Parenting a Child with Turner Syndrome (Ben Kwan)

1)  How does it feel to be the parent of your child?

My daughter, Caylee, was born with Turner Syndrome. Turner Syndrome exclusively affects females because it is a chromosomal condition in which one of the two X chromosomes is either missing or incomplete. This condition occurs in about 1 in 2000 female births making it one of the most common chromosomal abnormalities. I love my child to death and she has taught me so much by simply being herself. Although most kids in her fifth grade classroom treat her just like any other kid, there are times in which some other kids make fun of her height. Whenever she comes home and tells me about such incidences, it breaks my heart. I frequently meet with her teacher to talk about these issues as well as other issues pertaining to her education. I am proud of all that she has achieved. As she grows older, there will more things she will have to overcome, but I know that it will be possible because of all the strength I have seen in her and all the support that I am giving her.

2)  How is your child developmentally the same or different from other children at the various ages?

Caylee has always been shorter than the other students in her class. This is because one of the characteristics of Turner Syndrome is short stature. This can actually be changed though as she is currently undergoing growth hormone treatments. These treatments will allow her to achieve adult height within the lower range of normal. If left untreated, Caylee’s height may fall somewhere between four feet eight inches and five feet.

Another issue that Caylee faces is the lack of sexual maturation during adolescence. Menstruation and breast and ovary development may be affected. Girls affected with Turner Syndrome have a high chance of experiencing early ovarian failure which will prevent her from developing those secondary sexual characteristics. This can be prevented with estrogen replacement therapy allowing her to develop normally, but it is likely that she will require estrogen from puberty until she reaches menopause.

In addition, hearing loss is common among those affected by Turner Syndrome, so she has been struggling with that as well although we are told that her hearing loss is not as severe others. Caylee’s vision seems to be fine, but eye conditions can be common so we have her eyes checked very often so that if we detect any problems, we can treat it right away.

As for Caylee’s cognitive development, her IQ scores tends to be in the average range. She may have problems with spatial temporal processing, nonverbal memory, and attention due to the Turner Syndrome. This causes her to have some problems with math, sense of direction, manual dexterity, and social skills. But overall, she does fairly well in school and typically has no problems getting along with her classmates. Her best friend, Mira, enjoys helping Caylee out whenever possible, so it’s great knowing that she has support coming from somebody her own age.

3) What professionals/agencies do you deal with?  What services are available to you and your child?

One of the primary agencies we deal with is the Turner Syndrome Society of the United States. Their goal is to raise awareness, promote research, and provide support to families affected by this chromosomal condition. This organization has been very helpful in providing us with the latest news about this condition and I feel that I would be lost without them. They have many peer volunteers who are able to answer any questions we may have about Turner Syndrome. They are also very useful in learning about dealing with specific topics like hormone replacement therapy. One of the best things about the Turner Syndrome Society of the United States is that they have national chapters and support groups available creating a network of friends, families, doctors, and supporters. Through these support groups, we have met many families who have had to go through the same things we have so it has been nice hearing their stories and knowing that we will get through it.

The Magic Foundation has also been another very helpful organization. The focus of this organization is to highlight disorders that affect a child’s normal growth. Although they do not specifically specialize in Turner Syndrome, they do provide much support for families affected by different types of disorders. They have been an invaluable resource for the different types of treatment options that are out there for Caylee.

There are a variety of people that we get assistance from at her school in an effort to make her educational experience the best as possible. The school nurse, physical therapist, and an adapted physical education teacher all work together to meet Caylee’s needs. Also, we’ve had to consult the school psychologist a few times because of Caylee’s social and emotional difficulties.

4)  How did you find out about the above services?

When I first learned that Caylee was diagnosed with Turner Syndrome, the doctors at the hospital were extremely helpful in providing us with the right referrals and resources. The internet was also a very powerful resource which led us to find the above services. Through networking with other families who have been affected by Turner Syndrome, we were able to learn about all the different resources available and the help that can be provided by the schools.

5)  What financial burden, if any, are you experiencing?

Money has been a big issue, and I predict that it will be an even bigger burden in the future. Providing my daughter with the growth hormone treatments to allow her to grow a normal height will be costly. The injections of the growth hormone occurs daily and the cost comes to anywhere between $10,000 and $30,000 per year. Caylee has not yet reached the age of puberty yet so she hasn’t had to start estrogen replacement therapy but when it does begin, it may cost somewhere between $10 and $85 per month, and that is something that Caylee will have to do until she reaches menopause. Our insurance will hopefully cover most of costs, but I have already had some problems with them and even hired an attorney to fight for the right of providing my daughter with what she needs to live a healthy life.

6)  What other information do you want to share?

My whole world revolves around Caylee, and I am always trying to provide her with the best of everything. By giving her all the necessary treatments, there’s no reason she wouldn’t be able to grow up and lead a happy and productive life. Although our family has had our ups and downs, I must say that even our downs can be considered blessings compared to the many other families who have been harder hit with Turner Syndrome. The effects of Turner Syndrome vary greatly from individual to individual. Some may have more severe hearing and vision problems. Heart, thyroid, and kidney problems may occur in some children while others do not have that problem at all. We must carefully monitor Caylee’s health to make sure that nothing sneaks up on us and that she will continue to be the happy and carefree kid that she deserves to be.

Ben Kwan's Glogster Link for Turner Syndrome

Parenting a Child With a Traumatic Brain Injury (Jessica Williams)

1. How does it feel to be the parent of your child?

Riley was like every other normal child, until one day that changed not only her life, but also the entire family’s. On August 5, 2008 Riley and her brother were riding their bikes. We lived on a quiet street with very little traffic. As Riley and her brother crossed the street to meet their friends a car came speeding up the street. Matthew, our son, made it across the street, but my daughter didn’t. The car struck her. I ran to my daughter, but I couldn’t help her. All I could do was pray and cry.

Every limb was broken; she had a fractured skull and internal injuries, but the most damaging and long lasting injury was the traumatic brain injury she suffered. Riley has gone through 24 months of surgeries with more years to come. She has had 8 surgeries to close the head wound. It took months and months for Riley to learn to walk again. The hospital has become our second home.

Since the accident life hasn’t always been easy. Riley can get temperamental and moody, which makes it very difficult to deal with her sometimes. The hardest part has been watching her go through surgery after surgery. I have felt helpless and wished there was more I could do for her.

2. How is your child developmentally the same or different from other children at the various ages?
The physical difficulties my daughter has gone through are minimal in comparison to the developmental issues she has had to deal with. My daughter cannot sit still for long periods of time because of her attention problems. She can sometimes get moody and have anxiety problems. Her biggest obstacle is that her short-term memory was damaged. Therefore, Riley has problems remembering everything she has been told, especially if she is given a long list of things to do. Riley walks, talks, and loves playing with friends just like other girls her age. She is very much like other children her age; it sometimes just takes a little bit of patience.

3. What professionals/agencies do you deal with? What services are available to you and your child? How did you find out about the above services?
After Riley’s accident the doctor suggested that we get in touch with The Brain Injury Association of America. They told us what to expect after her accident. Through research I found out about www.brainline.org. This website helped me to network with other parents who were going through what I was going through. This website also had great resources on ways to help Riley overcome some of the obstacles in her way. When Riley started school I set up a meeting with the principal and her teacher. We all set up an IEP for her, and I work directly with her teacher to help Riley succeed.

4. What financial burden, if any, are you experiencing?
The financial burden our family is going through has been tough. My daughter has accumulated over $3 million dollars worth of medical bills. She is continuing to have to go through surgeries, so the amount is continuing to rise. Thankfully we had insurance, and our church and community joined together to help alleviate some of the cost our insurance didn’t.

5. What other information do you want to share?
I would like people to know that “1.7 million TBIs occurring each year in the United States” It can happen to anyone at any age. People with Traumatic brain injuries do not look any different then anyone else. Many people with traumatic brain injuries can do what others can, some just need some modifications to help them do it.


A Link to my Glog: http://luckytpk.edu.glogster.com/Glog-5963/

I based part of my "daughter's" recovery story off of a real girls story. Her name is Summer Moll and here is a little more information on her if you are interested: http://www.myfoxtampabay.com/dpp/news/local/hillsborough/505-another-surgery-for-summer-moll

Parenting an Autistic Child

a. How does it feel to be the parent of your child?
With my son, Joshua Hoa (8 years old), I am faced with challenges nearly every day. As a parent, I am constantly on my toes, 24/7. For instance, I have to be aware of where he is at and what he is doing. Joshua is very friendly; however, he can also be very compulsive at times (i.e. emotional, moody). In public, I have learned to become thick-skinned because it is sad and annoying when other people stare at my child. Having Joshua has changed my life. For example, I have realized what I have taken for granted with my child, such as holding his hand.

b. How is your child developmentally the same or different from other children at the various ages?
With regards to physical development, Joshua is at the same level with other children at his age. He loves to play sports, especially baseball and basketball. He can throw the ball just as far as some of the other kids. However, it is Joshua's mental and social development that is different from his peers. His biggest problem is that he has difficulty interacting with other children at his age because of his lack of social skills. His speech and language are delayed which make it difficult to comprehend what he is saying at times. In addition, Joshua also has some sensory issues, such as moving his hands through shaving cream, which makes him feel calmer.

c. What professionals/agencies do you deal with? What services are available to you and your child?
I deal with social services, which has offered many options for Joshua. Regional Center of Orange County, a nonprofit organization that supports individuals with developmental disabilities, is also available to our family. RCOC had to first observe and test my son in which Joshua was eventually diagnosed with autism at the age 4. In addition, we also deal with private speech and language services, special day classes and different doctors, who prescribe him medicine. Joshua was in a day care program for a while, but it then became a huge problem.

d. How did you find out about the above services?
Joshua's preschool teacher had first identified that something was wrong with my son. So she recommended that I take him to the regional center to be tested. There, I found out about community workshops, seminars, online resources and the above services regarding autism.

e. What financial burden, if any, are you experiencing?
I am definitely experiencing a financial burden. I have spent a whole lot on expenses and bills; and I must say that it does help to have money. I had to hire lawyers for Joshua's behavior treatment, play therapy and music therapy. Moreover, his medications cost a lot too. Later on, I figured that it would be less expensive to have him play sports, which he enjoys very much.

f. What other information do you want to share?
I want people to be aware that having an autistic child can be hard on marriages. It is important to understand how different it makes everything, and that it can tear you apart. I am frequently tired because I have to teach him and play with him constantly. Also, when Joshua was diagnosed, my wife and I had opposing views in supporting him, but we eventually developed strategies for taking care of him. I have spoken to others who have a child with autism, and a high percentage of them are now divorced.
Sometimes you just want someone to tell you what to do, but the fact of the matter is that no one can really do that. As Joshua's father, I have benefited from several services, but I have learned more about Joshua just by being with him. For instance, I have learned to keep up with his routines, which is very important. On Sundays, he has developed a routine where he needs his hot dog and a candy bar after.

My Glogster link:
http://samejames2188.glogster.com/Autism/?

Parenting an exceptional child who is deaf - April Young

How does it feel to be the parent of your child?

Amazing. Johnny is a brilliant boy. Yes, there are challenges to being a parent, and there are times when I wonder if I could just lock him in his room for an hour while I recuperate from whatever shenanigans he has planned for the day (yesterday it was duct taping his little brother to the wall). I have had to put up a lot of fights at the school and in the community to get Johnny the extra assistance and support he needs. Classrooms, lunchrooms, movie theaters and such are not always designed with the deaf or hard of hearing in mind. It has been a struggle for our family to offer Johnny a similar lifestyle to his brothers, friends, and neighbors.


How is your child developmentally the same or different from other children at the various ages?

Although Johnny's deafness has been a challenge to his growth and development as a human being, we don't treat him any different than his hearing siblings. Johnny is held to the same academic standards and moral obligations as his brothers, and he is required to invest the same amount of energy into household chores and participation in after school activities. He is reading and writing at a lower level than many of his classmates, but that seems to be typical of a student that is deaf or hard of hearing. We don't want his condition to define what he can and can't do, so he invests more time than many of his peers in learning material and completing assignments. Johnny is of average height and weight compared with his same aged peers, and he has unusually good balance for a person who is deaf. He is even to play on the same baseball team as his older brother!


What professionals/agencies do you deal with? What services are available to you and your child?

Every year Johnny's father and I meet with teachers and counselors for his IEP. This is always a time of turmoil, as the school is not fully equipped to meet all of Johnny's needs, and I am not willing to let him stand on the sidelines and watch his classmates thrive while he falls behind. We have a tutor that has a background in working with children who are deaf and hard of hearing, but this only helps him to retain prior knowledge; it does not fill in the gap between what he gets out of school compared to his classmates. Medically speaking, Johnny sees an audiologist/ear, nose, and throat doctor as needed. Because he is a child and still growing he needs to continually be measured for new hearing aids. He loves his doctor, and doesn't mind giving up some after-school playtime to see her.


How did you find out about the above services?

When Johnny failed his newborn hearing screening test, the doctors and nurses at the hospital were great in providing us with pamphlets and newsletters full of references. Living in a small town and not having to have deal with deafness in a newborn, they were not very well versed in answering my and my husband's questions. However, we were able use the resources they gave as a starting point, and we found a great audiologist that worked with newborns and children. She put us in touch with the important people we would need to talk to when Johnny started school, and the rest is history.

What financial burden, if any, are you experiencing?

Fortunately for us, we have a great medical plan through my husband's employer. We have been very lucky to only have a minimal copay for each doctors visit and hearing device that has been purchased over the years. Our school PTA has been very helpful in using some of the funds they raise to improve the classroom acoustics, and we chose to purchase a wireless microphone headset for use between Johnny and his teacher in the classroom.

What other information do you want to share?

I just want to let other parents of children who are deaf or hard of hearing out there know that there is light at the end of the tunnel. When we first found out about Johnny, it was hard. All we could think about was all of the ways that his life would be limited by his inability to hear. In time, we learned that Johnny had all of the same needs and requirements as any other child. Yes, we do have to make accommodations to meet the specific demands of his limited communication, but it is worth it. The help and support is out there, you just have to use it. Be an advocate for your child, stand up for child, and teach them how to stand up for themselves. Most importantly, don't treat your child as a victim. They can and will thrive in a society that does not cater to the hearing impaired if you only teach them how.

Link to glogster: http://aprilsauce.glogster.com/deafness/

Parenting a Child with a Behavior Disorder--Written By: Kimberly Morrow

a) How does it feel to be the parent of your child?

My son, Ryan, is 10 years old, and he means everything to me. When Ryan was 5 years old, he was diagnosed with Oppositional Defiant Disorder, or O.D.D. This disorder is one of the most common behavior disorders affecting children today. One of your first questions might be, “What is O.D.D.?” Well, children with O.D.D. have an ongoing pattern (for more than 6 months) of disobedient, hostile and defiant behavior toward authority figures, which goes beyond the bounds of normal childhood behavior. O.D.D. behavior peaks at around age 10, and could affect the rest of the child’s life if the child is not treated. If children with O.D.D. are not treated, they will most likely develop Conduct Disorder (C.D.)--a more severe disorder. Children or teens with C.D. not only inflict harm on other people, but they are at a higher risk of incarceration, dropping out of school, etc. In any case, the most common signs of O.D.D. include the following behaviors: temper tantrums, stealing, bullying, blaming others, and vandalism. Children with O.D.D. may also be defiant and easily annoyed.

As a result of his O.D.D., Ryan suffers from Depression--a common symptom that usually goes hand-in-hand with O.D.D. When he is not acting out or being defiant, he is very quiet and depressed. This, too, makes me feel sad because I want to understand what’s going on in his head and just take his troubles away.

As an advocate for my child, I feel like I have to be very vocal and assertive with the people dealing directly with Ryan (i.e. the staff at his elementary school, his after-school program teachers, etc). On one hand, being Ryan's mom is very draining--emotionally, physically, and mentally. Why? Because he is very hostile, defiant, and violent with me on a daily basis. It is safe to say that I worry about his every move. Every day seems to be a struggle, and I have to remember that Ryan's outbursts are because of his disorder and are not a result of anything else.

It’s very frustrating to think Ryan is always labeled as the “bad kid.” It breaks my heart to think Ryan is stereotyped and labeled. Although he has a difficult disorder to deal with, Ryan is a great kid. Every day is not always a good day, but there’s always something good in every day.

b) How is your child developmentally the same or different from other children at the various ages?

Physically, Ryan looks like an average 10 year-old. Mentally, with his outbursts, people probably think he is younger. Academically, Ryan is a little behind. Due to his O.D.D. and depression, Ryan missed a lot of school last year, so he has to repeat the 4th grade. He is sad that he is not starting 5th grade with his peers this year…and that breaks my heart, too. Nevertheless, Ryan is a smart kid. With the right resources and help, I know he is capable of catching up with his peers.

c) What professionals/agencies do you deal with? What services are available to you and your child?

Twice a week, Ryan goes to a therapist who specializes in treating children with behavior disorders. Our family also goes to a family therapy session with the same therapist once a week. In addition, Ryan attends cognitive problem solving and social skills trainings at the Center for Healthier Children, Families, and Communities at UCLA. My husband and I also attend parent trainings at the Center for Healthier Children, Families, and Communities at UCLA as well.

Furthermore, due to his O.D.D./behavior disorder, Ryan is pulled out of his mainstream classroom for a majority of the school day in order to receive services from his RSP teacher. While he is with his RSP teacher, he receives one-on-one assistance with his school work. In general, the teachers and staff at Ryan’s elementary school are extremely supportive and supply Ryan with the best services possible.

d) How did you find out about the above services?

Our family found out about the above resources from Ryan’s pediatrician, Dr. Morrow. She has sent a number of her patients to our therapist and to the Center for Healthier Children, Families, and Communities at UCLA. Our family couldn’t be more thankful for Dr. Morrow’s help!

e) What financial burden, if any, are you experiencing?

Without a doubt, the weekly therapy sessions for both Ryan and our family have caused a huge financial burden. Each hour-long session (twice a week) for Ryan costs us $75, and each hour-long family session (once a week) cost us $100. In addition, our family has to pay for Ryan’s anti-depressant medication each month. Even though we have health insurance for him, we still have to pay about $30-40 per month for his medications. We also have to make the hour-long drive to UCLA for either training sessions for Ryan or for my husband and I. Although it seems like my husband and I don’t have to pay a lot of money each month for Ryan’s treatment, every dollar adds up these days.

f) What other information do you want to share?

First off, if a parent has a child with O.D.D., I suggest they do the following: 1) recognize and praise their child’s positive behaviors, 2) model the behavior they want their child to have, 3) pick their battles and avoid power struggles, 4) set limits for their child, 5) set up a routine for their child, 6) make time throughout the week to spend quality time with their child, 7) work with their partner to ensure consistent and appropriate discipline with their child, and 8) assign their child appropriate household chore’s that build up their confidence and skills.

Secondly, I want parents to know they’re not alone. There are tons to resources for parents who have children with behavior disorders! Seek help, advice, and tips to make your life, your child’s life, and your family’s life easier.

Third, I want people to know O.D.D. or any other behavior disorder/disability should not label kids. Although Ryan has outbursts and tantrums, he is a sweet and loving kid. I just hate that Ryan is known as “the bad kid.” People should know that he can’t control his outbursts alone. He has come a long way with the help of his weekly therapy sessions and monthly trainings at the Center for Healthier Children, Families, and Communities at UCLA. Words can’t fully express how much Ryan means to me. He is definitely the light of my life--behavior disorder and all. I just love him so much…

Resources for parents and teachers:

Websites:
http://www.mayoclinic.com/health/oppositional-defiant-disorder/DS00630

http://behaviordisorder.org/index.html

http://www.healthcare.uiowa.edu/cdd/multiple/rl/RL_behavdisorder.asp

http://www.nlm.nih.gov/medlineplus/childbehaviordisorders.html

http://www.as.wvu.edu/~scidis/behavior.html

http://www.ccbd.net/content.cfm?categoryID=1E59BF1A-3048-2906-B49FF9FDAFD544A3

My Glogster about children with behavior disorders:
http://kimmyanne.edu.glogster.com/edel-430-exceptional-child/

Parenting a child with asthma (By: Drina Val Verde)

Interviewer (I): Tell me a little about your child and his/her exception.
Parent (P): My son's name is Ethan. He is 10 years old and has a passion for sports. He is an amazing athlete and thrives on friendly competition. However, his love for sports and outdoor activities is somewhat limited because he has asthma. He is one of roughly 9 million children in the U.S. that are affected by the chronic disease. There are several triggers that are mostly found in the outdoor environment that can cause Ethan's airways to tighten and inflame which makes it difficult for him to breath. It is important to always be aware of the triggers like weather, pollution, pollen, animals, second-hand smoke, and cold/flu symptoms.

I: How does it feel to be the parent of your child?
P: I love Ethan unconditionally but I worry about him. I worry the most when he is playing sports. I enjoy watching him play but I can not help but think and wonder, is he coming to have a flare up or an asthma attack? Now that he is older, it has gotten easier and he can control his asthma well but as a mother I can not help but worry. I am always reminding myself that playing sports is good for him because it helps his lungs become stronger and work better.

I: How is your child developmentally the same or different from other children at the various ages?
P: Ethan is developmentally the same as other children. He is in an asthma- friendly school that knows all the details about his condition and about his medication. His teacher has reduced triggers in the classroom so it is unlikely that he will have an attack and miss class.

I: What professionals/ agencies do you deal with? What services are available to you and your child?
P: We have health insurance through Medicaid which covers the majority of Ethan's medications, supplies, and hospital and doctor visits. Ethan also sees doctor who has special interest in asthma. Aside from those, we often utilize numerous online resources. MedLine Plus's web page offers links to several websites that are for children with asthma. When Ethan has a question or concern, we visit these links because it breaks it down in terms he understands.

I: How did you find out about the above services?
P: When we first discovered that Ethan had asthma, the doctor recommended insurance companies and my husband and I did our own research as well. The internet has been an enormous help in finding resources also.

I: What financial burden, if any, are you experiencing?
P: Fortunately our health insurance covers the majority of the costs we have for Ethan's asthma. However, I know that there are families that pay roughly $4,000 on care a year! There are also ways to reduce costs. Now that Ethan is older and able to control his asthma, his symptoms are reduced which in turn reduces his need for medications and doctor visits.

I: What other information do you want to share?
P: I want to let other parents who have children with asthma know that it is possible for them to live a normal life. Education is key. Once you get informed and educated on asthma there are ways to control asthma and several things you can do to reduce asthma triggers for your child. Talk to your child about it and have an emergency action plan so everyone knows what to do when/if an asthma attack occurs. Take the time to find an asthma-friendly school who has trained staff and teachers. Also, do the research and find resources that can best help your child and always do what ever you can to reduce all triggers at home.

Glogster link:  http://valverdedrina.edu.glogster.com/asthma-drina-val-verde/

Dealing with Dyslexia: Kellie Rahe

1. Give your child a name and research the characteristics of the disability.

My daughter's name is Millicent and her name means “brave strength”. Millicent was diagnosed with Dyslexia at the age of eight after years of frustration in school. We are thankful that there are many resources available to help Millicent succeed in life!


Definition of Dyslexia:

Dyslexia is an impairment in your brain's ability to translate written images received from your eyes into meaningful language. Dyslexia is also known as specific reading disability. Dyslexia is the most common learning disability in children. According to the Dyslexia Research Institute 10 to 15% of the US population has dyslexia, yet only 5% of them are ever properly diagnosed and given appropriate help.

Dyslexia usually occurs in children with normal vision and normal intelligence. Children with dyslexia usually have normal speech, but may have difficulty interpreting spoken language and writing. Children with dyslexia need individualized tutoring, and treatment for dyslexia often involves a multisensory education program. Emotional support of your child on your part also plays an important role.

Symptoms:

Dyslexia symptoms can be difficult to recognize before your child enters school, but some early clues may indicate a problem. Once your child reaches school age, your child's teacher may be first to notice a problem.


Before school:

Signs and symptoms that a young child may be at risk of dyslexia include:
• Late talking
• Adding new words slowly
• Difficulty rhyming

School age:

Once your child is in school, dyslexia symptoms may become more apparent, including:
• Reading at a level well below the expected level for the age of your child
• Problems processing and understanding what he or she hears
• Difficulty comprehending rapid instructions
• Trouble following more than one command at a time
• Problems remembering the sequence of things
• Difficulty seeing (and occasionally hearing) similarities and differences in letters and words
• An inability to sound out the pronunciation of an unfamiliar word
• Seeing letters or words in reverse (b for d or saw for was) — although seeing words or letters in reverse is common for children younger than 8 who don't have dyslexia, children with dyslexia will continue to see reversals past that age
• Difficulty spelling
• Trouble learning a foreign language

a. How does it feel to be the parent of your child?

Being a parent to Millicent is frustrating and challenging. As parent I feel helpless and guilty that she has so much trouble learning in school. As a toddler, she would throw temper tantrums because she couldn’t communicate what she exactly wanted. Millicent was a late talker and worked well with family routines. Getting her ready in the mornings was hard for me to understand what would set her off. I cannot control everything that happens in the morning nor have the time to be patient because I had to get her ready for school and myself ready for work. At times she could be very stubborn and strong willed wanting to wear a particular outfit and unable to tell me, which outfit it was. I feel her frustration when she reads and writes. I try to help her with homework as soon as I get home. When I ask her about school she doesn’t seem to have any interest other than friends. She doesn’t talk about school subjects other then recess and lunch time. Millicent enjoys being read too by her father and me. She doesn’t like to read aloud at school or to us. I want Millicent to be happy and not fear she is stupid or dumb. So I try to provide a safe environment at home for her to practice reading in front of her father and myself. Millicent loves playing soccer. She benefits from being involved in a sport. She is friendly and outgoing on the soccer field. I can see the difference between her behavior and attitude between school and soccer. I know that her reading disability is going to be a life long struggle and cannot be treated and simply fixed. Her father and I are trying to provide motivation and stress outlets for her. We want her to be successful in school and are willing to try anything to help her with the fear, anxiety and stress reading causes her.

b. How is your child developmentally the same or different from other children at the various ages?

Millicent’s IQ is higher compared to the other children of her age. However, her reading and comprehension levels are below due to her problems processing instructions. She is very active and enjoys being outside, so physically she tends to be higher developmentally then most classmates. Millicent is emotionally different from other children at her age because she keeps her fear and anxiety to herself. Millicent is quiet in new situations and outgoing among friends.

This list is divided into more behaviors typical of children diagnosed with Dyslexia:

General Characteristics:

• Appears bright, highly intelligent, and articulate but unable to read, write, or spell at grade level.
• Labeled lazy, dumb, careless, immature, "not trying hard enough," or "behavior problem."
• Is not "behind enough" or "bad enough" to be helped in the school setting.
• High in IQ, yet may not test well academically; tests well orally, but not written.
• Feels dumb; has poor self-esteem; hides or covers up weaknesses with ingenious compensatory strategies; easily frustrated and emotional about school reading or testing.
• Talented in art, drama, music, sports, mechanics, story-telling, sales, business, designing, building, or engineering.
• Seems to "Zone out" or daydream often; gets lost easily or loses track of time.
• Difficulty sustaining attention; seems "hyper" or "daydreamer."
• Learns best through hands-on experience, demonstrations, experimentation, observation, and visual aids.

Vision, Reading, and Spelling:

• Complains of dizziness, headaches or stomach aches while reading.
• Confused by letters, numbers, words, sequences, or verbal explanations.
• Reading or writing shows repetitions, additions, transpositions, omissions, substitutions, and reversals in letters, numbers and/or words.
• Complains of feeling or seeing non-existent movement while reading, writing, or copying.
• Seems to have difficulty with vision, yet eye exams don't reveal a problem.
• Extremely keen sighted and observant, or lacks depth perception and peripheral vision.
• Reads and rereads with little comprehension.
• Spells phonetically and inconsistently.

Hearing and Speech:

• Has extended hearing; hears things not said or apparent to others; easily distracted by sounds.
• Difficulty putting thoughts into words; speaks in halting phrases; leaves sentences incomplete; stutters under stress; mispronounces long words, or transposes phrases, words, and syllables when speaking.

Writing and Motor Skills:

• Trouble with writing or copying; pencil grip is unusual; handwriting varies or is illegible.
• Clumsy, uncoordinated, poor at ball or team sports; difficulties with fine and/or gross motor skills and tasks; prone to motion-sickness.
• Can be ambidextrous, and often confuses left/right, over/under.

Math and Time Management:

• Has difficulty telling time, managing time, learning sequenced information or tasks, or being on time.
• Computing math shows dependence on finger counting and other tricks; knows answers, but can't do it on paper.
• Can count, but has difficulty counting objects and dealing with money.
• Can do arithmetic, but fails word problems; cannot grasp algebra or higher math.

Memory and Cognition:

• Excellent long-term memory for experiences, locations, and faces.
• Poor memory for sequences, facts and information that has not been experienced.
• Thinks primarily with images and feeling, not sounds or words (little internal dialogue).

Behavior, Health, Development and Personality:

• Extremely disorderly or compulsively orderly.
• Can be class clown, trouble-maker, or too quiet.
• Had unusually early or late developmental stages (talking, crawling, walking, tying shoes).
• Prone to ear infections; sensitive to foods, additives, and chemical products.
• Can be an extra deep or light sleeper; bedwetting beyond appropriate age.
• Unusually high or low tolerance for pain.
• Strong sense of justice; emotionally sensitive; strives for perfection.
• Mistakes and symptoms increase dramatically with confusion, time pressure, emotional stress, or poor health.

c. What professionals/agencies do you deal with? What services are available to you and your child?

Private services can be obtained and contacted through one of these agencies:

National Center for Learning Disabilities
http://ncld.org/
Learning Disabilities Association for California
http://www.ldaca.org/
Orange County Learning Disabilities Association (Santa Ana)
http://www.oclda.org/
Orange Country Branch of the International Dyslexia Association (Santa Ana)
http://dyslexiamylife.org/dyslexia_resources.html
Recording for the Blind and Dyslexic: Inland Empire –Orange County Unit Orange County (Santa Ana)
http://www.rfbd.org/

d. How did you find out about the above services?

The learning disability testing process usually begins when a child has problems with academics or behavior in school. In most cases, a parent's first encounter with special education happens when a child is not progressing, and a learning disability is suspected. Typically, parents notice early signs of a learning disability and contact the school for assistance.

Initially, teachers may meet with the parent and decide to try interventions before referring a child for learning disability testing. If the parent and educators suspect a disability, they begin the testing process. Testing is necessary for children suspected of having a learning disability since:

• Learning disability testing is required by federal and state regulations to determine eligibility for special education
• Learning disability testing provides important information about the child's suspected disability
• If the child qualifies, learning disability testing provides specific data for use in developing an Individual Education Program (IEP).
Learning disability testing is a complex processes of gathering information in all areas related to a student's suspected learning disability. Current federal regulations require that no more than sixty days should elapse from the time a student is referred for learning disability testing until the time the IEP is developed. To a parent, those sixty days of waiting for learning disability testing can seem like an eternity.

What goes on during that time period? Depending on the area of disability and the unique questions surrounding each child, the learning disability testing may include:

• Review of educational records
• Observations
• Review of student work
• Medical, vision, and hearing and audiological examination
• Developmental and Social History
• Fine and Gross Motor Evaluation
• Adaptive Behavior
• Speech and Language Assessment
• Intellectual Ability or "IQ" tests
• Assessment of Academic Skills
• Social and Emotional Testing
• Behavioral Testing
• Psychiatric Testing

Testing may be provided by a variety of professionals as needed by the IEP team:

• Teachers
• Educational Diagnosticians
• School Psychologists
• Speech Pathologists
• Medical Professionals
• Occupational and Physical Therapists
• Counselors

e. What financial burden, if any, are you experiencing?

When Millicent was retested for services her test scores were greatly improved, was less than a year behind grade level in reading and my evaluation test scores were within in two standard deviations to qualify for services. We then had to have her tested by a private psychologist who specialized in children disabilities. His evaluation determined that although Millicent’s test scores were basically the same formats, but showed significant learning processing problems and recommended seeking 504 accommodations under the American Disabilities Act. This private testing fee was five hundred dollars. Tutoring, learning services and workshops for Team of Advocates for Special Kids are additional costs we as parents had to become educated in order to help Millicent keep her 504 accommodations.

f. What other information do you want to share?

Associations:

International Dyslexia Association is an international, non-profit, scientific and educational organization dedicated to the study and treatment of dyslexia. The IDA was first established nearly 50 years ago to continue the pioneering work of Dr. Samuel T. Orton, who was one the first to identify dyslexia and its remediation.

Recording for the Blind and Dyslexic is a nonprofit volunteer organization, is the nation's educational library serving people who cannot effectively read standard print because of visual impairment, dyslexia, or other physical disability. Our mission is to create opportunities for individual success by providing, and promoting the effective use of, accessible educational materials. 'Amy has signed up for Talking Books program through the national Recording for the Blind and Dyslexic (which will get any book for the student, even if they have to record it, but charges a small fee).

Programs:

Go Phonics is teacher-developed, based/compatible, explicit and systematic multisensory phonics curriculum with K-2 language arts. It features 6 volumes of stories that are 93% decodable with controlled vocabulary. They are designed for teaching beginning reading skills. They follow a phonics building block sequence that minimizes confusion. As skills are taught, they are linked to and embedded in meaningful reading. Integrated tools include word charts... This approach is effective for struggling beginning readers, Response to Intervention (RtI), dyslexia, LLD, and is a comprehensive foundation for ALL beginning readers.
Spark Island CD-ROMs program is an excellent tool to assist in some of phonological awareness difficulties as they teach phonic rules in a game-like multi-sensory way.

Reading A-Z is a low cost downloadable material to teach guided reading, phonics, phonemic awareness, fluency, and comprehension. 'Reading AZ is affordable and the material is excellent.

Newsletter:

“First News” - a newspaper for dyslexic children started by Actor Henry Winkler campaigns to help others with dyslexia and tells his own success story to inspire them, with motivational school tours to promote his books and First News, a UK newspaper written for and by children. First News is a weekly national newspaper aimed at children aged 7-14. It is published every Friday and delivers all the important stories in an easy and digestible format, in a voice aimed at inquisitive children – the very children who in turn will grow up to be the country’s great communicators.

Books for Children with Dyslexia:

Dyslexia Wonders is written by 12-year-old Jennifer Smith, Dyslexia Wonders reveals the daily struggles of a child plagued by dyslexia. Happy-go-lucky until she entered Kindergarten, Jennifer seemed like the other bright children her age. She was energetic, curious and talkative. But when it came time to learn the ABCs, to read or to tie her shoes, Jennifer couldn’t comprehend and her world began to slowly collapse. As time passed, it became clear to her that she was indeed different from her classmates. She felt alone, afraid and stupid; but most of all, she was ashamed of herself for not being able to learn.

The Alphabet War: a Story about Dyslexia is a story book for children about Adam, a young dyslexic boy learning to read. Adam represents the creative, talented and imaginative spirit in all of us and the author expertly describes Adam's frustration and near defeat as he learns to overcome his shortcomings with the help of his mother and tutor. It’s impossible not to cheer him on as he learns to stop pretending and feeling behind and breaks the "code" to win the war against words. The confidence he gains in himself is emphasized by the colorful, life-like illustrations.

Porkie Pies and Big Fat Sausages is about Tracy Warren, a foster mum who works in Leven as a social work assistant, has been snapped up by publishing firm Nightingales. Aimed at eight to 12 year-olds, Porkie Pies and Big Fat Sausages tells the story of Charli from London who moves to Scotland. Tracy starts a new life at a new school where fellow pupils find out she's dyslexic and start bullying her, which isn't uncommon.

Books for Parents:

How to Teach your Dyslexic Child to Read by Bernice H. Baumer. Both parents and teachers can learn how to structure lessons in order to connect with a dyslexic child. This book uses accessible terms along with charts, graphics, and lesson plans. It is broken down into three functional sections: a discussion of learning disabilities; an explanation of how to teach the dyslexic to read, step by step from kindergarten through the first, second and third grades (giving detailed instructions for teaching phonics, spelling, and syllabication); and a section devoted to pictures, charts, and word lists that are an integral part of tutoring the child.)

Dyslexia - a Complete Guide for Parents is a book for parents with a dyslexic child have only had professional references to turn to for much–needed advice–until now. The first guide written expressly for parents, Dyslexia: A Complete Guide for Parents provides the unique insights of a noted educational psychologist on what sort of supportive role parents can play in the life of their dyslexic child. The book includes a description of dyslexia, how it’s identified and assessed, examples of different approaches parents can adopt, and a range of useful resources.

What is Dyslexia? is designed to help adults explain dyslexia to children. The author provides information about all the most common types of dyslexia: trouble with sounds, trouble remembering how letters and words look, trouble finding words, and mixed dyslexia. He deals with the basic facts and adopts a style which is accessible to children without talking down to them. This book includes clear examples which children will be able to understand, as well as activities for parents to do with their children. The author emphasizes that everyone has strengths and weaknesses and that having dyslexia is okay. This book will be valuable for parents of children with dyslexia, as well as other adults working with children with dyslexia.

Learning Staircase is written by Ros Lug, who a specialist teacher and assessor, specializing in learning disabilities (including dyslexia). She and several colleagues set up a resource company to provide resources and support for both children and adults. The resources are designed to be used by specialist teachers, speech/language therapists, tutors, or parents who wish to work with their own children. Most of the materials are game-based and detailed instructions are provided. The resources concentrate on developing the pre-literacy and early literacy skills and there is a teaching manual which can teach parents how to teach alphabet knowledge and spelling and reading skills. Individual advice is available by e-mail. The Learning Staircase also retails leading international software for literacy and numeracy. Ros’s company are particularly proud that many New Zealand schools, speech language therapists, SPELD tutors and parents are now using these materials with great success.

Websites:

Lacewing Multimedia – is an educational resource for 7-13 year old dyslexic children, using colorful and original stories and poems which reinforce the teaching points. The website also features fully illustrated children's fiction with sample pages which can be downloaded.
AudibleKids – this website exclusively dedicated to downloadable children's audio books. AudibleKids represents a fun way to help children enjoy great stories and learn to read better. A website where parents, children, authors and educators come together to discover and share great audio books.

Resources for Teachers with Dyslexic Students:

http://www.dyslexia-teacher.com/ This website offers information about Dyslexia symptoms, assessments, treatments, and resources for helping dyslexic children and teens. News, research, case studies and teaching methods are provided to teachers to facilitate learning to these students.

http://kellierahe86.edu.glogster.com/adopt-a-child/