Archive for the ‘General Blogging’ Category

As I indicated in my earlier blog, third grade was a significant year for my son.  It is then that he started to exhibit some medical unusual symptoms. During the second half of the year my son was experiencing extreme body movements along with pain-sounding yelling.  The neurologist and neuropsychologist debated if these were non epileptic seizures or Tourette Syndrome or a combination of both.  What we did know is the EEG of these events did not have the pattern of an epileptic seizure.  We worked closely with the neuropyschologist to provide a plan for the school with direction about how to deal with these events.  In addition we set up a plan for my son to see the neuropsychologist on a frequent basis.

Keep in mind, my son’s first kindergarten teacher recognized he had learning disabilities.  By the time he was in first grade that got him reading and language support.  In second grade the school added some occupational therapy support.  Then his second grade teacher had reported that at the end of the year my son was having difficulty with math.  Even though I brought his second grade teacher to my next IEP, no actions were taken. 

During the second half of third grade the topic for math that was being covered in the classroom was learning addition and subtraction facts.  In my opinion this is what triggered the movement and vocal tics that my son was experiencing.  The way the students were being taught the math facts was via one minute timed test on a specific set of math facts, which progressively got harder as you worked your way through the sets.  Each student had a goal of how many correct math facts they could do in one minute, which included taking into consideration their writing speed.  As time went on, I finally figured out that it was these tests that were causing my son anxiety and the result was these extreme movement tics and vocal tics.  Just bringing out the green piece of  paper that the tests were given on would cause a round of these tics.

When this first started my son missed quite a lot of school because he had these movements at night for hours at a time and he had a difficult time functioning the next day due to lack of sleep.  The other big issue was his safety.  There was no way to truly predict when he would have a bout of these movements.  He would fall down or have his arms jerk.  The potential for him to harm himself was high.  Eventually the school understood there were certain things needed to be in place before he went back to school. 

My son needed a private place in the class room that was safe and provided privacy when he was having a round of tics.  They placed a bean bag behind a screened area. This really didn’t give him privacy.  The whole class knew he was having problems when he went behind the screen.  They could also hear his screams.  You can imagine the embarrassment he felt.  Just another thing raising his anxiety.

 They also provided an aide to be there for him so that he did not harm himself.  This turned out to be a big mistake.  She made him anxious and was very judgemental without having any experience with either non epileptic seizures or Tourette Syndrome.  She would constantly tell me son while he was having a bout of tics that he was okay.  To my son, he didn’t feel okay.  The movements were drastic and very real to him.  Telling him he was okay was like accusing him of faking his condition.

My son returned to school slowly, increasing the number of hours as time went by.  While he was in this part-time mode the school provided a tutor for him.  Unfortunately the tutor was his third grade teacher.  At the time I didn’t realize she was part of the problem.  During these tutoring sessions they required me to be present.  The only subject she worked on was Math.  She kept pulling out the green paper timed tests and my son would immediately begin to have these tics.  I finally asked her if she could teach this math without the timed test.  In my opinion, there had to be a way to teach him the math facts without doing these stressful timed tests.  She absolutely refused to adjust her teaching method, and obviously my son continued to have bouts of tics.

Here was an example of a very obvious problem and our school failed to adapt to the situation.  These math facts become a repeating theme in the next couple of years.  The unfortunate thing is my son had figured out addition and subtraction on his own before he even went to pre-school.  As a result of this situation in third grade he started to fall behind in math.  The school had all the information to take action as a response to intervention and instead failed.  The weight of that failure is now on my son’s shoulders.  The math story does not end here.

Continued . . .

Recently I saw commercial advertising Oprah’s show Master Class where Ted Turner tells stories of how his principles of honor, integrity and hard work have shaped his achievements.  The show is scheduled for January 29th.  In this advertisement a couple of the quotes from Turner caught my attention, including his statement, “You really want to be careful when you’re dealing with billions and billions of dollars.”  Later in the commercial it quotes him as saying, I lost my job and was divorced from Jane Fonda.  “I just gritted my teeth and said I’m going to come out of this,” which is his reference to his empire that had crumbled, which is most likely the biggest failure in business history.

Ted Turner is known as an American media mogul and philanthropist.  He was the founder of the cable news network CNN, which was the first dedicated 24 hour news channel.   He was the largest private landowner in the United States until John C. Malone surpassed him in 2011.  Turner has also been known to say some controversial things which has caused a stir around him, such as he advocated for American to only have two children, which sounds a little bit like the communist country China.  He also joked about banning men from public office: “Men should be barred from public office for 100 years in every part of the world… The men have had millions of years where we’ve been running things. We’ve screwed it up hopelessly. Let’s give it to the women.”  Now thinking about it, this may not be such a bad idea.  Turner’s empire continued to grow until things turned bad for Time Warner.  At the time Turner owned the majority of the shares of Time Warner’s stocks and it is rumored that he lost $7 billion when the stocks crashed.

The commercial is praising Turner’s come back and his contributions to various charities.  It was also said that he lost 80% of his assets in the Time Warner debacle.  This started me thinking about why Oprah and others were applauding his accomplishments. I don’t find his accomplishments that amazing.  First of all, he lost $7 billion dollars, which is nothing to be proud about.  So, is he being honored for his accomplishment of landing back on his feet?  Probably so.  But then I thought, is that really an accomplishment.  He said he had lost a job.  He was Ted Turner!  How hard was it going to be for him to get a new job.  He was close to the richest people of the world.  He had access to pretty much anyone he wanted.

Instead, I find the average American much more amazing because they don’t have access to the money, the people and the opportunities that Ted Turner has. Turner says, You really want to be careful when you’re dealing with billions and billions of dollars.” Well how would you like to deal with only $42,000, which is the average yearly salary in America.  It is those people who really have a talent for using their money appropriately and surviving in this country.  What if he was laid off like many of us America’s?  A real marvel is trying to live on $363 a week, which is the most amount of money that one can get from unemployment.  That is a real accomplishment. How would he like to have to make decision like whether to buy groceries or to pay the utility bill?  He said he lost 80% of his wealth.  That still left him with almost $1.8 billion dollar!.  I wish I had an opportunity to suffer with only $1.8 billion dollars.  A loss 80% of $7  billion is nothing compared to losing 80% of $42,000.

I was just thinking.  Sometimes you have to put things in perspective and come down to reality with the rest of us.

I don’t mean to totally slam Ted Turner or Oprah Winfrey.  In fact Turner’s 11 rules to live by are pretty good:

1. I promise to care for planet earth and all living things thereon, especially my fellow human beings
2. I promise to treat all persons everywhere with dignity, respect and friendliness
3. I promise to have no more than one or two children
4. I promise to use my best efforts to help save what is left of our natural world in its undisturbed state and to restore degraded areas
5. I promise to use as little of our non-renewable resources as possible
6. I promise to minimize my use of toxic chemicals, pesticides and other poisons and to encourage others to do the same
7. I promise to contribute to those less fortunate, to help them become self-sufficient and enjoy the benefits of a decent life including clean air, and water, adequate food, health care, housing, education and individual rights
8. I reject the use of force, in particular military force, and I support United Nations arbitration of international disputes
9. I support doing everything we can to reduce the dangers from nuclear biological or chemical weapons and ultimately the elimination of all weapons of mass destruction
10. I support the United Nations and its efforts to improve the conditions of the planet

11. I support clean renewable energy and a rapid move to eliminate carbon emissions

“We are caught in an inescapable network of mutuality, tied in a single garment of destiny. Whatever affects one directly affects all indirectly.”

“The ultimate test of a man is not where he stands in moments of comfort and moments of convenience, but where he stands in moments of challenge and moments of controversy.”

“We are now faced with the fact that tomorrow is today. We are confronted with the fierce urgency of now…”

 – Martin Luther King, Jr. –

I Had A Dream

The Reverend Dr. Martin Luther King, Jr. (January 15, 1929 – April 4, 1968) was a Nobel Laureate Baptist minister and African American civil rights activist. He organized and led marches for the right to vote, desegregation, fair hiring, and other basic civil rights. Most of these rights were successfully enacted into United States law with the passage of the Civil Rights Act and the Voting Rights Act. He is perhaps most famous for his “I Have A Dream” speech, given in front of the Lincoln Memorial during the 1963 March on Washington for Jobs and Freedom. He is regarded as one of the greatest leaders and heroes in America’s history, and in the modern history of nonviolence.

Biography

Martin Luther King Jr. graduated from Morehouse College with a B.A degree in 1948 and from Crozer Theological Seminary with a B.D. in 1951. He received his Ph.D from Boston University in 1955.

In 1954, Martin Luther became the pastor of the Dexter Avenue Baptist Church in Montgomery, Alabama. He was a leader of the 1955 Montgomery bus boycott, which began when Rosa Parks refused to cede her seat to a white person. Dr. Martin Luther was arrested during this campaign, which ended with a United States Supreme Court decision outlawing segregation on intrastate buses.

Following the campaign, Martin Luther was instrumental in the founding of the Southern Christian Leadership Conference (SCLC) in 1957, a group created to organise Civil Rights activism. He continued to dominate the organisation to his death, a position criticised by the more radical and democratic Student Nonviolent Coordinating Committee (SNCC). The SCLC derived its membership principally from black communities associated with Baptist churches. Martin Luther was an adherent of the philosophies of nonviolent civil disobedience used successfully in India by Mohandas Gandhi, and he applied this philosophy to the protests organised by the SCLC. Martin Luther correctly identified that organised, non-violent protest against the racist system of Southern separation known as Jim Crow, when violently attacked by racist authorities and covered extensively by the media, would create a wave of pro-Civil Rights public opinion, and this was the key relationship which brought Civil Rights to the forefront of American politics in the early 1960s. Martin Luther and the SCLC applied the principles of nonviolent protest with astonishing success by choosing the method of protest, and the places in which protests were carried out, in order to provoke the harshest and most shocking Martin Luther retaliation from racist authorities. Martin Luther and the SCLC were instrumental in the unsuccessful protest movement in Albany in 1961-2, where splits within the black community and the canny, low-key response by local government defeated the movement, in the Birmingham protests in the summer of 1963, and in the protest in St. Augustine, Florida in 1964. Martin Luther and SCLC joined SNCC in the city of Selma, Alabama in December 1964; SNCC had already been there worMartin Luther on voter registration for a number of months.

Martin Luther and SCLC, in partial collaboration with SNCC, then attempted to organise a march which was intended to go from Selma to the state capital Montgomery starting on March 25, 1965. The first attempt to march, on March 7, was aborted due to mob and police violence against the demonstrators. The day has since become known as Bloody Sunday. Bloody Sunday was a major turning point in the effort to gain public support for the Civil Rights movement, the clearest demonstration so far of the dramatic potential of King’s techniques of nonviolence. King, however, was not present; after meeting with President Lyndon Johnson, he had attempted to delay the march until March 8, and the march was carried out against his wishes and without his presence by local civil rights workers. The footage of the police brutality against the protestors was broadcast extensively across the nation, and aroused a national sense of public outrage.

The second attempt at the march, on March 9, was ended when Martin Luther stopped the march at the Pettus bridge on the outskirts of Selma, an action which he seems to have negotiated with city leaders beforehand. This unexpected action aroused the surprise and anger of many within the local movement. The march finally went ahead fully on March 25, with the agreement and support of President Johnson, and it was during this march that Stokely Carmichael coined the phrase “Black Power”.

Martin Luther was instrumental in the organisation of the March on Washington in 1963. This role was another which courted controversy, as Martin Luther was one of the key figures who helped President John F. Kennedy change the intent of the march. Conceived as a further part of the Civil Rights protest, it became more of a celebration of the achievements of the movement – and the government – so far, a development which angered activists who were more radical than King.

Martin Luther wrote and spoke frequently, drawing on his long experience as a preacher. His “Letter from Birmingham Jail”, written in 1963, is a passionate statement of his crusade for justice.

On October 14, 1964, Martin Luther became the youngest recipient of the Nobel Peace Prize, which was awarded to him for leading non-violent resistance to end racial prejudice in the United States. Starting in 1965, Martin Luther began to express doubts about the United States’ role in the Vietnam War. In February and again in April of 1967, Martin Luther spoke out strongly against the US’s role in the war. In 1968, Martin Luther and the SCLC organized the “Poor People’s Campaign” to address issues of economic justice. The campaign culminated in a march on Washington, D.C. demanding economic aid to the poorest communities of the United States.

Along the way, Martin Luther also had an impact on popular entertainment. He met Nichelle Nichols who mentioned that she was going to leave the cast of the television series, Star Trek, since she felt was being mistreated by the studio. Martin Luther personally persuaded her to remain with the series for the sake of being an excellent role model for African Americans on television.

Martin Luther was hated by many white southern segregationists. Martin Luther was assassinated before the march on April 4, 1968, in a Memphis, Tennessee hotel room, while preparing to lead a local march in support of the heavily black Memphis sanitation workers’ union. James Earl Ray confessed to the shooting and was convicted, though he later recanted his confession. Coretta Scott King, King’s widow and also a civil rights leader, along with the rest of King’s family won a wrongful death civil trial against Loyd Jowers, who claimed to have received $100,000 to arrange King’s assassination.

In 1986, a U.S. national holiday was established in honor of Martin Luther Martin Luther Jr., which is called Martin Luther Martin Luther Day. It is observed on the third Monday of January each year, around the time of King’s birthday. On January 18, 1993, for the first time, Martin Luther Martin Luther Day was officially observed in all 50 United States states.

Source:  This Martin Luther King, Jr Biography Page is Copyright © 2004 – 2009 Chuck Ayoub

I am so glad that 2011 is coming to an end. It wasn’t a very pleasant year for my family. My son and I have been on our own for about three years while my husband has been in another country trying to create some financial stability for our family. A failed business, my son’s medical bills, our own health, and ailing parents have really set us back financially. In three years we have seen my husband for only two months. It is not easy dealing with life’s challenges without your husband or your father. This has been really hard for my son. He doesn’t understand that his father is sacrificing too. He doesn’t understand why his father had to go to another country.  He doesn’t that his father does not have access to the same opportunities here in America.

This year was a personal challenge for myself due to some health issues that creeped up on me. A year ago I was diagnosed with type 2 diabetes. And then for about a year I started to have some unusual symptoms including dizziness and loss of memory. The loss of memory was getting pretty serious. My success in my career was mainly due to my memory and the creativity of the mind. Finally after going through some tests it was determined that I had hypothyroidism. Since starting the medication things have improved but not totally back to normal.

Who knows, perhaps I am back to normal. Perhaps this is just my stage in life. I am over 50 years old, going through menopause, have diabetes, am over weight, suffer from both anxiety and depression, and have a thyroid that isn’t working. Perhaps this is the new normal.

One of the other big challenges we have been dealing with is my son’s type 1 diabetes. He was diagnosed a year and a half ago. A year ago he went on an insulin pump. Yet his blood glucose is still out of control. He is 13 years old and does not understand the seriousness of diabetes. I fight to get him to test his blood. I fight to get him to take his insulin. He is angry about the whole situation and I haven’t figured out a way to get this turned around. And now to top it all off I don’t know how I can keep paying for his diabetes supplies. We are struggling. We aren’t even able to live from paycheck to paycheck.

As some of you may know my son has several chronic health issues besides the diabetes. He also has epilepsy, non-epileptic seizures, Tourette Syndrome, an anxiety disorder, a little OCD, sensory processing issues, high functioning autism, and a little ADHD. That’s a lot to deal with. It all seems to be related. As you know many of these conditions overlap each other. The diagnosis is difficult, and the treatment is nearly impossible. Thus, this is where all of the medical bills come from.

Besides the diabetes, the other thing that was really beating us up was his Tourette Syndrome. He was having hours and hours of these violent physical tics and loud vocal tics. They were exhausting. Nothing seemed to help. We tried everything including medication, therapy, self-hypnosis and bio feedback. Nothing really worked. For most of this to work you have to really understand your tics and try methods to prevent them from happening. Unfortunately my son hasn’t quite figured that out.

Between all of the doctor appointments and nights with no sleep due to theses tics I was missing quite a bit of work and my son missed quite a bit of school. Lucky for me at work I had intermittent medical family leave time and was able to make up my time by working remotely. Usually my manager understood and then sometimes he didn’t. On the other hand my son’s school did not understand. They didn’t understand why he couldn’t attend school when he spent five hours or more in the night having full body jerks and vocal yells. They didn’t understand he needed to go to medical appointments. They didn’t understand that on top of his medical problems he is going to get normal illnesses such as the flu or a sore throat, or a cold, or a stomach ache. It got to the point they wanted a doctor’s note for every day he was having problems. Damm, I couldn’t afford to take him to the doctor every time he was sick or every time he had a bout of tics at night! They didn’t understand that there were no answers. The doctors had no cure. We have seen the best doctors in the country. On top of all this they didn’t understand that we needed to develop a plan that would educate my son with the restriction he has in life and teach him when he is able to learn.

So, this fall I took some time to evaluate the situation as it relates to my son’s education. As you may already know my son has some learning disabilities. He has been on an IEP since first grade. But in the last four years he has made no progress in math and very little progress in reading. He didn’t have the right accommodations in place, even though I would make suggestions, and I don’t think they were teaching him in his learning style. I don’t think they even knew what his learning style was. In fact I don’t think they cared if he was learning. I knew if I let things continue, my son would be graduating from high school and not be able to read.

I then realized I could do a much better job than the school. I was educated. I have a master’s degree. I know my son is quite smart and I just needed to take control and provide him with the education he deserves. So we made the decision to home school. And yes it isn’t easy. I work full-time. The key to it is to be very organized and planning ahead. I have my lesson plan for the whole year, with detailed daily plans that are a month ahead of us. My son follows a schedule while I am at work, and then in the evening we have class together. I am following a flipped classroom approach, where the detailed project work we do together. I take full advantage of information and applications that are available on the internet and educational television programs. I am taking a very practical approach to his education to ensure he learns what he needs to survive in life and to be a contributing citizen to his community. It is not easy, but we have already made tremendous progress since we started in October.

On top of all of this we have had a few more bumps in the road. Last summer we were rear-ended in our car. We both had whiplash and my son had a concussion. The car was totaled. Great, we have no money and I wondered how in the hell was I going to get a car. If I didn’t have a car there would be  no job. I commute about 35 miles away.  Between cashing in my 401K, which wasn’t much because I had already used most of it for all of the other emergencies, the insurance check, which wasn’t much because my car had 275,000 miles on it, and my gracious mother I was able to get a car. This was one less pressure off my mind.  THANK YOU MOM.

This year I have also been facing parents who are getting older and their health is becoming more and more challenging. My father was seriously sick for six months. He has been seeing many different specialist, all of them unsure of the diagnosis and each of them coming up with something different.  Most recently he saw a heart specialist and they have determined he has a blockage.  They will be dong surgery in the near future.  Most recently my mom is having a possible cancer scare. We will know more in the next month. She is a tough lady. She has survived breast cancer and uterine cancer.  The doctors are going to do a biopsy.  Hopefully it isn’t cancer.  We will see.

This year we also lost someone very dear to us. My husband’s brother died from cancer. He was in a country where he didn’t have access to medical treatment for cancer. He died within 9 months of being diagnosed. The end was bad. My husband was literally donating his blood daily to try to keep him alive. His wife went from hospital to hospital to try to buy blood. Medical care in third world countries is limited.  It was a terrible situation. But now he is at peace. We miss him dearly. He was kind and generous. More importantly he was greatly loved.

So we are almost to the end of 2011. The holidays are here, even though I don’t feel like being in the holiday spirit. I think to myself, let it be over. What could be worse than this year? I spoke too soon. My company informed me last week that my position was being discontinued and I was being laid off. What! Not now. My first thoughts were, I have to keep my son’s health insurance. I cried. Talk about sucker punching you when you are down.

I am telling you all of this because I have had a bad year and needed to get it off my chest. I am also telling you this because I am an example of one of those Americans that is struggling.  Looking back, my life has never been easy. BUT, I am also a survivor. I will get another job. I will take care of my son. Life will go on. I may not have my own home. My apartment may not be all decorated. I may not have a lot of clothes. I may not go on vacations. I may not be able to eat at restaurants. Sometimes I may not feel the best. I might even feel sorry for myself. But I am alive. I have a family that I love. And what else would I do. Give up? What would happen to my son if I did that? I have to be here for him. I have to make it. Sometimes you just have to do what you have to do, and that it is how it is with me. Doing what I have to do.

Here to 2012! It is going to be a great year.

Having a child that has a chronic medical condition is challenging.  Dealing with the actual medical aspects and doctor appointments is one thing, but trying to reconcile the emotions associated with the situation is a whole new challenge.  My son has had epilepsy since he was 3 1/2, Tourette Syndrome since 2008, non-epileptic seizures and an anxiety disorder since third grade, and was diagnosed with Type 1 diabetes last year.  On top of all of this he has some learning disabilities. 

I sometimes wonder whether anyone understands what we are growing through.  Dealing with these medical issues is overwhelming.  With my son, you never know when a seizure is going to happen and you have to be in standby mode until it happens.  Then diabetes has turned a spotlight on him. It is there in your face, when you exercise, when you eat, when you drink and when you sleep. Always there, always present. 

We were also hit by another blow when it was determined my son had learning disabilities.  After five years, this is still a shock for me.  Both myself and my husband graduated from college.  I have a great career.  Both of us excelled at school.  For me school was easy and I had dreams for my son.  The learning disabilities pretty much destroyed those dreams.  It is not so much about the education. I knew my son was smart, but needed to learn things in a different way. My fear really was around quality of life. Life is not easy and education gives a slight advantage ahead of the masses. I wanted my son to have those advantages and possibly not struggle with life. I had to come to turns that my son’s life was going to be different from what I expected.  It was really hard getting my head around this.  I kept thinking he could get well and he could “catch up.” 

I often wonder what it would be like to not have to explain to my boss that I have to take my son to a doctor every other week, or that the school has called and I need to go pick your son up because he is having some medical issues, or that my son has had a really rough night and I need to stay home with him.  My boss hates this.  I even got on intermittent family medical leave, but he still hates it.  Every day I worry about whether he is going to get rid of me. 

As we have been going along this challenging journey, I thought about how you change depending upon where you are in the cycle of dealing with chronic medical illnesses.  It is almost like the stages of grief.  At first you go through denial.  When my son was first diagnosed with epilepsy, I was constantly doing research to identify how and why this happened.  It wasn’t until almost two years later when I realized it didn’t matter.  He had epilepsy and learning how this came about was not going to lead to a cure.  I also spent years going from one specialist to another, hoping one would have the magic answer that would put all of this in the past.  Yes, I was in total denial.  Rather than focussing on living life with epilepsy, I was stuck on researching the why’s and how’s, which was a useless endeavor. Even if I found out why and how, how was that information going to help the situation? We are still stuck treating the symptoms and mitigating their effect.  Each specialist we saw was just another flavor of the same thing.  We saw medical doctors at Children’s Hospital in Ohio, the Cleveland Clinic, Mayo Clinic, a New Jersey specialist in movement disorders, and lastly an Epilepsy Clinic in Minnesota.

I also went through a period of anger.  I didn’t understand why doctors couldn’t first of all make a diagnosis and secondly determine a treatment.  We were stuck in this trial and error mode while we were trying to find the right anti-epileptic drugs that would have a positive affect, and reduce or end my son’s seizures.  It was frustrating.  They were the experts.  Later, it was even more frustrating when I couldn’t get a neurologist to look at the whole picture of my son’s medical condition.  There were so many things happening and they would just react to one symptom or another.

We have also sought spiritual guidance with this situation.  We have worked with pastors from several churches from around the world.  Everyone was praying, praying for a cure.  Looking back, I think we should have been praying for a life, a life with medical issues, but a life of living, rather than grieving.

Parents and children also can get caught in a state of depression.  At times nothing seems to be good happening.  Your thoughts go to “why me.”  My son will beg me to make it all go away.  I don’t think we are quite through this stage of grief.  These medical conditions have engulfed our life.  I am always telling my son to look toward those things that are good in his life.  Think about those moments that bring happiness.  Sometimes, one gets so focussed on the bad, that it is hard to see the good.  I haven’t quite figured how to get unstuck from this stage.  Talking to other people doesn’t seem to help; it is just another reminder of the problem.  When there is a medical condition that reminds you of its existence every moment of your life, it is hard to get away from it.  For my son it includes taking his medications for epilepsy, testing his blood seven or eight times a day to check his glucose levels, avoiding those situations which trigger his tics, and then if they do happen constantly trying to suppress them.  It is stressful.  It is tiring.

I look forward to the time when both myself and my son reach acceptance.  We recently decided to take control of his education and made the decision to home school.  Perhaps this step toward homeschooling is the first step of acceptance.  We know it will take hard work.  We also know that we will do it together which will strengthen our bond.  We now have control.  We can do what his school could not do.  We can pursue education when he is fit to be educated.  I could also mold his education around his needs.  We could also focus on his talents and I think we will find his abilities are far beyond what the schools had pigeon-holed him as.  I also think we will have many opportunities to experience joy while we are on this journey. 

So, dealing with chronic illness can affect every member of the family.  The effects can follow the stages of grief. Denial.  Anger. Depression.  Acceptance.  Both the child with the chronic illness and the child’s caretakers go through each of these stages.  I also suspect that these stages recur as you fight the challenges of the chronic illnesses.  It is true one may reach the state of acceptance, but I am quite sure something will happen and one will be thrown back into that mode of denial, and so forth.

I think understanding that this is happening is probably the best way of getting through this.  By having an understanding, one will know that how one feels is perfectly normal.  It is expected that you would feel the way you do.  It is what makes us human.