Sunday, April 9, 2017

The Final Hurdle: Life After High School with ASD

Autism is a pervasive condition that effects every aspect of life. My son Caleb was diagnosed with a moderate form of autism at the age of two and a half and exhibited serious behavioral challenges. Testing revealed his mental age as less than six months. The developmental pediatrician tried to prepare us. They were unsure if his cognitive ability would improve. We were terrified. Safety was a very serious issue and we dealt with a wide range of daily issues. Including constant elopement (wandering), self injurious acts, constant tantrums, and serious sensory issues. Just to name a few.

As a resident of New York we were fortunate to receive very intense services at a very young age.  From the time of diagnosis, Caleb received classroom instruction, and intense speech five times a week. Occupational therapy was executed to master motor skills and sensory issues. And physical therapy was added to address gross motor skills. And he received all of his services year round. He literally was a million dollar child. The state went to great expense to ensure Caleb had the best outcome possible.

Caleb needed a self contained classroom for most of his preschool and elementary years. Each class containing no more than eight children. With a special education teacher and an aide. For quite some time Caleb had an additional aide designated just for him.

As time went on and the years flew by, Caleb improved in all areas of development. Each year the classes became larger and he was eventually integrated into blended education classrooms. In 2011 he received the ultimate reward. He walked the stage with his peers to receive his high school diploma with his peers. It was a very emotional event! He had overcame it all of the struggles. We were so proud! Little did I know this moment was when our serious struggles were just begining.

Transitioning services into adulthood is extremely complicated. From Early Intervention through graduation all the service systems flowed smoothly into each other. These transitions required little effort from parents. A large majority of parents are not informed that the transition into adulthood is not automatic or smooth. It is filled with multiple evaluations and professionals. As well as multiple systems to incorporate and apply for. The hurdles seem to be endless. It is chaotic and exhausting.

For five years we fell off what is termed as the "service cliff" and received no services at all. A new study showed that one in four individuals with ASD fall off this cliff. No one has researched yet exactly why this happens. I have a pretty good idea, because it happened to us.

Caleb struggled without success for two semesters in college. We realized the supports were not available to help him be successful. The college he attended had (at that time) 200 individuals that identified themselves having an autism spectrum disorder. Yet, very little has been incorporated to help provide adequate support for them. The state vocational agency provided very little assistance to help achieve success. Instead, they guided him to a six month unpaid internship at the local homeless shelter. Caleb really enjoyed this internship and he developed a real passion for the people he interacted with. A strange thing happened. He came alive with excitement and passion! A side of him appeared I had never seen. And it didn't involve a plot line to a new video game!

Caleb decided that he wanted a career that will connect the needy with local resources. I tried connecting resources to help him achieve his dream of being a college graduate. I failed. With each connection I hit a wall. Some denials were political in nature and others frankly were based on personal assumptions made by his autism diagnosis. Instead of providing necessary supports for college my son was redirected once again to supported employment to be a greeter at Walmart. After all, society believes because he autistic and not capable of anything else .

I have learned in this journey into adulthood that agencies and government entities use certain terminology to describes their mission and vision. The words self determination and self centered planning are used frequently. These terms are defined as:

Developmental Disabilities Act describes self-determination activities as activities that result in individuals with DD, with appropriate assistance, having the opportunity to communicate and make personal decisions; exercise control over the type and intensity of services, supports, the authority to control resources to obtain needed services, supports; opportunities to contribute to their communities; including financial support, to advocate for themselves and others, to develop leadership skills, through training in self-advocacy, to educate policymakers, and to play a role in the development of public policies that affect individuals with developmental disabilities.”

The New York State Office of People with Developmental disabilities defines person centered planning as a process that helps identify desired personal outcomes based on the individual’s life goals, interests, strengths, abilities, desires, and preferences. The process helps to determine the supports and services that the individual needs to work towards to achieve these outcomes and, accordingly, develops a plan that directs the provision of these supports.

Five years after achieving a high school diploma he has not achieved his goal. Each system and resource refuses to assist my son in achieving his dream and fulfilling his passion. As a result he is retreating back into his own little world. Without a voice, opportunity, or authority that he is entitled to. Regression is very evident. Society and public policy provides a significant barrier. Often preventing individuals from achieving anything productive.

My child used to be happy until he graduated high school. Currently counseling is needed to battle depression and anxiety. We finally receives some services. Independent living skills, driving lessons, and community integration. He spends his free time (which is most of the time) in his room playing video games. Firmly believing the world has forgotten him. He has been forced to watch his three siblings go on with their lives. Some siblings attended college and others were married. One having becoming a mother. And two obtaining very successful jobs. All the while, he is still waiting for the life he desires. Being denied the self determination and person centered planning he is entitled to.

This is unacceptable for my child as well as the other high functioning autistic individuals transitioning into adulthood. It is definitely not fiscally responsible to spend a million dollars to not achieve the final goal of independence and self sufficiency. 

I took action and received my Bachelors in Science in Human and Community Services in 2013. I also recently completed my Masters in Public and Social Policy in August 2016. My masters thesis concentrated on public policies that affect adults on the autism spectrum. These policies were initially designed to help individuals but ultimately ended up inhibiting individuals like my son from achieving success and the life they desire. Other policies chose where these individuals like can work, what ki d of traing they can receive, what jobs they can obtain, what kind of training they can receive, and even where they can live. Policies like these take away the choices that are afforded everyone else.  Adults with ASD are denied the basic right to life, liberty, and the pursuit of happiness that is afforded to everyone else. Apparently everyone can have it. As long as you don't have a diagnosis of autism.

It's time for policies to change. I am determined to ensure it does. All life is valuable. And no one should be forgotten. We must do better!

Wednesday, April 29, 2015

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!

Thursday, October 16, 2014

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.


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.

Tuesday, September 9, 2014

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.

The Sensory Spectrum

Saturday, August 2, 2014

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.

Sunday, January 12, 2014


As a parent with a child with autism I have felt deep devastation while reading articles in the news lately about terrible things happening to children on the autism spectrum. Any of these events could have very well happened to my child. It bothers me that people who do not have children on the spectrum have preconceived notions that these things happen because of inadequate parenting. This could be farther from the truth.

My son Caleb was three years old. His cognitive ability was less than six months. Which means he acted and behaved like a 6 month old baby in a three year old body. One day my husband and I were in the kitchen preparing our evening meal. Caleb was upstairs playing with our other three children who were older. About 20 minutes later our next door neighbor knocked at our door. With NO urgency in his voice, he said " Ma'am your son is sitting on the roof". I was shocked. I yelled for my husband and we both rushed upstairs to my bedroom window (which was the only room with a roof). We had one of those screens in the window that the window sits on top of. Caleb had pushed it aside and climbed onto the roof. He was just sitting there watching the cars drive by.

At that time in his development, if we called for Caleb he would run. So my husband and I strategized on how best to get him back to safety. My husband decided to climb out the window and sit on the roof with him. He sat there talking with Caleb for five minutes or so. Then he suggested to Caleb that they come back inside because dinner was almost done. He gladly got up and came inside.

We had no anticipation that this kind of event would ever happen! On another separate occasion I ran upstairs to grab a pair of socks so I could leave and take Caleb to the doctor for a well child visit. I literally was only gone a minute. In that time, Caleb being three and half or four years old managed to unlock the deadbolt of the house, climb on top of the couch and unlock the other lock, unlock the screen door on the other side and he was GONE!

There is nothing worse than the panic a mother feels when her child is missing. I lived in the city of Rochester NY on a little side street between two main roads. Caleb was not in sight. After about fifteen minutes of looking for him I decided to check our tiny back yard. I saw Caleb in the neighbors yard. He had managed at his age to scale a six foot wooden privacy fence and landed into the yard holding two dobermans. We managed to get him to safety but it was not easy. The dobermans were trying to protect HIM and growled and snared at us. I did finally manage to get him to come to us.

There were other occasions as well. He managed to get out of the house several times and ran down the main roads nearly getting hit by cars. I often would hear screeching of the car tires to prevent hitting him. One day while coming home from work I pulled up in front of my house. Our next door neighbor was watching him while I worked. As I pulled up I saw Caleb hanging out of a three story window. The babysitter had no clue.

Other instances included Caleb setting the kitchen on fire (a bag of groceries was on top and he turned the stove on and it set fire). A bus driver at 5 yrs old dropped him off in front of the house without an adult. He did not wait for the baby sitter to come get him. He just let him off and left him alone. My babysitter called me at work saying the bus didn't come. I called the bus company and they verified that Caleb was indeed dropped off. I asked them to check the bus to be sure he was not hiding. They informed me that 60 MINUTES had lapsed since the drop off! He was not in the bus, nor in the care of the babysitter! My heart jumped into my chest! WHERE WAS CALEB???

I drove home as fast as I could in a deep PANIC. I strolled the neighborhood looking for him. I had no idea where to look. I looked for over an hour. I walked home to see if by chance he made it back to the house. After I looked through the backyard and house I reached the living room to go out and search again. A woman (MY FOREVER ANGEL) was standing on my porch with Caleb holding her hand! This older woman had found my son strolling down the middle of a main road and RESCUED HIM. She said she could tell he had autism. He had limited language at that time. She strolled door to door asking anyone she found if they recognized my son. She happened to come across my little street, only a block long and saw an expression on Caleb's face that it was familiar. She then proceeded down our street going door to door. When she reached our house she felt a tug on her hand from Caleb that this was the right house. I will be forever grateful for this FINE woman who cared enough for someone else's kid to get him to safety.

My son could have been killed that day if it was not for this wonderful angel of a woman. If we had lived in an area where there was water he could have drowned like so many others in the news lately.

I am writing this because there is so many preconceived notions about these tragedies affecting our autistic children that are completely and totally unfair. How many of "normal" parents spend two minutes in the bathroom with their kids playing quietly? NO ONE understands what it is like for an parent of an autistic child to fear for their child's safety every second of every day. In recent news, there was an mom of a child affected by autism. Her child disappeared in the few minutes it took her to unload the groceries out of her car!

When Caleb got older and less of a safety risk, it was still difficult to let go of that "PANIC" I felt inside that had been there for so many many years. On the day he graduated from high school with his peers I sat in the audience and bawled. For the first time EVER I knew I no longer had to worry about his safety (at least not in same degree).  I could let that part of being an autism mom GO.

Please do NOT make judgement's on these parents. These parents are doing the best they can. I see myself as a GOOD mother. But I too could have been one of those who was struck by unspeakable tragedy. I am grateful that is one heartbreak I did NOT have to endure...

Saturday, December 7, 2013

Speak up and reach out!

In 1996 when my son received his autism diagnosis the information superhighway was not as it is today. My only recourse in learning about autism was the local library. I would search for the information and only find information dating in the 1980's. I would scoop up everything I could find.

Unfortunately, much of this information was inaccurate and outdated. It depicted the worse case scenarios such as severe mental retardation, never being able to live alone, ect.... A parents worse nightmare. When in fact this is not always the case. The outcome for a child on the spectrum is directly related to several factors. The first factor is an accurate diagnosis, and a treatment plan. My son Caleb's treatment was outlined specifically by his developmental pediatrician who diagnosed him.  The second factor is appropriate class placement. As a new parent dealing with special education I had no idea what an appropriate placement was. I was LOST. But I learned.

After the initial shock wore off about his diagnosis we applied for Social Security for my son.  I could not work due to the demands of raising a child on the spectrum. Once we were approved, I approached the school about what the best thing I could get for my son to help him. Ipads did not exist then. The school suggested us buying a computer. So we did.  Caleb was four and we purchased digital books on CD and he would sit and watch the computer read the book to him. The CD would light up the words as the voice read the book to him. He loved it. I truly believe that is how my son learned to read. He could read long before he could speak.

When the day was done, and Caleb was in bed. I would use the computer to "surf". One day I was scrolling chat rooms on AOL and ran across a chat room for autism. I entered the room and my life was never the same. Inside this chat room parents of children on the spectrum shared issues they were experiencing. Other parents would chime in and discuss what worked for them to help with that particular issue. This was a godsend to me. I had someone to talk to that was also dealing with autism.  Over the course of 17 years of raising a child on the spectrum, this same group of people are still in my life as a means of support.

One of the people in the room was not a parent but an adult who was affected by autism. His name is Stephen Shore. He was so supportive to me from day one. Over the course of 17 years, Stephen has always been a source of information and advice in helping with various issues from classroom placement and services to independent living. Stephen Shore is now a professor at Aldelphi University and author. He wrote his most recent book "Autism for Dummies" which is a perfect reference for those with a new diagnosis and do not know where to begin. Stephen is also an World Renowned Autism Expert doing conferences all over the world on various subjects relating to autism. I am blessed to be able to call him my friend.

It is common for autism parents to retreat into a world of their own similar to their child with autism. It is not healthy. It is critical for the well being of the parent to socialize and interact with those that are also struggling with the same issues. Autism is a big part of your life now. Find other parents dealing with it too. You will be shocked at how it helps!

Now that the information superhighway is very effective there are numerous avenues one can take to interact with parents who are also raising a child on the spectrum. My favorite site is MyAutismTeam.  It is parents sharing on a web site about how their day was, and what issues they are dealing with on that day and even how they are dealing with life at that moment. It is a fantastic opportunity for a parent feeling shut in and alone to interact. I also attend a support group designed for parents with adult children with autism.

Do not be ashamed or fail to disclose your child's autism. It needs to be said (even though its difficult to say). I am part of a large church that serves over 450 children. Some of those children are on the spectrum, yet the parents do not disclose their childs autism. Anyone who comes in contact with your child needs to be informed! Especially the pastor of your church.

Autism is not something to be ashamed of. Do not feel like you are burdening other people by sharing information with them. Sometimes the Lord places us in situations where we need others to help carry our burden from time to time. With the autism rates rising the way they are, there are more children out there than you are aware of. Parents should not feel isolated and alone.

Speak out, and reach out. It is healthy for the mind and spirit. You will be shocked at what it does for the soul when you get to the point where you are helping carry the burden for someone else.  It is a true blessing!!!

Monday, January 23, 2012

True Test of FAITH

As I lay in bed after my son Caleb was diagnosed with a severe form of autism called pervasive developmental disorder, I felt an emotional, even spiritual struggle stirring inside of me. WHY had this happened? Was this MY fault? Was I being punished somehow for past sins? There was a deep anguish inside of me that few will ever understand. My heart hurt. My soul ached. I had cried and cried, and cried some more. My faith was being shaken at the very foundation of everything I had believed. 

I had been raised in a Methodist Church, and my mother taught Sunday School. It was not unusual for us to occasionally have my own mother as our Sunday School teacher on a Sunday morning. I continued going to church through high school, and even found a local church near campus where I attended college at Alfred State. In 1988 after attending Victory Baptist Church, I accepted Christ as my personal savior and was baptized in the spirit. My husband and I met at this church years later. When Caleb was diagnosed  we were attending First Bible Baptist Church (still are). It is a very large church. 

I believed in a God of love and mercy. I could not wrap my head around this being GOD'S WILL for my son to have autism. I spent countless hours laying in bed, praying, and crying. I asked the Lord to explain to me, to show me somehow... WHY THIS WAS HAPPENING..... "Lord, it would be so much easier if I knew what your plan was...".  I had a hard time believing that the Lord I knew for so long, could do this to an poor, defenseless child. There HAD to be a reason.....I just did not know what it was. 

Only a mother/father with a child with a disability will ever understand this feeling. HELPLESSNESS AND ANGUISH. What do I do? What should I be doing that I am not? The hardest thing to accept with an autism diagnosis, is not the autism itself. Its the uncertainty of what the future holds. Honestly, if it was not for my faith in the Lord, I am not sure I would have ever made it. Was it the most difficult thing I have ever done? ABSOLUTELY. Was it the biggest test of faith, patience, and determination? OH MY...YES!!!

Sometimes the LORDS answer is ....WAIT. Take one day at a time. Keep going forward. When you think you do not have the strength to go on... YOU DO. There are a few things I did not realize, and might not be obvious to you either. The LORD would have never placed this situation in your life, if he could not GIVE YOUR THE STRENGTH TO HANDLE IT. The Lord CHOSE you to parent this child/children with a disability, BECAUSE YOU ARE A SPECIAL PERSON, and HE knows you can handle it!

Cling onto your faith! If your not a spiritual person, you should think of joining a local church. They can be a tremendous support emotionally. It will help uplift your spirits, and build your strength to handle what is to come the following week. If getting to church is an issue, there are many church sermons online on itunes that can be loaded onto your computer for free or can be streamed without downloading.

I lived in uncertainty, for many years. I now know patience.I have seen Gods Glory. The LORD has revealed his purpose of all this happening, and the LORD is directing my life  (in directions I never dreamed it would take me). Most importantly.... Caleb is OKAY. Last June he graduated from high school with his classmates, earning a regular high school diploma. He is now attending Monroe Community College and is in his second semester.

Lord knows that I wished I had known it would turn out this way, when Caleb was banging his head against the living room walls, unable to tell me what was wrong. I was terrified he would knock himself unconscious, or end up with a concussion. I wish I knew it through the never ending temper tantrums, biting fits, and constant safety concerns. Especially, if I took him into a store or even a McDonald's he had never been to before! I wish the LORD had told me this when he wasn't speaking at 5 years old, and still in diapers in THIRD GRADE... The plain fact is this.... I WASN'T MEANT TO KNOW THEN....MY FAITH WAS BEING TESTED....My job was to wait....

I can not even begin to explain the series of emotions seeing my son walk across that stage last June at Greece Athena High School Auditorium (he attended Greece Olympia, ceremony was at Athena) to receive his high school diploma. For the first time in 14.5 years, I KNEW everything was going to be okay. HE WAS GOING TO BE OKAY. Everyone around me in the auditorium stared at me as I bawled when they called his name. Honestly, most people would have thought someone had died. Even my three other grown children (and their significant others), looked at me with an odd look, wondering why I was crying. I could finally let go of all the worry, uncertainty, panic, anguish, I had carried around all those years. Even my own children just did not understand....

At that very moment, I wanted to get on my knees and praise the LORD. I didn't because I was already making a scene bawling in the seats of the auditorium. People around me stared at me. They had no idea what it took to get to this day.....I HAD TO WORK HARDER AS A PARENT, AND CALEB HAD TO WORK HARDER AS A STUDENT.....than those parents who were probably staring at me, wondering what in the world was wrong with me. I didn't care,  they could stare. I had waited for so long... wondering if this day would ever come! AND HERE IT WAS!

I told this that those of you who think you can't go on... YOU CAN! Those that think that the Lord is not hearing your voice HE IS. Sometimes the answer is simply....."WAIT...let me show you what I CAN DO!"

There are some things, we are not meant to know the answers to. Sometimes we are blessed to eventually have the answers we are seeking, others have to wait to ask the LORD when we see him face to face. But for all of you out there....who know how I felt, and feel this way NOW.. hold on...YOU NEVER KNOW WHAT THE FUTURE HOLDS.

Saturday, January 7, 2012

Caleb and his Ice Cream....

My husband and I stood in the developmental pediatricians office.. STUNNED and Overwhelmed.  We had so many questions, and few answers. Suddenly everything was in slow motion. I could hear the words being said to us, but for some reason it didn't seem real. It was as if I was stuck in my own personal nightmare.

My husband and I were at this appointment with a representative from the Early Intervention Program. The developmental pediatrician started talking straight to this representative, in a bold, and insistent way.  Dr. Hyman started outlining in great detail all the services she was prescribing for Caleb, and that he needed a classroom NOW, and this lady had exactly one week to find one for him, or she was going to answer to HER.

As she was describing these treatments, I quickly became lost in the conversation. Dr. Hyman started rattling  off abbreviations that I had never heard before. She wanted OT, PT, Speech Therapists in the room with him at all times, a 8:1:2 classroom with 1:1 aide, sensory integration mind was SPINNING... I had no clue what any of this was, and did not want to interrupt the discussion with the intervention worker to find out. I WAS SO LOST, CONFUSED AND SCARED....

As we were leaving the developmental pediatricians office, the intervention worker informs us of the next step. Observing and choosing a classroom. She proceeded to tell us that we would have appointments set up to go visit various places throughout the city, and we would pick the one we thought Caleb fit into best. All I could think of was....What exactly do we look for? I had never done this before! How do we know which class is the best one for him? Shouldn't someone help us with this? I was praying for some kind of sign, to signal me which one was the right one. I came to know later, exactly how crucial appropriate classroom placement was.

My husband and I went to three classrooms before we saw the birth to three class at Monroe #2 Boces Program. (We were instructed to take Caleb to each facility and observe how he responded in each environment). We were running out of options and would have to make a decision soon. We had not seen anything extraordinary up to this point. NO SIGN....

We first enter the classroom, and we were greeted politely by the teacher, and she introduced herself, and squatted down to the floor to be eye level with Caleb and greeted him with a hello. As the teacher was telling us details about the classroom the aide was with the other seven children and started gathering them around a table. She then raised her voice slightly and said:

"CALEB! We are going to have ice cream for a snack, would you like some?" HE DID NOT RESPOND.. NO REACTION at all.  At that time, he was nonverbal, and Caleb did not acknowledge the presence of anyone he was not intimately associated with. The reaction was not a surprise to us.

The aide, when not getting a reaction from him then said "CALEB... if you would like some ice cream, you HAVE to sit at the table with everyone else." NO RESPONSE. NO REACTION...

The aide, then set a bowl of chocolate ice cream with a plastic spoon in front of an empty chair. "Here you go Caleb, Here is YOUR SNACK, but you HAVE to sit at the table." Caleb stood there, no reaction. Caleb then proceeded to wander over to the table, sat down, and had his snack. WE HAD FOUND THE PERFECT PLACE. THIS WAS IT!!! THIS WAS OUR SIGN....

We called the Early Intervention worker, informed her of our classroom choice, and she set up transportation for the following Monday. Caleb was only three at the time, and would start school doing half days, and travel in a small bus with a car seat. I was dreading putting my baby on a bus, and was not looking forward to it.

The first day of school was always an emotional one, but he was only THREE..and so little. Just the thought of it, would make me start to get emotional..... This was a new world now. Our life FOREVER CHANGED BY AUTISM....

Sunday, December 18, 2011

Autism Parents Version of The Night before Christmas

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

Thursday, December 15, 2011

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...