. What has she missed and what will she be deprived of in not having a strapping brother Jo to defend her and a clever brother Jay to befriend her?
Jack is similar in a lot of ways, but also more affected in others. He remembers, but not as well, the times before Autism. In the same way his baby brothers have stayed babies. But Jack lives with them in a visceral and muscular way that Liv doesn't. Jack shares his room from necessity while Liv spares her room from calamity. There is a rivalry between he and the boys that apparently doesn't enter into Liv's mind. It is easy for me, having never had a disabled sibling, to judge Jack harshly for reacting the way he does to Jo and Jay, but I know I'm wrong to do so. It's easy to say, "he doesn't know any better," when Jo breaks something of Jack's, or to say, "he didn't mean to," when Jay spoils something of Jack's making. But the easy thing is seldom the right thing in life. The truth is that Jack is a great big brother. He puts up with a lot from them and protects them from a lot. Now, he is quick of temper and will sometimes lash out and shove Jo or get fed-up and put Jay in a headlock, but he watches for them and he saves them from themselves very often. And he and Doo-doo are thick as thieves and wonderful playmates, even given their age difference. I really don't know how to guide Jack in being a big brother to these guys. I teach him and model for him a kindness to helpless things and a compassion to errant beings, and I pray that the kernel of that truth will guide his thoughts and actions toward his brothers.
The baby is the one I think about the most when it comes to relating to Autistic siblings. Imagine how it is for a three-year-old to have a towering, speechless, frantic and erratic big brother. He has only ever known life with Jo in it. And a lot of what he's known of Jo is assault and battery. When he was little Jo would jump on him. As he started to toddle Jo would knock him down. Even now we keep the baby's hair short so he doesn't get dragged to the ground by it. Jo loves the baby, and the way he shows that love is the same way he shows Christy and I and the furniture and the mirror and the TV - he beats on us. We've taught him to be tough and to steer clear and to keep his back to the wall, but it breaks my heart to see him so defensive around his big brother. Our cultural paradigm is that the big brother may be rough on us, but he's also our greatest defender. Doo-doo has only the first half of that model to ever hope for from Jo.
The baby and Jay-jay is another matter. They're like Sid and Nancy - frighteningly compatible and amusingly explosive. They will play and laugh and tumble around and then scream and cry and run for cover. They have the most parity of anyone in the house - their weight at times is less than a pound different. Judah will wrestle Jalen out of the therapy swing and pin him to the ground, the both of them laughing. Other times on the sofa Jalen will deftly lay his foot along Judah's thigh in just the way that he knows will boil his blood. Shrieks of frustration and murderous anger follow soon after. It may be that with some of the strides we've seen in Jalen's development that one day he and Judah will have some normalcy in their relationship beyond just jousting, but it's a long shot. And Doo-doo has never really been the baby in the house - not truly. He's been one of the babies. And who knows what effect that will have on him in the long term. Will he resent what could and should have been? Or will his blindness to any life but this one allow him to take it all in stride?
And for all three of the siblings there is a big expectation from me and Christy: that they take our place in their brothers' lives if need be. We have regular discussions with Jack and Olivia about the need for them to love their brothers and care for their brothers. We've told them that if something happens to us then they will have to step up and protect these wordless baby-boys from any who would threaten them. We've provided for them to have wealth to do the job should we die, but they will have to supply the heart for the job. Our greatest fear as parents of disabled children is that we won't be there to care for them and defend them. Think of the gut-wrenching abuse that could befall a child who can tell none of his torment, who could make no defense of his own, who would struggle to even make sense of his world apart from the matrix that we maintain for them. So we lean on their brethren to stand in the gap, and that's a lot to ask of a child.
Another class of relation that we think of from time to time is cousins. Jo and Jay are blessed to have a bunch of cousins. Seven here in town with one more on the way, two far-flung cousins on the west coast and tons of cuzzins in South Carolina. Down there in Real Cackalackey we count just about anything as a cuzzin. I loved my cousins growing up and still count them as close confederates. Christy felt a closeness with her cousins as a child that was strengthened by regular family trips to the mountains where they'd all share in the soporific ease of the cabin her grandparents had built. A cousin is something between a brother and a friend, a special link, and a sometimes oasis within the family. And we see great evidence of love for Jo and Jay from their cousins. It gives us a chuckle to see the boy cousins running with them, and it warmed our souls to watch one of the girl cousins walk hand-in-hand with Jo around the yard. But you can't expect kids who don't live here to understand how to best relate to the boys. And we know that due to the needs the boys have that there have been times they got more resources portioned to them than their cousins did - particularly the resource of Papa and Meemaw.
And speaking of Papa and Meemaw. Both sets of grandparents as well as Jo and Jay's greatgrandma Sara have had to grapple with how best to grandparent our special needs boys. Again, we have the cultural paradigm of grandma guiding grandbabies through the customs of the kitchen and grandpa spoiling the young'uns with coins and candy - that doesn't work for Josiah and Jalen. It takes rigorous OJT for grandparents to even feel comfortable left alone with our boys. In fact, once a person reaches a certain physical maturity, they simply cannot be trusted to care for a child that will neither heed your warnings nor detect danger on their own. You have to be willing and able to guard these guys like . . . I want to use a sports analogy here, but as most of you know, I'm incapable. You know how basketball players stick close to one another and jostle around over the ball but never get too far away so as not to let the other guy make a shot. Maybe that's another sport, but you get the idea. If you can't catch Jo before he gets to the road, then you can't watch Jo. And that's sad to me because I was shaped so much as a person by my grandparents and greatgrandparents. I think of my Pawpaw Herd who was spry into his eighties, but not nearly spry enough to catch Jalen when he's doing the turn and burn. Forget going to grandma's house for the summer unless you want grandma in assisted living by the fall. So they look for ways to help, and they find them in abundance. Maybe not the normal grandparenting, but nevertheless showing the love they have in tangible, and sometimes not so tangible ways. Its odd to miss something that you never had, but I miss that Jo didn't get to go fishing as a 5-year-old as I did with my Papa. I miss that Jay never got to play banker in the kitchen at 4-years-old as I did with my Grandma Mary. Jo and Jay love their grandparents, and they are unrestrainedly loved by them, but it's different for them than the others and that stings a little.
I could go on and on. I could tell at length what terrific aunts and uncles the boys have, and they do. And I'm sure it's just as befuddling to them how exactly they should relate to the boys. I could talk about people at church for a long while. They have opened not only their hearts but their buildings and grounds to the boys without reservation. They minister to us daily in ways that others might not notice, but that are vital to our peace and happiness. They pray for us and encourage us and fix us amazing dinners and let us run between their legs in the Welcome Center and all with alacrity and agape love. They don't know quite how to react to the boys, especially when Jo pounds the sofa cushions behind their head or grabs them by the beard. But that's okay. We can't leave Jo under anyone's care, so either me or Christy or Meemaw are always with him, but the brethren find other ways to help. Various ladies work with Jay on-on-one in his classroom, and the church bought a special swing for Jo and provided a room for him to have a very special Sunday School class in. They cheer us on when the boys are making strides, and they didn't fuss when Jo pulled the fire alarm that time. Didn't even say a word - just silenced the alarm and opened the fire doors back up. The boys are devilishly tough to take to church, but the church loves them and us.
Alright, I'm good and welled-up. The point of all this is the same as ever: special people are demanding people, and those who care for them need special grace, but God is so kind to us in all His ways through Jesus. Pray for us, and praise with us that He has been good to this family every single day, and we have confidence that we can trust Him to be steady on.
We are so pleased and grateful to present a guest post from Ken Delorge. I don't know if he and his wife Claudette are honorary La Tour/Verroi's or if we all are honorary Delorge's, but either way we love them like family. Christy and I are at the beginning of our journey with Josiah and Jalen, but Ken and his family have walked the path through to its earthly end with his sister Susie. Though this is a story that ends in death, it is not a tragedy. From Ken's introduction and the eulogy that he wrote for her, you will hear a love story that ends in jubilation. Today is her second anniversary in Heaven, and we know she is unfettered by disability and expectantly awaiting reunion. For the impact that she had on Ken and the impact that he's had on us, we thank our loving God.
It has been two years since my younger sister Susie passed away due to respiratory complications. As the following eulogy explains, she was a special needs child born into a world that was in a time of tremendous transition and turmoil. As Bob Dylan sang, “the times they were a changing,” but the times were also still dark and insensitive when it came to having children or siblings with special needs. Oscar Pistorius and his phenomenal races during the recently held London Olympic Games highlight the changes that have occurred in the ensuing four decades since my sister’s birth. Those of us personally effected by “special needs” or “differently abled” children rejoiced at his accomplishments. We all have a long way to go and grow when it comes to accepting those that are unlike us. Christians need to completely develop a Christ-like acceptance of others. Those that have not accepted Christ as Savior need to see their own special need: salvation through and in Jesus. Once that has been addressed then and only then can one genuinely accept others as God has created them.
I remember with great clarity the ignorance and pettiness that I endured as a neighbor railed on me about my sister the “retard”. It is with tears in my eyes that I recall the struggle my Mom had with Susie, and how coming home from school I would gently rock her in my rocking chair and sing songs to her that my Memere Gosselin had taught me. The rocking would calm my sister and provide some relief to my Mom.
As you read this post, be thankful for the family and friends that the LORD in HIS providence has placed into your life. We are all fearfully and wonderfully made. We are so precious in HIS sight that HE freely gave HIS son to die on the cross for each of us - a free gift given to any and all that receive it. I am who I am today because of my sister. For thirty years now I have worked as a teacher due to my love for Susie, as I said at her funeral she is my hero, she is in heaven and I just can’t wait to see her there.
Susie's Eulogy
First of all, on behalf of Mom and Dad, Robby and I and our families thank you for your prayers and support over the past few weeks. We do not know why God choose to take Susan in the manner that HE did, but we know that in “everything there is a season, and a time to every purpose under heaven. A time to be born, and a time to die; A time to weep, and a time to laugh; a time to mourn, a time to embrace, and a time to love.”
These past few weeks our family has experienced all these things and each one of us has taken the opportunity to look back and reflect upon our shared journey with Susie these past 44 years. It has been quite a journey….
Susan Cecil Delorge was born on September 8, 1966 at the Webber Hospital in Biddeford Maine.
Throughout the past 44 years Susie taught us how to love unconditionally, she loved us completely, never expecting or demanding our love in return. But how could we not love her, one of God’s little angels, given to us as an undeserved gift from above.
“Love is patient and kind, love does not envy or boast… love bears all things, believes allthings, hopes all things, endures all things.” That was the heavenly love that Susie gave to each one of us.
As a young boy, I can remember asking GOD to heal Susie, to allow me to change places with her. I just didn’t understand why HE made Susie the way HE did. "When I was a child, I spoke like a child, I thought like a child, I reasoned like a child." I spoke with child like faith to GOD, and thought and reasoned as a child. I just didn’t understand why; none of us did.
Each one of us grows up with dreams, dreams of meeting Mr. or Miss Right, of getting married and starting a family. Mom and Dad were no different. Married on September 2, 1957, they started to live their dream together, Robby came first on July 11, 1958, and I showed up on March 29, 1960. Summers can be hot, and if you know my mother, she hates the heat, so the summer of 1966 must have been a touch uncomfortable for her, but she made it through the summer with our visits to Keoka Lake. Finally the day arrived and Susie joined our family, Mom and Dad knew something was different with their little girl, she was a gift from GOD that was special and she would have guardian angels working overtime watching over her, not because she might get in trouble - Robby and I would need them for that - but because of her special needs.
Susie’s special needs led her to many places, and allowed her to the touch the lives of countless people, Mrs. Barton in Derry NH, the folks at Pineland Center, and for the past 16 years the staff at Windmill Farms in Springvale. Everywhere she went she seemed to enjoy herself, whether it was at the beach, at Camp Waban, at a farm to pet the animals, at the bowling alley with her friends at Windmill farms, or at the Special Olympics. Susie just wanted to enjoy her time with her friends and family, in her own way she made every day a masterpiece. Everyone that she touched will miss her simple artistry.
“And they were bringing children to him that he might touch them… But Jesus saw it… and said to them “Let the little children come unto me, do not hinder them, for such belongs to the kingdom of God… And he took them in his arms and blessed them, laying his hands upon them.”
Today we grieve, we mourn, and we hurt, how much greater would that sadness be if we had never had Susie in our lives. Each one of us here has been simply blessed by that little girl with the infectious smile and giggle.
Today we have this hope… that "He will wipe every tear from our eyes, …neither shall there be any mourning, nor crying, nor pain anymore, for the former things have been taken away."
Susie spent this life confined to the earthly body GOD gave her, but today she walks upon streets of gold, today she talks with Jesus. Today let us remember the little girl that touched our lives with the unconditional love of GOD, let us look upon all of GOD’s children as fearfully and wonderfully made. As precious angels in His sight, just as we looked upon Susie, our daughter, sister, niece, cousin and aunt.
We love you Susie, I love you Susie; I can't wait to see you again someday…
My great grampaw's generation didn't get too hung up on something that we are steady worried about: sensitivity. A person in the public eye these days has to choose their words with exhaustive care lest he/she/it offend someone. We are at once more crass and vulgar as a society than we have ever been, and yet incredibly touchy and petulant. It's really laughable except the part about having to live in it. Modern America would make a terrific Far Side comic or even a great SNL sketch, but it actually is quite taxing when you have to go out in it every day. Allow me to illustrate:
Dateline Wilmington, NC some ten years ago. A public school teacher is given a formal reprimand and told she lacks sensitivity. Her crime? Using a word to describe a character in some literature the class was studying. A parent complained, saying that the word offended her because "it sounds similar to a racial slur."* Now, it's not a racial slur. The definition is,"not generous; stingy," and is of Scandinavian origin lacking any shared etymology with any racial slur. This is sort of like giving someone a thumbs-up and being accused of offense as it looks similar to another gesture of upraised digit. Might that be a little too sensitive? In fact, if you Google the word "offended" you come up with quite the litany of tragic headlines: "Crawford offended by officer's words," "Atheist group offended by Ag secretary's praying for rain," "Rudy Giuliani offended by 'Ted,'" and my favorite, "Justin Bieber offended by Timberlake comparison." Taking offense is the new American pastime and if the offense or the offended are impressive enough then we will hear about it night and day through what used to be news outlets. Who can forget the great moments in offensive behavior like Don Imus and the Rutgers women's basketball team, or Rush Limbaugh and Sandra Fluke, or Waldenbooks and the AFA, or President Obama and his "special needs kid" bowling performance?
Maybe that last one is more memorable for me. I admit that it hurts when somebody uses the word "retarded" to refer to something they think is lacking or silly or disappointing. Probably it hurts the same way "gay" does when used in that shorthand way. It stings in a way that the "n" word does - albeit probably less and obviously vicariously. We can debate sensitivity and homophobia and racism until the cows come home, but I don't need to be argued into not hurting people. I don't want to hurt with my words. But is it morally wrong to? And how should I react when someone does hurt me or a loved one with their words?
I wasn't always this way. I was 14 once too, you know. I've made my share of jokes that belittled or offended. I've let my glance linger too long on someone in public who was clearly struggling with a disability of some kind. I've said unhelpful things and failed to do helpful things. I've laughed at or failed to confront others who've done the same. And I'm rightly ashamed of that. So what could someone have done to help me see the nature of my behavior when I was 14? If you know anything about teenagers, or if like me you've been one at some point, then you know it's tough to get them to think of others first. So maybe I couldn't be helped when I was 14. But I know better now, and I know that Jack and Olivia know better. I've never had to tell them to be hurt when someone laughs at Josiah's difficulties - they live with him and love him and they hurt for him and take offense for him. And for Jalen, though he doesn't often make quite the same public spectacle.
There's actually a great deal of guidance from the Bible on this subject. Maybe what's needed here is a list. Let's see if we can do one up with some nice bullet points and so forth.
Oh yeah, this is nice.
First of all, we shouldn't talk ugly. It's pretty basic. Like your mother told you, if you don't have anything nice to say, don't say anything at all. This goes double for Christians and triple for when you're talking to an unbeliever. It's hard for me to believe that Jesus would hazard a person's feelings to make a joke, or to advance a political agenda, or to make himself feel superior. And He was superior! There is certainly a way to speak of any subject - even something of intense disagreement - without being offensive. Maybe the implication of the message has to offend, but the words of the messenger shouldn't. We're not all going to agree, but we can be civil.
Secondly, the Bible tells us that Jesus was difficult to offend. Not impossible, but nearly so. People called Him all kinds of names and spread pretty nasty rumors about Him (and still do), and He took it all in stride. He just blew it off or defused it, but He never demanded an apology or pouted or called His local representative to the Roman Senate. A big part of the character of Jesus during His ministry was humility. It's impossible to understand the mission and message of Jesus apart from the Kenosis. That's the theological term for His act of emptying Himself of all His rights and privileges and taking on the role and form of a servant - with no rights and privileges. Being offended feels like a violation of our human rights, but it's not really. And for Christians, we are told to expect the same treatment that our Lord received.
Third, insults and injuries and offenses are no different than the other trials that come into our life. Just like disease, hardship, persecution and calamity, insults are a weakness that we can rejoice in and thank God for. Why? Paul told his friends in Corinth that God brings these things into our life purposefully and graciously to make us more like Jesus. No one can do anything to us that God hasn't allowed in His plan. Not even the devil. If you don't believe me, read the book of Job. Notice who brought up the whole subject of Job. Yeah, that's God deciding what will come into the life of His creation, and the devil carrying it out. So the main need of our life is not health and wealth and satisfying relationships - the main need is friendship with Jesus and character that mirrors His. Let's face it, winning the lotto and having everyone in your life fawn over you doesn't exactly send you on a quest for answers. But cancer will. And homelessness will. And a deep emotional cut that hurts the more you think about it. That will.
So let's bring it on home. Should that teacher have been run out of town for using that word? No. Should I ever use it now that I know how hurtful and offensive it can be? I should definitely not. It's my right as an American to say whatever I want, but it's my responsibility as a follower of Jesus to not offend. Should Don Imus have said what he did about those young women on the radio? Certainly not, he shouldn't have said it anywhere to anyone. Should President Obama have made that crack about special needs kids? No way, and I'm sure he wishes he could take it back. Just like Rush probably wishes he could re-do his Sandra Fluke moment. Should Justin Bieber be offended at being compared to Justin Timberlake? Yes, maybe, and no.
People occasionally ask me what my initial reaction was when we realized Josiah most likely had Autism. I was sitting at our dining room table in Eli Whitney with Tammy our service coordinator with the Children's Developmental Services Agency. She asked a lot of questions, watched Josiah for a while, and finally acknowledged that our concerns were understandable. And while she couldn't give us an official diagnosis that day, I knew and never again doubted that Autism was a reality for Josiah. My first thought in that moment was how sad it would be if Josiah were never able to attend Alamance Christian School.
My parents had worked at ACS my entire life. It meant home and family and safety and loyalty and pride and faith and foundation and so much more. I had taken for granted the fact that all our children would attend school there. Papa and Meemaw would always be right around the hall just like they had always been for me, and perhaps after all of our children were school age I would go to work at ACS too. My Daddy often says that he bleeds the school colors of royal blue. I have always felt the same. But in that moment, I felt all of that slipping away. I felt the deep sadness of a dream never coming true, the heartache of a parent knowing that one of their children suddenly did not belong, and the fear of Josiah not being a part of something that I have always held so dear.
Our early years at ACS.
As a child, I did not know the life long and eternal impact that being a part of Alamance would have on my life. Through the gift of godly parents, attending and learning at Beacon Baptist Church, and being a part of the ACS family, God taught me precious truths about His love and care of His children and of His perfectly sovereign will for my life. Because of Alamance, I had the privilege of seeing first hand Christians like ACS alumnus Doug Roberts and ACS teacher Eddie Blalock face God's will of cancer for their lives with grace. Their faith in Christ's sovereignty even in the most difficult of circumstances made a significant impact on the way I viewed God's will. Being taught by educators who viewed their jobs as a ministry and whose desire was to be used by God, made me want the same for my own life. You see, it was about so much more than learning multiplication facts and state capitals. It was about learning of my need of Jesus, my complete dependency upon Him, and of the importance of yielding to His perfect will for my life.
Faithfully Yielding. I believe that is my life's purpose. I believe that is how God is using the Verroi family. Our mission field, our calling, is that we will choose to faithfully yield to God's sovereign will for our lives. We have tied the knot in the end of our rope, and we are holding on to faith. Faith in our Heavenly Father who has chosen premature birth, infant death, miscarriage, meningitis, adoption, unexpected diagnosis, and even Autism to bring about His perfect will for our lives. A will, first and foremost, that brings Him glory, and that will be for our eternal good. Lessons I learned while walking the halls, sitting in classrooms, playing on the courts, performing in plays and singing in the chorale, and sitting under the teaching of the faculty and staff of Alamance Christian School.
Leaving for our first day of school.
During the 2010-2011 school year, Mr. Daniel Freeman, faithful educator and administrator at ACS for 19 years, took a chance on our Autistic boys. He allowed Josiah and Jalen to attend school at Alamance. The teachers went out of their comfort zones and so did he to give our boys a chance. Because the boy's Autism is very severe, after much prayer, we decided to home school them in 2012. That 2010 school year is one that I will forever cherish. And perhaps someday, our boys will return to ACS. My prayer is that God will use Alamance Christian School for years to come, and that many more kids will benefit from the precious gift of attending such a remarkable place.
First day of school 2010.
Jalen began attending school right before Christmas 2010.
Love letters from Jeremy. I have lots of them. They are one of my most precious possessions. Each sealed in protective plastic sleeves, and organized chronologically in a large binder. Mostly they are dated pre-marriage, pre-babies, pre-trials of this life. I pull them out from time to time, trying to get a small glimpse of our simpler days. Days where our toughest decision was whether to diligently study for college classes, or, throw responsibility to the wind, to gaze into each others eyes for a bit longer. Precious memories, and precious moments of ease.
Last weekend we celebrated Father's day. Jeremy isn't one for Hallmark created holidays, but he does appreciate the opportunity to tell those he loves how thankful he is for them. But when it comes to himself, he prefers no cards, no gifts, no hubbub. I honor his wishes with a minor amount of frustration. I was recently reminiscing about one of his first letters to me. A small portion of it reads,
I want you to have everything you need. And this is simply the infancy of our relationship! But just like everybody loves a baby, I love this point in our lives. These days and moments are the precious foundation of what could be the most significant relationship of either of our temporal lives.
That letter was written October 13, 1999. Jeremy's words couldn't have been truer. That precious foundation was laid during those early days of our relationship, and that foundation has seen untold blessings and joys while weathering several storms along the way. I cannot imagine God choosing a better man for me. Jeremy is all that I need and so much more than I deserve. He knows my greatest joys, highest aspirations, darkest thoughts, and worst fears. He knows my strengths, my weaknesses, and he loves me for all of them. I long for those early days at times. When we could sleep all night in the same bed, eat at the same table, complete an entire conversation without interruption, and where all we knew was love and responsibility for each other. Don't get me wrong. I love our babies. Every one of them. But I couldn't have known that I was taking those early days for granted. I couldn't have known how hard it would become.
As our babies have come and our responsibilities have grown, I have joyed in seeing Jeremy father. The pride he takes in his children is palpable. He is constantly seeking for ways to invest time into their lives. Jeremy has a quote on his desk that says, "To a child, Love is spelled T-I-M-E." That about says it all I think.
His love for our typical children is so very clear. They are easier to physically love a lot of times. No boogers, poo, behaviors, sensory issues, etc. It is just simpler and gentler and predictable. It's just different. But when I catch him looking at Josiah and Jalen sometimes, there are these moments where you see such adoration, unconditional love, indescribable pride. A love that needs no physical contact. A love that needs no words. A love that is certainly unique because of the way God has uniquely made his boys. I could stay there all day in those moments. But like time does, those moments pass. The hard now and now comes flooding in again. We both struggle to stay afloat at times, but Jeremy is stronger by far. He yields to God's plan much easier than I do. He is always there trying to encourage me while being honest about his own fears and frustrations. He is my constant.
So Babe, while I know you despise being the center of attention and while my attempts at proclaiming my love for you are pitiful compared to the eloquence of your love letters, I want you to know that, apart from Jesus, you are everything I need. Thank you for almost 12 years of being my husband, and almost ten years of being the best Daddy our kids could ever have. I love you more than I will ever be able to say, and I pray that our relationship grows deeper and stronger in the years to come.
Precious Josiah receiving treatments for meningitis.
Have you ever had one of the moments where you have a thought that comes out of left field and leaves you disturbed. A thought that leaves you unable to shake the desire to figure it out. Well, I had one of those moments last week. Jeremy's new job has caused me to think a lot about preparing for the future, and our recent visit with the Carolina Institute for Developmental Disabilities (CIDD) has heightened our need to think and plan ahead for Josiah's future. So the question that is pressing on my mind and emotions is, "What will we do if Josiah is diagnosed with cancer some day?" Lest you think that an odd question, try to put yourself in our position. The process of detecting and diagnosing cancer would no doubt be difficult due to Josiah's inability to communicate. We feel almost certain that Josiah would not understand why the treatments and pain associated with cancer would be happening to him. He would just know that we were hurting him. It would completely turn his life upside down. It is already a daily fight for quality of life and happiness for him due to Autism. Also, determining when Josiah is in pain or discomfort is hard for us to do even now. Imagine all that cancer would possibly intel: surgery, chemo and radiation treatments, nausea, a possible port that Josiah would be pulling at constantly, and loss of sleep. The potential loss of appetite could be detrimental for Josiah due to his already exceptionally narrowed diet. Imagine how overwhelmed he would be. His sensory problems are so severe already. We can't imagine. And so we are left to contemplate which would be most important for our boy: quality or quantity of life. Jeremy and I have already agreed on the fact that we would love for the Lord to allow Josiah to live a long and healthy life with us, but that we do wish to outlive our sweet boy. The thought of leaving him behind, and all the unknowns that come with that is almost unbearable to contemplate.
Every trial we have faced has caused me to seek a greater understanding of Heaven. We are resting in the fact that, due to Josiah's mental challenges, God has already planned a place for him in Heaven. Having this confidence causes us to joy in thinking about Josiah's resurrected body. He will have clarity of mind, a voice to speak and sing, and complete unfettered fellowship with Jesus Christ. Because God has saved us, we will see him in Heaven someday, and we will enjoy all the things that were deprived from him on this earth. We long for Heaven for Josiah while we make the best of every day here on earth.
Meeting Jalen for the first time.
God is all knowing and all powerful. He is not surprised by the circumstances in our lives. My concern for preparing for the future should not be misunderstood as worry. I remember Pastor Karns once preaching about worry. He said something along the lines that worry is one of the most excused sins for Christians. If we have confidence in Christ's sovereign will, and if we are trusting that He is working in our lives for our eternal good, what need do we have for worry? What will our worry accomplish other than causing us to focus on all the unknowns instead of resting in what we do know? God is good, and He loves and cares for us. If I would just remember this every moment of every day, my life would be so much more joyful and peaceful. But, my own sin nature likes to wrestle with God. I like fighting for control. How thankful I am that God is in charge and not me.
Please understand that we have some of these same concerns for both Josiah and Jalen. Josiah has much more complicated neurological issues. Whereas, Jalen, while severely on the spectrum, is extremely intelligent and is learning to communicate very slowly. We pray that his communication will continue to improve over time. The doctors have prepared us that this will most likely not be the case for Josiah. The question of Josiah and Jalen's future is certainly in God's hands, but part of our job as their parents is to weigh out the options available and to be prepared for the possibility that we will be caring for both of our AU boys for the rest of their lives. The question of future illnesses, diseases, and treatments is one that I wish I did not have to think about. It is heart wrenching. So we will try our best to be prepared, but we know that we have no choice but to take things as they come. We pray for wisdom for today, and for the faith to trust in God's plan for the future.
- from Christy In the state of NC, when you have a child with a diagnosed disability, you can apply for hours of support through the state. These hours come in various forms. Right now, we receive developmental therapy and respite hours for our boys. The total number of hours for each boy per week is 17. We have these hours filled by one of the local entities in Alamance County that provides mental health services for the disabled. Two years ago our first assigned therapist moved away, and we were in need of a therapist that could take over her hours. Our service coordinator called, and told me that she thought she might have someone who could handle the Verroi boys. We set up a time to meet. I remember the first time I saw Rachel I thought that certainly this small quiet woman couldn't be the best fit for our Josiah. I was confident that he would snap her in two if he so much as laid a finger on her. BUT.....I tried to reserve judgement, and boy am I ever thankful that I did.
Rachel began providing services for our boys. What you have to understand is that, because we have two children who are disabled, they have a total of 34 hours per week that need to be provided. That is 34 hours of me spending time with this person, and entrusting them with helping me care for my children. It took me a while to come to grips with the fact that, because God's will for our family included Autism, my ideas about being supermom and handling everything myself were no longer possible. It wasn't and isn't safe for me to go anywhere without backup. The fact that both of our boys are runners makes it dangerous. I can still make short trips as long as I have Olivia and Jack with me, but going out alone with all three babies is not wise. And so Rachel began her hours.
She is soft spoken and smart. Rachel doesn't take herself too seriously, and she puts up with my antics like a champ. She is small, but, what she lacks in size, she makes up for in spirit. Rachel is a superb listener, rarely giving advice and completely comfortable in being the sounding board without feeling the need to try and fix what is often unfixable. Jeremy and I have always communicated to our therapists who provide care that our number one desire is for our boys to be kept safe. Any other work that can be done with them is great, but focus on keeping them alive and whole. Rachel has NEVER let us down. She weighs barely forty pounds more than Josiah, and she has never let him get away from her. It is hard to explain how remarkable this is. We live in a state of constant vigilance. If you let down your guard for even a moment, one of the boys could go missing or be injured. She has never let this happen.
The past two years have been hard ones for Josiah in particular. He has had lots of difficult transitions, and this has taken its toll on all of us emotionally and physically. Rachel arrives at our house every morning with a smile, and she leaves every afternoon the same way. She exudes contentment while in our home. Her job is not glamorous, but it is irreplaceable and priceless in our eyes. I knew very early on that Rachel wanted to be used by God to make a difference in our home. She has become my friend, my sister, MY therapist, and my constant encourager. Rachel has seen me at my worst and at my best. I cannot begin to say how comforting she has been, and how huge an impact that she has had in our lives.
God has seen fit to reward Rachel for her hard work and diligence, and she has been offered a promotion in the company she works for. This is one of those circumstances that comes with very bittersweet emotions. I am THRILLED for her, and I am thrilled for the other families in Alamance County that will benefit from her outreach. But I am also immensely sad. Change is hard. I have told Rachel that it was not as if I thought she would be with the boys until they turned forty, but I sure wouldn't have minded that being the case. God's sovereignty is such a sweet and precious gift at times like this. I know beyond all knowing that God provided Rachel at just the right time and He is choosing to take her at just the right time too. We are excited about our knew therapist who is taking over Rachel's hours this coming Monday, but today is our day to be sad. Although we know that we will be forever friends, I sure am going to miss seeing that big SUV carrying that little lady pull up in front of my house each morning.
Rachel, I love you more than I can ever say. Thank you for two unbelievably blessed years. Thank you for loving our special boys, and our other children. Thank you for loving me. You will be fiercely missed!
Last week was a big week for us. Josiah's long awaited and greatly anticipated appointment with the Carolina Institute for Developmental Disabilities (CIDD) was on Thursday. Our awesome developmental pediatrician Dr. Daniel Moran referred us to the doctors at the CIDD for a behavioral evaluation. His hope was that they would be able to assess and make recommendations concerning Josiah's medication, and that perhaps they could determine whether behavioral therapy would be beneficial for Josiah.
Before I get into the details of our appointment, I would like to share OUR feelings concerning medication. I'm "shouting" OUR simply because we firmly believe that every child and every family is different. Deciding to medicate is a very personal decision. There is so little known about Autism, and the disorder differs so greatly in severity. It would be wrong to think that the exact protocol for one child would work for all. There are no two Autistics kids the same! Each one has their own strengths and their own set of unique challenges. Our decision to use medication with Josiah came after years of trying any and every way to help him sleep. We didn't start using Meletonin until after Josiah turned three. The Meletonin helped Josiah fall asleep, but it did not maintain his sleep. By the time Josiah turned five, Jeremy and I knew we had to try and seek a different approach to help him. His nights were horrible, and his days were miserable. This past summer, we found out about Dr. Moran, and he referred us to Dr. Boyce, a fabulous neurologist who specializes in severe sleep disorders in children. With the help of both doctors, we began using prescription medications to help Josiah rest. Presently, his sleep is greatly improved. Not "normal" by any means, but praise Jesus, so much better. I DESPISE giving my five year old high powered medications, but I know that HIS quality of life was greatly affected by insomnia. Medication was our only option for improving this.
Jeremy and I along with Josiah and my Mama for backup went to the appointment. It was a good meeting, but it was hard too. We had a gut feeling just how severe things were, but it was a whole other matter hearing the doctor say it. We were told that Josiah is on the very high end of severe. This should not be confused with high functioning. What they were telling us is that Josiah is extremely severely autistic. In other words, completely disabled by the disorder. He has no self-help or coping skills. We have to help him eat, dress, fall asleep, calm himself, etc. The doctors also agreed that he most probably has brain damage from the meningitis or the treatment of the meningitis that he contracted when he was seven days old (that's a story for another day). He also has extensive sensory needs. On top of all of that, Josiah has SEVERE hyperactivity and impulsivity. On one of the tests given for impulsivity, normal range is a score of 3-5. Josiah scored above 50, and that is with medication.
The doctors gave us some good insight and perspective. They feel like the pressure to continue seeking outside therapy is unnecessary, and they encouraged us that it was ok to view the purpose of school not for academic growth, but for the opportunity to learn to be comfortable in different settings and with different people. We are unsure right now when Josiah will return to school, but, when he does, it will be with a one-on-one support person and for only thirty minutes a day to begin with. They also made it clear that behavioral therapy would be impossible at this time.
There were a few suggestions in terms of Josiah's medication. He is currently taking four prescription medications: Risperidone, Doxepin, Zoloft, and Tenex. The doctors suggested slowly weening Josiah off of the Zoloft, because he really is not getting much benefit from the drug. They want to increase the Tenex in order to help Josiah's impulsivity. The problem is that Josiah can only tolerate a very small amount of this drug without falling asleep. The plan was to try and start him on a stimulant in hopes that it would enable us to increase the Tenex without causing sleep. The stimulant of choice was Ritalin.
We tried the Ritalin out on Saturday and Sunday, and it was HORRIBLE. It made Josiah manically hyper for about two hours, and then he crashed the rest of the day. Extreme Crashing! We tried one more microscopic dose on Tuesday after consulting with the doctor, and, while not nearly as severe, the side affects were not positive. Those few days of medication trail have already affected Josiah's sleep. We totally understand that it takes some trial and error before figuring out the right medication combination, but Josiah's sleep is of paramount importance to us right now. We have decided with the guidance of the doctors to ween him off of the Zoloft and Tenex. He will continue to take the Risperidone and Doxepin to help him sleep. We will then reevaluate where Josiah is and make decisions concerning medication at our next visit with the CIDD.
Overall, I came away from our appointment with a tremendous sense of relief. I was comforted in knowing that we have done all we can up to this point for our boy, and that it is ok for us to live in the reality of what Autism means for Josiah. Does this mean we are hopeless? Never! Our God holds all the power in heaven and earth, and He can choose to bring about development in Josiah whenever and if ever He chooses. BUT.... God has chosen our sweet boy to live with this disorder, and He has blessed us and entrusted us with his care. Our job is to love Josiah, and to remain faithful. God has a perfect plan for our sweet boy. I can't imagine facing all of this without Jesus. What a good and gracious God we serve!
*DISCLAIMER: The following post shares some information, videos, and pictures that are graphic in nature. We would never want our posts to be seen as voyeuristic or crass, and it should be understood that, in sharing our boy's story, we want to respect and honor them while educating and encouraging others. This is part of the story of Autism for our family and many others.
"Why does he do that?" This is one of those questions I hear often, and I wish the answer were simple. MANY children living with Autism have a disorder called Sensory Processing Disorder or Sensory Processing Dysfunction. It is a disorder not recognized by many doctors and not covered by most insurance companies, but, in the case of our boys, it is one of the most debilitating and hardest characteristics of their Autism.
Jalen making another mud creation.
I could give you the textbook definition for SPD, but it will be clearer if I explain it in layman's terms. (NOTE: I am not a doctor. The information I am about to share is what I have found to be true in our boys.) So we all remember learning about our five senses in elementary school, but what you probably weren't taught is that we actually have nine senses. The senses we were taught are hearing, seeing, smelling, tasting, and touching. The other four senses are as follows: vestibular sense, temperature, proprioceptive sense, and pain. Body temperature and pain are clear enough, but the other two are probably unfamiliar to many. The vestibular sense "is the sense that allows an organism to sense
body movement, direction, and acceleration, and to attain and maintain
postural equilibrium and balance." Proprioception has to do with awareness of ones body parts. "Neurologists test this sense by telling patients to close their eyes and
touch their own nose with the tip of a finger. Assuming proper
proprioceptive function, at no time will the person lose awareness of
where the hand actually is, even though it is not being detected by any
of the other senses. Proprioception and touch are related in subtle
ways, and their impairment results in surprising and deep deficits in
perception and action." In a child with SPD (remember a lot of kids with Autism have SPD), their brains cause their senses to work differently than typical people's senses. For example, a person with SPD may have very sensitive hearing. The sound of humming to the typical person, may sound like a fog horn going off to someone with SPD. Likewise, when looking at another person's face, SPD may cause someone to be completely overwhelmed because they see every little nuance or imperfection. I once read that a young girl with Autism said when she looks at someone, her eyes take a thousand pictures of the person's face in just a second. For this reason, she most often avoids eye contact. SPD can also cause the sense of smell to be overly acute. And I don't mean "oh that is a really strong perfume you are wearing" acute. I mean "how can you smell the onions that are all the way on the other side of the store" acute. People with Sensory Processing Disorder often have severe oral aversions. Teeth brushing can feel like torture, and their diets are often narrowed due to sensitivities to food textures and tastes. I know several children who gag just looking at food that appears "wet" in consistency. Imagine if your skin detected every little fiber in the clothing you wear. Most of us don't worry about being aware of the tag on our shirt all day. People with SPD have described their clothing making them feel like thousands of bugs are crawling all over their bodies. Vestibular and proprioceptive movement can be significantly impaired causing a lack of body awareness and difficulty in maintaining balance which can cause clumsiness. All of the above are just a few examples of hypersensitivities when it comes to SPD.
Josiah climbing high.
BUT... just to make matters more complicated, SPD can also cause hypo-sensitivities. A person with SPD may seek out loud noises, or they may miss details that they were suppose to see and that would be obvious to the typical onlooker. SPD can cause a dulled sense of smell and taste. Things that should smell and taste putrid, may be pleasing to a person with this disorder. Some people with Sensory Processing Disorder don't feel pain as severely as typical people or they may be very sensitive to temperature changes. As I mentioned before, SPD can also affect how people process their body moving in space. Imagine how this could make you feel riding a bike or even riding in a car. These are just a VERY few examples. The list is
endless, and, in many children and adults with SPD, they struggle with
both hyper and hypo sensitivities. That's right, SPD can manifest itself
in some really odd combinations. Let me compare our boys to give you an example of how SPD affects kids differently.
JOSIAH:
Josiah constantly trying to block out noise.
His sense of hearing is very sensitive. He covers his ears a lot of the time in order to block out all the background noise his hearing picks up. Josiah often looks like he is in pain from his surroundings being too overwhelming.
Because Josiah is non-verbal, we can't know for sure how his senses process things, but I do believe his sense of seeing is probably hyper acute. He often squints or closes his eyes.
Josiah has an extremely narrowed diet. Since the senses of smelling and tasting are linked, I believe both are affected by Josiah's SPD. He tends to eat mostly crunchy snack foods or things that are dry and sweet. He only eats a couple of fruits, and he completely rejects all vegetables and meats.
Josiah's sense of touch is hyposensitive. He doesn't respond to pain as dramatically as typical children, and he seeks out very rough interactions with others. He likes his back to be pounded, his legs to be squeezed, his arms to be tickled, and he loves for his body to move in space. He loves to swing and spin, and he often requests to ride in the stroller or car when upset.
Josiah loves the water, and both the boys eat the bubbles and lick the bar of soap.
JALEN:
Jalen is starting to speak more and more, but he mostly just names things right now. His communication deficits make it difficult to know what he is hearing and seeing. If anything, we believe Jalen hears and sees details in the world around us that most typical people do not. He doesn't seem overwhelmed very often by this, but it certainly causes him to be distracted. Often it is almost impossible to get his attention. He is in his own world checking out all the details we can't pick up on.
Both of the boys have PICA, but Jalen's is VERY severe. His senses of smell and taste are like nothing I have ever seen. He eats everything outside, and I mean everything. Dirt, gravel, mud, stagnant water, mulch, wild onions and various weeds, flowers, and, if he could get to it, animal waste. This kid is a mess, but SPD is largely to blame.
Jalen HAS to get into dirt.
Jalen's sense of touch seems hyposensitive. He likes being ticked all over and he loves to be squeezed. SPD has affected Jalen's ability to predict how his body is moving in space in certain ways. He often gets terrified for someone else to control his body movements such as picking him up, twirling around with him in their arms, or lifting him in the air. But, as long as he can control his body, he is a daredevil. He loves climbing up high, and swinging, and jumping, and one of his favorite activities is balancing while walking across the half wall surrounding our carport. His calculated climbing reminds us of a cat.
Jalen using the Nestle Quick to make mud.
The question many people have is how do you treat SPD. There really isn't a cure for Sensory Processing Disorder. The treatment is consistent therapy to desensitize the senses most greatly affected. The therapy can seem odd to many people. In order to get proper output, you have to provide proper input. If a child has oral aversions, you can stimulate the mouth by rubbing the gums or getting the child to eat pop rocks, just for one example. A surgical brush (used by doctors when scrubbing their hands before surgery) is used to stimulate the skin all over the body to help with organizing the nervous system and to help with skin sensitivities. To help children with vestibular and proprioceptive issues, therapists swing them in all different types of swings. They spin them and create obstacle courses that help with body awareness. There are also feeding therapies to help broaden children's diets. Our living room has a trampoline, slide, tents, tunnels, and even a swing hung from the rafters. All of these are tools we use to provide proper input to help calm Jalen and especially Josiah during times of sensory overload.
More ear covering.
WOW! If you made it to the end of this post, you are a trooper, and I thank you. The number one cause of meltdowns in Josiah, is sensory over-stimulation. Can you imagine what it must be like when multiple senses are functioning wrong and being bombarded all at once? One of the greatest disruptions to peaceful living round these parts is Sensory Processing Disorder. For all the parents reading this whose child's Autism is greatly complicated by SPD, we can empathize completely! Our faith is being tried, and our patience is ever growing.
*All quotes taken from Wikipedia.
The following are several videos of our boys, and some of the "joys" we experience due to SPD. Once again, watch them at your own discretion. One of the videos involves a bit of poo.
Jalen loves the mud. His SPD causes him to be drawn to textures that are messy. He often pulverizes his food into a mash, licking it to make it really slimy. After watching the video, you may be concerned that Jalen is wearing a girls bathing suit. He loves the silky texture of Olivia's bathing suit, and, to avoid him taking all of her suits, we have given him the blue one to wear at home. For Jalen it's all about how it feels, and not whether it is gender appropriate.
We were at the park with the kids in this video. Josiah is not only seeking input from swinging, but he is also licking the sand. His PICA is not as severe as Jalen's but he eats his fair share of sand, rocks, and dirt.
Josiah loves swinging in his swing. It provides him with vestibular input, and we often use the swing to calm him during meltdowns and to help us when getting him to sleep. Depending on the way you swing him, it can either cause heightened arousal or provide a calming effect.
When the boys have a bowel movement, they try to pull their diapers off. Josiah tends to pull his off due to discomfort. He will put his hands in the poo that is smeared on his skin, but he really doesn't try to explore the poo. On the other hand, Jalen sees poo as being just like mud. This video was of a very mild episode. Although, I did realize after completing the video, that the certain someone who shed this diaper also crawled into the tent that Jalen sleeps in. So... it was a bit messier than I realized when videoing. Still it doesn't compare to some of the messes we have cleaned up.
Jalen is making yet another one of his mud creations. I let him make this mess just so our blog readers can get a sense for what we are talking about.
