This journey is not ours alone. It is shared.
A couple years ago, we met a beautiful young lady. She was at the State Fair in a booth showing/advertising her well trained dog. She was part of a program that trained dogs for therapy, her standard poodle was her therapy dog. This young girl had E. B.,Epidermolysis Bullosa. Her arms and legs were wrapped for protection. Her dog was there for her support. But she didn't just take, she gave back. How courageous she was to be seen at the fair looking "different" than everyone else, standing out in the crowd. She had spunk and energy that did not waiver. She suffered a great deal of pain that no one could take from her. Despite this, she showed courage, strength and a giving nature. This is where beauty comes from, it comes from how we handle our situations in life. We can be courageous or we can be cowards. Which ever path we choose, it will shine through on the outside.
I am so glad that even though I did not get a chance to know her well, I was able to share the journey with such a beautiful young lady. Her life was cut short. May God bless her and her family.
Has your life beaten you down? Are you a beauty that has faded? Or, do you choose to beat your circumstances down? Do you refuse to fade, but to stand out in spite of all else?
Monday, July 8, 2013
Friday, June 28, 2013
Walking the Walk - Again!
We are starting our journey of visiting doctors once again, walking the walk. When every we take this path along our journey, it feels like we are walking on a tight rope over a raging gorge.
TLC is now able to visit a clinic just over a hundred miles away that is specific to Dysautonomia. As we do this, we are cutting ties with the neurologist at Children's. We hope that there are not any changes to her existing meds as they are all working just fine. However, we do want to have a doctor to consult with locally that knows and understands what is going on with her nervous system issues. We have heard from some that they will only be able to work with the Dysautonomia and will not be able to help with the Cold / Heat Urticaria and the Ehlers Danlos. However, this will be a big improvement over a doctor that does not know anything about any of them and can only try to treat the symptoms.
We have also made an appointment with the Geneticist to get more help with the Ehlers Danlos. TLC is now having problems with nearly every joint subluxating with every movement. Currently her neck, shoulders, wrists, fingers, vertebrae, hips, knees and ankles are all affected. She is still finding new tricks that she can do. She needs braces that will help prevent the movement of her joints from sliding around.
TLC now has a new symptom and we will be going to see an eye specialist today to rule out all the "bad" causes. It appears to be Retinal Migraines. A lot of people I have talked to have had trouble with them in both their eyes. TLC only has them in one eye right now. Because it is in only one eye, it is commonly triggered by some bad sources. We are praying that it is not and like so many others will eventually improve and go away.
Doctors are almost always difficult to work with; some get it, but most don't. Some already have the answers with total disregard for what is actually going on. Some are just plain crazy. Rare is the doctor that listens, that researches, that truly wants to research and make things better, even when the answers in their books don't work.
This is our journey and we are walking the walk, once again!
TLC is now able to visit a clinic just over a hundred miles away that is specific to Dysautonomia. As we do this, we are cutting ties with the neurologist at Children's. We hope that there are not any changes to her existing meds as they are all working just fine. However, we do want to have a doctor to consult with locally that knows and understands what is going on with her nervous system issues. We have heard from some that they will only be able to work with the Dysautonomia and will not be able to help with the Cold / Heat Urticaria and the Ehlers Danlos. However, this will be a big improvement over a doctor that does not know anything about any of them and can only try to treat the symptoms.
We have also made an appointment with the Geneticist to get more help with the Ehlers Danlos. TLC is now having problems with nearly every joint subluxating with every movement. Currently her neck, shoulders, wrists, fingers, vertebrae, hips, knees and ankles are all affected. She is still finding new tricks that she can do. She needs braces that will help prevent the movement of her joints from sliding around.
TLC now has a new symptom and we will be going to see an eye specialist today to rule out all the "bad" causes. It appears to be Retinal Migraines. A lot of people I have talked to have had trouble with them in both their eyes. TLC only has them in one eye right now. Because it is in only one eye, it is commonly triggered by some bad sources. We are praying that it is not and like so many others will eventually improve and go away.
Doctors are almost always difficult to work with; some get it, but most don't. Some already have the answers with total disregard for what is actually going on. Some are just plain crazy. Rare is the doctor that listens, that researches, that truly wants to research and make things better, even when the answers in their books don't work.
This is our journey and we are walking the walk, once again!
Enjoying the Simple Things Amidst the Chaos
We have had so much going on in the last few days. We just wanted to share with you another step along our journey of dealing with Dysautonomia, Cold Urticaria and Ehlers Danlos.
People with Chronic Illnesses such as these or all don't get to go out much and participate in what all life has to offer. Despite this, we have found that life can be just as enjoyable at home, with family and enjoying what we can one thing/event at a time.
Don't get me wrong, we do make attempts to go out. When we do, we are always prepared to leave if the activity/event becomes overwhelming.
Recently, we were invited to a suite view of our local baseball team. We were able to sit inside and block out the noise when it was too loud outside from the concert prior to the game. And praise God, the weather was absolutely perfect. As the suite became too cold, and the concert transitioned into a game of America's favorite past-time, we were able to sit on the balcony and take it all in. Then when it came time for fireworks, we were able to go inside and avoid hearing all the loud booms which would surely have sent my daughter's nervous system into overdrive. We made it...through the whole evening of activity and enjoyed it all.
Last night we had the opportunity to go to the Capital Sounds Band's summer concert. We attempted to sit all the way in the back of the theater, behind the speakers, but despite really good sound control, it was just too loud. The myoclonic jerks started only mildly, but we had to go somewhere quieter or leave. On our way out, we found a sitting room just outside the women's restroom and sat in there to enjoy the music. Unfortunately, it smelled like a bathroom so we left at intermission. We enjoyed what we could and we were content as it was more than what we can usually participate in.
Later in the night there was an attempted home invasion. Fortunately, the men were scared off and there was no harm, other than us being wakened at 1:00 a.m. and the fear driving my daughter's nerves once again shot into orbit. For the second time in one day, she experienced what we so un-lovingly refer to as the Jerks; Myoclonic Jerks that is.
Borrowed from Wikipedia
"Myoclonic jerks may occur alone or in sequence, in a pattern or without pattern. They may occur infrequently or many times each minute. Most often, myoclonus is one of several signs in a wide variety of nervous system disorders such as multiple sclerosis, Parkinson's disease, Alzheimer's disease, subacute sclerosing panencephalitis and Creutzfeldt-Jakob disease (CJD), serotonin toxicity, some cases of Huntington's disease, some forms of epilepsy, and occasionally in intracranial hypotension. Some researchers indicate that jerks persistently may even cause early tremors."
My description:
Jerks are like giant hiccups. They can affect just the head, arm, leg or they can affect the whole body at once. TLC has had it affect the whole body. But yesterday, it was just in her neck. It is terrifying and can be very painful especially when the jerks are hard and sudden. For my daughter, they can be triggered by an overloaded sensory function such as intense fear, pain anywhere in her body, and for her being cold.
We enjoy life and are content with the little we can be a part of. Check out the post previous to this one and you will see why. Our God is the master healer and though healing may not occur this side of Glory, it will come and last for an eternity. May you be blessed and enjoy the simple things in life.
People with Chronic Illnesses such as these or all don't get to go out much and participate in what all life has to offer. Despite this, we have found that life can be just as enjoyable at home, with family and enjoying what we can one thing/event at a time.
Don't get me wrong, we do make attempts to go out. When we do, we are always prepared to leave if the activity/event becomes overwhelming.
Recently, we were invited to a suite view of our local baseball team. We were able to sit inside and block out the noise when it was too loud outside from the concert prior to the game. And praise God, the weather was absolutely perfect. As the suite became too cold, and the concert transitioned into a game of America's favorite past-time, we were able to sit on the balcony and take it all in. Then when it came time for fireworks, we were able to go inside and avoid hearing all the loud booms which would surely have sent my daughter's nervous system into overdrive. We made it...through the whole evening of activity and enjoyed it all.
Last night we had the opportunity to go to the Capital Sounds Band's summer concert. We attempted to sit all the way in the back of the theater, behind the speakers, but despite really good sound control, it was just too loud. The myoclonic jerks started only mildly, but we had to go somewhere quieter or leave. On our way out, we found a sitting room just outside the women's restroom and sat in there to enjoy the music. Unfortunately, it smelled like a bathroom so we left at intermission. We enjoyed what we could and we were content as it was more than what we can usually participate in.
Later in the night there was an attempted home invasion. Fortunately, the men were scared off and there was no harm, other than us being wakened at 1:00 a.m. and the fear driving my daughter's nerves once again shot into orbit. For the second time in one day, she experienced what we so un-lovingly refer to as the Jerks; Myoclonic Jerks that is.
Borrowed from Wikipedia
"Myoclonic jerks may occur alone or in sequence, in a pattern or without pattern. They may occur infrequently or many times each minute. Most often, myoclonus is one of several signs in a wide variety of nervous system disorders such as multiple sclerosis, Parkinson's disease, Alzheimer's disease, subacute sclerosing panencephalitis and Creutzfeldt-Jakob disease (CJD), serotonin toxicity, some cases of Huntington's disease, some forms of epilepsy, and occasionally in intracranial hypotension. Some researchers indicate that jerks persistently may even cause early tremors."
My description:
Jerks are like giant hiccups. They can affect just the head, arm, leg or they can affect the whole body at once. TLC has had it affect the whole body. But yesterday, it was just in her neck. It is terrifying and can be very painful especially when the jerks are hard and sudden. For my daughter, they can be triggered by an overloaded sensory function such as intense fear, pain anywhere in her body, and for her being cold.
We enjoy life and are content with the little we can be a part of. Check out the post previous to this one and you will see why. Our God is the master healer and though healing may not occur this side of Glory, it will come and last for an eternity. May you be blessed and enjoy the simple things in life.
The Healing
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Thursday, May 30, 2013
Go Ahead and Cry
In 2007, my father-in-law passed away following his third heart attack. Two weeks later, my husband had his first heart attack. Everything went well for my husband as he recovered, he practically danced out of the hospital the next day. Not long following my husband's successful recovery,
he had to return for a follow up procedure to add one more stint to a
nearly blocked artery. His return visit was nearly his last.
I sat in the waiting room with family and pastor waiting for the procedure to end expecting to waltz out of the hospital the next day. There was no damage to the heart from the mild attack. There should have been no complications from the current procedure. I had prepared myself that the procedure could go longer than expected. I had no fear when it did. I could hear the doctor's name being paged multiple times over the intercom. I thought his office was trying to get a hold of him. I never thought that is was my husband barely hanging on to life.
The doctor's primary nurse came out and told me that there were complications and they were having trouble resuscitating my husband. An hour or so later, the doctor came down and confirmed that they were still having trouble. The doctor could not even look me in the eye to tell me. He suggested that we go up to ICU to see my husband, just in case.
Before we left, I cried. People that I didn't even know came up to me to console me, to tell me that as a Christian, I could put my trust in Christ to take care of him, that I could put my hope in deliverance by grace. They told me that I did not have to cry. Those with hope don't cry. To keep from making more of a spectacle of myself, and to alleviate the fears of those around me, I quickly wiped the tears away.
My husband was in the hospital for a week recovering and during that time I lived in the waiting room. On one occasion, I walked down the hall, sat down and had an all out cry. Every thought, every stored emotion poured out. No one was around. I did not have to think about anyone else. I was able to unleash the frustrations and fears and deal with them one at a time through the tears. Crying is okay. Crying is therapeutic and brings you in touch with raw, honest emotions. I was able to bring closure to these emotions and begin to build a bridge toward a healthy touch with reality.
As a mom with a child that has three rare conditions, Cold Urticaria, Dysautonomia and Ehlers Danlos, I consistently face frustrations dealing with changes in symptoms, changes in medications, doctors, schools, church leadership and friends that don't understand. For every step I make forward, I fall two steps backward. There are times I am scared, times I am mad, times I am crushed and I times I don't know what to give. But, I have always left myself open for when it all becomes too much, to step away from the crowd and have a good cry.
When I am done, my mind is clear, my resolve is stronger and as a mother of a special needs child, I am ready to take on her world once again. Believe it or not, it made my faith stronger, it brought me closer to my Christ.
P.s. My husband is alive and well. :)
I sat in the waiting room with family and pastor waiting for the procedure to end expecting to waltz out of the hospital the next day. There was no damage to the heart from the mild attack. There should have been no complications from the current procedure. I had prepared myself that the procedure could go longer than expected. I had no fear when it did. I could hear the doctor's name being paged multiple times over the intercom. I thought his office was trying to get a hold of him. I never thought that is was my husband barely hanging on to life.
The doctor's primary nurse came out and told me that there were complications and they were having trouble resuscitating my husband. An hour or so later, the doctor came down and confirmed that they were still having trouble. The doctor could not even look me in the eye to tell me. He suggested that we go up to ICU to see my husband, just in case.
Before we left, I cried. People that I didn't even know came up to me to console me, to tell me that as a Christian, I could put my trust in Christ to take care of him, that I could put my hope in deliverance by grace. They told me that I did not have to cry. Those with hope don't cry. To keep from making more of a spectacle of myself, and to alleviate the fears of those around me, I quickly wiped the tears away.
My husband was in the hospital for a week recovering and during that time I lived in the waiting room. On one occasion, I walked down the hall, sat down and had an all out cry. Every thought, every stored emotion poured out. No one was around. I did not have to think about anyone else. I was able to unleash the frustrations and fears and deal with them one at a time through the tears. Crying is okay. Crying is therapeutic and brings you in touch with raw, honest emotions. I was able to bring closure to these emotions and begin to build a bridge toward a healthy touch with reality.
As a mom with a child that has three rare conditions, Cold Urticaria, Dysautonomia and Ehlers Danlos, I consistently face frustrations dealing with changes in symptoms, changes in medications, doctors, schools, church leadership and friends that don't understand. For every step I make forward, I fall two steps backward. There are times I am scared, times I am mad, times I am crushed and I times I don't know what to give. But, I have always left myself open for when it all becomes too much, to step away from the crowd and have a good cry.
When I am done, my mind is clear, my resolve is stronger and as a mother of a special needs child, I am ready to take on her world once again. Believe it or not, it made my faith stronger, it brought me closer to my Christ.
P.s. My husband is alive and well. :)
Tuesday, May 7, 2013
Encouragement - YOUR Weaknesses, HIS Strength
From IntentionalLiving.com
YOUR Weaknesses, HIS Strength
Cerebral Palsy patient,
14-year-old Jack Carroll, was a contestant on Britain’s Got Talent, and pushed his walker
onto the stage to entertain the crowd. When asked to tell a little bit more
about himself, he replied, “I’m a professional gymnast!” The tension snapped
like a twig and the crowd burst into roars of laughter.
Backstage, before his
audition, Jack had recounted, “I use Cerebral Palsy in my act because a lot of
times, in comedy, your weaknesses are your strengths.” What a powerful concept!
The simplicity of Jack’s
idea can be instrumental in your walk with God. He is the only one who knows
your heart, your mind and your inner workings. He can “raise in power” what you
do in weakness to truly change your life (1 Corinthians 15:42).
He knows you, and He
knows your heart. Be encouraged in His strength, despite your weakness.
Today’s One Thing
Are you willing to surrender a personal weakness to God so He can
turn it into a strength?
Go Deeper
1 Corinthians 15:35-49; 2 Corinthians 12:1-10Sunday, May 5, 2013
Section 504? Students with Disabilities in the United States are Protected by a Section 504
Section
504 — just what exactly is it?
You've probably heard about it, but every school district addresses Section 504 in a different manner. Some districts have even been heard to say, “We don’t do that in this district.” But in fact, compliance to Section 504, which is a federal statute, is not optional.
What is Section 504?
In the United States, section 504 is a part of the Rehabilitation Act of 1973 that prohibits discrimination based upon disability. Section 504 is an anti-discrimination, civil rights statute that requires the needs of students with disabilities to be met as adequately as the needs of the non-disabled are met.
Who is covered under Section 504?
To be covered under Section 504, a student must be “qualified ” (which roughly equates to being between 3 and 22 years of age, depending on the program, as well as state and federal law, and must have a disability).
Who is an “individual with a disability”?
As defined by federal law: “An individual with a disability means any person who: (i) has a mental or physical impairment that substantially limits one or more major life activity; (ii) has a record of such an impairment; or (iii) is regarded as having such an impairment” Based on the third option, you can have a chronic condition without a name and still qualify for accommodations. This is important for parents who are waiting to see a specialist and/or are having a hard time getting a diagnosis.
What is an “impairment” as used under the Section 504 definition?
An impairment as used in Section 504 may include any disability, long-term illness, or various disorder that “substantially” reduces or lessens a student’s ability to access learning in the educational setting because of a learning-, behavior- or health-related condition. [“It should be emphasized that a physical or mental impairment does not constitute a disability for purposes of Section 504 unless its severity is such that it results in a substantial limitation of one or more major life activities”
Many students have conditions or disorders that are not readily apparent to others. They may include conditions such as specific learning disabilities, diabetes, epilepsy and allergies. Hidden disabilities such as low vision, poor hearing, heart disease or chronic illness may not be obvious, but if they substantially limit that child’s ability to receive an appropriate education as defined by Section 504, they may be considered to have an “impairment” under Section 504 standards. As a result, these students, regardless of their intelligence, will be unable to fully demonstrate their ability or attain educational benefits equal to that of non-disabled students.
Can a teacher, principal or district refuse to provide you a 504 meeting?
No! A 504 determination meeting is usually organized by the school counselor and is handled as a committee. Once you request a 504 determination meeting, there has to be a meeting. No one individual can refuse your meeting. The committee as a whole will determine based on your child's presentation whether or not to move forward.
When can you start the process of a 504 meeting?
Any time that school is in session. It is much harder to have a meeting the last week of school, but it can be done if you determine that your child has a need and this is the first you learn of it.
What is the difference between an IEP and a 504?
My explanation is very basic and will not cover all the differences. Typically, an IEP is for a child with an intellectual learning disability and a 504 is for those with a physical disability. However a child with both intellectual and physical disabilities only need to have an IEP which will cover the 504 needs. A 504 is legally binding upon your school district just as an IEP is binding. Don't allow anyone to convince you otherwise. Attitudes and support will change from one school to the next and one teacher to the next. If a teacher and/or district refuses to follow your 504 plan, you can follow their chain of command straight to the Board of Education, Superintendent and Governor if necessary. When all else fails, get a lawyer. When that fails--Homeschool. Sometimes the fight is not worth it. The district will suddenly want to help you when you leave them. This is because your child is worth a lot of federal dollars to them, but only when enrolled. You have to decide if it is worth it to stay or go.
Will the school district voluntarily offer services for your child?Usually not. You have to know what you need and ask for it. Keep in mind that with a rare condition that they have never heard of, they don't understand what the child will need.
When can you start planning for a 504 meeting?
If your child is in preschool and you are looking to the future and planning ahead, this okay, go ahead and get your school district involved. School systems receive extra dollars from the federal government to identify children early and to help prevent learning difficulties. Despite this, they can be reluctant to do their part so be ready to push and be the squeaky wheel.
Where do you start?
Start with the doctor, ask him/her to help you with your 504 letter. They will stipulate in the letter what needs your child has and what types of accommodations need to be made. However, not all doctors understand the 504 process, what needs to be included or how specific they need to be. You can write an accommodations report for the doctor and ask them to review it, make necessary modifications and sign it. Be honest in your assessment though and don't ask for more than you need. This can only hurt you later on. Once your child is identified as being on a 504 plan, that designation follows them all the way to college. Once this is approved, go to the school counselor and request a Section 504 meeting. They will know what you are asking for.
What happens when the child's needs change?
You change your 504 plan. You can request an update meeting at any time through out the school year. Modifications can be made. You should always have a meeting at the beginning of the school year and again at the end of the school year.
Impairments for those with Cold Urticaria
Listed below are considerations to be taken for children with cold urticaria. Depending on severity of the symptoms, you may not need to address certain items, but select the ones that are most important for your child's needs.
In our state, you must declare in your 504 if you anticipate your child missing an excessive number of days throughout the year for being sick.
No direct access to the doctors
Never give the school nurse or school district direct access to the child's doctors. All communication should go through you as the parent. This is a new trend, but no where in the law are you required to give them access. I have seen this go bad easily. Nurses that talk to doctors get manipulative and your child gets fewer services than what they need.
If they do stress you for contact, you can give them a form stipulating exactly what they can and cannot ask of the doctor. The doctor should get a copy too. Such as, they can verify that the children are being tested and treated for Cold Urticaria and its related diagnoses, but no other information can be given out without a parent's written permission. The school system cannot refuse to allow attendance based on your refusal, this would be a violation of your child's 504 and ADA rights.
You've probably heard about it, but every school district addresses Section 504 in a different manner. Some districts have even been heard to say, “We don’t do that in this district.” But in fact, compliance to Section 504, which is a federal statute, is not optional.
What is Section 504?
In the United States, section 504 is a part of the Rehabilitation Act of 1973 that prohibits discrimination based upon disability. Section 504 is an anti-discrimination, civil rights statute that requires the needs of students with disabilities to be met as adequately as the needs of the non-disabled are met.
Who is covered under Section 504?
To be covered under Section 504, a student must be “qualified ” (which roughly equates to being between 3 and 22 years of age, depending on the program, as well as state and federal law, and must have a disability).
Who is an “individual with a disability”?
As defined by federal law: “An individual with a disability means any person who: (i) has a mental or physical impairment that substantially limits one or more major life activity; (ii) has a record of such an impairment; or (iii) is regarded as having such an impairment” Based on the third option, you can have a chronic condition without a name and still qualify for accommodations. This is important for parents who are waiting to see a specialist and/or are having a hard time getting a diagnosis.
What is an “impairment” as used under the Section 504 definition?
An impairment as used in Section 504 may include any disability, long-term illness, or various disorder that “substantially” reduces or lessens a student’s ability to access learning in the educational setting because of a learning-, behavior- or health-related condition. [“It should be emphasized that a physical or mental impairment does not constitute a disability for purposes of Section 504 unless its severity is such that it results in a substantial limitation of one or more major life activities”
Many students have conditions or disorders that are not readily apparent to others. They may include conditions such as specific learning disabilities, diabetes, epilepsy and allergies. Hidden disabilities such as low vision, poor hearing, heart disease or chronic illness may not be obvious, but if they substantially limit that child’s ability to receive an appropriate education as defined by Section 504, they may be considered to have an “impairment” under Section 504 standards. As a result, these students, regardless of their intelligence, will be unable to fully demonstrate their ability or attain educational benefits equal to that of non-disabled students.
Can a teacher, principal or district refuse to provide you a 504 meeting?
No! A 504 determination meeting is usually organized by the school counselor and is handled as a committee. Once you request a 504 determination meeting, there has to be a meeting. No one individual can refuse your meeting. The committee as a whole will determine based on your child's presentation whether or not to move forward.
When can you start the process of a 504 meeting?
Any time that school is in session. It is much harder to have a meeting the last week of school, but it can be done if you determine that your child has a need and this is the first you learn of it.
What is the difference between an IEP and a 504?
My explanation is very basic and will not cover all the differences. Typically, an IEP is for a child with an intellectual learning disability and a 504 is for those with a physical disability. However a child with both intellectual and physical disabilities only need to have an IEP which will cover the 504 needs. A 504 is legally binding upon your school district just as an IEP is binding. Don't allow anyone to convince you otherwise. Attitudes and support will change from one school to the next and one teacher to the next. If a teacher and/or district refuses to follow your 504 plan, you can follow their chain of command straight to the Board of Education, Superintendent and Governor if necessary. When all else fails, get a lawyer. When that fails--Homeschool. Sometimes the fight is not worth it. The district will suddenly want to help you when you leave them. This is because your child is worth a lot of federal dollars to them, but only when enrolled. You have to decide if it is worth it to stay or go.
Will the school district voluntarily offer services for your child?Usually not. You have to know what you need and ask for it. Keep in mind that with a rare condition that they have never heard of, they don't understand what the child will need.
When can you start planning for a 504 meeting?
If your child is in preschool and you are looking to the future and planning ahead, this okay, go ahead and get your school district involved. School systems receive extra dollars from the federal government to identify children early and to help prevent learning difficulties. Despite this, they can be reluctant to do their part so be ready to push and be the squeaky wheel.
Where do you start?
Start with the doctor, ask him/her to help you with your 504 letter. They will stipulate in the letter what needs your child has and what types of accommodations need to be made. However, not all doctors understand the 504 process, what needs to be included or how specific they need to be. You can write an accommodations report for the doctor and ask them to review it, make necessary modifications and sign it. Be honest in your assessment though and don't ask for more than you need. This can only hurt you later on. Once your child is identified as being on a 504 plan, that designation follows them all the way to college. Once this is approved, go to the school counselor and request a Section 504 meeting. They will know what you are asking for.
What happens when the child's needs change?
You change your 504 plan. You can request an update meeting at any time through out the school year. Modifications can be made. You should always have a meeting at the beginning of the school year and again at the end of the school year.
Impairments for those with Cold Urticaria
Listed below are considerations to be taken for children with cold urticaria. Depending on severity of the symptoms, you may not need to address certain items, but select the ones that are most important for your child's needs.
In our state, you must declare in your 504 if you anticipate your child missing an excessive number of days throughout the year for being sick.
- At no time should your child be separated from or be made to stand out from other children in class unless there is no reasonable accommodation.
- Should the child be injured in such a way to cause swelling, DO NOT apply ice. A compression bandage can be applied and elevating the effected area. Call parents if severe.
- If CU symptoms are severe, all teachers, not just child's teacher, substitute teachers, hall monitors, security officers, office staff, nurses and bus drivers should be made aware of child's condition and how to protect child from excessive exposure.
- When excessive absences are necessary, request to have a tutor come to your house to help your child. This will give you home bound status.
- Request a set of books to stay at home so that when there are absences, you can get your child's assignments and help them with their work while out. Especially if you don't have home bound status.
- Spell out the signs of an impending reaction and other co-reactions such as Asthma like symptoms, Reactive Hypoglycemia, Excessive Tiredness, Headaches, flushing, scratching, nausea, vomiting, diarrhea, confusion, listlessness etc.
- Let them know that child can be reactive to cold without actually being cold. This can lead to child overheating when applying additional layers of clothing or wearing coats in the class.
- Standing outside in the cold/wind/rain -
- School should allow child indoors before school starts when other kids are not allowed in before a certain time.
- School should allow child indoors after school when waiting for a parent to pick them up when weather dictates.
- At no time should child be outside when temperatures are below______ degrees, when it is raining or has recently rained (still wet) or is windy.
- A special needs bus should be arranged to pick up child to and from home and climate must be well controlled. This is necessary for field trips as well.
- Child should be allowed to either a)remain inside with a teacher during a fire alarm, or b) be allowed to go to a neighboring school/business or c)allowed to sit in a teachers heated car.
- Child cannot participate in outdoor activities during Physical Education class when temps are below __________, when raining or when breezy. Alternatives can be established in place of PE such as staying in the Library, Office or helping tutor other grades in another class.
- Classroom / Indoor expectations
- If the child is reactive during the winter or summer with the A/C and the school does not allow coats indoors, request that the child be allowed to wear jackets, coats, mittens etc. indoors to prevent a reaction.
- Establish that a portable heater should be used in the class and that teachers and other students do not have the right to commandeer the heater for themselves.
- Teachers should not wait for child to ask for help, they should provide it! Younger children don't always remember to put on a coat/mittens, take their meds or avoid certain areas without being reminded.
- Rooms with water leaks allow for dampness and excessive moisture in the air. Broken windows, older buildings and portable buildings tend to be drafty and hard to control climate wise and all should be avoided for child's wellbeing. We have requested that my daughter be transferred to a school that was new built over the older buildings which were very drafty and had insufficient heat and air control.
- Let them know the minimum temperature for the child and how the classroom temp should be set. Some kids have a minimum of 10 degrees; however, other kids can have a higher limit. My daughter's is 70 degrees.
- Teachers should supply an itinerary of what will be learned at the beginning of the school year and a weekly assignment list at the beginning of each week. This can be posted online or sent home to the parent in writing. If the teacher so desires than can even use a smart phone to take a picture of the assignments that they write on the board and email it to the parents.
- Teachers should be talking with parents by email, phone or in person immediately when child begins having a decline in their grades. Don't wait for report cards to determine there is an issue.
- If child has an issue with excessive tiredness at school and at home, a time limit needs to be set for the amount of homework that can be completed. The teachers should accept what is completed and not expect it all to be done.
- Sometimes state and national testing times can present a problem for the child. These weeks of testing are heavily controlled and prevent the child from taking meds on time and being able to leave the room if necessary. You can stipulate that the child will be absent during that week and will be allowed to make up the testing. Make up test times are not controlled and the child can have a snack if hypoglycemic, take meds on time and/or leave the room for a warm room if necessary.
- In the event a class is rewarded with an ice cream social, the school is to supply your child with an alternative. Don't leave them out.
- After School activities and Field Trips
- In no way should a child be excluded from after school activities and field trips if their needs can be accommodated. Find out how your child's needs can be accommodated and spell it out for them.
- Children should be assigned a buddy if reactions are severe and there are not enough adults to monitor the child.
- Medications
- Specify what medications are to be taken, when and how. In the event of an inhaler or Epi-pen you can even stipulate that the child retains possession of the meds and can medicate themselves if appropriate. If maintenance meds are given and need to be taken at a certain time, this can be identified in the 504 as well.
- Provide child with a medical bracelet and let them know that the child has one and to contact you when needed.
- Let them know that the condition is known to get worse and kids tend to outgrown their medications which can lead to an adjustment period of changing meds and an increase in absences.
No direct access to the doctors
Never give the school nurse or school district direct access to the child's doctors. All communication should go through you as the parent. This is a new trend, but no where in the law are you required to give them access. I have seen this go bad easily. Nurses that talk to doctors get manipulative and your child gets fewer services than what they need.
If they do stress you for contact, you can give them a form stipulating exactly what they can and cannot ask of the doctor. The doctor should get a copy too. Such as, they can verify that the children are being tested and treated for Cold Urticaria and its related diagnoses, but no other information can be given out without a parent's written permission. The school system cannot refuse to allow attendance based on your refusal, this would be a violation of your child's 504 and ADA rights.
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