Cyclic Vomiting Syndrome

I've had a Mom request information on Cyclic Vomiting Syndrome. Anyone out there have any information that could help?

reminder

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In addition to meeting all the needs of a child or children with special needs, there are often siblings who have needs to be met as well. Meyer (1993) states,

agencies are now beginning to understand that brothers and sisters of children with special needs have concerns that in many ways parallel their parents' experience. But compared with their parents, these brothers and sisters enjoy far fewer programs, services and considerations--even though the sibling relationship is frequently the longest lasting relationship in the family.

Meyer (1993) points out many special needs that siblings of children with special needs have. Among them are feelings of loss and isolation, a need for information about the disability, increased care giving responsibilities, worrying that they have the disability, and pressure to achieve. Siblings of children with special needs also often struggle with feelings of guilt, resentment, and worry about their siblings future as well as their own (Meyer, 1993).

The best start parents can have is being aware of these unique needs and concerns of the siblings of children with special needs.

Meyer, D. (1993). Siblings of children with special health and developmental needs programs, services and considerations . Retrieved from http://www.archrespite.org/archfs23.htm

note:

Some titles on the survey say "pre-survey" but don't worry, the link will only take you to the correct "post-survey." Once I launch it, it's difficult to edit, sorry about the typo!

Post-survey

Next week will be the last official post for my project. Please take the time over the next couple of weeks to respond to the post-survey by clicking to the link on the right. This will help me finish up and submit my final project. Thank you all for your participation and support! I will be keeping the blogs open and will check back to them even after my project is done, if you ever want to discuss any of these topics! Thank you!

The Raising Children Network (2010) has some great suggestions for talking to professionals about your child with special needs. Some of the suggestions are to speak honestly and be specific, and to try to be positive as much as possible (Raising Children Network, 2010). It’s also important to be a good listener, and have an open mind. It’s okay to bring someone along for support as well (Raising Children Network, 2010). It’s a good idea to be aware of how the professional communicates with and around your child as well. The professional should acknowledge that your child is present, and talk directly to your child if appropriate (Raising Children Network, 2010). The professional should be able to put your child at ease, and watch for signs that your child is uncomfortable (Raising Children Network, 2010).

Raising Children Network. (2010). Disability professionals: what to expect. Retrieved from http://raisingchildren.net.au/articles/disabilities_professionals_what_to_expect.html

According to Johnston (2005) a great obstacle to teens with disabilities is overcoming isolation. Helping a teen with a disability get out of their shell can be a challenge! The first concern of course is safety. Any activity a teen with disabilities is involved in must have an adult who is prepared for possible emergencies in attendance. That alone is a big hurtle to overcome. MassGeneral Hospital for Children (2010) states

All youth with disabilities, as their counterparts without disabilities need to move through the following developmental tasks to reach adulthood:

*Develop a personal identity with an acceptable self-image

*Establish intimate relationships outside the family including some expression of sexuality

*Move toward a level of independence

*Define a role in the community by undertaking a vocation

The teen years are hard enough for anyone, and teens with disabilities have extra challenges to overcome, which means they need extra support!

Johnston, S. (2005). Getting around:do-it program helps disabled teens overcome isolation. Retrieved from http://www.washington.edu/doit/Press/09.06.00.stimes.html

MassGeneral Hospital for Children. (2010). Disabilities. Retrieved from http://www.mgh.harvard.edu/children/adolescenthealth/articles/aa_disabilities.aspx

The Nemours Foundation (2010) states that because of the Individuals with Disabilities Act, updated in 2004, parents can be an important part of their child’s educational team and help develop and individualized education plan (IEP) if your child needs extra support. Children with disabilities, or developmental delays may qualify (The Nemours Foundation, 2010). An IEP allows the team to make goals for your child’s educational progression (The Nemours Foundation, 2010).

Section 504 is a part of the Rehabilitation Act of 1973. This Act prohibits discrimination based on disability (Durheim, 2010). According to section 504, public schools must meet the needs of disabled children as well as they meet the needs of nondisabled children (Durheim, 2010). If a child qualifies as disabled, then the school can put a 504 plan into place (National Resource Center of AD/HD, 2007). According to the National Resource Center of AD/HD (2007), some examples of 504 accommodations are:

1. Reducing the number of homework problems without reducing the level or content of what is being taught.

2. Giving the student a quiet place to work or a place without many distractions.

3. Providing clear and simple directions for homework and in-class assignments.

4. Giving tests in a quiet place and/or providing extra time.

5. Using tape recorders or giving the student a copy of notes.

6. Using behavior management techniques, including positive reinforcement.

7. Having a nurse or administrator oversee a student's medication.

8. Meeting with the school counselor.

9. Creating a notebook so that parents and teachers may keep each other informed of the child's progress or difficulties (para 12).

Durheim, M. (2010). A Parent's guide to section 504 in public schools. Retrieved from http://www.greatschools.org/LD/school-learning/section-504.gs?content=868

National Resource Center on AD/HD. (2007). Educational rights for children with ad/hd in public schools (wwk4). Retrieved from http://www.help4adhd.org/en/education/rights/WWK4

The Nemours Foundation. (2010). Kids health. Retrieved from http://kidshealth.org/parent/growth/learning/iep.html

Just found this page of links from the Utah Department of Health. Looks like there might be some good stuff http://health.utah.gov/able/otherresources/resourceslinks.html#transition

I have changed some settings that will hopefully make commenting easier! Hope this helps!

I was hoping we could open up some dialog! I don't mind if it's off topic for the week, if you have questions to put out there, or if you know of a great resource to share, let us know! In case some of you are new to blogging, there should be a link at the bottom of the post that says "post a comment" or something similar. If you click on this, you should be able to write a comment. You don't have to "follow" to do this, it should allow you to comment anonymously. If there are any technical glitches, or if you need additional help, feel free to email me at leebrjenifer@msn.com

Some children with special needs suffer from rages or night terrors, or both. These can be very confusing and frustrating for parents. Carlson (2007) states “But who are the children with severe mood dysregulation/rages? These explosive children are not new. A closer look at the traditional diagnoses that apply to this group of youth gives us further insight. Although there is no significant difference in the rates of ADHD between children with narrow phenotype bipolar disorder and those with severe mood dysregulation (60.6% and 86.7%, respectively), more than twice the number of children with severe mood dysregulation have oppositional defiant disorder (39.4% versus 83.3%)” (para 3). Rages can escalate quickly when a parent joins in the frustration. Share with us some of the ways you handle rages. Night terrors can be disturbing to watch in your child. He/she may have their eyes open, and screaming about what they are “seeing.” Familydoctor.org (2010) states, “Some children have a different kind of scary dream called a "night terror." In children, night terrors happen during deep sleep (usually between 1 a.m. and 3 a.m.). A child having a night terror will often wake up screaming. He or she may be sweating and breathing fast. Your child's pupils (the black center of the eye) may look larger than normal. At this point, your child may still be asleep, with open eyes. He or she will be confused and might not answer when you ask what's wrong. Your child may be difficult to wake. When your child wakes, he or she usually won't remember what happened. Children who have night terrors may also sleepwalk” (para 2).

If your child has rages or night terrors they can be a separate issue or part of another disorder. Rages and night terrors can also be comorbid with other disorders. It’s important to remember these symptoms when talking with your doctor.

Carlson, G.A. (2007). Who are the Children with severe mood dysregulation, a.k.a. "rages"?. Retrieved from http://ajp.psychiatryonline.org/cgi/content/full/164/8/1140

Familydoctor.org, . (2010). Nightmares and night terrors in children. Retrieved from http://familydoctor.org/online/famdocen/home/children/parents/common/common/566.html

Taking it one day at a time!

Often times a demon we parents of children with special needs face is the foreboding future. Our child’s whole life seems continually before us in a way that just isn’t the same with our children who are developing normally. We torment ourselves with the idea that what we do today will mean everything for him or her at age 25. And in some ways we are right. The continuity of treatment is vitally important. But lets give ourselves permission to take it one day at a time. We can get through today. And then through another today, and another. If that’s still too much, we can get through this hour, this dinner time, this doctor appointment. We can handle what is happening right now in the way we want to.

An article on the Eduguide website at http://www.eduguide.org/Parents-Library/Kids-Learning-Disabilities-ADHD-1123.aspx titled Advice for Dealing with Kid’s Learning Disabilities: ADHD by Betty Walter advises, “The diagnostic and treatment process take a lot of time. Steps in the process often can get confusing and out of order. Just when one problem is solved, a new one appears. Take one day at a time, and enjoy your child.”

Raising-Special-kids.com at http://www.raising-special-kids.com/Ten_Commandments_For_Parents.html lists the Ten Commandments for Parents of Children with Disabilities, author unknown. It’s all great advice,

1. Take one day at a time, and take that day positively. You don't have control over the future, but you do have control over today.

2. Never underestimate your child's potential. Allow him, encourage him, expect him to develop to the best of his abilities.

3. Find and allow positive mentors: parents and professionals who can share with you their experience, advice, and support.

4. Provide and be involved with the most appropriate educational and learning environments for your child from infancy on.

5. Keep in mind the feelings and needs of your spouse and your other children. Remind them that this child does not get more of your love just because he gets more of your time.

6. Answer only to your conscience: then you'll be able to answer to your child. You need not justify your actions to your friends or the public.

7. Be honest with your feelings. You can't be a super-parent 24 hours a day. Allow yourself jealousy, anger, pity, frustration, and depression in small amounts whenever necessary.

8. Be kind to yourself. Don't focus continually on what needs to be done. Remember to look at what you have accomplished.

9. Stop and smell the roses. Take advantage of the fact that you have gained a special appreciation for the little miracles in life that others take for granted.

10. Keep and use a sense of humor. Cracking up with laughter can keep you from cracking up from stress.

Everyone is welcome to comment on ways they take it one day at a time!

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Welcome to the "Parenting children with special needs" blogspot! This is where I will post weekly articles about topics you care about! I look forward to your comments and participation!