Why Parents of Children With Autism and School Systems Need to Work Together

School systems across the country are facing an uphill battle. With autism on the rise, school systems are taking in more and more students who are on the spectrum. Although many systems have trained staff in place, most districts are at a loss of what to do and how to handle the situation. Parents are becoming increasingly frustrated and in some cases, schools are being sued in order for a child to receive proper therapy. 

This does not need to be the case if both parents and school staff work together to provide the proper environment. First and foremost, a school is not a place for a parent to drop off their child to be babysat, especially if that child has special needs. A school is a place for learning, social skills building as well as a place to learn life skills. Many parents of children with special needs put an enormous burden on a school to provide everything their child needs without providing any support. The reality is, if this happens, the child will fail and nobody wins. 

The key to having success in school for a child with autism is to form a team mentality with the school and its staff. Take time to work together to create the environment to best suit the child, not the parents or the schools best interests. In order to do this, both sides need to be on the same page, speak the same language and understand where each other is coming from. 

Raising a child with autism can be a daunting task. Parents of children with autism are frequently exhausted. A large number of children with autism stay up all night and finally fall asleep at 4 or 5 in the morning. Parents are working long hours and then have to come home to take care of a child who may have numerous challenges. Parents have spent every penny they have on therapy, and are reaching out for help in the best way they know how. Many times that way is to drop them off at school in hopes that by the end of that day their child as progressed in some way. At the same time teachers are attempting to work with every child in their class both typical and special needs to help them learn. Each child has their own challenge, but the addition of a child with autism can make a teachers day much more difficult, especially if that teacher does not know how to work with a child with autism. Furthermore, school systems have not been prepared to deal with this inflow of children with autism. They do not have the resources available to provide help, and when they do the cost can be extremely high. When all of these factors come crashing together, the powder keg is ignited and explodes into difficult, painful and sometimes litigious situation. 

This situation can be avoided if both school system and parent are willing to work together to attempt to solve challenges and celebrate successes. This means understanding each others language and communicating to each other about the child. 

Parents know their child best and also spend the most time with them. The know if their child has had a bad day or if they did not eat a good breakfast. They also know what works will with their children and what reinforces them. All of this is knowledge that a teacher needs to know on a daily, weekly or quarterly basis. When a parent contacts a teacher and tells them about a negative or positive situation that happened at home, a teacher can either be prepared to counter act a behavior or praise and celebrate an accomplishment. 

It is also extremely important for a school to be as open as possible. A school needs to develop a plan to over communicate with a parent and let them know all that is going on, so that both sides can work together to solve problems or reinforce positive actions. 

Finally, the school and the parent need to be trained on how to work with children with autism. School systems need to have training in place not only for their Special Education Department, but also for their para professionals, and general education staff. Each person in this child’s life needs to know how to work on bad behaviors and reinforce positive behaviors. They need to be proactive, not reactive in their teaching to develop their student to the fullest potential. Parents need to be trained so that they can take what was learned at school and help develop skills and work on behaviors. 

When both sides have open communication, are realistic about a child’s goals and work together the child with autism has a much better chance of success.

How To Have A Positive Outcome In Your Child’s IEP

Families who have children with disabilities often face an uphill battle when dealing with school systems. All children with disabilities have IEP’s or Individual Education Plans. These plans are put together so the school system and parents can agree what goals to work on during a period of time in the school year. Schools often take the brunt of a parents frustration because parents feel that they are not getting what they want. In some cases the school system is to blame, but in many cases if the parents took a different approach, then things may work out differently.

Families who have children with special needs have to take a proactive approach to working with their school district and obtaining the necessary services. To start this process, parents need to be visable in the school. What this means is that parents need to get to know as many people in the school as possible. Forming relationships with the Principle, Vice Principle, Special Education Director, PTA Board and teachers is essential. Having relationships with the administration most likely take down the walls that most school systems have up. This means attending pre school year functions, after school activities and if one parent does not work, volunteering at school. This will show the school that you are willing to work with them to make your child’s school exprieence the best it can be.

Know your rights. Schools are mandated to provide a parent with their rights before the IEP begins. Make sure that if you are concerned to call ahead and obtain a copy so you can read it over and understand every aspect of it. If things happen to get heated, your knowledge of your rights can make a big difference. 

Be reasonable. Many parents who are frustrated with school systems do not realize that they are asking unreasonable requests from the school system. If you have a child with autism and they are non verbal, do not demand that they attend fourth grade math class for the social aspect, or demand that he or she is fully included. Doing this will only make it more difficult for your child, but also for the other students and the teachers as well. Before you go into the meeting try and get an understanding of what the set up is going to be. If you want your child to learn social skills, request that they be a part of specials such as Art , PE or Music. Learn about the schools resource room, inclusion policy and if there are special teachers for a disability.

Understand you child. Parents who know the capabilities of their children typically have a better time in IEP’s. You need to take a step back and be objective. We all want our children to be the best that they can be, but forcing a child into a typical reading class or history class when they are aggressive or can’t read will only show an administration that you do not know your child. Before you make requests take an inventory of your child’s abilities and challenges. 

Be informed. Knowledge is power. Too many parents who utilize out side therapy, never do any follow up or try and understand what is going on in each session. For example, parents of children with autism often ask or demand that a school provide 40 hours of ABA for their child. The fact that few districts can pull that off is one thing, but if you as a parent know nothing about ABA and do not demonstrate that you are going to follow up with your child at home to help the school, there is a good chance that your request will be met with some push back. It is extremely important to know what therapy your child is doing outside of school and be able to talk about what your child has accomplished and what they are working on. If you can show a school that you are working as hard as they are, then you will probably have a better out come in your IEP.

Be ready to compromise. IEP’s are sometimes all about compromises. Go into the meeting with a hierarchy of what is most important to you and some things that are less important. Be willing to not force the school to deliver on some of the lesser requests, and push more for those higher on your list. By showing the school you are willing to compromise, will help you form a trusting relationship with them. 

Deliver on what you say you are going to do. You will probably have at least two IEP’s a year and depending on the severity of your child’s disability will have them for his or her entire school career. If you say you are going to do something, make sure you follow up and do it. Consistently not performing will show a school that you are not willing to do the work.

Finally, be positive. Many of our educators are doing the best they can with the resources they have. Their goal is not to fail or make your child’s life difficult but to educate them. Having a positive parent only boosts morale. Make sure to point out in the IEP the good things that happened during the year. Do not always harp on the negative.

Having a child with special needs is extremely difficult. Facing a showdown with a school system can make life miserable. As I stated above there are a few bad apples out there and no mater what you do, they will not work with you and unfortunately lead a family to arbitration and sometimes lawsuits. For the majority of us, the school staff is here to help. If we do our part then our children will have the opportunity to have a great school experience.

 

Christy is the mother of a 6 year old with autism and the founder of Maximum Potential Group. www.maximumpotentialkids.com

Riding the Bus

Collin rode the bus home for the first time today. The ride went great and you would have thought Obama was on the bus due to the awareness  and preparation of this ride. His teacher and school did a few things to help prepare him for this transportation change as I have picked him up in carpool line since pre-school. We thought he would really enjoy this change and it would give him more time around peers. Before the Holiday break, Collin’s “shadow” started to take him out to the buses each day after school to allow him to get aquatinted with the buses, the noise, and to watch the other children get on the bus. He became excited about riding the bus even just from that experience. His teacher also made a social story about bus safety and sent a copy home to us to read with Collin. She then found three older peer helpers who would look out for Collin’s safety on the bus. Collin met the bus driver weeks before this transition was to occur and Collin quickly learned his name.

Although Collin can not or does not express verbally how happy he is, I could tell he really enjoyed this experience due to the big grin on his face. It is a great experience for him and for his older peer helpers. I am not surprised at how these three other children want to help Collin and enjoy having this responsibility. Children are always eager to learn more about Collin and assist him when they can. These helpers will set a great example and teach other peers that all children are not all the same.

My National Spelling Bee Champ!

There are so many quirky but awesome things our kids with autism poses. Some of them are annoying (many of them) and some are quite amazing. Our son Collin has become an incredible speller. He can spell the most ridiculous words! Prestidigitation, synecdoche, and embrocation just to name a few(and he is only 6). In fact, he just spelled these for me as I type because I asked him to spell some of his favorite words. So many times when I talk to someone about Collin they ask me “what is his thing”? It is an interesting concept, “his gift, or talent, or thing”. I think so many people are catching onto these wonderful gifts our children have. It is so nice to recognize these positive actions they poses.I have heard of children who are experts in the construction and operation of elevators; kids who are amazing with numbers, reading, music, art ect…. I think it is wonderful to specialize in something. So many of us are pulled in so many directions that I think many people feel as if they can never give 100% to anything. As a founder of Maximum Potential Kids, a mom, a wife, homeowner, daughter, sister, aunt, friend, CrossFit trainer ect…. I feel as if no one , or job, or thing gets 100%. Collin has the ability, (as ironic as this sounds for someone with autism) to focus on the one thing he wants to do or “his thing”. If Collin wants to spell, he can shut out anything else at that time and spell like crazy. Of course this is not always appropriate, but what a gift! These kids with these amazing talents can be a great asset to others in the work place one day. I m sure many businesses would love to have someone who could shut out everything to just do their job 100% when needed. This is another life lesson Collin is teaching me. I am seeing  reduction in the value of multi-tasking and an appropriate need for focus on one thing, or the thing I need to do at that time. Giving 100% towards one task, or person, or job, or chore is providing a much better outcome with little time spent re-doing something and in the end is far better than multi-tasking all the time. I am now learning that one of those things need to be ME! I encourage anyone to decide what they want to be a “champ” at and go for some time with 100% attention towards your goal and see the results.

Behavior Management at School

When I hear from a teacher or assistant at Collin’s school that Collin is having some “behavior” I have learned to find out exactly what that means. Collin is a well behaved child and we get a lot of cooperation from  his school. He is in First Grade and spends most of the day in Resource with about 8 other children…none of them autistic. Collin’s school has a self contained autism class which he is not part of. I am grateful for the Resource class and the extra support and therapy he receives as I know many parents do not get this. BUT, when there is ever mention of “behavior” from one of Collin’s teachers, I have immediately learned to find out what exactly the behavior is. When a child starts to exhibit “behavior”, many times teachers and staff start to think, “well maybe he should not go to PE with typical class” or “well, maybe can not handle going to computer lab every Tuesday”. SO, I find out what the behavior is, how many times it occurs, what preceded the incident, what followed, and to what degree of intensity it took place. I use a behavior checklist that I copy and send in his backpack. The teachers and staff are to fill it out and then we have real data to look at and help make a decision about what t do. Like I mentioned, Collin is well behaved so when “behavior” occurs it may seem more severe to teachers and staff than if it happened all the time. This behavior check list helps the teachers to see too, that it may not be as bad as they thought. This happened last year after Christmas Break. Collin had a rough start back into school after being at home for the two week break. I was getting notes that “Collin was having a rough day” or that “Collin was having behaviors and outbursts”. Everyone was getting into a little bit of an uproar. I provided his teachers with a behavior checklist and had them log the number of occurrences, intensity, antecedent, and the teacher response. On paper, it really did not look that bad and the teachers recognized this. I had them log this information for two weeks and then we were going to come up with a behavior plan. There was not much behavior to correct after all and the sheet started to come home empty as the behavior went away. In general behavior does not change or go away unless you change something but I think Collin just needed time to get back into the swing of things. By not changing anything he soon realized, “OK, I am back in school and there is nothing I can do about it”. He was fine by February and he really enjoyed his school year. I have added a copy of the behavior checklist I use which you can get at www.maximumpotentialkids.com in the data collection package or you could make your own.

 

 

 

First day of First Grade

Collin started school today. He will spend part of his day in a typical first grade class and part of the day in a resource room. He has an adult facilitator who will shadow him throughout the day except for lunch. When I woke him up today and told him it was a school day…he smiled! This was a very different reaction than last year. (a much better one) We are working on an earlier bed time so he will not struggle to wake up at 6;30am. We drive him to school each day as I do not see him able to ride the bus at this point. 

Last year we had a problem with him not drinking at school. He would only drink out of sippy cups which are not allowed or a regular cup which he could not pour liquid in to. hH does not like juice boxes, bags, or any pre-packaged drinks.I do not know why???? BUT, this year we selected an awesome thermos from Target that is metal and has Spiderman on it. The best part is the functionality of it. You press a button and the top pops back and a nice heavy duty built in straw pops up. It does not leak or spill and it hold his drinks nicely. We have been practicing at home with it and he is operating it and drinking from it. Whew!(It’s the little thinks you know.)

We will take each day of First Grade one little step at a time just like we do each day and I will keep you posted on how it goes. Right now, we are getting ready to make an “All About Me” poster.

Progress Report

Collin received a progress report with a note stating that the teachers see some improvement in pencil grip. His special education teacher suggested outlining a box around the space where the word he was to write would be written. It looks like this helps. Many times the teachers write the word first in yellow highlighter and then Collin traces over it. he has no problem with letter formation, letter recognition, spelling and in fact is above his grade level in those areas. It is the pencil grip and the fine motor skill of actually pressing the pencil to the paper that is a challenge. We have various grips which do help. We have spent many hours watching and participating in Alphabeats (www.tvteacher.com)which he loves and we have OT one to two time weekly. This handwriting is slow to progress.

Collin needs handwriting to get through school, I know. BUT, I am not going to stress to much about handwriting. He is learning to really use the computer and that is what most of us use at this point anyway. My brother has horrible handwriting(really unreadable) but that has not stopped him from achieving in life. He scored perfect on the SAT in high-school. He has more than one maters degree including one in finance from GW and is a Lieutenant Commander int he Navy and drive nuclear submarines. So, I know my child really struggles with handwriting, but I am going to focus on what he can do and help him be successful with out perfect manuscript!

Explaining autism to Kindergartners

This past week Collin’s school celebrated Exceptional Children’s Week. This included a music presentation and awards and a day in which parents came into the classroom to help children try to feel what it is like to have a disability.In Collin’s typical classroom where he spends part of his day, the kids learned about loss of hearing, loss of sight,and autism. The room was set up into stations and the kids rotated to spend 15 minutes with a parent at each station to learn about these disabilities. My husband and I worked the autism station. The teacher had provided an activity which included sand paper and the kids felt how rough the sand paper was and it was explained that this is what something as simple as a tag on a shirt could feel like to a child with autism. My husband and I brought our own ideas and demonstrated with a couple activities as well. We told the children to think of something that smells really great to them (like chocolate chip cookies) and helped them to understand that to a child with autism, this could smell really awful. We rearranged sentences to make nonsense out of them and explained that sometime when you talk to a child with autism, the sentence may sound like nonsense. We talked about how loud noises can really bother children with autism and a couple of other activities.

Kindergartners are hilarious. One kid diagnosed his dog with autism because the dog hates loud noises like fire alarms and trucks. Makes sense to me! Many of the times when we would describe something, the kids would say”just like Collin does”.

I could feel tears well up in my eyes a couple times but I was not sure if it was because of that overwhelming feeling I get every once in a while of..”why my child?” or was it that these kids were so great. They never make fun of Collin. They think he is cool. They like that he is different and think it is great to help him with his lunch or point him in the right direction is PE. They tell their mom’s that they can’t have chocolate cake at their birthday parties because Collin can’t eat it. They really find him interesting. I have been in the classroom many times and the kids don’t make fun of him and enjoy helping him out. We couldn’t ask for a better situation at his school this year. Collin has a typical kindergarten, a special ed kindergarten, an adult facilitator, kids assigned to help him at places like lunch and he receives OT and Speech each week.We call Collin the Mayor of New Prospect because it seems like every body in the school of 600 knows him.The front office staff knows him by name. (we are late frequently and they always walk him to his classroom). The school psychologist has been testing him and just loves him and is impressed by his development of skills. The OT loves   Collin and has a song he sang to her on her cell phone. Many different kids, parents and staff throughout the school know Collin and they know he is autistic or has some sort of disorder, but they welcome him and treat him like they should. I am very happy with his situationand hope it continues in the future.

Exceptional Children’s week was to celebrate children with disabilities but I found that the kids without the disabilities really have been exceptional too.

Horton Hears A Who

Horton hears a who! I am excited because Collin is excited that this new movie..Horton Hears A Who, is out. It is so fun to see him smile and get excited about something that he does not have right in front of him. He is understanding the concept of going to a movie in the future.When we rode by the movie theater this week-end, he pointed to it and said “there is the movie” and gave a big grin! I know he is looking forward to this. Sometimes Collin and I will go to the theater on our own(with out Dad or little brother) and he really enjoys it. I let him get popcorn with no butter and he drinks water or I bring a juice box. I really enjoy seeing his grin.

FIRST AUTISM-VACCINE LINK: HOW HANNAH MADE HISTORY

By Alison Young
The Atlanta Journal-Constitution
Published on: 03/06/08 In a move autism family advocates call unprecedented, federal health officials have concluded that childhood vaccines contributed to symptoms of the disorder in a 9-year-old Georgia girl.While government officials continue to maintain that vaccines don’t cause autism, advocates say the recent settlement of the girl’s injury case in a secretive federal vaccine court shows otherwise.

The U.S. Department of Health and Human Services has concluded the family of Hannah Poling of Athens is entitled to compensation from a federal vaccine injury fund, according to the text of a court document in the case. The amount of the family’s award is still being determined.

The language in the document does not establish a clear-cut vaccine-autism link. But it does say the government concluded that vaccines aggravated a rare underlying metabolic condition that resulted in a brain disorder “with features of autism spectrum disorder.”

In an interview Wednesday with The Atlanta Journal-Constitution, Hannah’s parents, Jon and Terry Poling, said the government’s concession in the case will help pay for the numerous therapists and other medical experts their autistic child needs —- now and for the rest of her life.

“At least we have some commitment from the government to take care of Hannah when we’re gone,” said Dr. Jon Poling, a neurologist.

But the case also thrusts the family into a national spotlight in the controversial public debate over whether vaccines have played some role in the growing number of U.S. children diagnosed with autism. Of particular concern to some families is the mercury-based preservative thimerosal, not used in child vaccines (except for some flu shots) since 2001.

Hannah’s case was one of three vaccine-court test cases alleging that thimerosal caused the children’s autism. The other cases go to trial in May.

Suspicion of vaccines is fueled in part by vocal advocates —- including radio shock jock Don Imus and actress Jenny McCarthy —- speaking out on radio and TV shows such as “Oprah” and “Larry King Live.”

Even Republican presidential candidate Sen. John McCain said on the campaign trail that “there’s strong evidence” that a preservative in vaccines is fueling the dramatic rise in autism cases across the country.

As many as 1 in 150 children in some communities have autism disorders, says the Centers for Disease Control and Prevention.

“We need to recognize this is a national crisis,” Jon Poling said.

Autism is a lifelong neurological disorder that causes problems with communication and the ability to have normal social interactions. Autism and related autism spectrum disorders cover a range of symptoms that can vary from mild to severe. The cause is unknown, but scientists believe genes may play a role.

Pediatricians and public health officials worry that this case may cause fear among some parents and prompt them to refuse to vaccinate their children, and put them in real danger from measles, whooping cough and other diseases.

“The risks of diseases are real risks,” said Dr. Melinda Wharton, deputy director of CDC’s National Center for Immunization and Respiratory Diseases. Numerous large studies don’t support a relationship between vaccines and autism, according to the CDC and the Institutes of Medicine.

The Georgia girl’s case —- and its implications in the vaccine-autism debate —- raise more questions than it answers, experts say.

Some medical experts say it’s difficult to fully assess the case because the federal vaccine-court documents are sealed from public view.

“It raised a lot of questions for us,” said Dr. David Tayloe Jr., president-elect of the American Academy of Pediatrics. The national medical group’s leadership has been seeking more information about Hannah’s vaccine-court case since last week when a sealed vaccine-court document detailing the government’s settlement was posted on the Internet by an autism book author, then circulated widely among autism groups.

The pediatrics association has been trying to get access to official documents in the case so medical experts can delve into the science, assess whether there are implications for other children and answer questions from doctors and families.

“Our responsibility is to make sure the public is given good information and make sure the hype doesn’t distract from public health,” Tayloe said. “I still would not think that we’re going to have evidence showing a role of vaccines actually causing autism.”

According to the leaked document posted online, the government’s Division of Vaccine Injury Compensation concluded that five shots Hannah received in July 2000, when she was 19 months old, “significantly aggravated an underlying mitochondrial disorder” and resulted in a brain disorder “with features of autism spectrum disorder.”

Sallie Bernard, executive director of the national autism advocacy group SafeMinds, called the case “unprecedented” in that a link between vaccines and autism is being made public. Federal health officials “have insisted there is no link at all between vaccines and vaccine components and autism. And apparently that is not true,” she said.

The case also is significant because other autistic children have mitochondrial disorders, Bernard said. “The question is: What is the proportion?”

Robert Krakow, a New York attorney representing other autistic children in vaccine court, said the significance of the case is “potentially explosive.” He said he has several clients with similar histories.

Hannah requires one-on-one care at all times, said her mother, Terry Poling, a nurse and lawyer. The Polings described how Hannah was a normal, verbal toddler until she received several vaccines during a well-baby visit. Within 48 hours of the shots, she developed a high fever and inconsolable crying and refused to walk. She stopped sleeping through the night. At 3 months of age, she began showing signs of autism, including spinning and staring at lights and fans. For a while, she lost her ability to speak.

When Hannah was 6 months old, as the family came to grips with the likelihood that she was autistic, they turned to leading experts in neurology. “I had to know. My daughter didn’t just suddenly develop autism for no reason,” Terry Poling said.

Hannah’s father co-authored an article about her case, which was published in the Journal of Child Neurology in 2006.

Hannah, who has two older brothers, continues to have mild to moderate symptoms of autism. The family says early and ongoing intensive therapy has been critical for her.

“The biggest question right now for the public is: How unique is Hannah’s case?” said Jon Poling. Poling said he suspects there are other children like Hannah.

Cliff Shoemaker, the Polings’ attorney, said the family has filed a petition with the vaccine court to unseal all of Hannah’s records and allow both the family and the government to fully discuss the case.

Despite this, a spokesman for the U.S. Department of Justice, which reprersents the government in court cases, would not grant interviews or explain to the AJC why it isn’t releasing the records. HHS officials, who administer the vaccine compensation fund, also declined to be interviewed, citing the court’s confidentiality requirements.

Shoemaker said the government’s November concession in the case is public, but the government’s reasons aren’t. “I’m not aware of any other conceded autism cases,” he said.

Congress created the National Vaccine Injury Compensation Program in 1988 after widespread lawsuits against manufacturers and health-care providers stemming from reports of side-effects of a version of the diphtheria-tetanus-pertussis vaccine used in the 1980s.

With companies getting out of the vaccine business for liability reasons, Congress established the program and a trust fund to serve as a no-fault alternative for resolving certain vaccine injury claims.

The average injury compensation to an individual in vaccine court has been about $1 million. In fiscal year 2007, more than $91 million was awarded to people harmed by vaccines.

Q&A

What does the case mean for the safety of vaccines? Medical experts said parents should continue vaccinating their children because it protects them from diseases known to be deadly. If they’re concerned, they should talk with their pediatrician.

Q: What is autism?

A: Autism spectrum disorders are a range of developmental disabilities —- from mild to severe —- characterized by communication problems, an inability to have normal social interactions and unusual behaviors.

Q: What causes autism?

A: Scientists don’t know but are exploring what role genetics may play, as well as possible environmental factors.

Q: Why is this Georgia child’s case drawing so much attention?

A: A leaked federal vaccine court document, posted on the Internet and widely circulated among advocates, shows the government has agreed to compensate her. Federal health officials have conceded that the five shots she received in July 2000 “significantly aggravated an underlying mitochondrial disorder,” which manifested as a brain disease with features of autism. Autism family advocates say this shows the government is conceding —- after years of blanket denials —- that vaccines play a role in at least some autism cases.

Q: What do federal health officials say about the case?

A: The U.S. Department of Health and Human Services branch that administers the vaccine injury program says the government “continues to maintain the position that vaccines do not cause autism and has never concluded in any case that autism was caused by vaccination.”

Q: What are mitochondrial disorders?

A: Mitochondria are tiny rod-like structures that serve as the energy-making machines inside cells. When mitochondria don’t work properly, they produce less energy and can cause various body systems to fail.

Q: What causes the disorders?

A: For the most part, genes. Sometimes a person’s mitochondria —- if their genes make them susceptible —- can be affected by environmental factors such as medications. The Georgia girl’s family suspects her mitochondria were damaged by a mercury-based preservative in the vaccines she received. Tests didn’t find a genetical link in her case, the family said.

Q: What’s the relationship between mitochondrial disorders and autism?

A: While some children with mitochondrial disorders have autistic symptoms, the vast majority do not, said Dr. Bruce Cohen, a pediatric neurologist at the Cleveland Clinic and past-president of the Mitochondrial Medicine Society. Most autistic children do not have mitochondrial disease, he said.

Q: How can a mitochondrial disorder be aggravated by vaccinations?

A: Vaccination —- like illnesses, starvation, extreme heat or any other stress on the body —- may unmask a mitochondrial disorder, experts said. When a vaccine is injected, it causes the body to mount an immune response. This requires increased energy the body may not have if there is an underlying mitochondrial disorder. Still, Cohen said he recommends vaccination, even for most patients with diagnosed mitochondrial disorders. That’s because of the greater danger posed by vaccine-preventable diseases.

Q: How common is this?

A: According to the United Mitochondrial Disease Foundation, at least one in every 4,000 children born in the U.S. each year will develop a mitochondrial disease by age 10. Many children are misdiagnosed with such things as atypical cerebral palsy, seizure disorders and other diseases. Adults also can be diagnosed with adult-onset mitochondrial disease.

 ELIZABETH LANDT / Staff MITOCHONDRIAL DISORDERS Energy for our bodies is created within our cells. This massive job is handled by the mitochondria. When these tiny guys can't do their job, our whole body suffers. Normal mitochondrion 1. Mitochondria are tiny power plants inside human cells that convert food into energy. 2. If the mitochondria are not working properly, the cell does not get the energy it needs to do its work within the body. Diagram includes a cell containing normal and dysfunctional mitochondrion; the inside of a normal mitochondrian; its Energy-producing particles; DNA. Organ systems: 3. The brain, heart and lungs require the most energy to function properly. If they don't have adequate energy, these organs begin to fail. Symptoms vary depending on the part of the body involved. —- Possible symptoms Mitochondrial disorders are rare. Not everyone who has these symptoms has dysfunctional mitochondria. Brain: Developmental delays, seizures, autistic features, migraines, atypical cerebral palsy Eyes and ears: Visual or hearing loss, degeneration of retina cells Heart: Heart blocks, Cardiomyopathy Muscles: Weakness, cramping, gastrointestinal problems, muscle pain Liver: Low blood sugar, liver failure Kidneys: Failure to excrete acid or wasting Pancreas and other glands: Diabetes and inability to make digestive enzymes, low calcium Nerves: Weakness (may be intermittent), fainting, Chronic nerve pain Systemic: Failure to gain weight, fatigue, unexplained vomiting, short stature, respiratory problems Mitochondrian disorders generally involve three or more organ systems and in some cases produces symptoms similar to autism. Sources: United Mitochondrial Disease Foundation