Five Year Anniversary: A Renewed Spirit

Five years ago yesterday some friends were victims of a home invasion. Two armed men invaded their house at dinner time. The couple had three children. The husband was able to attack one of the invaders and was wresting on the floor with him and he was shot. After the shooting both the invaders left the house and were never caught. My friend who was shot spent an extended stay in trauma ICU and survived the attack. This family encountered extensive trauma from the incident and moved immediately to a safer location.

Doing what true friends do, I came to their immediate assistance. I did all I could to help. I packed their things, moved them into storage. I recruited people to help paint, rip up carpets, clean, handle contractors. A little of anything and everything. At first, it was just about love, giving back and doing all I could to help this family in crisis. But SHOCKINGLY, it developed into so much MORE.

As I was working on the house and all that needed to be done, I remembered my own traumatic history. I was injured on the job (many years before) working as a technician in a respiratory ICU unit. I was three classes away from completing my nursing degree. My husband and I had a plan that when he graduated with his associate degree I would return and finish my degree to be a registered nurse. After receiving inaccurate information from a nurse I encountered a back injury turning a 580 pound patient. It ended my future in nursing forever. I was devastated. The only thing that topped my devastation of never being a nurse was my sons diagnosis with autism.

I spent months full time, many days 15-16 hours a day working on this house getting it ready to be sold. Spending quiet time with my own thoughts was very enlightening yet revealing at the same time. So many around me didn't understand what was happening. At the time I wasn't sure either. It was all internal. The Lord was working inside me. My viewpoint and my focus were changing. I WAS CHANGING. Once again from that moment my life has never been the same.

My husband and I had four kids when we married and the oldest was only five. Two step children and two biological children. My youngest Caleb was born three weeks after we married. We had a ready made family. With lots of activity all around us all the time. Life was busy. After my sons diagnosis with autism at two and a half it became downright hectic. Dealing with therapists, schools, doctors, educators, behavior specialists. It kept me hopping for a long time.

At the time when I was working on this house preparing it to be sold my son affected with autism was finishing his junior year in high school. He was doing fabulous. Our three other children had already graduated high school and two were in college. Suddenly my life was not as hectic anymore. For an autism mom one would think it would be a welcome time in life. For me it wasn't. I was suddenly left without a purpose. I felt lost. Autism was such an all consuming presence in my life for so long.

I found myself standing up on the ladder with paint brush in hand. Asking myself a bunch of hard questions. What do I want for my life? Is there anything that I feel about passionately as I did for nursing? If so, how can I put that to use? What do I need to do to prepare for it?

At the time when my son was diagnosed in 1996, there was little information and research done on autism spectrum disorders. Information was not as readily available as it is now. With the diagnosis rate then around one in 500, it was unlikely to find another parent going through what I was going through. It was decided in that empty house surrounded only by a multitude of pain cans, paint all over my clothes and even stuck in my hair. I was going to help families with children affected by autism. This was my new mission. I NOW HAD A NEW PURPOSE.

One day after a long days work on the house I came home and told my husband that I had decided to go back to school. He was shocked. It really did come out of nowhere. In January 2011 I started school at Empire State College majoring in Bachelor of Science: Human and Community Services. I also enrolled in the NY Partners in Policy Making Program at Cornell University hosted by the NY State Developmental Disabilities Planning Council. I also attended lay advocate training to learn how to advocate so I can assist other parents. I grew as a student and future professional. I have had some excellent opportunities that I can only attribute to as a sign from the Lord that this is exactly where he wants me.

One of the requirements for my degree was participating in an internship. Most students at my school do their internship locally. I had an opportunity to complete mine with the Government Relations Team at Autism Speaks. I participated in walks all over, and assisted in the background in research needed to pass legislation. I even had the opportunity to work on the Light it Up Blue Campaign. Along the way, I met some incredibly, amazing, inspiring people!

I finished my Bachelors in Science in July 2013 in Human and Community Services. I am currently a Masters of Arts student pursuing a degree in Social and Public Policy with a Concentration in Nonprofit Management. I will graduate in June 2016. My husband and I will be graduating together. I will be completing my Masters and he will be completing his Bachelors.

On this anniversary I have some very mixed emotions. Remembering the trauma that this family experienced still makes me emotional. I had a front row seat. At the same time it also changed my life for different reasons. I now have a renewed spirit in my life and my future is bright. I am not sure where life will take me from here. I do know that I WILL be helping families who are affected by autism. I also know it will be exactly where the Lord places me. Find YOUR purpose. Who knows where life will take you!

Welcome to Holland

I have encountered family and friends that try their best to understand the world of autism in which too many of us live in. I struggle on how to appropriately describe this experience of what I refer to as "the world of autism". I took a class a few years back and a poem was used in this class to describe life as a special needs parent. I find it so appropriate for those that struggle to understand. The poem is called "Welcome to Holland" by Emily Perle Kingsley. I am posting it today in case there are some of you are trying to grasp this world with a new diagnosis or attempting to explain it so someone else.

WELCOME TO HOLLAND

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Weighted vests

Caleb has always sought out different sensory items as he was developing. If we happened to be at a park, instead of playing like his other peers he would sit down on the grass and spend time rubbing his hands across its blades. For quite some time we thought it was odd. We would be in wonder at what he would do next. Once he grew tired of the grass, he would go to the nearest tree and just rub his hands up and down across the bark. When we left the park each time he was much calmer and more peaceful than when we had arrived. Caleb had been a hyperactive child since birth (to the extreme of needing Ritalin at two and half in an effort to ensure his personal safety).

Sensory issues was one of the many things my husband and I discussed as we sat across the table at his annual IEP meeting (to determine what services were needed). The team agreed that a trial period of a weighted vest would be appropriate. The trial period would include Caleb wearing a vest with built in weights. It is been long established that deep pressure helps with "reorganizing sensory stimuli" in autistic individuals as well as those with a sensory disorder. The rule of thumb in using the vest is 20 minutes on, 20 minutes off. This should be overseen by a certified occupational therapist. Twenty minutes is not a lot of time. Many times the teacher, or aide will remove the vest. The occupational therapist would return to put it back on after the allotted time off. What they do NOT tell you is the dangers of NOT removing it in the designated time.

One day, I forgot to give Caleb his medication before going to school so I hopped in the car to scoot over to the school and give it to him. I signed in at the school and was directed towards his classroom. When I joined Caleb in the classroom I was distraught by what I saw. My hyperactive, happy go lucky child was lethargic and had deep circles around his eyes. I became suddenly very concerned. I asked the staff what time the vest was put on, and what time it needed to come off. Apparently the teacher and aide became distracted by the flow of the classroom (which had all special needs in attendance). The vest was 25 minutes late coming off. I immediately took the vest off and scooted him to the nurses office.

I was then informed with the dangers of these vests when not removed on time. Apparently, when the vest is not used properly it can cause an extreme drop in the bodies blood pressure. Caleb's blood pressure was much lower than normal. We sat in the nurses office for quite some time redoing his blood pressure every five minutes to ensure that it would return to normal in a decent amount of time. Then I took him home for the day.

From that point on I refused to allow that method of sensory therapy to be used on my son. In addition to taking Ritalin for hyperactivity my son was also on Clonidine as well to curb his hyperactivity. Clonidine is used in adults to regulate blood pressure. I am sure that the Clonidine in combination with the vest contributed to the event that happened. I was however, informed by my son's developmental pediatrician that this could happen without the medication.

This event caused me to ponder. What would have happened to my son if I had NOT gone there that day? Would the staff notice before he passed out? Was the staff even informed about the dangers of using these vests and how critical it was to be removed on time? If I was never informed how do I know they were?

I have seen parents with children like my son buy, use, and even make their own weighted vests and blankets. I cringe at the thought of that very day when my sons physical health was endangered by using the very things other parents are striving to use. I was never informed of the dangers and wonder how many out there live under the assumption that these items are good for our children. How many of them have never been informed of their dangers?

I am hoping this post is informative and helps get the word out. There is a real benefit from using these items if used EXACTLY as directed. Please know that if you have a houseful of kids, work from home, or have any other major distraction that could deter you from removing these items on time DO NOT USE THEM! I pray that there are no children harmed by distractions that life so often gives all of us.

I went to using the personal massager that worked better than the vests. For more information on the use of the massagers please refer to my post on sensory therapy. In all things be informed. After that incident I became more informed than the FBI when it comes to therapies used for my child. I hope you will as well.

An InLinkz Link-up

https://www.facebook.com/groups/1427560947494406/permalink/1478636342386866/

Sensory Therapy

When Caleb was a toddler there were certain sensory issues that we noticed. He did not like to wear socks. He would wear them with shoes if he needed to but the moment he walked in the door to our house his shoes and socks came off as if his feet were on fire.

Caleb also was very picky when it came to foods he would eat. He was very restrictive on what he would touch or put in his mouth. If it was a casserole mixed with a bunch of ingredients (like macaroni salad or three bean casserole) forget it. There was no way he was eating it. He did however like hot dogs and chicken. For breakfast it was instant oatmeal or pancakes. Lunch and dinner of course was the hot dogs or chicken.

I had never had a child so picky when it came to food. After my sons diagnosis with autism I began to understand about the nature of WHY he was so picky. There is a condition called Sensory Integration Disorder (that commonly occurs with autism, but can occur without autism tendencies) in which the bodies ability to absorb and make sense of environmental stimuli is unusual. The good news is it can be treated. It is usually treated using a method called Sensory Integration Therapy.

When Caleb was finally placed in a birth to three class his occupational therapist started this therapy with him. Up to that point I had never heard of this therapy before. She had a row of three bins in front of her. Each day the bins were filled with different textured items. One day it was dry oatmeal, pudding (made) and cotton balls. Each day there were different items in the bins. She would take the hands of the children with sensory issues and place their hands in the bins forcing them to feel and experience the different textures. For many children this process was not pleasant. I am sure my son was one of them. As the children experienced these textures over and over, they became used to the feel of them and it bothered them less.

My son went through this therapy for the duration of the school year which was ten months. At the end of the ten months, suddenly my son was open to trying different textured foods. He was not restricted to a small amount of foods any longer. Still to this day at almost 21 there are few foods he will not eat. That was one aspect of our life with autism that was much better.

Another area of need with these "sensory kids"  is a sensory diet. These children have problems organizing sensory input from things around them. Certain sensory exposures that make processing sensory input more effective. Some parents use couch cushions pressed against their child as a form of deep pressure. Others have used a brushing technique where a small bristled brush is rubbed up and down the arms and legs. These forms of therapy are effective because it helps "reorganize" the sensory things around them that their body can not make sense of. If they do not get a way to "reorganize" then many kids have behavioral issues as a result. Many affected by autism throw temper tantrums or even become aggressive. My son used to smash his head into the  wall, punch himself in the face or throw himself violently onto the floor. We were terrified he would end up with some form of head injury.

My husband and I did the couch cushions using deep pressure, and even did the brushing for a while. One day, his occupational therapist suggested that we get a portable hand massager that vibrates. We purchased one and started using it up and down Caleb's legs and arms just as we had done with the brushing. We would do this therapy several times a day. Caleb, (then around five years old) would realize how much better it made him feel. He would start to seek out the massager and use it himself.

It was the most wonderful thing anyone has ever suggested for my son! It was portable, and was able to be packed in his book bag to go to school. We had it written in his IEP that he could use it in school and that's exactly what he did.

Since that glorious day, Caleb never has hit his head against the wall, hit himself, or had any major tantrums. Whenever he got to the point where he was overwhelmed, he would reach for his massager and all was well with the world. I am not sure if the occupational therapist ever knew the major impact that this simple suggestion had on our life.  I will forever be grateful.

Autism Parents Version of The Night before Christmas

THIS WAS SOOOO GOOD.. I HAD TO SHARE IT!

Twas the night before an IEP meeting, when all through the house, every creature was stirring and running about. The assessments were filed in a notebook with care, in the hope that we’d get a one on one aide.

My son was having another tantrum in his bed, while visions of ABA therapy danced in my head; And I knew that I was out of my element since I’d never been taught any behavior strategies. When up in the attic arose such a clatter, I sprang from the room to see what was the matter.

Away to the attic I flew like a flash, tore up the ladder and then fell with a crash. I picked myself up, just as the light from above gave luster to my wife holding her stash. And what to my wandering eyes did she have but the behavior analysis thought lost long ago.

With this new data in hand I ran like a flash, scanned the info and sent out an email blast. The email was sent to the IEP team to consider the findings and help manage my son’s needs. My hands were both trembling and flailing about as thoughts of receiving help were brandied about.

Then came a knock at the door from below and I knew in a moment it must by Steve Nick. The advocate we hired had arrived at the door and more rapid than eagles he started pacing the floor. He discussed all our options, and then he whistled and shouted and called out their names.

Now OT, Now PT, Now Speech and Behavior Plan, On Counseling! On Parent Training! On Assistive Technology and Recreation Therapy! To the front of the classroom! To the use of an Aide! Oh there are still more options to be heard.

As we finished discussing his needs, we moved on to possible goal ideas. Then a wink of his eye and a twist of his head, soon gave me to know I had nothing to dread. He then spoke not a word, but went straight to his work and filled up a graph plotting the bell curve. As soon as he finished he turned with a jerk, and laying a finger aside of his nose, and giving a nod he screamed EUREKA and rose.

He sprang to his feet and showed us the data which proved our concerns were more than valid. When everyone was happy and thought we had a good strategy Steve Nick left our house with a bound. As he sprang to his car he gave me a whistle. As he drove out of sight I heard him exclaim a Free Appropriate Public Education for all, and to all a goodnight.
Author Unknown

Intuition at Birth

On October 22, 1993, after 8 hours of labor and a difficult pregnancy, my son was finally born. My husband and I did not know in advance whether our child was a boy or a girl, so we had names picked out for each. Caleb Hugh for a boy and Rebecca Norma for a girl.

After delivery of our baby boy Caleb, he was whisked away for the traditional weighing, examining, and wrapping in blankets. My husband then proceeded to go to the payphones to call family to share our good news.  He joined me shortly after, and the nurse brought Caleb into the room, followed by our pediatrician. He had a concerned look on his face. We became concerned when the words out of his mouth began with "I have something to tell you about your son..." We could not help but imagining the worst, every parents nightmare when a child is born.

The doctor went on, to explain to us, that Caleb was born with two toes webbed on each foot, two fingers partially webbed together on one hand, and two fingers completely connected on the other hand. "He will need surgery to correct it, but it shouldn't be complicated, and he will be FINE". We were relieved. I was fearing a heart defect and open heart surgery....

I was elated as every mom is when their child finally is here. I picked Caleb up, and held him next to me, in the traditional newborn hold. My husband was sitting on the bed next to me, and we sat there admiring this new life we had brought into the world. We looked closely at his little fingers and toes, especially the ones that were webbed. The bones were fine, it was just skin that needed to be separated. No biggie.

Caleb began to cry. As his mother, my first instinct was to hold him, rock him, talk to him. Assure him that everything was going to be okay. I tried breast feeding him, it made him cry worse. I tried holding and rocking him, he screamed. The nurse helping me in the room, was beside herself as to what to do next. That is when I noticed something significant. He did not want to nurse, or be held. He did not want to be TOUCHED. If I put him in his bed next to mine and NO ONE touched him, the crying stopped. If I picked him up and held him, or tried to feed him, his legs straightened like a board and body stiffened. THAT IS WHEN I KNEW... something was terribly wrong. At that time, I just didn't know what it was.

Needless to say, after two weeks of struggle trying to get him to nurse, we finally went to bottle feeding. Caleb just looked at us as if to say "what took you so long?" Most of his first couple years were a struggle trying to comfort him, getting him to sleep, and trying to keep him from injuring himself. We had to take him out of his crib at 15 months. We would find him stuck between the rails, or laying in the bed, UNDERNEATH the mattress with it laying on top of him. We really thought that sleeping on a mattress on the floor seemed much safer.

Keeping him in bed, being a chronic insomniac, was impossible. My husband and I would finally get him to sleep around 2 am most nights. At the time we did not have a car, and we both had to be at work at 6 am. In order to get to work on time, we had to get up at 4, get two kids ready, packed, dressed, walk 10 blocks to the babysitters house by 5, walk two more blocks and be on the bus at 5:07. This was our daily routine five days a week. We were exhausted. Caleb never slept. We were beside ourselves on what to do. Since his birth, I had this lingering nag inside me, that something wasn't quite right.

When Caleb was 2 and was not speaking a word, we became concerned. I took him to the pediatrician and shared my concerns with him. He listened intently. I had a good relationship with him, and not long before this, my daughter Brianna was diagnosed with a speech issue and was receiving therapy at preschool. Genetics on my side of the family was affected with quite a few speech impairments corrected with therapy. I asked him for a speech evaluation, and he complied.

I brought Caleb to the Rochester Hearing and Speech Center, where they did testing on him. Testing included fine and gross motor skills, adaptation skills (ability to do things for himself), cognitive (mental), and speech. After the testing was over, the professionals called us into a large conference room to share the results with us. I thought this was odd. I was expecting the results sent to the doctor, and he would call me.

My husband and I sat at this table with about ten different professionals around the table. it was rather intimidating. That is when my world started to spin. One professional was in charge, and explained the test results to me. Caleb was severely delayed across the board in all five areas. We asked what this meant. Their response was "this is an indication of Pervasive Developmental Disorder". When questioning exactly what that was, and what could be done about it. The lady responded with the words.."I'm sorry, I am NOT allowed to tell you". In my mind, I am thinking...WHAT? You tell me my child has symptoms of this condition then refuse to tell me? She continued.. "You need to see a developmental pediatrician". We scheduled an appointment at Strong Memorial on this date..(a month away). We left frustrated and confused.

We did not have a computer, so I went to the local library to find anything I could find on Pervasive Developmental Disorder. I found out, in the middle of a public library, that the room of professionals believed my son had autism. I broke down in the library, I was overwhelmed. MY HEART WAS BREAKING.

I shifted gears in the only way I knew. I was going to find out everything I could about autism, especially the form they believed my son had. I read magazine articles, took out every book I could find. It was 1996, so the information superhighway was not as it is today. Information on autism especially was scarce. Every book I read, every magazine article I read was outdated, information inaccurate for the time. I just did not know that at the time. Each thing I read depicted the worse case scenario, severe mental retardation, limited functioning, and basically hopeless. I fell into depression, suffering an emotional agony that few can understand. A feeling of helplessness, and hopelessness. An inability to do anything to help the child you brought into this world.

Several weeks later, the developmental pediatrician, Dr. Susan Hyman confirmed the suspicions of the Hearing and Speech Center. When asked about his life, what it would look like, would he be functional, ect...we were answered with an "I don't know". We left with an answer...but yet no answers. But we did in fact have a plan mapped out by Dr. Hyman. That is when our REAL journey began... OUR LIVES CHANGED FOREVER BY AUTISM...