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.
Honestly, sometimes this blog is just one more thing that I don't have the time for. Or the energy for. Or frankly, the heart for. And I don't mean "heart" in that ministry sense like, "he's got a heart for the Congo," or "she's got a heart for reaching celebrities," I mean "heart" in that other sense. As in, "Fern had a bit of chorizo in her teeth, but I didn't have the heart to tell her since Wilbur was dead." It's probably something akin to courage, but not the courage that counter-poses fear as much as the courage that stares down emptiness and hopelessness. Mmmm, but now I can't stop thinking about chorizo.
We can talk about perspective and faith, and that's important and valid. I can no doubt convince you of the blessing of the sovereignty of a loving God, and how He has not given us more than we are able to deal with, granting His strength to help. I am quick to tell people what Pastor Karns said about how your life can shrink to the size of your problems if your not careful to keep your eyes on Jesus. And I am truly thankful knowing what C. S. Lewis said about pain being God's megaphone to the world, and we have certainly heard from Him through the struggles with our special boys. And I know, I mean know beyond any doubting, that my life was always going to be just exactly as it is, and any expectations I had for my future were daydreams and conceits. But some days it's so impossible and intimidating that I wish these boys had never been born. Or that I hadn't.
Does that shock you to read? I probably shouldn't write it, but it's true. There are times when the blessing that they are and the joy of fatherhood is totally eclipsed by the panic-level tension of living with them, and living with the people that have to live with them. Those times when Josiah has slept for three hours the night before in five sessions spanning three rooms, and he's wailed and flailed off and on for hours before he starts in with the head beating. And all I can think when I look at him is how this is going to be when he's fifteen. And meanwhile Jalen is in the back yard with a mouthful of dirt and a piece of plastic jammed in the key hole of the car door he just mutilated with a rock. And Christy is crying. Not a couple of silent tears, I mean really crying. A weary, plaintive sobbing as she pushes him in the swing. And Judah is screaming at Jack, whose big-brother playful aggravation would be overlooked in another setting, but because of everything else that he can't control and didn't ask for, it gets him in trouble and crushes his spirit just a little more. And Olivia is obviously angry. She still has to do her homework and go to bed on time even though she literally saved her brother's life today. Again. And I'm on the phone in the office saying, "I'm doing great, how are you doing tonight? Can I interest you in some life insurance?"
It's not the hardest situation anyone's ever dealt with in the history of the world. Not even close. It's not even remotely the hardest thing anyone is going through right now. But it's the hardest thing I've ever had to do. To keep on going in the face of this. To have the heart to write about it. Oh, I just remembered something. Christy said the last couple of posts have been quite serious so I should write something light and funny. It's probably too late for light now. Chorizo!
We thank Pastor Bob La Tour and Papa to our children for another excellent guest post.
When we cannot
understand what God is doing, we must cling to Who He is. And therein lies a problem. It is impossible for us to think of God in
anything other than human terms because…we’re
human! God is the eternal,
self-existent, unchanging and invisible Spirit Who is the Source and Sustainer
of all else! Although He is transcendent
to the point that he must humble Himself to even behold things in the heavens
and on earth,1 and cannot possibly be fully known or described by mankind,
He has chosen to reveal enough of Himself to awe those Who go to His Word
humbly with childlike faith.2
This true and living God described in the Bible is everywhere present in
all of His essence at all times.3
He knows all things past, present and future4 down to the very
hairs on our head,5 the words that we have spoken and have yet to
speak, the steps that we have taken and have yet to take, and the things that
we have thought and have yet to think!6
As a matter of fact, He fashioned us and
every other human being exactly how He chose as pieces in the grand puzzle of
His providence.6 He has the
power to do anything consistent with His character, but the wisdom to do that
which magnifies the glory of His unique Excellency as He directs every detail
of His will. This God, Whose
unfathomable glory and holiness defy man’s best attempts to understand and
describe Him, “is righteous in all His ways, gracious in all His works.”7 This God, Who is “clothed with honor and
majesty, Who covers Himself with light as with a garment, Who stretched out the
heavens like a curtain,8 is immanent and personal. As the Almighty who commanded light to shine
out of darkness, He has shone in our hearts to give the light of the knowledge His
glory in the face of Jesus Christ.”9 He has transformed into children of light we
who have placed our exclusive and entire trust in the Person and work of His
Son.10 He has commanded us to
shine as lights in a corrupt and sin-darkened world whether He brings sunshine
or rain, mountaintop or valley into our lives.
To us, He is “the Father of mercies and God of all comfort, who comforts
us in all our tribulation so that we may be able to comfort those who are in
any trouble, with the comfort with which we ourselves are comforted by God.”11
Now, that just
fixes everything, doesn’t it?
Hardly! We are flesh, and even
though we may truly believe all of the above by the grace of God, we still
struggle with the fact that He has chosen to send storms into our lives for the
purpose of bringing glory to Himself. We
read with mixed emotion verses like Ecclesiastes 3:11. “He has made everything beautiful in its time. Also He has put eternity in their hearts,
except that no one can find out the work that God does from beginning to
end.” Solomon realized that we struggle
to see the “beauty” in some things that God ordains, and that, even though He has
given us a sense of the eternal, we cannot “figure it all out” as it relates to
our personal role in His grand scheme.
It is too easy to look back at the lions’ dens, giants, fiery furnaces
and thorns in the flesh of Bible characters that we see as “larger than life,” and
forget that they struggled just like we do.
We know by faith that there is much more to
our existence than this life and, yet, from Adam and Eve’s misguided curiosity
until now, mankind has had an insufferable itch to know what God knows. There is a sense in which knowing everything
would take away faith and hope and trust and thereby rob us of a blessing. What we need is the simple transparency of
the disciples when they responded to Christ’s teaching on forgiveness. "Take heed to yourselves. If your
brother sins against you, rebuke him; and if he repents, forgive him. And if
he sins against you seven times in a day,
and seven times in a day returns to you, saying, 'I repent,' you shall forgive
him." And the apostles said to
the Lord, "Increase our faith." If the disciples needed increased faith in
order to embrace and obey some of Christ’s teachings, then surely we do
also!
When we cannot understand what God is
doing, or when personal circumstances stretch our faith, we must cry out, “Increase
our faith!” Rest assured, God will
respond as He sees fit. And that is
always best! The next time doubts and
discouragement and disillusionment weigh you down and distract you from the
truth of God’s sovereignty, offer up this prayer of dependence, “Lord, I
believe! Please, help my unbelief!”
1 Psalm
113:5,6 2 Mark 10:14-16 3 Proverbs 15:3 4
Isaiah 46:10 5 Luke 12:7 6 Psalm 139; Exodus 4:10-12 7
Psalm 145:17 8 Psalm 104:1,2 9 II Corinthians 4:6 10 Ephesians 5:8 11
II Corinthians 1:3,4 12
John 20:24-29
- from Christy Jeremy and I met while attending college at Bob Jones University. Several times a year, the University puts on a program called Vespers. A good friend of ours recently posted a link to a video that was shared in one of the Vespers programs this year. The video was excellent, and it helped me put words to the thoughts I have been struggling with for some time. Three stories of grace were shared, and the video ends by asking, "What is your story of GRACE?"
When contemplating this question, I can recall several stories of God's abundant grace being made evident in my life. All of these circumstances have built upon each other. They have caused me to know beyond all knowing that my God is good, and that He has always been faithful to me. In the midst of sleepless nights and unending meltdowns, in the midst of uncertainty about the future and heartache about questions I can't answer now, in the midst of my failings and my sin, I know that Jesus Christ has all of this planned out. He knows my every thought and every concern. He knows my grief, and He grieves with me. Our boys have been perfectly created by an all wise, all knowing, all powerful, all loving creator. Because of God's faithfulness and grace in our lives, I can honestly say that I would not change our boys. Emotions will come and times of weakness are inevitable, but, in the end, all that matters is that God is good.
Please click on the link below, and take time to watch the video. I pray it will be a blessing to you as much as it was to me. Many of our readers will particularly appreciate the story from the perspective of a mother with special needs children.
One thing you must understand above all others is that safety is a goal. An ideal. A moving target of a state of being which can elude the most diligent archer. Keeping two Autistic children safe is akin to being hunted by a pack of velociraptors. It's been a long time since humans have been troubled by velociraptors (oh yes, I went there), so I'll refresh your memory. "You stare at him, and he just stares right back. And that's when the attack comes. Not from the front, but from the side, from the other two 'raptors you didn't even know were there."*
That's how it is with our boys. When you're watching Jay-Jay to make sure he isn't going over the fence, that's when Jo is choking on the bottle cap. And when you're chasing Jo down the store aisle, that's when Jay-Jay is climbing out of the cart to head the other way. Being alone with them in public is tense. And the sure knowledge of what can happen if you let that tension lapse . . . well, it's terrifying. I may write some more about this vigilance in the future, but for now let's finish the security talk with two locks that keep the boys safe from the world and one lock which keeps them safe from me.
Yes, there is a Fort Knox feeling to it. You get accustomed.
The first mechanism I'll detail is one that you've undoubtedly seen before. The simple but effective door chain. In the movies these chains can keep a 200-lb intruder frustrated on the stoop. I don't know if they'd really hold up to that much abuse, but they can keep a wandering, no-talker from wandering to death. And the reason for that isn't necessarily that the chain is strong enough to keep the door from opening at all. It just needs to slow them down. The rattling boom that the doors make when you try to open them with the chain in place is a terrific alarm and a perfect speed bump. The only problem with the chains is that they are manually operated, and therefore subject to crippling by human error.
I'm sure you're wondering what my lawn secret is. Neglect.
Another of our security devices that has been defeated by human inattention (my own, if you must know) is the outside gate lock. Now you might think that securing a drive gate is easy, but you'd be wrong. The dainty little latch that comes standard wouldn't keep a blind cow corralled. That could be hyperbole - I'm not really up on cows. Nonetheless, our boys would lift that latch and be gone in two shakes. So we use the carabiner to make sure the latch can't move. Here comes the tricky part. Because both halves of the gate swing away from the middle, you could easily push the gates apart and open having never touched the latch or carabiner. Wait, you say, does not the rod that drops into the hole in the cement keep this from happening? Only if it's long enough, dear one. The original rod left a foot tall gap between itself and the latch causing a genuine vulnerability. So we got the fence guy to bring out a new rod that can't be extracted from the hole in the cement unless the latch is open. The black part that you see between where the gates meet is the fail-safe. It makes it so you cannot close the gate without locking it. It's obviously redundant and possibly unnecessary, but this gate is the most dangerous thing around for our boys. They are constantly looking for ways out, and once they get out they be gone. So better safe and hassled than sorry.
We bought this cabinet pre-abused from Granddaddy's.
As I said, the last security measure that we shall discuss doesn't necessarily protect the boys from harm. It protects some of our more sensitive material possessions from the boys. It's the lock on the entertainment cabinet. Or as my wife calls it, the armwahr, the armwah, or the armoire. Something like that, one of those. Anyway, there's nothing extraordinary in this cabinet. A small television (26" 1080p 60Hz LCD for those who care), a cheap Blu-ray player, what I will refer to as "Jack's" Xbox 360, and a bunch of DVD's and such. It's mostly those DVD's and Blu-ray's that the lock protects. A copy of Beauty and the Beast on Diamond Edition Blu-ray will run you nearly thirty smackers. I didn't pay that much of course, but it's the principal of the thing. And Jo especially is torturous on silicon discs. He bends them and bites them, he throws them and smears things on them, and he sticks them places. He broke the middle out of Cinderella and gouged Lilo & Stitch past playability. On more than one occasion I've seen him using one as a sort of ski on the kitchen tile - silver side down. That just breaks my heart, people.
So there's security. Please let me know if you have any questions, and post any best practices and fresh ideas in the comments below. And if a kid runs past you in Walmart making a funny noise, cover the exit - I'll head him off at the candy aisle.
*The quote is from Jurassic Park, but you knew that.
It's been a few weeks since I posted last. The biggest reason being that I've had a lot on my mind, and I haven't been sure which thoughts should be shared next. Living with this disorder causes me to never be short on emotion. It's overwhelming. My tendency to ramble is EVEN GREATER during these times, and I don't want this blog filled with my vapid ramblings. I also feel a responsibility to "post positive." Mama always said, "If you don't have something nice to say, don't say anything at all." The truth is that I feel completely broken at times while having confidence in knowing that our God is perfectly sovereign in all of this.
The title of this post was inspired by an article a friend of ours posted on facebook recently. It was written by a mom of a child living with Autism. I could relate to her perspective completely, and I felt comfort in knowing that I was not the only parent heartsick over the fact that the children around us are outgrowing our boy.
In an endeavor to let the boys run out some of their energy and have a little added social interaction, I have been taking them up to the Christian school where our oldest two kids attend. Josiah and Jalen both attended school there last year, and it has been nice the past two weeks to visit a couple of days during morning playtime in the gym. Seeing Josiah around children his same age causes me sadness that I have difficulty explaining. I'm sure I'll have this same emotional struggle as Jalen gets older too, but Jalen is still babyish. I'm sure the fact that Jalen is so smart has helped to delay these feelings also.
But it's a different story with my precious Josiah. Seeing him run around with the other five-year-old kids and knowing that they are all potty trained, and talking, and independent, makes me long for these same things for my boy. They will soon be standing in cap and gown at their kindergarten graduations, receiving their diplomas as their parents and family watch with pride. There will be no reserved seats for us on that night. These children will move through elementary school, and high school, and college. They will marry someday and have children. I would be lying if I didn't admit that sometimes I long to stop time. I long to give my precious boy time to catch up. But time just keeps ticking by, and Josiah's development continues to stay frozen.
I allow myself these moments of sadness. The pain is a reality that is best dealt with head on. And, when the moment passes, I see the beauty of my child. He has the most angelic hazel eyes that look deeply into your soul. He loves unconditionally. He has no concept of hate or prejudice. He has never spoken an unkind word. I'm his Mama, and he's my boy. I love him, and I am profoundly proud of him. I pray that I never lose sight of his beauty. The pain of other children outgrowing my sweet boy will always be there, but the joy of him being mine forever will be too.
I don't know if it's the same thing as worrying, or if it violates the admonition to think only on things that are true, but I've been running some scenarios around my head and it's disquieting. I know how people are. I know how much they assume about other people, how they impose their own perspective on others actions and how they project their preconceptions onto reality. I know that my motives and shortcomings will be judged without any rebuttal from me, even if no one but me knows my motives and even if my perceived shortcomings are beyond my control. So what will people think if or when my kid gets run over in the street in front of my house?
There were ten security things I wanted to post here, and I crossed three off my list in Part 1 and four more in Part 2, leaving for today's post the door chains, the special gate latch and the lock on the TV cabinet. Oddly enough, we had a breach yesterday involving two of those three. I left the house early with Jo and the baby to run to Walmart for wipes and snacks. The oldest two kids were at school. Christy went to the restroom leaving Jalen in the living room swinging. A moment or two passed. There was an urgent beating on the front door. When Christy opened the door a woman was standing on the porch with Jalen whom she had found playing in a puddle in the road a couple of doors down. Her minivan was idling in the street where she stopped it. She was undoubtedly troubled at finding a small, wordless child in just a diaper splashing in the water at the bottom of a sweeping, downhill, right-hand curve of asphalt. She did us a genuine kindness in bringing him home. We were fortunate that it was someone who's kids have visited Jack and Liv here and knew that Jalen belonged at this house. It could have gone much worse in many ways.
It's worth pointing out that none of us have ever seen Jalen unlock and then open the back door before. I've seen him playing with the knob lock on that door, and I've seen him unlock the deadbolt on the front door, but it takes some torque to get that back deadbolt to turn. And I would've bet money that he couldn't get them open even if it was unlocked. It's French doors and there's a good bit of pressure on them, to make a good seal I suppose. Olivia has to put some oomph in it to get it open, and Jalen is half her size. And how is it that he is so crafty, so opportunistic - he didn't try the door while I was home or while Christy was in the kitchen making lunches or while she was in the living room getting Jo dressed. He saw that she was out of the room and he was out of her sight and he made a break for it. It's also worth pointing out that the puddle he was in is about halfway between our yard and the neighbor's pool. And as far as I've been told, the number one cause of death for Autistic children is drowning. What if there had been no puddle for him to be distracted by?
And we can go from that "what if" to a lot more of them. As I said, a lot of disquieting hypothetical scenarios are born from a scare like this. What if he'd gone to the right out of the yard? Rogers Road is just four doors up. The cars go pretty fast down Rogers Road, and it's not just our neighbors that use it. What if he'd been hit? What are the odds for a forty pound pedestrian against a two thousand pound automobile - even at twenty or twenty-five miles an hour? What if the person hadn't known of us? What if they'd taken him? What if they'd called the police? The police are not the arbiters of justice, they are not the ones who decide if a child has been injured due to negligence, they are the ones who put the child in protective custody and the parents in jail until such things can be decided. What if we couldn't explain how smart and sly Jalen is when he appears so vacant and clumsy? What if we couldn't convey our genuine surprise at him being gone since he's been gone before? What would people say we should have done? Maybe not to our face, but in their homes and over their meals with friends and when they tell the story at work or in the church hallway - what will they assume? They'll feel bad for us, but what will they question about the way it happened? Which of our many minor shortcomings will be cast in a new light by some major perceived failure? And on and on.
It's a short trip from this kind of speculation to out and out fear. A lot of times we call fear by it's cousin's name: worry. But it's still fear, and fear is the opposite of faith. Both of them are attempts at seeing the future, but fear reaches toward the future expecting to find something bad whereas faith expects something good. I learned that from Zig Ziglar. Faith is not an unreasoning optimism or a carefree ignorance. It learns from experience and adapts to the struggle. Faith says a prayer of thanksgiving that something worse didn't happen and then steps-up its game to make sure something worse doesn't. And faith expects that if it learns from this present trial, then there is nothing of it to fear in the future. Faith hears the "what ifs" and responds with a reminder of what is - that God has been good to this family every single day.
