The Emotions of Caring for Elderly Parents

As your parents or your spouse’s parents get older, they will probably need your help. They will also possibly need professional help with their daily care. The very people whom you depended on in the past will be turning to you for assistance. The fundamental nature of your relationship with your parents will change in a more dramatic way than you have ever experienced. Now you and your spouse will be the caregivers.

Caring for your parents as they get older is often a stressful experience. There are many emotions you might experience along with your new responsibility. When you become the caretaker of your parents, it’s very important for you to be aware of your emotions. It can make the difference between having a meaningful, rewarding experience and having one of the worst experiences of your life. The following sections describe the most common emotions people feel when they are faced with their parents becoming older and less independent.        

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Denial

One of the first things you might feel when facing a parent’s decline in function is—nothing. It’s very common to initially be in denial about a difficult situation. When you are in denial about something, you are trying to convince yourself that it’s not really happening. For instance, imagine that your father, who lives alone, is slowing down and becoming weaker. You want to keep thinking of him as strong and healthy, so you tell yourself that he’s generally fine. In the short run, that makes you feel better. But, your father probably shouldn’t be living alone. And you won’t be able to help him find a safer place until you are able to acknowledge his limitations. Denial can prevent you from facing facts and making necessary plans.

Anger

Another emotion you might feel is anger at your parents for being unable to take care of themselves. For example, you might feel that it’s their fault for not staying healthy, even though you know that they are not getting sick on purpose. You might resent the fact that they are taking so much of your time and energy. You are especially vulnerable to feeling anger if your relationship with your parents was less than perfect. It’s more difficult to take care of someone that you feel some resentment toward. But, even if you have a great relationship with your parents, caring for them might feel like a huge burden. It makes sense that you might feel angry because you have been shouldered with a big responsibility.

Think Twice

Don’t take your anger at the situation out on your spouse. Instead, discuss your feelings of anger or resentment with him or her. Remember that your spouse can be your strongest source of support during this difficult time.

Helplessness

Even though you are grown up, you might feel like your parents should always be there to take care of you and still help you through difficult times. Seeing your mother or father helpless can make you feel helpless. You might think “If my parents can’t take care of me, who will?” You are your parents’ child, even as an adult. And when one of your parents is weak, part of you is going to feel like a scared, helpless child. Even though you know that you can take care of yourself, you still might feel that you need your parents to take care of you.

Guilt

Guilt is one of the strongest emotions people feel as a parent becomes older and less able to care for him- or herself. There are many reasons that you might be feeling guilty. You might feel that you are not doing enough to help your parents. This might be true, or you might be doing more than a reasonable amount and feel guilty anyway. You might feel that if you had done something different years ago, then your parent would not be so ill now. For instance, you might think that if you had taken your mother’s complaint about feeling weak and tired more seriously, her cancer would have been diagnosed earlier and she would have been cured.

If one of your parents is very sick and needs a lot of expensive care and a lot of your energy, you might be secretly wishing that he or she would die so that it would be over. This thought would probably cause you to feel incredibly guilty. It’s very common to feel this, and it’s a completely normal reaction. It doesn’t mean that you don’t love your sick parent and it doesn’t mean you are a terrible child. It means that it’s very difficult and possibly very expensive to care for an ill person—realities that can prompt all kinds of unexpected thoughts and feelings. The best way to deal with these feelings is to acknowledge them but still do as much as you can to care for your parents.

A Sense of Loss

When your parent is no longer functioning at 100 percent, that is a big loss. It’s normal to feel sad, and it’s actually a mature feeling. Feeling sad when your parents are ill and unable to take care of themselves means that you have accepted the situation and the loss that occurs when your parent’s health declines. You shouldn’t hold back tears. Crying is part of feeling sad and it’s okay to express your emotions. That doesn’t mean that you should spend years moping around and crying as your parents become more and more ill. But sadness comes with loss, and you should give yourself permission to feel it.

Mortality

Parents are the buffer between you and your mortality. Most people are able to ignore the inevitability of their own death as long as their parents are alive and healthy. But as your parent’s health declines, you will probably become highly aware of your own mortality. You might start thinking about the end of your own life or have frequent nightmares about dying. You might start examining where you are in life and re-evaluating your long-term goals. When you face the death of someone close to you, it will often spark thoughts about your own life. This is good, and the way to make use of this constructively is to realize how precious life is and what is really important to you.

CARING FOR THE CAREGIVER:

Caring for the Caregiver 

 

Changing the course of your child’s life with special needs can be a very rewarding experience. You are making an enormous difference in his or her life. To make it happen, you need to take care of yourself. Take a moment to answer these questions: Where does your support and strength come from? How are you really doing? Do you need to cry? Complain? Scream? Would you like some help but don’t know who to ask? 

Remember that if you want to take the best possible care of your child, you must first take the best possible care of yourself.

Parents often fail to evaluate their own sources of strength, coping skills, or emotional attitudes. You may be so busy meeting the needs of your child that you don’t allow yourself time to relax, cry, or simply think. You may wait until you are so exhausted or 
stressed out that you can barely carry on before you consider your own needs. Reaching this point is bad for you and for your family. 

You may feel that your child needs you right now, more than ever. Your all to familiar  “to do” list may be what is driving you forward right now. Or, you may feel completely overwhelmed and not know where to start. There is no single way to cope. Each family is unique and deals with stressful situations differently. Getting your child started in treatment will help you feel better. Acknowledging the emotional impact of having a child with special needs, and taking care of yourself during this stressful period will help prepare you for the challenges ahead. Many disabilities are pervasive, multi-faceted disorder’s. They will not only change the way that you look at your child, they will change the way you look at the world. As some parents may tell you, you may be a better person for it. The love and hope that you have for your child is probably stronger than you realize. 

Here are some tips from parents who have experienced what you are going through: 

Get going. Getting your child started in treatment will help. There are many details you will be managing in an intensive treatment program, especially if it is based in your home. If you know your child is engaged in meaningful activities, you will be more able to focus on moving forward. It may also free up some of your time so you can educate yourself, advocate for your child, and take care of yourself so that you can keep going. 

Ask for help. Asking for help can be very difficult, especially at first. Don’t hesitate to use whatever support is available to you. People around you may want to help, but may not know how. Is there someone who can take your other kids somewhere for an afternoon? Or cook dinner for your family one night so that you can spend the time learning: Can they pick up a few things for you at the store or fold a load of laundry? Can they let other people know you are going through a difficult time and could use a hand? 

Talk to someone. Everyone needs someone to talk to. Let someone know what you are going through and how you feel. Someone who just listens can be a great source of strength. So many parents concentrate on the therapies their child needs and ignore or deny the fact that they made need therapy too!  If you can’t get out of the house, use the phone to call a friend.

“At my support group I met a group of women who were juggling the same things I am. It felt so good not to feel like I was from another planet!”

Consider joining a support group. It may be helpful to listen or talk to people who have been or are going through a similar experience. Support groups can be great sources for information about what services are available in your area and who provides them. You may have to try more than one to find a group that feels right to you. You may find you aren’t a “support group kind of person.” For many parents in your situation, support groups provide valuable hope, comfort and encouragement. 

                                                             Links to local Family Services coming soon

Try to take a break. If you can, allow yourself to take some time away, even if it is only a few minutes to take a walk. If it’s possible, getting out to a movie, going shopping, or visiting a friend can make a world of difference. If you feel guilty about taking a break, try to remind yourself that it will help you to be renewed for the things you need to do when you get back. Try to get some rest. If you are getting regular sleep, you will be better prepared to make good decisions, be more patient with your child and deal with the stress in your life. 

Consider keeping a journal. Louise DeSalvo, in Writing as a Way of Healing, notes that studies have shown that “writing that describes traumatic events and our deepest thoughts and feelings about them is linked with improved immune function, improved emotional and physical health,” and positive behavioral changes. Some parents have found that journaling is a helpful tool for keeping track of their children’s progress, what’s working and what isn’t. 

Be mindful of the time you spend on the Internet. The Internet will be one of the most important tools you have for learning what you need to know about the “special need/diagnosis,”  and how to help your child. 

Unfortunately, there is more information on the web than any of us have time to read in a lifetime. There may also be a lot of misinformation. Right now, while you are trying to make the most of every minute, keep an eye on the clock and frequently ask yourself these important questions: 
• Is what I’m reading right now very likely to be relevant to my child? 
• Is it new information? 
• Is it helpful? 
• Is it from a reliable source? 
Sometimes, the time you spend on the Internet will be incredibly valuable. Other times, it may be better for you and your child if you use that time to take care of yourself. 

Hire an advocate: Simply hiring an advocate can be immensely freeing; having someone else’s perspective, understanding, and on call expertise can eliminate insurmountable stress. Advocates are wonderful, well-educated, and very caring people. Their goal is to educate you the parent, the school, and the child to understand better exactly what is best for your child’s academic, social, behavioral, program needs while taking the burden off your hands..

Need help?

Want advice?

Call Special Needs NJ. LLP                      (973) 534-3402

or email: specialneedsnj@hotmail.com 

 

 

 

Shared by http://www.autismspeaks.org/what-autism/autism-your-family

Executive Functioning difficulties/disorder/disability? What?

Executive function is a set of mental processes that helps connect past experience with present action. People use it to perform activities such as planning, organizing, strategizing, paying attention to and remembering details, and managing time and space.

In school, at home or at work, we use executive functioning to:

  • Make plans
  • Keep track of time and finish work on time
  • Keep track of more than one thing at once
  • Meaningfully include past knowledge in discussions
  • Evaluate ideas and reflect on our work
  • Change our minds and make mid-course corrections while thinking,  reading and writing
  • Ask for help or seek more information when we need it
  • Engage in group dynamics
  • Wait to speak until we’re called on

A student may have problems with executive function when he or she has trouble:

  • Planning projects
  • Comprehending how much time a project will take to complete
  • Telling stories (verbally or in writing), struggling to communicate details in an organized, sequential manner
  • Memorizing and retrieving information from memory
  • Initiating activities or tasks, or generating ideas independently
  • Retaining information while doing something with it, for example, remembering a phone number while dialing

What to do if you suspect you or your child is having executive functioning problems:

There are many effective strategies to help with executive function challenges:
General Strategies

  • Take step-by-step approaches to work; rely on visual organizational aids.
  • Use tools like time organizers, computers or watches with alarms.
  • Prepare visual schedules and review them several times a day.
  • Ask for written directions with oral instructions whenever possible.
  • Plan and structure transition times and shifts in activities.

Managing Time

  • Create checklists and “to do” lists, estimating how long tasks will take.
  • Break long assignments into chunks and assign time frames for completing each chunk.
  • Use visual calendars at to keep track of long-term assignments, due dates, chores and activities.
  • Use management software such as the Franklin Day Planner, Palm Pilot or Lotus Organizer.
  • Be sure to write the due date on top of each assignment.

Managing Space and Materials

  • Organize work space.
  • Minimize clutter.
  • Consider having separate work areas with complete sets of supplies for different activities.
  • Schedule a weekly time to clean and organize the work space.

Managing Work

  • Make a checklist for getting through assignments. For example, a student’s checklist could include such items as: get out pencil and paper; put name on paper; put due date on paper; read directions; etc.
  • Meet with a teacher or supervisor on a regular basis to review work; troubleshoot problems.

For specific help for your family member suffering from Executive functioning disorders/problems, contact Special Needs NJ (973) 534-3402

 

The ABC’s of Special Education

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 Anatomy of a Special Needs Child

18.5% of American Children under 18 are special needs students.That doesn’t mean they aren’t smart, talented, or capable. Just that they have specific challenges that a “normal” student wouldn’t face.

There are four major types of special needs children.

1.)Physical– Muscular Dystrophy, Multiple Sclerosis, Chronic Asthma, Epilepsy, etc.
2.) Developmental–Down syndrome, autism, dyslexia, processing disorders.
3.)Behavioral/Emotional–ADD, Bipolarism, Oppositional Defiance Disorder
4.)sensory impaired–Blind, visually impaired, deaf, limited hearing.

Here’s our guide on how to identify and care for special needs children.

The basics

Is your child being treated humanely?               Know your rights:
The IDEA Act (Individuals with Disabilities Education Act):
–Students with disabilities must be prepared for further education, employment, and independent living.
–If a child’s strength, endurance, or stamina cannot keep up with school activities, they can qualify for “other health impaired” special education status.
Section 504 of the rehabilitation Act:
–Prohibits schools from discriminating against children with disabilities.
–Requires schools to provide accommodations for disabled students.
–Students with impairments that substantially limit a major life activity can qualify as disabled (learning and social development deficits too).
Americans with Disabilities Act (ADA):
–Schools must meet the needs of children with psychiatric problems.
No Child Left Behind
–Schools must uphold achievement standards for children with disabilities.

Core Concepts

IEP, (or Individualized Education Program) is a legally binding document spelling out what special education services your child will receive and why. Includes classification and accommodations.
Classification: One of 13 different disability classes that qualify for special education services. Including: visual impairment, speech and language impairment, auditory impairment. deaf/blind, Autism, developmental disabilities, multiple disabilities, orthopedic impairment, Specific learning disabilities, emotional/behavioral disorder, traumatic brain injury, multi-sensory impairment, and serious health impairment.
Accommodations: a change in timing, presentation, formatting, setting, etc… that will allow the student to complete normal classwork.
Modification: an adjustment to an assignment that a special needs child is not expected to complete at a normal level.

Types of Special Needs

Special Physical Needs

Whether you already know, or just believe your child may have special medical needs, finding the proper medical professionals greatly enhances your ability to take care of your children.

Choosing a doctor:
Location: if your child requires regular visits, you won’t want to drive for hours to specialist.
Demeanor: you want someone non-threatening (particularly to younger children) who is understanding towards special needs accommodations.
Insurance Help: Larger practices generally have more experience with expediting insurance procedures and being your advocate.
Availability: Something to balance with quality of service. You will probably need notes for teachers, school administrators, and others, and want to have an easily accessible doctor.
Quality of service: Perhaps the most important criterion. Set up a 10-15 minute “meeting” so you can gauge the Doctor’s knowledge about your child’s conditions.

Types of Special Physical Needs

Allergies and Asthma: 1/5
Juvenile Arthritis:1/1000
Leukemia: Very rare
Muscular Dystrophy: 1/35,000
Sight Impaired:
Multiple Sclerosis: 1/750
Hearing Impaired:

Tips for dealing with medical needs

1.) See if your child qualifies for “other health impaired” placement in special ed.
a.) Other health impaired (according to Federal Regulation) includes children who have “limited strength, vitality, or alertness, including to environmental stimuli.”

Allergies and Asthma– Are the same in children as in adults, only children have less maturity and emotional resources than adults to deal with them.

Tips:
1.) Explain to children what they are allergic to.
2.) Alert school personnel as to the conditions and provide medicines.
3.) Work with school personnel to make accommodations.
a.) Substitute another activity for recess on high pollen count days.
b.) Make sure that caretakers schedule symptom inducing activities around when a child will be in the area.
c.) Tailor coursework to provide emotional and explanatory support for the child’s condition.

Juvenile Arthritis

–Education is often interrupted during long “flare-ups” of juvenile arthritis. Here’s what you can do to promote healthy development.
1.) Establish an IEP or 504 plan with educators to ensure that your child’s rights are protected.
a.) The IDEA act (Individuals with Disabilities Education Act) outlines a special needs child’s rights in education.
2.) If the students strength, endurance, or stamina is affected obtain a note from a physician to see if your child qualifies for special education under “other health impaired.”
3.) Contact the hospital or homebound coordinator for your district if your child is frequently missing large periods of school.
4.) Frequent communication between parents and teacher ensures the teacher knows the student’s current medical status and can adapt lessons accordingly.
5.) Proper ergonomics in the classroom are particularly important for children with juvenile diabetes

Leukemia–The five-year survival rate for Leukemia is 60%-80%.

Over such a prolonged period key emotional and cognitive developmental stages may be reached.
Key factors:
1.) Limit pain
2.) Emotional support helps with development
3.) Mental engagement is important so that recovering children don’t fall massively behind.

Muscular Dystrophy

1.) Ensure your child is being worked with by an Assistive Technologist, Occupational Therapist, and school Psychologist.
2.) Make sure that teachers understand that fatigue, clumsy or slow movement, or slurred words are health issues, not behavioral issues.
3.) Remember your child is still a child with normal interests and dreams.

Sight impaired

1.) Seek out an assistive technologist if impairment persists after help from an eye doctor. It’s hard to learn if you can’t see!

Hearing impaired

1.) Seek out ENT’s and assistive technologists to help your child. It’s hard to learn if you can’t hear!

Special developmental needs

Many developmental delays can be spotted in a child’s first year of life. Children develop at different rates, but these are the rough ages a child should reach certain milestones.

Motor skills

3 months:
1.) Lift head and chest when on stomach
2.) Follow people and moving objects with eyes
3.) Grasp rattle when given to her.

6 months:
1.) Reach for and grasp for objects
2.) Roll over
3.) Sit with little support
12 months:
1.) Drink from cup with help
2.) Crawl
3.) Walk with help

Sensory and thinking skills

3 months:
1.) Recognize bottle or breast
2.) Turn head to bright colors or sound of human voice

6 months:
1.) Imitate familiar actions.
2.) Open mouth for spoon.

12 months:
1.) Try to accomplish simple goals.
2.) Copy sounds and actions you make.

Language and social skills

3 months:
1.) Communicate fear, hunger, or discomfort.
2.) Smile when smiled at.

6 months:
1.) Smile at self in mirror.
2.) Know familiar faces.
3.) Babble. Sing-song noises.

12 months:
1.) Try to “talk” with you.
2.) Understand simple commands.
3.) Show apprehension at strangers, affection to familiar adults.

Tips for dealing with Special Developmental Needs:

Autism: 1/110
Autism spectrum disorder ranges from mild lack of social understanding, to non-verbal

Early signs:
1.) Not responding to name by 12 months.
2.) Delayed speech and language skills.
3.) Avoiding eye contact.
4.) upset with small changes in routine.

Tips:
1.) Get an evaluation as early as possible.
2.) Utilize school psychologist, and occupational therapist.
3.) Create a “safe” zone where the child can be alone and relax at home.
4.) Pay attention to child’s hypersensitivity.

Dyslexia: 1/5
Dyslexia is very taxing, taking at least 5% more energy to process basic tasks. Those with dyslexia have much to offer, however, with dyslexia sufferers often being above average IQ and highly creative.

Early Signs:
1.) Appears bright, but unable to read at grade level.
2.) Tests well orally, but not on written tests.
3.) Seems to “daydream” a lot.

Tips:
1.) Read advanced material. This engages both sides of the brain.
2.) Don’t stress the misreading of “little” words (in, i’m, none, he). They will outgrow such mistakes.
3.) Discussion, discussion, discussion.

Many students with developmental delays are actually very gifted. Don’t stress the little mistakes, let them show you what they can do.

Special Behavioral/Emotional Needs

Students with behavioral/emotional needs are more than capable of learning, but their disabilities need management so they don’t distract themselves or the entire class.
–Obsessive Compulsive Disorder (OCD): 1/200
–Post Traumatic Stress Syndrome (PTSD): 1/20
–Anxiety Disorders:

Overall tips:
1.) Learn more about your students specific illness, what caused it, what type of therapy they’re attending, and so on.
2.) Learn about the student’s strengths. Pull these out. Positive reinforcement works.
3.) Set very clear behavioral rules on the entire class or family.

Support the inclusion of all types of children and celebrate their talents. Most of all, don’t forget they’re just kids.

Thank you to Masters in Special Education for this information:

Link to Masters in Education.com

Citations

– http://www.healthfinder.gov/HealthAtoZ/Letter/e

– http://specialchildren.about.com/od/medicalissues/tp/Medical-Diagnosis-Index-A-B.htm

– http://www.cincinnatichildrens.org/patients/child/special-needs/medical/disabilities/default/

– http://www.cancer.org/cancer/leukemiainchildren/detailedguide/childhood-leukemia-survival-rates

– http://www.ces.ncsu.edu/depts/fcs/pdfs/NC08.pdf

– http://www.aafa.org/display.cfm?id=9&sub=30

– http://www.kidsgetarthritistoo.org/about-ja/the-basics/genetic-arthritis.php

– http://www.shs.d211.org/science/faculty/bms/findocbio.pdf

– http://www.shs.d211.org/science/faculty/bms/findocbio.pdf

– http://www.disabilitysa.org/content-files/USAA%20Foundation%20-%20Children%20with%20Special%20Needs.pdf

– http://specialed.about.com/cs/idea/a/faq1.htm

– http://ms.about.com/od/multiplesclerosis101/p/ms_risk_factors.htm

– http://nichcy.org/disability/milestones

– http://www.p12.nysed.gov/specialed/autism/ASDbrochure.htm

– http://www.dosomething.org/tipsandtools/11-facts-about-dyslexia

– http://www.dyslexia.com/library/symptoms.htm

– http://www.ocfoundation.org/prevalence.aspx

– http://www.ptsd.va.gov/professional/pages/ptsd_in_children_and_adolescents_overview_for_professionals.asp

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FREE Parents Seminar

SPECIAL NEEDS NJ, LLP

      Services for families with “Special” needs

          Presents their inaugural Seminar for parents:

                 

 The “ABC’s” of Special Education

 

About:  This seminar is an overview for parents that have a child struggling in school that may need services and those parents that already have a classified student. Learn how to advocate for your child,  what you need to know to get the best IEP, Individual Education Plan, for your child, and “What do all these letter’s mean?” Learn the definitions/descriptions of NJ’s classifications for Special Education students. Hear from a neuropsychologist, Special Educator, Advocate, and parents that have been through the process.

When:    Friday November 1, 2013      7:00-9:00 p.m.

Where: 93A Spring St. Newton NJ, 0786 (next to the Red Cross, under the clock) additional parking in back lot off of Trinity St.

Registration required: FREE        Call:  (973)534-3402 to register

Email: specialneedsnj@hotmail.com

Please register by Oct. 30, 2013

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