I BLOG ABOUT OUR DAILY FAMILY LIFE AND WHAT ITS LIKE TO HAVE A SON WITH ASPERGERS CLICK here FOR A LINK

What I hope to accomplish by this post is that a parent, teacher, etc. would see this and bells start going off. Maybe I can provide some comfort to a mother whom has a child just like mine, and give comfort because our children are similar. Perhaps I may give some insight to a grandparent so that they can further understand what is Autism or Aspergers Syndrome Disorder.

I picture myself a mother hen, sitting on my eggs and protecting them carefully. As a mom, I feel it is my job to teach my children about spirituality, moral ethics, and how to be the best grownup they can be.

In the beginning of all this I wish I new who or where to go for answers. Both Jacob and I shed many years of tears together in frustration and pain. You know when your child hurts, you hurt too? Its like a part of your body is being ripped off of you.

I always knew Jacob was marching to the beat of his own drum, he was quirky, but I also knew that underlying, he had some type of disorder. I did not know where to find the answers I was seeking. I just though if perhaps if I just found a label to know what to call his personality, I would feel better. Many parents that I interacted with really had no idea what I was describing. Even the teachers really had no clue of where I should turn for answers, or even if there was a problem. I am sure many other adults around me thought I was making a mountain over a mole hill or Jake was just misbehaving and pushing my buttons.

I knew I wasn't imagining these characteristics (although sometimes I found myself second guessing myself). I already had an older child to compare Jacob to, and I treated him the same way as an infant.

Finally I found out through my perseverance, and my perseverance only, what all these bits and pieces meant. How all these different quirks (pieces) of Jacob fit together and make him-Jacob (like the puzzle pieces you see in the Autism logo). Why he does certain things, why he reacts a certain way, and what exactly is the "label". The more I dig into this and teach myself about this syndrome, the better Jacob and I can cope. However, just when I think I got it all figured out, another symptom or issues appear that needs to be dealt with.

SOME PEOPLE THINK:

• "He's rude"
• "He isn't trying hard enough"
• "He will grow out of it"
• "There is not anything wrong, he is just a typical boy"

WE KNOW:

• This is a REAL neurological disorder
• Currently there is no cure, but there are treatments
• Aspergers Syndrome is often misdiagnosed
• High Functioning Autism and Aspergers are the same

WHAT I WANT TO TELL PEOPLE IS:

We as parents are not just over protective. Aspergers Syndrome is real disorder. Early diagnosis is pertinent so the child can get the best treatment. There are ways to help!

Isaac Newton-- Albert Einstein-- George Washington


Did You Know This?


These amazing people were suspected of having Aspergers Syndrome Disorder:

Albert Einstein - could not speak fluently until the age of 9, his parents thought that he might be mentally retarded. His lectures were scattered , he would loose train of thought often. Even Einstein wore green slippers with flowers on them when he went to work (talk about quirky!!!).

Isaac Newton - dropped out of school when he was a teen.

George Washington - dictated upon death that he be layed out for three days before being buried, just to make sure he was dead (he was extremely terrified of being buried alive).

Vincent Van Gough - reportedly was an "odd child", he threw many temper tantrums, was blunt in his speaking, then tapped into his artistic side when he was an adult age 27.

Bill Gates and Mozart - are also on the list of having Autistic traits.

Look what these incredible men did for our society. They all changed our world we live in! All have different ways of learning and all were extremely intelligent. They made huge impacts in spite of having this disability. Now this gives me hope that my child is capable and will do something extraordinary in his lifetime!


What is Aspergers Syndrome Disorder?

Aspergers Syndrome Disorder is a lesser form of Autism, it is a neurological disorder. The recognition of Autism has been around for many many years however , it has just been since the 1990's since Aspergers has been recognized as a diagnosis. Unfortunately to date there is no definitive brain imaging or laboratory tests to make diagnosis. Generally checklists and observations are made of behaviors so psychologists can make a diagnosis. In my blogs I will describe the many symptoms and characteristics of my son with Aspergers. I will also describe
how it impacts our family, things that are and are not working for us.



Meet My Son, Jacob.

Jacob is 12 years old. He is just full of life! Always
going from one activity to another, it is tiring just watching him. He is a rock collector and never lets a stick just lay on the ground. Jacob has a HUGE imagination, you can find him creating something usually out of paper and tape or outside discovering. Jacob loves music: singing and discovering instruments. He often begs me to visit the book store or library and look for books about Egypt, gladiators, space, or history. It
would be Jacob's choice to pick up a bottle of disappearing ink, a pair of
funny glasses and a magic trick kit if were at a toy store. He loves to swim, especially loves the computer and video games. Jake will try anything once and loves to make people laugh.

Both academically and maturity speaking, Jake is behind. I would say maybe 3 years. It seems like every year, he seems to fall more behind . Science and social studies are his favorite subjects. Math and Writing are his least favorites. He has just finished 6th grade in a mainstreamed public school, but I do not believe this is to his advantage. At the present time, he is on the waiting list to attend Burger School of Autism in Garden City Michigan.

Jacob has been diagnosed with Aspergers Syndrome. This diagnosis was made by a Neuropsychologist at U of M in January of 2007, while Jacob was in 4th grade. Previous to that, his Pediatrician gave him a diagnosis of ADHD and ADD while he was in 1st grade.

Jacob also suffers severely from depression, anxiety, and OCD and possibly bipolar disorder. Besides his mental disabilities, Jake also has a degenerative eye disease called RETINOSCHESIS, found when he was just a toddler. In the left eye, Jake can see just light and shadows, and has varied limited site in his right eye. Vision could remain the same or deteriorate at any time. Unfortunately his prognosis is unknown and his condition remains guarded.


How I Found Out

It was pieces of a puzzle that I had to put together, not knowing anything about learning disorders or mental disabilities. It definitely wasn't an easy diagnosis -it took years for us to determine if there was anything wrong at all. Sometimes I thought I was just looking too close, or making a big thing out of small, (however it really wasn't small at all). I just kept pressing on, making lists and recording his off behaviors wanting to get to the bottom of it.

Let me go backwards. His birth was a total normal vaginal delivery. He was born a few weeks ahead of schedule and at the time I was high risk pregnancy because my blood pressure was high. However he was born 6 pounds 13 ounces and appeared very healthy. One more small thing, the umbilical cord was tied in two knots, but that's nothing to be alarmed with I was told.

Looking back when Jacob was a baby, he barely took naps or slept well at night which was exhausting for me. He was a very active baby, I was constantly keeping him out of trouble it seemed. I think his favorite toy before he could walk was this hand-held toy with small spinning colored lights. I remember the batteries for the darn thing drained very quickly and Jake would throw a fit when the lights stopped flashing and spinning. One thing as a toddler I observed, he would play with toys differently for example he would sit in the back of a plastic dump truck instead of rolling it on the ground. He would eat the chalk instead of drawing with it. He seemed like a happy baby and toddler however he had terrible temper tantrums. Jake continued to develop meeting all the usual milestones: sitting up, first words, walking, etc.

I began noticing Jake was a little different from his other peers when he was 3 and 4 in preschool years. He was mostly on his own and did not want to interact with the other children. He often refused to participate in the "project of the day" with the teacher, not interested in story- time, or other basic learning activities like counting, or even drawing. For me at the time, bells were not going off that something was wrong, I was thinking that Jacob was just a high energy kid and a little quirky.

I recall within the first few days in Kindergarten, Jake's teacher was very upset when he ate some glue during a class art project. I just kinda laughed to myself. She complained during the school year that he would not color in the lines,did not follow directions most of the time, and not seem interested in participating in the class, most of the time in a day dream. A disability was never brought up, just that he was being difficult and uncooperative. At the time, I was not happy with that particular teacher and her teaching abilities. I felt she was too stiff and needed to think out of the box to reach Jake.

Into first grade, Jake could not seem like he could keep up with the others and seemed so unfocused and fidgety. That's when I brought it up to my Pediatrician and he came up with the ADD/ADHD diagnosis. More problems at school continued and I felt the ADD/ADHD diagnosis wasn't the whole story. The teachers could not give me any insight on how to proceed or any advice. I knew Jacob had more issues to be dealt with but I did not know how to define these symptoms I was observing, if that makes any sense. I didn 't know if it was Jacobs personality or a disorder of sort. Something in my gut told me something was wrong.

I spent hours on the computer researching on the Internet, I also asked tons of questions to teachers, caregivers, and other parents. I purchased different books about child development,
teaching children, and learning disabilities. As per my request, I had the school district test Jacob for any kind of learning disorders, which resulted in his being a little below grade level, but nothing else. I first had him tested while in Kindergarten, then again in 2nd grade. One of the greatest blessings that even came upon me was a new friendship with another school parent. She shared with me that one of her children had Aspergers Syndrome Disorder. After talking about our children and comparing their behaviors, my friend told me how I should proceed and led me to a neuropsychologist for testing. That's when the diagnosis came about of Aspergers Syndrome Disorder. I was mostly relieved when that happened, as I knew then that I was not being just an over protective or slightly crazy parent . Believe it or not, I was happy to finally receive a label for Jacob. This was toward the end of Jacobs 3rd grade school year.


Characteristics of Someone with Aspergers

Following are a list of some symptoms and characteristics that are common with Aspergers kids, although there are many, many more. Please note not all people with Aspergers have the same set of characteristics, and these are only things that my child has experienced so far.

• trouble sleeping (ever since he was an infant, he would never tire)


• disorganized/looses things/poor executive skills


• not understanding and expressing proper emotions / feelings (does not know what to do with them)


• trouble with change and transitions (needs routines)


• memory problems


• gets confused easily


• compromised self control, impulsive


• cannot communicate in a complex way


• no emotion - too much emotion (does not know what is appropriate and when)


• extremely sensitive to smells, clothing, lighting, vision, hearing, touch (sensory processing disorder)


• gets bored easily


• does not understand what others need


• thinks things are funny when others do not


• misses meanings of conversations/certain words/jokes


• does not use language and some words appropriately


• does not use body language well


• does not read body language well/social cue's


• poor at sports, clumsy


• poor handwriting, and drawing, fine motor


• anxiety, depression


• mood swings


• hard to tell me - what happened


• does not learn from mistakes


• poor eye contact


• does not understand when people are joking


• takes things literally, thinks concrete


• sentences are cut off, thoughts are scattered


• hears words differently


• perceives words differently


• uses loud tone of voice/shouting


• ADHD / ADD / focus issues


• repeats certain phrases over and over and does not necessarily understand them


• slower attention shifting


• slower or delayed thinking reactions


• gets along better with adults than his own peers


• socially and emotionally immature


• interrupts people


• easy target for others for bullying and teasing


• does not have good character assessment of others


• unaware of social codes of conduct with peers


• class policeman at school
  


• difficulty multi-tasking

• brutally honest, does not know when white lies are acceptable

• physical tics (blinking, turning of head, eye rolling)

• obsessive compulsive

ABOUT SENSORY PROCESSING DISORDER

Sensory Processing Disorder

I had no idea what sensory processing disorder was until I started reading up on it.
I never heard of the term before. It took awhile for me to wrap my head around the whole concept. And if I did not get first hand knowledge of it, I probably would deny that it even existed, as I'm sure many people do. I still have so much to learn on this subject.

Our senses: vision, hearing, taste, smell and touch . To ASD people, senses are perceived differently. Their senses can be magnified to the extreme, or be basically be non existent. In some people, their senses cause great discomfort , or they are even enjoyable. To me they are
like super powers.

touch - The seam that runs down the top of the sock is very irritating to Jacob. He would put on a sock, and take it off, put on another sock, take it off...it would be time to go to school and he would be so frustrated and we would be late for school just taking on and off socks for the right feel. He could not tolerate the bumpy texture. To most of us, we put on our socks, then we go on to put on our shoes. But for Jake, the feel has to be just right, not too thick or too thin. Forget if his sock gets crumpled underneath his toes while he is walking. Jake will become unglued until that sock gets fixed. Underwear is never worn-no matter what type I buy, he will not wear it. Jeans are out of the question, they are too stiff and hard. Shirts and pants must be of very soft fabric. Other than clothes people touching him, for example, kids brushing up next to him in the school hallway , or a teacher putting a hand on his shoulder really upsets him. He takes personal offense to it rather than just brushing it off.

smell - Jacob likes to smell things, but dislikes A LOT of smells. Upon cooking dinner, he often gets an upset stomach. Cigarette smoke, or even the smell of other peoples houses he dislikes. To you and me, we notice an odor and often dismiss it, like a smell of a hotel room. But to Jacob he will constantly bring it up and complain about the smell. Sometimes it will make him physically ill. He seems to have a super power in his nose.

hearing - At school, he cannot attend to the teacher as he should. Mostly he cannot block out background noise to concentrate. He hears what we usually block out, such as the buzzing of the lights, squeaking of chairs, pencils tapping. All he hears according to him, is "blah, blah, blah..." coming from his teacher. Loud noises, gives Jacob a confused, nervous feeling, and sometimes he winds up with a migraine headache. Being in a classroom with 20 other busy students is nearly impossible. And riding the bus is a nightmare with 40 plus other children, screaming

vision - Bright lights seem to tire Jacob out quickly. He prefers low light, and a room without a lot of windows. Dim light seems to be calming.

taste - Jacob is not a real picky eater, but some things he used to do, up until recently was he would eat anything - a n y t h i n g, but now he will put odd things in his mouth like coins. His pencils are always chewed on. Even his shirt collars are stretched out and have holes in them. Jake says he likes the texture of paper in his mouth so we have lots of spit balls around the house.

Taking in too much of this stimulation leads to"sensory overload". In the beginning he could feel; confused, anxious, agitated, or overwhelmed. Overload could be shown as a temper tantrum, hyperactivity, having a "silent" meltdown and shut down completely, or aggression. Once into the overload mode, its very difficult and time consuming getting Jacob back to calmed down and down to earth. We have learned to find out what these triggers are, recognize Jake's signs in the beginning, and avoid the triggers them if possible, which has helped considerably to manage his SPD. Its nearly impossible for the person to control the triggers, however we can try to teach them to relieve their stress and what to do when it happens. For Jacob, we have not found what works yet, so he can control himself better in these situations, although I am always hopeful he can one day. Grocery stores and waiting rooms are some triggers. Other triggers: fire alarm, school bells, fluorescent lighting, older computer screens that flicker. As he is getting older, I am observing that Jake is getting better dealing with these sensory issues. Maybe I am just in tune with what his triggers are.

At home there is usually not a lot of stimulation and commotion. I try to keep peace, and my house is usually in order, which really helps. Summer usually goes pretty smoothly, but when school is in session there are many, many days he has been over stimulated and has a melt down at the end of the day. This school year we are trying to prepare and hope to avoid all these stimulation's -to avoid the breakdowns, bad behavior and shutdowns. We have much work to do as he goes into 5th grade soon. It has taken me to this year to figure out these patterns, connect the dots, and learn about the words "sensory problems", although I am still learning. In the past I would ask myself why does he have crying fits every time he came home from school? He couldn't tell me due to his speech and language problems just until the the last year or so,(more on language problems later), and the school would say they didn't notice and thought he had a good day. Come to figure out, Jake would be so exhausted from all the stimulation, he was having silent meltdowns in school, shutting down, then when he got home it would become a full blown meltdown. He no longer rides the bus because that just puts the icing on the cake. The tears and tantrums have cut down significantly the past year. I could not figure why he was having a tantrum, but now Jake can tell me what exactly bothers him, and I can help advocate for him at school, figure out a solution, or help him work through it. I have heard people with SPD can get therapy to help with this, and I am hoping we can try this with Jacob very soon. Coming from the "experts" studying Autism, (& not just my opinion), individuals with SPD are not trying to be difficult, their brains circuits operate differently than ours, and are just wired differently.

A good book about Sensory Processing Disorder is Learning in Pictures by Dr. Temple Grandin. I have had the pleasure to hear her speak on Autism. Interestingly Temple made her own "squeeze machine" as a therapy to sooth and calm her.

SPEECH AND LANGUAGE ISSUES

Language not only means the use of words, but also it includes interpreting what you READ OR HEAR, and the ability to COMMUNICATE your thoughts and feelings.

Last school years the Speech and Language teacher worked with Jacob on finding the main idea when reading or looking at a cartoon. He would focus on a small detail, and not look at the whole picture, picking up on irrelevant items.

Also I notice that he misses the main idea during lots of our conversations together. He picks up on the last word said, and thinks the whole topic centers around that word. This affects him in the classroom, and also in social situations negatively, leading to badly graded papers in school, or misunderstandings between friends.

Listening to people talk is very difficult because people don't usually say the same thing twice, and no two people speak the same way. Fast talking people in particular, are one big question mark for Jacob, and so are complex ideas and directions. He is just learning now to ask them to repeat their sentences again so he can grasp what they are saying.

Understanding certain words, for instance: What, Where and When. If you ask Jacob "When did you brush your teeth ?" he would answer "in the bathroom". Simple little words that make all the difference in the world, that would turn around the meaning of a sentence, he just does not "get". Other words I find he doesn't get are: under and over. Misinterpretation and impaired comprehension is common with AS kids.

Its a huge problem with school and parent communication. He doesn't seem to remember what he needs to and can't communicate it fully to me even when he does remember. I prefer any school communication to be made directly to me, it relieves a lot of small problems.

Other language problems involve confusion with figures of speech; he thinks in concrete and very literal.

Most in the time in school he stares into space with a blank look on his face, or does not follow directions. That's when his brain isn't " receiving", and "transmitting" the way it should. Sometimes it takes a few extra seconds for his brain to process what was being said, and then figure out the right words to answer with.

Other Speech & Language problems:

Changes topics in the middle of conversations without relevance

Difficulty putting thoughts into words (he would not know how to answer ) "What did you do for the weekend?"

Does not understand innuendo, sarcasm, or irony

Doesn't know how to maintain conversations

Needs concrete time-unlike the words "perhaps", or "sometimes" to understand

Does not know when its okay to tell a white lie, is brutally honest

Cannot tell the difference between relevant facts and irrelevant facts

It was great help that whenever there was an incident at school, and there were lots, of Jacob having to report to the principal to tell his side of the story, his teacher would be there with him to help fill in the blanks. That way, all that Jacob was trying to communicate would get across to the principle.

Executive Function Issues

The executive function includes:

• organization and planning abilities
• memory
• inhibition and impulse control
• self reflection and self-monitoring
• time management and prioritizing
• understanding complex or abstract concepts
• using new strategies

As children, these issues need to be considered and addressed particularly in school, and accommodations may be needed. There are some suggestions in my other blog http://myaspergerschild2.blogspot.com. These issues are not the fault of parenting, or the child's misbehavior or laziness, it is the brain's hard wiring, PERIOD. Its just the way they are.

It is not so easy to teach these skills, most of the time, they can't be taught. For school aged kids. their parents need to take on this responsibility to help with the executive skills, and maybe be replaced later in life by a wife(i.e., a friend of ours needs help with straightening and organizing his briefcase every night). A parent who provides support may be labeled as doing too much for the child,(as I have by certain ignorant teachers), but I have learned that without that help, my ASD child would not achieve the grades that reflect his abilities. Experts such as Tony Attwood, whom has studied ASD kids, suggest this is what we need to do as parents. These kids have enough on their plate already-so help them achieve their best and you will see what can happen! Just because it is over their heads, they shouldn't have to suffer. They need to go forward academically and you can help them to become successful and independent adult.

Throughout the years, I have heard many complaints from teachers. Jacob does not come prepared for class (no pencil, no book, no paper). One minute Jacob could have a a pencil in his hand, and the next minute it is gone. Send him across the hallway to turn in a paper, and the paper in his hand has vanished. An assignment is finished and put in his desk to return to after lunch and its missing. Lost library books are constant. Unfortunately he has spent many days indoor for recess or another form of punishment for this absent skill. Its frustration for not only Jacob but his classroom teacher.

At home I have to keep my home tidy. Everything has a place, and if an item is not in it's home, I get slightly unglued. Its all I can think about, I have to have my home in order before I can accomplish anything else ie, errands, lunch date, shop. However, I am able to organize. In fact its basically my hobby. When Jakes room becomes littered with his toys and things about, he gets distracted and annoyed. Unfortunately he also gets overwhelmed looking at the disorganization, and does not know where to begin in his room, he cannot associate what needs to go where, so I have to help him get started. Items often gets misplaced, and we spend quite a bit of time looking for things. He just cannot get the concept of putting things "in it's home" so he will be able to find it next time. Sure everyone misplaces their keys or cell phone occasionally, but this is on a much larger scale.

Executive skills are easy for most, but not for my Jacob. This is one area he needs serious assistance especially while in school.

Social Skills

One of the largest challenges in having Aspergers Syndrome disorder is Social / Friendship Skills. My child wants desperately to have friends and craves peer interaction, although some Aspies do not care to interact with anyone. Unfortunately for Jake, it always turns into a disaster soon after he meets a friend because he has no clue on how to keep them.
For one, the Asperger child has very few interests, and talks about the same interests constantly. The peers body language is ignored so the AS kid keeps talking about it the same subject repeatedly, which annoys the other child.
Additionally, AS kids are clumsy and has poor motor skills, and non-athletic, so he does not fit in with the "sports kids". The AS kids don't get the social cues on the playground, they tend not to understand the rules of a game very easily, misinterprets other kids actions, and rarely has things in common with the average kid. This means he is last picked on teams, and also often left out of social situations because he is considered nerdy or odd.
I find Jacob at least 2 - 3 years behind maturity wise, and other kids get turned off by his silliness behavior. Also he has a huge imagination; dreams about dragons, knights and secret places. Most kids his age are out of that stage already so they don't connect well with his pretend world. As a parent, it is very sad to see your child not having any friends.You want them so badly to have friends to enjoy.
He is very quick to anger and gets agitated very easily which does not help keep a friendship going. I notice he fly's off the handle then says things to others to retaliate.
Jake has made a friend and kept him for over a year now. He is a boy of Jacobs age with Aspergers and the friendship continues because a lot of parent intervention. Without it, this friendship would have been over just like the rest.
Trying to teach Jacob what is socially acceptable is difficult for me, Jake seems to be very hard-headed and does not like to follow my advice for some strange reason on this subject. It seems more believable to him and better coming from another source such as a teacher, other adult or even peer. It is very sad for me to observe my son in these incidences. He often is upset because he has no one to play with, and cannot see the causes of his actions. This causes many meltdowns and sleepless nights for him.

UPCOMING

For now (until I figure out how to combine these) I have 2 other blogs about Autism and Aspergers.

http://www.myaspergerschild2.blogspot.com/

http://www.myaspergerschild3.blogspot.com/

To get in touch with me, email me! a.rohde@sbcglobal.net