- 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.
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.
