Wednesday, March 13, 2013

Essential Oils for My Son with Autism

Life seems to be traveling at a warped speed of light these days. Some how today I have a few moments of time to myself (which never happens) to write on this here blog that never gets used anymore.

Between cleaning the house, doing laundry, and taking care of the two boys, making meals and teaching Carter everything (he's a sponge) I feel my days are pretty packed. Oh and I have been running 3-4 days a week. Yeah, life is busy. Just like everyone else.

I thought I would write today about another symptom of Aspergers I didn't really think would effect me or my delightfully bright little glasses wearing friend. Anyone who knows us or has read this blog before or has hung out with Carter in the last few months... has noticed Carter's intensified anxiety. My little boy didn't use to be like this. Or at least he wasn't able to communicate it in words until the last 6 months. Anxiety has gripped my son like the giant squid monster clings to the boat as it sinks in the ocean. And this anxiety is taking my son down with him. Unfortunately its not only during day time hours. Its now in his dreams.

My son was always been an amazing sleeper. From the age of 4 months he was sleeping 12 hours straight through the night. And more when he was growing. Over the last few months my little boy when going to bed would fight (tooth and nail) with going to sleep. He required his Mommy to, in his words, "Mommy snuggles??" And it wasn't just to lay him down, tickle his hairs and give him a kiss. It was the leave the Lego flashlight on all night, let me sleep with all my school buses, airplane and a hot wheels car of my choice and mom's arm around me snuggle. If I got up to go he would scream. If I just left he would scream. If I slipped out after he fell asleep he would scream. This was never going to be ok by me. My son needs to learn to be independent (as do all children.) I don't believe in rocking my children to sleep every night. I don't believe in sleeping in my kids room all night long. I just don't.

This pattern went on for weeks, months even. We got to the point that if I was busy, Dad could snuggle him. But then it transitioned to once Dad snuggled Carter, Mom needed to come in. Then the worst of it hit. He started to wake up in the middle of the night. Every.Single.Night. I would have to go in there again in the dead of night and try to coax him to sleep. Sometimes it would only take 15 min. Sometimes it was 3 hours. Did I mention his screams would then wake up the baby? A terrible cycle indeed. I finally got to the point that enough was enough. Right? I firmly believe that parents with children of special needs need a high five or some sort of pat on the back for how hard and mentally, physically, and emotionally draining it is (even with the reward of having a super smart child.) So I turned hippie.

The best way to describe what I do to help ease my child's anxiety is this: Essential Oils. When you are faced with the option of medicating your child, or naturally helping your child... which would you choose? For me? I chose the natural way. ** Disclaimer: this may not be for everyone and I totally understand that. I just know that this has worked for my child and me. So who can complain if it works?

My Mom is the one who has mentioned that there are people testing essential oils on children with Aspergers, ADHD, Autism the works. This isn't a cure. (Although Ed has said many times this should be called a cure for Aspergers. Joking. But kinda along the line.) I have friends who also have been using the oils to help calm and focus their child. When a child can't sit still and is over sensitized or overwhelmed by their environment, it effects everything for them. And sometimes you as their parent. Carter's fear and anxiety were definitely effecting me. So I began putting a special blend on the bottoms of his feet, rubbing it on his spine and over his heart. The first night he went to bed with a light tickling of his hair, a big hug and a kiss and fell asleep within minutes. No fight. He did wake up in the night and I put the oils back on and he fell asleep within 20 min. On his own, without me in the room. The next night he went to bed calmly in the same manner. He slept through the whole night that night. And the night after that, and the night after that. Its been over a week since we have tried these oils at night. And now also in the day. I still have had to get up with Carter a night or two but I put some oil back on his feet and he's asleep within minutes. During the day he doesn't run as wild in circles over and over again. He's even being more social with his baby brother. Its still early in the game, but I say we have a win here folks. It may not be a cure, but darn it. Its making my life quite a bit easier. So I will accept my new title of hippie and run with it. Who knew using oils that have been around and used for thousands of years would be a helpful tip in raising my child who happens to have Aspergers?

Sunday, January 27, 2013

Just One Day

Today was just one day.

I realize there are going to be many more days like today. Days where I feel my knees buckle from underneath me and I fall apart. Most days I can take it. Most days I am optimistic, I can see the good sprouting from any of the difficult. I choose to see the brilliant, the astounding abilities, the warmth, the kindness, the absolute happiness from within. But there are some days regardless of my predetermined attitude, I see a peek into the possible future. If I am positively honest with you, it's these brief glimpses that catch me off guard, pushing me closer to my breaking point.

Today we went to run some errands. I started my conversation with Carter as per usual. I let him know the order we would be taking them. Bank, library, and grocery store. I then explained what I needed to do at each one. Deposit money, drop off library book, exchange some groceries and return a DVD at a Redbox. After each stop, Carter chirped from the back seat ticking off the items completed. He loves to go on car rides, he loves to go to the grocery store even more.

Perhaps the outcome came because I didn't put him in the grocery cart like we do every other time. Perhaps it's because we usually return the Redbox DVDs at locations that have an outside kiosk and he can stay in the car, perhaps it was the lady in front of us having difficulty getting her credit card to work when trying to checkout three separate times. This time, it was different for us. When we parked ourselves in line waiting for the woman at the Redbox kiosk to check out her DVDs the machine began to whir and function as all Redbox kiosks do before the DVD is produced in the slot for you to take. The gears and wheels within the sturdy box produced their sound as they readied to do so again. Carter took note of the sound.

If you are familiar with Aspergers Syndrome, these children have heightened senses and to different things. Its been described that each sense is turned up like the volume on a radio. Each person is different in what is painful, terrifying, pleasant, and irritating. We are still discovering what is difficult for Carter to manage and what can literally bring him to his knees or to tears.

Today, at the Harmon's Redbox location we found one of Carter's sounds that induces terror in him. As a mother, watching this happen, completely unaware that it was going to occur is enough to shake any countenance. When Carter is fearful of a sound or panic attack happens over something he is observing, his common reaction is to leap into my arms crying, "Mama, I scared." Like he's just seen a monster or something. He'll bury his head in my chest or my neck trying to cancel out whatever is scaring him. Today he did just that. As I was balancing my sons 35 lb frame, the groceries, my wallet and the DVD I had to put something down. Carter was the one making it difficult to stand upright so I went to put him down. Timing wasn't on my side because at that precise moment the Redbox machine began to whir with movement inside getting ready to deposit the DVD for the woman in front of us. Carter screamed because the sound scared him and clawed at my arms and legs trying to get back into my arms. I stooped to his level to explain to him what was happening in the machine and not to be afraid, Mommy was here and I wouldn't let anything happen to him. He was shaking he was so frightened at this point.  I held him close and said, "It's OK.  Mommy's here." Over and over. This didn't solve his problem. So I carried him the whole time while returning the DVD and letting him cling to me the entire time whispering our mantra to him. He's heard it so many times from me he begins chanting with me, "It OK. Mommy here." In his sweet little voice. When we went to leave he couldn't run fast enough away from the machine. It's moments like these that break my resolve. I save my own personal melt down for when he is in bed, asleep and away from me so I can have my own moment of weakness. My own fears realized. I don't know if there ever was a mother that could handle discovering moments like these that are so routine and so common in our world, so mundane, and find their child shaking in fear looking to you for protection... Who wouldn't start to break their resolve over time?  My sweet tender Carter is worth fighting for and doing everything in my power to help him over come these challenges in his life to exist with them on a daily basis. But to know you now have to work consistently at helping them push past this barrier every time you are confronted with it to the point where they can stifle their fear, suppress their reaction so they don't resort to being a hermit... Its overwhelming on my best days.  I realize why my back is constantly tight with cringing muscles. I'm preparing and expecting the worst always.  I know over the course of the next few weeks Ed an I will take special trips to the store to have Carter visit the Redbox machine, help him touch the screen and select movies, waiting for the machine to push a DVD out. It might take us 3 times or 15 times to get him to the point where he won't be physically cringing at the sounds and be able to pass by the machine with ease. And it's worth it. To help him feel more comfortable in this world. But this is where I get down. This is where I feel the impossibly long hurdle I have to jump. Because its not just this one instance, it's hundreds of things that we are working with him to acclimatize him to his world around him. And there will be hundreds more. I would love to not have to work so hard with my son to help him go through the grocery store without being afraid, or play with Lincoln's toys without him hiding in the kitchen because a squeaky toy is too scary to be near. I would love to go to a play date with 3 other children and not have him spend 1/2 of the play date laying in my lap overwhelmed and fearful of having too many kids in the room.

On the opposite spectrum, about a week ago, Carter shattered one of his fears. When we moved back to Utah in October 2010, I flew home with Carter while Ed, my mother-in-law, my father and my baby sister moved all of our belongings back. For the flight I had purchased a squeaky monkey toy that when you squeeze him the monkey squeals. He loved it, it worked for the time. Long ago we packed that toy away. Until Lincoln was born. Then we pulled out all the baby toys out. Behold, Lincoln found the monkey. One squeeze of that monkey sent Carter running into the kitchen crying for the monkey to be, "All done!" I asked him to come to me and he picked it up by the tiny tag at the bottom and threw it into Lincoln's toy box. We danced around this game of trying to get him to handle the monkey for months. Finally 2 weeks ago, I asked Carter to squeeze the monkey really hard to try to break it. (It won't break, the thing is indestructible. ) He tried it. His squeeze was hard enough that a quick squeak was all it gave. Carter felt power over the squeak. He did it again, and again. After a week of this, he started to bounce the monkey on his leg, letting off small loud squeaks. Slowly we were able to help him move past his fear and learn to understand the toy, that it was more than just it's squeak. He now will play with the monkey willingly. One down.

I tell you this to understand that even despite my down, sad and frustrated days, there are break through moments and I see how much impact as parents we can make on these children's lives. On his own, Carter might be able to overcome some of these issues, but together we are able to teach him to understand the parts of the world that are scary, overwhelming and anxiety stricken. Whether you have a neuro typical child or you have a child with cerebral palsy, our job as parents is to guide, teach and give these children the best chance at life we can.

I am not too proud to admit I cry about Carter's state of affairs. I cry about his future. I cry that I feel this challenge is too big for me. That I won't make it and somehow I am going to fail my boy who looks to me for so much guidance and peace over things he doesn't understand   This stuff I probably don't tell you. (Unless you are Ed, he is my best friend and I will always tell all my deepest, darkest thoughts.) But what I will tell you today is there are amazing triumphs that come with my Carter. For every huge obstacle, I find an equally huge strength. I find a kindness that  supersedes all others. Did you know that Carter has one of the sharpest memories I've ever seen? I have a partial photographic memory. Carter's balks at my poor effort. Did you know that Carter can recite whole books to me? He also has memorized 30 of the 50 states and knows where all of them belong. He has started learning the capitals of the states as well. This happened in just one week. He can complete his map puzzle in 3 minutes. Did you know that he can read? He has the most incredible preschool teacher that simply adores him and says every time I speak to her, "Students like Carter are why you choose to go into the teaching profession." Wow. What do you say to something like that?? Did you know that Carter instinctively came with a deep and protecting love for Lincoln? He can recall full conversations we had weeks and months ago. And will recite them to his favorite audience: the peep hole in our front door and the red light that blinks off of our security system monitor.

There is an incredible amount of beauty, love, and small gifts of special people placed into your life when you are faced with raising a child with an entirely different mapping of their brain. Indeed, I am grateful for this. I am grateful for the kind people that don't stare at my child as if there is something odd with him, instead at how smart, bright smiled and happy he is. I am constantly reminded there is a million levels of good in this world, not just all the bad you see on the news.

Saturday, December 8, 2012

Temple Square {2012 Edition}

We went to Temple Square.

I fall in love with it every time.

Having been married there it brings a special feeling for Ed and I every time. And showing Carter where his Mom and Dad were married rings a special treat for me.

Carter loved every minutes. From the stroller ride, to running across the street, to the lights, the baby Jesus, the quick run through City Creek. It was perfect.

Lincoln didn't make a peep the whole time. He was a dream baby, stayed awake and wide eyed the whole time. What special boys I have.

A sentiment that bears repeating: Temple Square at dusk is phenomenal!

Friday, December 7, 2012

Christmas Time {Photo of the Boys}

A miracle. The boys are napping. At.The.Same.Time!

So I decided to blog.

We took photos of the boys this morning. My typical smiling little baby wanted nothing to do with smiles this morning. Lets blame the teeth. However, my little boy who never wants to touch other people let alone smile for the camera gave me lots of grins. I'll take the rare shift.

Here are some of our favorites.

News on Carter: He starts school next week. SCHOOL! With a bus ride and teachers, the whole gambit. I am so so grateful for this early intervention program. Some of my friends have expressed interesting feelings on wishing their child could go to preschool sponsored by the school district. Let me assure you, these children are not learning the same things a neurotypical child would learn at your everyday preschool. His studies will consist on learning to speak clearly and in sentences (most children Carter's age already know how to do this. They learn on their own how to do so, where Carter has to be taught how to say every single sentence, in every single situation.) They will be learning how to stay focused for 20 minutes at a time for a project. Carter can't sit still for 5 minutes just to eat. He has to get down from his chair and run around in circles to release some of his anxious energy. Every day. Every meal. He will also work on using generalities in objects. Such as being able to look at two different type of animals and being able to discern which one is larger. He can't do that. He will also learn how to look at a picture of say a person reading a book and instead of seeing objects in the picture (such as a clock in the background or the book the boy is holding), he will learn how to see the picture of the boy reading a book. To sum it all up, Carter needs to be trained on how to learn like a neurotypical child instinctively learns from their environment. It takes a million gallons of patience, in depth explanations, constant reinforcement with everything he does and says on a daily basis. Its a load of work, but in the long run, well worth the effort put in.
Carter understands and processes information in the world around him so very differently from the way you or I do. A lot of you have asked me if Carter will grow out of a lot of his tendencies. Let me explain for the masses right now: He will NOT outgrow these tendencies. He will be need to be trained on how to turn down his tendencies, but the need and the want to do them, will always be there. Much like breathing is a normal action we don't even think about, it just happens. Carter's flapping and kicking of the feet, his running in circles or back and forth, his constant reassurance of what is happening, are all instinctive. Wrapping your head around this can be difficult. And frankly, you probably won't even see some of this due to the fact you need to see Carter over a course of a whole day to see what we go through all day long. Its exhausting, overwhelming and down right a lot of work. But if you saw how his face lights up when he realizes how he has communicated his feelings or his wants to us for the first time because he didn't know how to put into words before, and we just taught him a sentence to get this accomplished. Its priceless. I realize now how very different Carter is from other children his same age. How different he learns. How much of a sponge he is to intellectual intelligence but basic common aspects of life that children just pick up instinctually, (such as speech, and sentence structure, and imaginary play) has to come at such hard work and repetition to Carter. Please keep in mind, I am not sad about Carter and our recent discoveries on his learning abilities. Its actually fascinating. Each day we are discovering how much Carter knows and how brilliant his mind is. He is incredibly smart. He just doesn't know how to speak his intelligence. I am not complaining about the work we have to do to help him reach the level of a normal 3 year old. I just want those of you who are interested to understand what it is we are going through.

Saturday, November 24, 2012

Second Opinions

This week was an incredibly overwhelming week for us. We started it off with 2 HUGE appointments for Carter. First Carter had his Preschool Evaluation for the Early Intervention Program in Jordan School District. Good news: He qualifies. Great news: The teachers who evaluated him loved him so much they both wanted him in their classes so he gets to split his time between the two. He will be attending 4 days a week from 11:30 am - 1:30 pm. He even takes a BUS to school. I don't know if I am ready for that. Nor do I feel Carter is ready for it. We will have to see how that goes. 
The two classes he will be going to is half the week will be the Autistic class. Half of his class is non verbal and Carter's intellectual capacity supersedes the class but what he lacks that the class will help him is attention and focus as well as speech. The other half of the time will be a typical special ed class that will help him develop his social skills. 
I know this is what Carter needs right now. How long this arrangement lasts, we will see. But for right now. I am content with the outcome of this meeting. 

On Wednesday we met with a Doctor at the Children of Special Health Care Needs clinic. This is the doctors appointment I have been biting my teeth over for WEEKS. I needed this appointment for me to find the boundaries for Carter's learning ability. I have not been satisfied with the expectations the pediatricians office has given us regarding Carter. There is so much that is unsaid, undiscovered and unknown about Carter. After the doctor asked us 50 questions and observed Carter at play and discovering his tendencies, he feels he is 99% sure that Carter has Aspergers. If you have ever seen the show Parenthood, Kristina and Adam have a son named Max in the show whom also has Aspergers. For anyone who has seen this show knows this family has seen challenges in raising this sweet boy. Keep in mind, every child on the Autism Spectrum Disorder scale is different with their symptoms. So comparing Carter and Max would be impossible. But there are similarities and every day we are seeing more of these similarities. 
The 1% that is holding the doctor back from diagnosing Carter with Aspergers is his speech. One common absolutely necessary symptom of Aspergers is their progressive advanced speech. Knowing this, he explained that half of the children with Aspergers have advanced speech skills beginning at 10 or 11 months of age and the other half are practically non verbal until the age of approx. 3 years 3 months. Why the specific time frame? I don't know but he says its pretty consistent. Carter is 3 years and 1 1/2 months. Since turning 3, Carters's speech has grown leaps and bounds. So many words and so many clearly pronounced words have entered into his every day speech. Do I think he could be speaking like an adult in a month and a half? I don't know. I think I could never predict my little boy and his abilities. So we shall see how this transpires. As it stands Carter's technical diagnosis is PDD-NOS which is Pervasive Development Disorder- Not Otherwise Specified. Not to go into too many specifics, but Carter doesn't fit most of the symptoms of this diagnosis. His symptoms fit Aspergers, except for speech. As he listed off all of the symptoms, it blew my mind how accurate it is into Carter's little world. I can't even describe how exciting it was to hear my son fit so perfectly into a category and even more so that there are definite options for him that will help shape and mold him for the future. We have a follow up appointment for next July to confirm if his speech is in alignment with the Aspergers diagnosis. I have gone through a whirl wind of emotions since this doctors appointment. Feeling like he still doesn't fit anywhere and what if he doesn't fit into the Aspergers diagnosis by next summer where will he belong and with knowing what the doctor thinks right now is enough to plan out our decisions for Carter for the next year.... and around and around I go. I've done my crying. I've felt overwhelmed. I've felt unsure. We've prayed. We've discussed, and discussed again. We know we are making the right move....for right now. 
Talking with the doctor, and looking at what type of boy Carter is. We are going to plan the next year as if he does has Aspergers. We are going to bypass any therapy. We are going to turn down private school options. We will work aggressively at mainstreaming Carter. Aspies (as the community calls themselves), are known for their anxiety, and for the social delays. The difficult task at hand? Most of the "therapy" for Carter lies on Mom and Dad. I can't tell you the number of times I feel like I am going to buckle under the incredible amount of pressure I feel right now. With so much responsibility landing on Ed's and my could we not? Despite what I may show the world at large, most days I am fine and I am pushing forward for Carter, for his progress, for his future. The other days, I'm sad. I cry. I curl up into a little ball against the wall and wait. Some days I wish I was stronger, a better mom, a trained therapist, anything to help Carter's situation.  But I'm not. I have only the skills I've brought to the table. So we will begin teaching Carter how to make eye contact with people. We begin teaching Carter scripts for every day life. We begin to teach Carter how to talk with other kids. We begin a whole new chapter of our lives. 
And we are jumping in head first. 

Lincoln is 6 months

My little boy is growing up waaaaay too fast. Its beautiful and saddening at the same time.
My sweet little Lincoln. You are such a kind, happy, patient and loving little boy. You are such a great eater, you know exactly when I need you to be at your best, and yet my heart grows a bit larger every time I look at your cute chubby face. We are a better family since you've arrived.
Happy Birthday sweet boy!

Monday, November 19, 2012

Autism Awareness in Utah

About a week ago Carter and some of his new and old friends were on the news! Channel 5, 13 and the Deseret News ran an article on Autism Aware. If you are interested in the organization and what they do, feel free to check here.
Carter got to meet Channel 5's Carole Mikita and eat a yummy meal at Brio's restaurant. Carter has never been to a fancy restaurant because he gets so overwhelmed with his environment he is running all over the place (usually in circles) and jumping up and down in his seat. He did a little bit of running around and circling the table. He was much better than he normally is when I am out with him on my own and with Lincoln. Don't get me wrong, he was the one child to have a melt down, and head butted me in the face.
Lincoln got a lot of love from the other mom's. I am so so grateful one of my best friends T was there with her son to help me with the chubby one.
You can read the article done by Deseret News here, and watch the segment aired by KSL 5 News here, and Fox News here.
We are so grateful for the presence of such awesome programs to make this new transition for us a bit easier.