Lack of Effort or Slow Processing Speed?

Kids at the aquarium.  From Left to Right is
Joseph, James, and Margaret

Slow Processing Speed. What the heck is that and what does it mean for my child???  I know I was wondering that same thing when Margaret and Joseph tested as having profound processing speed problems. Margaret tested as profound (60) on the WISC-IV for memory processing speed and is a relative weakness for her.  Joseph tested in the 0.1 percentile in processing speed (standard score of 45; there is no lower score). Joseph's processing speed is  slower than his other neurocognitive abilities suggest which is not surprising since many of the processing speed tests depend on visual skills (Joseph is blind in one eye along with working memory). I think Margaret and Joseph developed their issues with processing speed due to their premature birth and very low birth weight.  James was blessed to have tested average (89) on processing speed.  With two kids having VERY impaired processing speeds I needed to find out what this means for me and for them.

What is the Impact of Slow Processing Speed? 

Don’t automatically presume that the child is being oppositional, ‘lazy’, unmotivated, etc. because he/she takes longer to initiate or complete a task, or to respond to a task demand. Keep in mind the possibility that his/her behavior is the result of slow processing speed. Processing speed is the pace at which you take in information, make sense of it and begin to respond. This information can be visual, such as letters and numbers. It can also be auditory, such as spoken language. It is important to be alert to the possible emotional impacts that a child can experience in the face of slowed processing speed, and to provide emotional support and encouragement, as well as practical interventions.

Slow processing speed can cause negative impact to three main areas of someone's life. These are

Image courtesy of ilslearning.com

academic, social, and self-esteem. Academically, slow processing speed can lead to the following types of problems: slowed execution of easy academic tasks; slowed acquisition of new material; becoming overwhelmed by more complex academic demands; the need for extra time in responding to even well-practiced and automatic tasks; and difficulty making correct conceptual decisions quickly.

Socially, slow processing speed can lead to difficulty keeping up with normal give-and-take conversations among peers or with adults, or appearing to be ‘not-with-it’ by others, with the potential of being made fun of or mislabeled as a result.

With respect to self-esteem, the fallout from the problems described above can have a negative impact on self-esteem, leaving a child vulnerable to feelings of incompetence, self-consciousness, and/or depression. Many children with slow processing speed wrongly end up feeling that they are stupid, because they are aware that it takes them longer to get things done, or to understand some concepts.

Examples of slow processing speed, when a child with slow processing speed sees the letters that make up the word “house,” she may not immediately know what they say. She has to figure out what strategy to use to understand the meaning of the group of letters in front of her. It’s not that she can’t read. It’s just that a process that’s quick and automatic for other kids her age takes longer and requires more effort for her.

Saying too many things at once can also pose a challenge. If you give multiple-step directions—“When you come downstairs, bring your notebook. And can you also bring down the dirty glasses, and put them in the dishwasher?”—a child with slow processing speed may not follow all of them. Having slow processing speed makes it hard to digest all that information quickly enough to finish the task.

Slow processing speed impacts learning at all stages. It can make it harder for young children to master the basics of reading, writing and counting. And it impacts older kids’ ability to perform tasks quickly and accurately.

Slow Processing Speed, 2e, and ADHD

There is a newsletter for twice exceptional children (Gifted/2e) that has a WONDERFUL article on slow processing speed written in May 2013. In the article Steven Butnik, Ph.D outlines the issues with slow processing speed. It is common for gifted students to have slow processing speed.  Slow processing speed itself is not a disability.

Children with the predominantly inattentive subtype of ADHD may have a sluggish cognitive tempo. They typically daydream, stare off, and appear spacey. They may be mentally foggy, underactive, slow moving, and lethargic. Their work is often slow and error prone. Their brain activity shows patterns of under arousal in the portion of the brain associated with focus and planning.

In addition, children with ADHD typically exhibit poor executive functions, brain-based behaviors that contribute to effective functioning. (see my blog post on executive functioning) Executive functioning is often impaired in ADHD individuals.

Some children take more time to complete tasks due to trouble with activation. A student may not begin a task due to problems organizing time or materials, or due to reluctance, uncertainty, lack of confidence, or anxiety. Other children may take more time to complete tasks because of problems maintaining focus. While time is passing, these students may be distracted or daydreaming, drawn to other, more interesting stimuli.

Effort includes processing speed as well as mental stamina. When effort is a problem, the child’s work pace is very slow and he may complain that his “brain is very tired.” When the problem is emotional, on the other hand, children find it hard to regulate their feelings. They might melt down when starting to work or encountering a frustrating task; or they may refuse to work, be argumentative, or have tantrums.

Problems in working memory can add to the time it takes a child to complete tasks. After reading a paragraph, a child with poor working memory may forget what she just read and need to read it again; or he may stop working on a class assignment because he forgot the directions. Finally, when action is a problem, the child has trouble sitting still, fidgets with objects, or may want to stand or walk around when working.

An additional issue that children with ADHD face is having a poor sense of time. For them, time seems to go more slowly during the tasks they feel are boring while moving more quickly for tasks they find interesting. When planning work tasks, a child with ADHD may underestimate how long the task will take; and when playing, the child may be unaware of how much time has passed. Taken together, poor executive functions and poor time sense can make homework take hours to complete and create major stress.  Trust me on the stress!  Even homeschooling I can have issues with poor time management and starting work. I can only image if I sent my children to public school!  You can see in the image below how processing speed effects the effort (number 3) needed for executive functioning along with working memory (number 5). It is easy to see how executive functioning is impacted.

Image courtesy of 2enewsletter.com

How to Test for Slow Processing Speed? 

So how do we test processing speed?  I highly recommend in seeing a neuropsychologist. If you cannot then I suggest seeing a developmental pediatrician or pediatric psychologist.  In the executive function blog post I explain why.  If you need to the school to preform the testing then I highly suggest you tell the school you want testing in executive functioning, memory (working, long-term, and short-term), sustained attention, and processing speed. At public schools you cannot specify they use specific tests, but if they ask, tell then you want the Wechsler Intelligence Scale for Children ® - Fourth Edition (WISC ® -IV).

Who can administer this test?

Tests with this qualification require a high level of expertise in test interpretation, and can be conducted by individuals with:

• A doctorate degree in psychology, education, or closely related field with formal training in the ethical administration, scoring, and interpretation of clinical assessments related to the intended use of the assessment.
OR
• Licensure or certification to practice in your state in a field related to the purchase of the test.
OR
• Certification by or full active membership in a professional organization (such as APA, NASP, NAN, INS) that requires training and experience in the relevant area of assessment.

More Information and Training on Score Reading

On WISC-IV's on page, at the bottom of the page next to the product details tab, there are a couple of other great tabs you may want to research.  Under the Resource tab there are several technical reports.  A couple that caught my eye included Technical Report #6: Using the Cognitive Proficiency Index in Psychoeducational Assessment and Technical Report #5:WISC–IV and Children’s Memory Scale, and Technical Report #2: Psychometric Properties.  There are also some training on WISC-IV Interpretation & WISC-IV Integration along with a training on advanced topics of WISC-IV.  Don't forget to peek at the FAQ tab while you are there. There is also a Processing Speed Damian Case Study that has been produced.  I think it provides wonderful information if you are curious to see if your child has processing issues.

So how do we read the WISC-IV report?

This gets a bit more technical.  Please ask questions in the comment section and I will try to answer them as best as I can considering this is NOT my area of expertise (I am not a psychologist nor have I had training). 

Processing speed is an element of intelligence, as measured by many tests of cognitive ability, including the Wechsler Intelligence Scale for Children (4th Edition). Scores for both the Working Memory and Processing Speed subtests make up the WISC-IV’s Cognitive Proficiency Index. These abilities are separate from the WISC-IV’s General Abilities Index, a measure of core intelligence derived from an individual’s Verbal Comprehension and Perceptual Reasoning Indices (verbal and nonverbal abilities).

Each of these three subtests taps different abilities that contribute to the Processing Speed score. 

• Coding, which requires children to draw symbols, is heavily influenced by grapho-motor demands. Children with poor handwriting or dysgraphia may struggle with this task. 
• Symbol Search has less emphasis on motor output but requires rapid differentiation of abstract symbols. 
• Cancellation, the supplemental Processing Speed subtest, makes use of concrete images rather than symbols.

According to Steven M. Butnik, Ph. D., LCP, the Processing Speed subtest assesses the abilities to focus attention and quickly scan, discriminate between, and sequentially order visual information. It requires persistence and planning ability, but is sensitive to motivation, difficulty working under a time pressure, and motor coordination. It is related to reading performance and development. It is related to Working Memory, in that increased processing speed can decrease the load placed on working memory, while decreased processing speed can impair the effectiveness of Working Memory.
The Working Memory subtest assesses the ability to hold new information in short-term memory, concentrate, and manipulate that information to produce some result or reasoning processes. It is important in higher-order thinking, learning, and achievement. It can tap concentration, planning ability, cognitive flexibility, and sequencing skill, but is sensitive to anxiety too. It is an important component of learning and achievement, and ability to self-monitor. 

Tests of educational achievements make use of processing speed on subtests that measure academic fluency. For example, the Woodcock-Johnson Tests of Achievement include three subtests of fluency:

• Reading Fluency. For three minutes the student quickly reads simple sentences and answers yes or no to each.
• Writing Fluency. Using three words and a picture, the student quickly writes simple sentences for seven minutes.
• Math Fluency. The student rapidly performs simple calculations for three minutes.

Children who have trouble activating, are inattentive, or have sluggish cognitive tempo may struggle on all of these tasks. Children with slow motor output would have less trouble on Reading Fluency but would do more poorly on the Math and Writing Fluency tests. Working memory problems would likely have a greater impact on Math Fluency than on the other fluency tasks.

A subset of children with reading disorders display marked difficulties with verbal and visual processing speed and that may indicate a subtype of reading disorder. Individuals with impairments in both RAN (rapid automatic naming) and phonemic awareness had the most severe reading problems when matched on phonological skills. Individuals with worse RAN scores had poorer performance on timed word recognition and comprehension tests.

Other tests that measure Processing Speed and Working Memory

So there are other tests that measure processing speed and working memory. Other tests that may be used at the school include the Woodcock-Johnson Tests of Achievement, Wechsler Adult Intelligence Scale-Fourth Edition (WAIS-IV) and the Wechsler Preschool and Primary Scale of Intelligence™ - Fourth Edition (WPPSI™ - IV). The last test , the WPPSI, is for children ages 2.5 years to about 7.5 years old. Each of these tests have components that can measure processing speed.

The Woodcock Johnson IV can measure cognitive processing speed and working memory. Cognitive Processing Speed is the ability to quickly perform both simple and complex cognitive tasks, particularly when measured under pressure to sustain controlled attention and concentration. This cluster includes Letter-Pattern Matching (locating and circling two identical letter patterns in a row of 6 patterns) and Pair Cancellation (locating and marking a repeated pattern as quickly as possible). 

In the WJ-IV the short-term memory subset measures the ability to capture and hold information in immediate awareness and then use it or manipulate it to carry out a goal. This cluster includes Verbal Attention (answering specific sequence questions when provided with a series of animals and digits from an audio recording) and Numbers Reversed (holding a span of numbers in immediate awareness while performing a mental operation on it).

Image courtsy of CultofPedagogy

Processing Speed's Impact on Learning and Emotional Issues

Slow processing speed is not a learning disorder. To be considered to have a learning disorder, a student must have the following:

• Average or better intelligence
• Patterns of substantial processing differences
• A significant difference between abilities and achievements.

However, research has shown that processing speed is linked to reading development and reading performance. Specifically, processing speed may be a factor in these situations:

• Reading disorders such as dyslexia
• A subset of reading disorders in which individuals display marked difficulties with verbal and visual processing speed
• Grapho-motor problems (dysgraphia). Individuals with dysgraphia have serious trouble forming letters and numbers; their handwriting is slow and labored; they may have trouble with spacing between words; they mix upper- and lower-case letters; etc. Because neatness only comes with their taking much time, their written work can be very strained and painful.

So what does slow processing speed look like? Kids might have trouble with:

• Finishing tests in the allotted time
• Finishing homework in the expected time frame
• Listening or taking notes when a teacher is speaking
• Reading and taking notes
• Solving simple math problems in their head
• Completing multi-step math problems in the allotted time
• Doing written projects that require details and complex thoughts
• Keeping up with conversations

Image courtesy of sideshare.net

Parents and teachers may notice that a child:

• Becomes overwhelmed by too much information at once
• Needs more time to make decisions or give answers
• Needs to read information more than once for comprehension
• Misses nuances in conversation
• Recognize simple visual patterns and in visual scanning tasks
• Take tests that require simple decision making
• Perform basic arithmetic calculations and in manipulating numbers, since these operations are not automatic for them
• Perform reasoning tasks under time pressure
• Make decisions that require understanding of the material presented
• Read silently for comprehension
• Copy words or sentences correctly or to formulate and write passages
• Has trouble executing instructions if told to do more than one thing at once

Some key things to note:

• Slow processing speed can affect the ability to make decisions quickly.
• Trouble with processing speed can affect a child’s executive functioning skills.
• Having your child evaluated can reveal problems with processing speed.

So what can I do to help my child learn?

INSTRUCTIONAL STRATEGIES:
The key instructional strategy for students with slow processing speed is to reduce the time pressure associated with a task. This can be done in three essential ways:

• Give the student more time for their work
• Allow longer response time for the student to respond orally to questions in class
• Complete seatwork assignments in class
• Allow suficient time to make decisions when offered a choice of activities
• Allow extra time for tests, usually time and a half
• Provide extra time for the student to complete in-class assignments
• Develop keybording skills
• During writing intensive exercises allow the use of a computer or other word processor
• Reduce the amount of work the student is required to do.
• Shorten the assignment so it can be accomplished within the time allotted
• Focus on quality of productions, rather than quantity
• Shorten drill and practice assignments that have a written component by requiring fewer repetitions of each concept
• Provide copies of notes rather than requiring the student to copy from the board in a limited time
• Allow student to answer orally for written tests and other assignments when possible
• Provide direct and explicit instruction in strategic problem solving, reading fluency, and organizational strategies



I haven't read it but it looks interesting.

• For example, teach him how to use graphic organizers to plan writing assignments or to enhance reading comprehension. Help him improve his visual imagery so as to support visual working memory, and show him how to use mnemonics such as acronyms, acrostics, and pegwords to learn new information.

Build the student’s efficiency in completing work through building automaticity.

• Provide instruction to increase the student’s reading speed by training reading fluency, ability to recognize common letter sequences automatically that are used in print; and sight vocabulary
• Provide timed activities to build speed and automaticity with basic skills, such as:
  reading a list of high-frequency words as fast as possible and calculating simple math facts as fast as possible
• learning simple math calculations through flash cards, educational software exercises, and music
• charting daily performance for speed and accuracy

Train the student in time management techniques to become aware of the time that tasks take.

• Teach the student to use a stopwatch or to record his or her start and end times for assignments to monitor the time spent on each activity. Set a goal for the student to gradually reduce the time needed to do these tasks.

ASSESSMENT STRATEGIES:
Assessment strategies emphasize power tests that focus on the knowledge the student has, rather than on speed tests to complete a large number of questions within a limited time.

• Emphasize accuracy rather than speed in evaluating the student in all subject areas
• Replace timed tests with alternative assessment procedures
• Allow extra time for tests and exams. Give the student supervised breaks during the test
• Provide a reader or text-to-voice software to read test questions to the student to accommodate for slow reading fluency
• Provide a scribe or voice-to-text software to record the student’s answers on tests to accommodate for slow writing fluency
• Use test formats with reduced written output formats (e.g. multiple choice, True / False, fill in the blank) to accommodate for slow writing fluency

I hope you have found this blog post helpful.  I know it was for me in researching and writing it.  I learned a lot about myself and a lot about my children.  Please feel free to leave comments including any questions or concerns.  I will answer to the best of my ability. 

Thankful For Change

For the last two months I have been dealing with personal and work struggles making it hard for me to find time to write.  I am hopeful that I will be able to write more now that issues with life, work, and marriage have settled down.

Lately I have been focused on several things....

Types of ADD.  After years of fighting in my marriage, with the help of some marriage counseling, we have come to the conclusion John and I suffer from ADD.  I explains why we have many of our fights.  I have learned to overcome several of the issues I have with my ADD.  John still suffers from the effects of his ADD.  As we both work on our issues and identify things early it will be easier for us to curb the fighting.

Work. After a crappy last few months my job performance greatly suffered.  I had a performance review.  It was VERY unflattering but in the last few months it is understandable.  I am thankful that at least my management understands my difficulties and is not holding it against me.  Work continues on.  I am thankful to have a job!

Life.  The kids have been doing well.  We have been going to church since James got really involved with the bible and the idea of a God.  He has been so full of questions it worked best to take the children to church and bible class.  I am happy they are getting to go.  We have refrained taking the children because Joseph was so behind physically and prone to serious health problems over common illnesses that it was not worth the risk.  Even though Joseph still suffers from health problem when cold/flu/RSV season is over we risk mixing with others.  For the last month the kids have been attending church and have not been ill.  Thank God for that!

Today is Memorial Day.  We spent a quiet day at home and enjoyed our day.  I am thankful to the men and women that serve and served this country to keep us free.  Today has been a good day to reflect and be thankful!

Wound Up As Tight As She Can Go...

House bursting at the seams...LOL

I know it has been awhile since I last posted.  There is just so much happening that when I am not too tired to write about it that the thought to cover everything that has happened since the last post leaves me overwhelmed.  When my day is normally over I have no desire or energy to write at that point.  Today I am taking the time because I am at home watching my children while working.  It affords me a bit of time to work on the post.

At the moment I am wound up about as tight as I can go.  I got up this morning with an overwhelming urge to cry.  I am not entirely sure why...what brought that on this morning in particular.  I think it is because I am tired, mentally and physically.  That I need a break from people, from work, from my life in general. 

Since my last post I found out I am diabetic.  It is had to admit but its true.  All the women on my mother's side of the family are/were diabetic.  I knew eight or more years ago I had problems with too much insulin production and started to take metformin.  Now here I am, at 40, diabetic.  It is a bit depressing.  I have been trying to manage my diet and stay away from sugar and carbs but it's been hard.  Ironically is it a bit easier when I am at home because I know I can make food and have a bit more control over what I am eating.  When I work I often have to grab fast food because I don't have time or energy to make things. I really have got to work on that!  I know I am slowly killing myself but it is hard to change (as she sits drinking sweet tea [hey, at least I used the equivalent of Baking Splenda]).

After having Bailey, who is no longer working for me, and her grandfather live here we have added two more early twenty-somethings to the picture.  That makes five adults and three children (the little kids) in the house.  I have a BUSY house...practically bursting at the seams!  After taking care of the little children today and not getting near enough actual work accomplished I am now sitting in my room writing this blog post and then I am going to work on...well, work. Don't forget also that John will be coming and adding himself to the menagerie at the end of the month.  It is interesting that with all these people in the house I still feel alone and stressed.  The older kids (twenty-somethings) are nice but have their own agenda.  Bailey's friends, in particular, are quite nice and rather interesting to talk to when they have time. It's weird how being in a house full of people can still leave you feeling lonely.  Bill goes to work, the older kids stay in their room or leave and I am left to hang out with the little children who slowly drive me nuts during the day.  I don't think they would drive me as batty if I knew I did not have work (real work, the kind that pays the bills) to complete. 

Speaking of going nuts...

A friend posted this on Facebook today.  It came just in time as the children were driving me to my breaking point...

A Hundred Tears:

A hundred times I told him
a hundred times and more,
"Don't hit the dog, don't run away
don't throw that on the floor!"

All morning he was tireless
he never stopped to think
he broke my lamp, he spilled his milk
dumped the kitten in the sink.

He ran around the house all day
without a stitch of clothes
he flapped his hands and sang and cried
and fell and bumped his nose.

At dinner came the moment
when I'd simply had enough
he refused to eat his dinner
and that's when I got tough.

I sent him off to bed at once
despite his tearful pleas . . .
I let him cry himself to sleep
it brought me to my knees.

When silence fell upon his room
I slowly crept inside,
and gazing on my little son
I lost my foolish pride.

A hundred tears I wept right then
a hundred tears and more
for this little child who spilled his milk
on my nice bright shiny floor.

Who am I to scold my son
for things he cannot know?
he looks to me for patience
to help him learn and grow.

A hundred prayers I said that night
a hundred prayers and more
Help me Father, teach my child
this child that I adore.

And as I left his room that night
I kissed his tears away
and promised that tomorrow
would be a better day.

~By Susan Meyer


Nothing like a well timed reminder that I need to be patient with my children and others. Tomorrow is another day...

Where did the last month go???

Photo Credit: Chasedumont.com

When it becomes a long time since I last made a journal entry it becomes harder to get started because I know there is a lot I want to say but I never seem to have time. I get up at 5am-ish and leave the house no later than 6am so I can be at work by 7am. I work until 4 or 5pm and drive an hour home. By the time I get home, feed the children and put them to bed the small window I have to myself I do not feel like typing on the computer. Though I HATE the hour commute each direction each day I LOVE my job. I can barely say how rewarding it is to be working in the career field I went to school for AND be good at what I do. I have had several people in the office in the last two weeks tell me what a great job I have been doing. That really makes me feel good!

So let me give a brief run down on what all has been happening.

February 12 - I took the kids to a pediatrician. He is new to us and we had a great visit. I am happy we went there. As I have gone around to other specialists they know the new pediatrician and say he is a great guy. How is that for giving you confidence in your primary care doctor!

February 15 - John came to Phoenix for the weekend. We are working hard at re-building our relationship. I am hoping it can happen (for our sake and the kids).

February 19 - Joseph went to the Melmed center to be evaluated. Dr. Melmed examined Joseph and said he may be labeled as autistic. He would need additional psychological testing. It really saddens me to hear this. Mostly because that is not what I think is wrong with Joseph. To me autism is a list of symptoms of a disease. I want to know the disease (root cause) on what is going on with my baby. I am glad of all the improvements Joseph has made in the last year and a half but I would say he is now, at least linguistally, where Margaret was two years ago. I am hoping he will continue to rapidly improve with his speech. I have contacted a psychologist to do the additional testing. I am waiting to hear back from their office.

February 28 - We finally got to see the ENT. I was FURIOUS at first with the doctor's office. I had gotten a call the day before and I asked them if they had received all the information for the Margaret and Joseph to be seen the next day. I was told yes. I had spent an hour in the office last time filling out paperwork and medical releases for them on Feb. 6. The day of the appointment I was called at about 10am. The nurse asked about Joseph's surgery. I said he did have surgery but I did not have the records handy. They were at the hospital and I did not remember any of the details because this surgery happened back before Joseph turned one. The nurse then tells me the doctor will have to have the records and Joseph would not be sent that day. I was LIVID! Here I was having the appointment cancelled on me at the last minute. I got snippy with the nurse but I ended the call very politely. It completely took her off guard because I KNOW that was NOT how she was expecting the phone call the end....LOL. About an hour later I had the ENT doctor call me. He said he wanted to discuss Joseph and would I please call him. He said he was out at the hospital on an emergency and gave me his PERSONAL cell phone number. I was shocked! Every bad thought I was having I lost at that moment. I called the ENT back and spoke to him. I explained about Joseph and why I wanted to bring him in. The ENT agreed with me and said he was looking forward to seeing Joseph this afternoon. I told him his office staff had cancelled Joseph's appointment. He said there was no need for that and to bring him in. He said he was going to call his staff and tell them to put Joseph back on the books. We went to the appointment. I took everyone with me. I had me, Bailey and Alexa along with all three children. In the waiting area James decided to misbehave so I had Alexa take him back to the van for a bit. I know he screamed like a banshee but he did finally calm down. He was able to rejoin us before we went back to the exam room. While there the James was having a fit. He wanted to see the doctor too. Plus Bailey had told him he would get shot if he had to see the doctor...you know what, James agreed. This is the danger to threatening James with something you can carry through. He takes things so literally and he would expect you to carry though with what you promise. He would NOT let it go! When the ENT came in James INSISTED he get a shot. The doctor tried really had to humor him. The fact he took the time to do that made me like the guy! He brought in suckers in the end and James was at least distracted for a bit. We started to talk about Joseph. I explained all that was going on with Joseph and the multiple health issues he was having. Bailey piped in and said I did not believe in vaccinating the children or giving them medication. I explain why to the doctor since he had asked about giving Joseph the flu shot vaccination. When I was done he turned to Bailey and said it was a good thing I was not giving the vaccinations or medication consider all that is going on with Joseph and there are still a lot of unanswered questions. So the ENT examined Joseph and Margaret while we discussed Margaret. Margaret was found to have enlarged adenoids and inflamed sinuses. We are going to treat her with medication at the minute since the only other real option is surgery. I have no interest in having her go through surgery at the moment. I had also given the ENT a list of all the specialists we had seen in Las Vegas. The doctor was nice enough to recommend local doctors for each of the specialties. That was SUPER nice! He is a really great man and I can tell he care a lot about the children. What more can you ask for in a doctor?

March 8th - I get a notice from my insurance about the visit from the Melmed Center for Joseph. I had checked and there was not a problem. The insurance comes back though and says that the Melmed Center is out-of-network and I about nearly panic! The bill is for $660! I cancelled my appointment for Margaret (since it was for the March 13th) because I panicked! I wanted to make sure the medical insurance was going to cover the bill. It took several days and several phone calls but we finally think we have it straightened out. At least the insurance admitted there was a billing error on their part.

March 12th - I called the Geneticist's office. OMG, I wait on the phone for someone to pick up for 40 minutes! I get through and give them information. I find out they are booking appointments into October at the moment. Not shocked but I was hoping for better. They would not schedule an appointment for me until I fill out all the new patient paperwork. I got the stack in a few days ago...WOW! So I will be working on this information so I can fax it in and set an appointment.

You can see the height difference in the boys. It's a lot!

March 15th - I took Margaret and Joseph to the endocrinologist. It was nice because Joseph I was able to talk to someone about all the hormone concerns I have for Joseph. Joseph does not produce growth hormone on his own. When injected with insulin he did produce the growth hormone. So he is CAPABLE of producing growth hormone so I want to know WHY is he not producing the hormone on his own. Normally you have to fight hard to get growth hormone therapy approved since it is expensive ($2k to $3K a month) plus you have to give it as an injection every day. I would like it if we can find the root cause of why he is not producing growth hormone on his own because we might be able to fix that earlier AND we could skip having to go through the expense and daily injections until he is in his late teens. We spent 50 minutes going over Joseph's medical information. The endocrinologist doctor said he had received 60 pages of information on Joseph and did not want to have to read through it all (sad yet kinda funny). I explain in he end my speculation that Joseph my have cerebral folate deficiency and/or mitochondrial disease. The endo. doctor agreed with me that there is a strong chance Joseph could have mito. John said he was the first doctor to agree. I think he was a bit shocked to hear that news too. I had been telling him my suspicions for sometime but I don't think he has been paying a lot of attention to me. I am just the mom who spends too much time on the internet reading and researching stuff but to hear it from a specialist was different.

March 18th - Finally got someone from the Long-term care people call me. They supply the funding for the services I could get the children (such as therapies (OT, PT and ect) along with anything else) through the DDD. I tried to do this before but I could not. I am hopefully I will be able to get it done this time. Got the ball rolling again at least.

Happy Birthday Bill!

March 19th - James had his appointment with the Melmed Center. Since we got the insurance issues worked out I felt safe in taking him. The doctor examined James. It was rather funny. James has become VERY outspoken lately (sometimes good but sometimes bad). In the waiting room James was talking to a little girl (about 8) and then went to her Dad and asked if he could kiss her. What?!?! LOL At least he was polite enough to ask first BEFORE actually trying to kiss her. So some social skills are kicking in! :) When we go back to the exam room the doctor hold his hands so he cannot move away but he would not really ever look the doctor in the eye but let me say the boy developed diarrhea of the mouth! He was saying EVERYTHING including my phone number and our address. I am glad he knows this information but he does not know when it is okay to share and when it is not. The doctor asked me if he has a social filter and I said not really. Then we tell him a story of when James was at the doctor's office with Bailey and he saw an African American. James pointed to him and said, "He is black. We are white. Why is he black?" Know I acknowledge we lead a sheltered life and we could expose him to more ethnic diversity but he has seen African American people before. Bailey apologize and the man was okay about it but it you saw that at the wrong time in the wrong place (especially in the south) you could get beaten up for that. In the end the doctor said he agreed that James is autistic and he is most likely Asperser's. He wrote on his evaluation for James that he is a bright, high-functioning kid. I have to say...I agree. We have another appointment to go back later.

That evening we celebrated Bill's birthday!  The kids were SO excited!  They LOVED eating cake and seeing the candle blown out.  I am glad they had fun!

My Baby lost her first tooth!

March 20th - Mark it on your calendars...Margaret lost her first baby tooth and she is the first of the babies to lose ANY baby tooth on their own (Joseph has his two top teeth pulled awhile ago). I cannot believe she lost her tooth. I am glad she did though. She had her permanent tooth emerging in the floor of her mouth. It looks HUGE compare to the baby teeth. I am hoping the tooth will move forward on its own but I am worried it may not. Will be making an appointment for her to go to the dentist. I got to help play tooth fairy. I had found a small Hello Kitty bag with a toothbrush, toothpaste and dental floss. I put that under her pillow along with a dollar bill. I also placed a dollar bill under the boy's pillows. I did not want them to get it into their head that they had to get a tooth out to get something from the tooth fairy too. In the end the money meant nothing to the children...everyone fought over the Hello Kitty stuff...LOL!




March 27th and 28th - James and Margaret have an appointment with the dentist. They will go first and the next day Joseph will go. It will be good to take them in and have them examined.

Now you are caught up on at least part of what has been going on. I have been SO busy with work and other things too. At least I have been able to get things squared away though. In getting all of this off my mind it leaves me free to think about other things and do write the stuff I need to for work.....Thank goodness! Got to get a paper researched for school and then one written for work. Back to work for me...

SO tired....

I want to write but I am SO tired!  Getting up at 4am is rough.  I like the commute though because the traffic is lighter (still a lot of people out).  By 9pm (now) I am SO sleepy!  I am sorry but I have to get to bed.  Night people.  I will write tomorrow or at least try hard.  I promise!

Things ARE Falling Into Place!!!

I am SO excited.  I finally got computer access at work.  Seriously, it was painful all the waiting this week! All I have been doing at work is reading material on HOW to do my job.  I am hoping to start next week to ACTUALLY get started learning my job.  I can't wait!

The housing situation...  I am ecstatic to report it looks like I have a hard lead on a house! It is in Gilbert near McQueen and Elliot.  The house is in a SUPER nice area and zoned for a nice school.  It is a place where the children and I can settle down and live comfortably for YEARS!  It has been SO long since I have had a house where I can stay for awhile.  The rent is affordable.  The house is spacious and has a nice backyard. The backyard is enclosed with a small covered patio area AND grass!  There are few homes in the Phoenix area I have seen that have grass.  Most have rock or dirt.  This one HAS grass!  The home is own by a property management company.  I had to fill out an application and sign it in blood (not really but it felt like I should have).  I had to ask my dad to put down money on this house and to co-sign for me since I do not have a recent work history.  So far it all looks good.  If I get this house I will be SO happy!

Babysitter/Nanny situation...  I am happy to report that Bailey may be moving in with me if I get this house.  I have also found a lady that can take the children for me too.  She runs a daycare in her home but she currently is not taking care of any children.  This is PERFECT for me.  For one thing the children are a handful all by themselves.  The second is that Joseph cannot be around a lot of other children since he could get sick.  Great situation.  This lady, Jennifer, is also older (my age and not 18), has raised children of her own and thinks taking my children would be FUN because it would be INTERESTING!  How AWESOME is that?  LOL   She says this now.  What until she meets them...lol.  Jennifer also lives close to the possible house making that situation even better!  Jennifer can drive and is willing to drive the children to their doctor and therapy appointments if I can keep them close by.  So my thought is that Bailey can live with me.  I can get up super early and go to work.  Bailey and the children can sleep.  Once they are up Baily can wash the children, get them dressed and make breakfast.  Once they are fed Bailey can call Jennifer and she would come and get them for the rest of the day until I can come and get them.  Not a bad idea I think!

So job situation is improving and the people I work with are very nice.  The housing situation, with a LOT of help from my parents, might be fixed soon.  The child care situation is working out with some possible back ups. With Bailey AND Jennifer taking my children I would hope it would keep them from getting burned out.  The kids can be rough on people.  Just drive you NUTS some days!

Things are falling into place.  I think Bailey and her Grandfather have adopted us and to be honest I like that.  Being out here and knowing NO ONE makes me worried.  If something happens to me what would happen to the children?  Or me?  It is nice to know someone would be able to check on me.   : )

Now I Know Why I Have Been Losing My Hair...

hip2give.blogspot.com

It is due to STRESS, STRESS and MORE STRESS!!!  I hope it is anyways.  Then maybe my hair will grow back one day. Sigh!  Ok, so lets start with Monday.  It was my first day back to work in almost five years. The night before I get a message from my husband, the man who left, on Facebook.  Yet again he does not seem to understand, or worse yet, he does not care how much I resent leaving my children and returning to work.

Hey,

I just wanted to tell you good luck tomorrow. I know you have been waiting for this moment for a long time. I have been praying every day for you. I know it will be tough to be away from the children, but it will also be good to get out there are do something you have been planning for and educating yourself for. I will be thinking about you tomorrow and trying to send you good vibes. I assume you found a babysitter. I hope she works out well and you like her. I know she will love the kids...everyone does.

Does the hotel have a phone number I can call? I'd still like to call the kids after school tomorrow, and I know you will have your phone.

I will talk to you soon.

John

Here is my reply....

John,

I have NOT been waiting for this moment for a long time. I had this moment FORCED upon me when you decided to leave us without sufficient means of support in July. I have been planning our move since I have been offered the job. In six weeks time, with very little help from you, I have had to pack, move and try not to be homeless.

You KNOW I have no desire for this job. Yes, it is what I went to school for and this position is perfect for me career-wise but YOU KNOW I did not want to work until next year. That the children, in particular Joseph, still need me. It is not a matter of just "being tough being away from the children" but they need me to take care of all their emotional, medical and school needs. It has been very tough for our autistic children to make the transition and the stress and lack of routine has all ready begun to show in behavioral issues. I see it as SOLELY YOUR responsibility for the emotional and behavioral problems you have caused the children by having me leave them.

Don't wish me luck or send me good vibes. You have not been a part of this in ANY way except CAUSING all of this to happen! You have done the bare minimum for me and the children. As you said you ASSUME I got a babysitter. You have NO idea what I had to do , who I got to watch the children and how it was done. I have found someone adequate but she will not be able to serve long-term because she cannot drive. So she cannot care for the children after we get out of the hotel. She cannot take the kids to any doctor,therapy or school appointments. I have to continue my search for a sitter. Even paying someone ALL of the child support you send apparently is not enough to hire a quality sitter so I am not sure what I am going to do since I need my income to pay rent, food and other bills.

As for calling the hotel you can try but the room phone is unplugged because the children will not leave it alone and had randomly called a few people in the hotel. I suggest you call in the evening at 8:00pm. Then they will get a chance to speak with you before bed.

Michelle

Now that was how I was greeting on Sunday night.  I went to work Monday.  My nanny showed up on time but I was late leaving the door.  It was hard to leave.  Off to work I went.  I used the GPS on my phone and after a wrong turn (my fault) I made it to the right area but I could not find the building.  I was SO glad I left the house at 7:15am and told my work I would be in by 8:30am.  My work was on jackson Street and I could seen the number jump in a HUGE way so I knew I was missing something. I pulled into the parking lot and I got out of my car.  The VERY first person I saw with a badge on I asked where I needed to go.  I was lucky because they knew. Thank goodness!!!  By the time I got in it was 8:20am.  I got there 10 minutes early! Yea!  

I was there for a bit and I get my first call from the nanny.  She was just checking in.  Good.  I keep busy at work reading material and getting all the newbie stuff done.  I get a second call after lunch.  This call was not good.  Bailey, the nanny,  says James was playing the Kindle. That is good in a way because it keeps him busy and out of trouble.  While he was playing Margaret goes over and tries to watch.  When she does James hits her.  Now, when I am there, I make James apologize to Margaret and say he is sorry for hitting her.  That is the end of the discipline.  Bailey on the other hand him in time out.  James has not been doing well with time out.  She tells me that he is crying hysterically and had been hanging his head on the wall.  That was when she decided to call me.  She put James on the phone and he was crying so hysterically that I could hardly understand anything he had to say.  

I spoke to him and said he needed to calm down.  I got him telling me he was in trouble and he was sorry.  It  broke my heart.  I said it was ok and he could not hit his sister.  He had to go and tell her he was sorry and give her a hug.  He got off the phone and I had a talk with Bailey reminding her that is he is getting hysterical like that then the form of discipline she is using is not working.  She said she did not want him to get away with the behavior and I said I agreed but that is why I make him apologize and say he is sorry and then give a hug.  I hoped she understood why I did not really want him in time out any more if he is getting hysterical.  

When I hung up the phone I could think of little else until I got home.  I cried at work.  I wanted to be home with James.  He is NOT taking this transition well!  The behavior I have been seeing is something that I have NEVER seen before.  I had NEVER seen him bang his head on the wall when upset.  :(

When I got off work and got home all was quiet at least.  Or so I thought.  I was trying to get the children ready for bed when Bailey called again.  She told me she was approached by the hotel manager and told that SHE was going to get kicked out if the children were so loud that someone complained again.  She was concerned about coming over to watch the children today because she is afraid of someone complaining again.  Baily, God love her, is a VERY nice lady but I am not entirely certain she got the details right on that. I would think WE would be kicked out of the hotel if we were loud again.  I hope not!  This just emphasizes the need to move into a home of some sort.  With my credit being trashed now I am not sure if I can make that happen.  We HAVE to get out of here though.  The children are bouncing off the walls here because the hotel room is so small.  Bailey is doing a good job in trying to take them out.  She walks them over the convenience store and swimming but they just need more space to run and play.  To spread out and not be on top of each other like they are in the hotel room.  Plus they REALLY need an enclosed yard to run around in.

Ok, so today.  Bailey comes to work.  I tell her let James play the Kindle all day if needed. I HATE that because I don't want him dependent on it but on the other hand I do not want ANY of us thrown out of the hotel!  I left for work.  It seems it takes me 45 minutes to get there.  I made it to work and my day was going ok.  I was calling to check in on James an hour after I left.  Everything was fine.  I got a call at 11:35am and it was Bailey.  She was saying she was not feeling good.  She said the kids were fine and she had to get after James once while they were out at the pool but that was it.  More of my day passes.  My boss comes by and says there is a conference meeting with the EPA representative at 2pm today and I needed to be there and so will HIS boss.  At 1:00pm I get another call from Bailey.  She says she is feeling really sick and her grandfather got her an appointment to the doctor at 3pm.  She wanted to know if I could come home.  Since it takes me 45 minutes to drive to work I figure I have to leave by 2pm.  Of course this is RIGHT at the time of the conference!  Sigh!  I can't catch an effin' break!  So on my second day on the job I have to go to my boss and say I am sorry but I have to leave.  I am going to have to make up the lost work hours since have have no time accrued anywhere.   

I come home and Bailey leaves.  I am thankful I hear later that it was a very large stomach ulcer that was giving her a problem.  She is now back on medication for it but she tells me that the medication makes her sleep so she is worried that she cannot continue working for me full-time.  She wants to work part-time and find someone else to fill in the rest of the time.  She said she could work for now but I need to look for someone.  Back to nanny hunting for me.  Sigh!  

I am tired.  SO VERY TIRED!!!

Should I mention STRESSED too?

When Did My Life Turn Into A Jerry Springer Episode?

Photo Credit: swaysuniverse.com

So today my life could have been featured on a Jerry Springer episode!  Why does it have to be life that!?!  I have ENOUGH to deal with!  It all started innocently enough.  I found a listing for a condo in Scottsdale. I called last night and asked the realtor to show me the property today.  She said ok and I asked HER for a time.  She said 9:30am.  I said ok and I asked Bailey if she wanted to go with us.  I was  not intending for her to babysit for me at all today.  Maybe help keep the kids in line for a bit while we looked at the condo but that is all.  

mcarizona.com

We arrive on time.  We all get out and look around.  It is nice.  Very bland and boring because everything looks the same but it is quiet and appears very safe.  I know the schools in the area are good too.  We stayed around and I never saw the realtor we were suppose to be meeting.  I call her phone three times in thirty minutes.  No answer!  So we left and I called the property management company telling them I wanted SOMEONE to show me the property.  I head out and go to the McDonald's on North Scottsdale and Thomas.  We get there and the kids know there is a playland here so they want to go inside.  At the same time I pulled up the realtor called me back saying her ringer was off and she missed my calls.  She said she was inside the condo!  Are you friggin' kidding me?  I said I would head back after I get everyone settled down.  

Bailey and I took the children inside and I got some food for them.  I headed back to the condo leaving Bailey and the children at McDonald's.  I should NOT have done that!  I went back and saw the condo.  It would suit our needs but there are some things about it that does not make it ideal for us.  I am torn on what I should do.  In the meantime, while I am gone, is where all the action is...

When I arrive Bailey tells me the whole story of what happened while I was away.  About 10 minutes after I left the children started to get rowdy.  James was running around like a wild boy and was up in the playland equipment poking people in the eye.  Why he was doing this I have NO idea!  Bailey told him to stop and he ignored her so she got him and forced him to sit in time out.  While sitting in timeout he was getting loud and crying.  She was trying to get him to settle down and when she was about to let him go he poked Margaret in the eye!  So she took James' hand and spanked it.  Now picture it....Margaret is wailing, James is crying and saying Bailey slapped him and she was going to get a spanking from me while Joseph sat in his stroller.  With all the commotion the shift manager came over and asked her and the children to leave the playland area.  Bailey said that was fine.  She got up and moved her and the children into the restaurant area.  

scottsdaleaz.gov

Now Bailey was sitting in the restaurant area with both James and Margaret on a backpack leash and Joseph in the stroller.  I am SO lost and I am telling Bailey I am trying to find my way back.  James and Margaret are crying.  They want to go back into the playland but now they are not allowed so they start screaming and crying.  James is pulling on his backpack leash and she does what I told her to do.  When he pulls like that I pull back and make him land on his butt.  He is screaming and crying. The shift manager approaches Bailey again and tells her she has called the police.  Bailey said that is fine and she was going to sit there until the police arrived.  I am still trying to find my way back.  The police come and Bailey explains what happened.  That James is a FOUR YEAR OLD CHILD and was misbehaving by poking people in the eye, she tried to correct his behavior but that only made things worse, then the manager kicked them out of the playland, that made everything worse and she said she was waiting for me to return.  She explained that the children were autistic and did not always listen to instructions.  The policeman said he understood.  He had a niece that was autistic.  So after that Bailey went outside with the children and waited for me to arrive. OMG!!!  What a CRAZY situation!  I don't think the manager even warned Bailey she was going to call the police!

I was SO freaking lost!  The GPS on my phone kept sending me to the wrong places. I had to get the cross streets from Bailey and google the address to get the right McDonalds.   I apologized over and over again to her.  Not only for the way the children behaved and me being late but that I had NEVER intended to be gone for SO long!  I bought her lunch to help make up for me being so late and I talked to her about what a great job I thought she did handling the situation she was in.  I have to admit she kept a cool head in the situation!

Tomorrow I start my job.  I am excited to go back to work, scared and worried for the children.  John send me a message on Facebook and I replied.  You can read what I said...

Hey,

I just wanted to tell you good luck tomorrow. I know you have been waiting for this moment for a long time. I have been praying every day for you. I know it will be tough to be away from the children, but it will also be good to get out there are do something you have been planning for and educating yourself for. I will be thinking about you tomorrow and trying to send you good vibes. I assume you found a babysitter. I hope she works out well and you like her. I know she will love the kids...everyone does.

Does the hotel have a phone number I can call? I'd still like to call the kids after school tomorrow, and I know you will have your phone.

I will talk to you soon.

John

Here is my reply...

John,

I have NOT been waiting for this moment for a long time. I had this moment FORCED upon me when you decided to leave us without sufficient means of support in July. I have been planning our move since I have been offered the job. In six weeks time, with very little help from you, I have had to pack, move and try not to be homeless.

You KNOW I have no desire for this job. Yes, it is what I went to school for and this position is perfect for me career-wise but YOU KNOW I did not want to work until next year. That the children, in particular Joseph, still need me. It is not a matter of just "being tough being away from the children" but they need me to take care of all their emotional, medical and school needs. It has been very tough for our autistic children to make the transition and the stress and lack of routine has all ready begun to show in behavioral issues. I see it as SOLELY YOUR responsibility for the emotional and behavioral problems you have caused the children by having me leave them.

Don't wish me luck or send me good vibes. You have not been a part of this in ANY way except CAUSING all of this to happen! You have done the bare minimum for me and the children. As you said you ASSUME I got a babysitter. You have NO idea what I had to do , who I got to watch the children and how it was done. I have found someone adequate but she will not be able to serve long-term because she cannot drive. So she cannot care for the children after we get out of the hotel. She cannot take the kids to any doctor,therapy or school appointments. I have to continue my search for a sitter. Even paying someone ALL of the child support you send apparently is not enough to hire a quality sitter so I am not sure what I am going to do since I need my income to pay rent, food and other bills.

As for calling the hotel you can try but the room phone is unplugged because the children will not leave it alone and had randomly called a few people in the hotel. I suggest you call in the evening at 8:00pm. Then they will get a chance to speak with you before bed.

Nothing like the parents verbally fighting.  Sigh!  He seems to have NO idea how much I resent him at the moment for making me leave the children.

Where did the Motivation Go?

I was so tired when i got up at 7:00am this morning.  Since I went to bed about 1:30am that gave me about 5.5 hours of sleep.  For me this is normally enough but not lately.  I am not sure why. I ended up being able to take a nap of sorts (I was lying down and the kids played around me) from 1pm to 3pm. I got up but I am still tired.  Part of my problem I think is the interrupted sleep.  The second problem is the lack of motivation I am feeling since I have no plan. I basically have 10 more days to pack and clean out this house and ....then what?  

When I laid down for a nap I had James crawl into bed with me, then Margaret and finally Joseph.  I had the three children in the bed with me and they were all playing with different things quietly.  I thought about how much I would miss doing things like this with them.  It is not that it can't ever happen but it will be rare.  I will be gone to work and someone else will have to fill in for me.  They will get to referee fights, fix meals and kiss boo-boos while I am gone.  It makes me sad.  I feel like my children still need me, especially Joseph, but I have to leave them with a stranger while I try to make money to support us.  I have enjoyed my day with the children even though I should have been packing.

I called UCLA, still nothing!  I cannot believe I can't make an appointment to get this muscle biopsy done.  I am furious!  At this rate I will not be able to get it done before I leave town. Sigh!  I SO wanted to get this done. Then I had a call from the endocrinologist and I just cancelled the appointment.  He is only giving thyroid medicine to Joseph and to be honest he is not my favorite doctor so I am not too disappointed.  Tonight I will be looking for doctors in the Phoenix area and calling to make appointments.

Life trudges on.  I have no idea what is coming but the future will one day become my present and I guess I will not have to wonder what it will hold for me any longer because I will be living it!