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. :)

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 12:1-10

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.

• 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.

 

Play After Every Storm

I added this to my facebook page "Praying for TLC" over a year ago. But it is worthy to be posted here.

Borrowed from Wikipedia - Matthew Joseph Thaddeus Stepanek, known as Mattie Stepanek, was an American poet, who had six books of poetry and one book of essays all reach The New York Times bestsellers list. He became a peace advocate and motivational speaker, and lobbied on Capitol Hill on behalf of peace, people with disabilities, and children with life-threatening conditions.
In 2002, Stepanek began a three-term appointment as the Muscular Dystrophy Association National Goodwill Ambassador.
Stepanek suffered from a rare form of muscular dystrophy, dysautonomic mitochondrial myopathy that resulted in his death. Mattie Stepanek died three weeks before his 14th birthday.
A eulogy was delivered by former President Jimmy Carter, who said,
"We have known kings and queens, and we've known presidents and prime ministers, but the most extraordinary person whom I have ever known in my life is Mattie Stepanek. His life philosophy was 'Remember to play after every storm!'"

What a wonderful story to find as I sit here during a major storm that is sweeping our nation. Not only do families of children with special needs deal with natural storms, but also health crises. Each crisis can be a storm unto itself and each storm can manifest a multitude of crises. May we learn to play after every storm.  - March 2012