Minimal Brain Dysfunction (Elizabeth Koo)

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

It is a challenge everyday. My husband and I really celebrate the small successes Joshua has made this far with ADHD. There are days when we feel exhausted after a “rough” day; when Joshua has his episodes of probing us to get things his way or when we hear he got in a fight with another student in class and we need to pick up from school in the middle of working. It has also been difficult to attend social gatherings with Joshua at times because of his impulsive behavior and outbursts. But we manage. We have a great support system with the school with his IEP team, family members, and friends who are very understanding of Joshua and his condition. My husband, my other two children, and I are learning more about the disorder as we spend time with him and as we work with the school for his services.

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

            When Joshua attended daycare at 4 years old, we were often told he seemed like any 4-year-old but more active and openly participated in one activity to another, at times too excessively. We thought he was just an active child, being a boy. But as the same behaviors continued to progress and worsen as he started elementary school, his teachers have suggested he get tested year after year. As he was getting older, Joshua’s social interaction with his peers was not getting any better, often leading to Joshua becoming aggressive with his peers and physically hitting other children on impulse to express his anger. His grades were not reflective of his intellect as well. He was a sharp child growing up, but he had trouble finishing classwork and performed very low on tests. Homework was always a battle, trying to get him to sit down and complete his assignments. We finally had him tested at 7 years old.              

            At a first glance, people will not expect Joshua to have any disability or condition. ADHD is an invisible handicap since it is mainly the dysfunction of the brain that prevents him from being a normal 9-year-old boy. He seems like any 9-year-old, but excessively sociable and easily distracted by his surroundings, and often speaks with scattered thoughts and comments. 

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

We primarily work with Joshua’s teachers and district counselor very closely for his individualized education plan (IEP). We meet every three months to monitor his progress in school. In between those meetings, we get progress reports from his teacher weekly on his behavior at school and academics. Outside of the school setting, we also gained a wealth of information about ADHD from our own research on the internet (ldonline.com, has been a family friendly website we refer to frequently).  

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

            Joshua’s teachers and other school officials were very supportive throughout the process of getting Joshua tested. His teachers were the first individuals to provide additional services for Joshua’s behavior. Joshua’s teachers spent more time with him at school during the week, so their suggestions really mattered through the diagnosis process to providing Joshua the support he needed through his IEP. We are so grateful for their continued support.

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

            There is no major financial burden at this time, since Joshua is provided with an IEP and well supported through his school services. However, we are worried with the recent budget cuts in our school district that it will keep us from providing Joshua the support he needs at school. We are not sure what we plan to do if his services are cut, especially time with the school psychologist, but we are hopeful since his teachers have reassured that by law Joshua should be given some services for his condition.  

6. What other information do you want to share?

            I want every parent who has a child with ADHD that there is hope through the challenges they, we as parents of a child with ADHD face moment to moment with our child. My husband and I would strongly encourage other parents to be educated about the disorder. Our perspective of ADHD has drastically changed since we have been doing our own research. We began creating a safe environment for Joshua to express himself appropriately. We learned parenting techniques to know how to discipline Joshua through his episodes and we also learned to positively redirect negative behavior. Our new knowledge of ADHD has freed us from being guilty for the struggles Joshua faces in school and in social gatherings. I hope other parents will feel the same.      

Spina Bifida Occulta (Karen Park)

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

As a parent of a child with Spina Bifida Occulta, I feel the extremes of everything.  I am extremely blessed to have my beautiful girl, Abby, but I am also in extreme pain thinking about some of the things she will go through.  There are moments when I am torn and under a lot of pressure because there are grave choices to be made in order for her to have a normal childhood.  Sometimes I feel that I can never be educated enough to be in a place to make decisions that may affect her permanently.  I have endless amount of questions no matter how many times I consult doctors, researchers, surgeons, and other parents.  Every case seems to be unique for each person struggling with this and I want to gather information that is specific for my child’s condition.  Fortunately, Spina Bifida Occulta is a mild case of Spina Bifida.  And for the most part, my child can enjoy life with a few minor adjustments.  But as a parent, I cannot help but to worry and always be on my toes even with the smallest discomfort she has. But Abby is such a trooper and I am so proud of her.  

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

When Abby was born, none of us saw that anything was wrong with her minus a small dimple on her back. She was walking, growing normally, and doing everything she was supposed to do at her age at the right time. She grew up like any other typical child. But recently, her neurosurgeon is recommending that we perform surgery on her spinal cord this month since she is entering a growth period that could stretch her spine and cause problems. This is because by adolescence, the spinal cord has become fastened to the backbone. The nerves of the spinal cord are stretched so there may be symptoms of weakness and numbness in the legs, bladder infections, and lack of bladder and bowel control.  Basically, the more the spinal cord is stretched, the worse the symptoms become.  Fortunately, there is surgery available to relieve these symptoms by reducing the tension on the spinal cord. 

Aside from the success rate of the surgery, I am torn, because I don’t want her to have this surgery. When I look at her, she seems perfectly fine. I’m afraid that if we do this we’ll cause more damage to her yet if we leave her as is the surgeon tells us she could develop other problems that he cannot fix. At the moment, I don’t know what to do.

In addition to this worry, my daughter suffers from problems in the bladder.  This is very common among people with Spina Bifida.  When she was younger, I was not able to potty train her.  I thought this had to do with my poor discipline skills and her unique personality.  But after discovering that she has Spina Bifida Occulta, it completely explains why this is difficult for her.  This is very tough on her especially when she has to be in school or in a public place.  Diapers are worn frequently but even if she feels so embarrassed, there is not much we can do to help her in this area.

I know of another family where they have a son with Myelomeningocele.
This form of spina bifida occurs when the meninges (protective covering of the spinal cord) and spinal nerves come through the open part of the spine. This is the most serious and most common type of Spina Bifida, which causes nerve damage and more severe disabilities.  On top of my daughter’s symptoms, he is paralyzed from waist down and has hydrocephalus, dislocated hips, and clubfeet. Recently, he had to go into surgery again because his neurosurgeon saw the MRI results showing the Lumbar Dermal Sinus Tract. There was like a tube going from the outside of his skin into his spine where bacteria were getting into his spine.  In comparison to his severity, I am thankful my daughter is only a mild case. 

Depression and obesity is said to be common among people with Spina Bifida.  I am trying my best to be the most loving mother possible to prevent this from happening and I’m sure any parent with a child suffering so much already will try their best to use every preventive measure.  Luckily, my daughter is not paralyzed in any body part or unable to use certain parts of the body.  I try to encourage her to play outdoors, be active as much as she can handle.  I want her to grow up enjoying the things that any other child can experience.

Also, Abby has latex allergy like most children with Spina Bifida Occulta.  It is not severe but I always have to be cautious during any doctor visits or treatments because the doctor may be unaware of this. I have my daughter wear an allergy band (for latex) on her wrist at all times in case she has to go to the nurse’s office at school or even in the school cafeteria where the lunch helpers or janitors often wear latex gloves. There are always extra precautions I have to be aware of and inform and educate the people around me.

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

When Abby turned 3, she was eligible for special education services through her local school system. Children with Spina Bifida will qualify for services under a special education category known as orthopedic impairment or disability. Abby was also included under the "other health impairments" category. Because she was eligible for special education she was able to have access to related services including physical therapy, occupational therapy, speech therapy and early childhood special education. I didn’t have to use these services too much since she has a minor case of Spina Bifida.

Also, if any parent is unsure of their child's rights to special education services they can contact their local Parent Training & Information Center or their state Department of Education. The agency I contacted was The National Information Center for Children and Youth with Disabilities (NICHCY) at 1-800-695-0285.  They also told me about other local services and resources that were useful to my family.

Another service that is available to me is any SBA affiliated group, United Way or Red Cross Agency.  I am able to ask whether an emergency resources program is available, or for referral to a local source of assistance. I can also contact the social services department at my Spina Bifida clinic or hospital.  Usually cities and counties have health departments that can be beneficial to families.

·         How did you find out about the above services?

The hospital where my daughter was born and other doctors I consulted had a list of resources and agencies to look up.  They are the ones who introduced me to these networks.  I also searched online in hopes to find other information that may be helpful.  Through the web, I was able to connect with other parents who had children with similar conditions as me.  We would find comfort in each other and have discussions in forums about doctor responses and the treatments that are out there. They also introduced me to useful information or connections whenever available. The school Abby attended was not as reliable but only because the special education/health services do not deal specifically with Spina Bifida patients on an everyday basis. I feel that it’s up to me to be responsible in being up to date with the latest discussions regarding this.

·         What financial burden, if any, are you experiencing?

Unfortunately, the national headquarters of the Spina Bifida Association does not have the resources to offer direct financial aid to individuals with Spina Bifida. However, there are other sources of aid that have been helpful to others.  

Thankfully, I have been able to receive assistance with hospital care needs.  This is possible due to the Hill-Burton Act. For persons unable to pay, like myself, there is a financial aid service. It is not paid for of course at 100% of her needs, which forces me to have a job that is able to pay for the rest.  But when hospital visits and treatments become frequent, it is hard to maintain a job and care for Abby at the same time.  There are always bills to be paid on top of her needs.  Additionally, I have to spend extra money to find toys or furniture that supports her condition in the best way. 

Sometimes life is difficult but who says theirs isn’t?  I try to see things in a positive light.  This helps me to persevere through this. 

·         What other information do you want to share?

For all parents out there, I want to recommend that they get X-rays and/or MRI (to see if there is a tethered cord or hydrocephalus that needs treatment) done for their child as soon as possible.  Spina Bifida is a common case that happens to 1 in 800 infants.  And depending on the severity of the condition, there are different procedures that need to take place for the child.  I have been connected with a family where their daughter was born with Lipomyelomeningocele, which is in the category of Occulta. Their daughter had her first surgery that took them 6 hours to release her spinal cord.  Because they waited, she already was experiencing some nerve damage to her right side. Once those nerves are damaged they are permanently damaged. Every child responds in their own way. Their daughter could have been paralyzed had they waited any longer. Surprisingly, Spina Bifida often times go unnoticed but the sooner you know, the earlier you may get treatment and prevent further damages.  Spina Bifida is not one condition; it is a multitude of problems that affect the mind, the body, and the spirit.  No two cases of Spina Bifida are ever the same. 

As mentioned briefly before, there are 3 most common types of Spina Bifida: myelomeningocel(the severest form), in which the spinal cord and its protective covering (the meninges) protrude from an opening in the spine; meningocele in which the spinal cord develops normally but the meninges protrude from a spinal opening; and occulta, the mildest form, in which one or more vertebrae are malformed and covered by a layer of skin. 

What's more, most children with Spina Bifida have normal or above normal intelligence.  Some may have learning disabilities or need special tests to find better ways to accommodate to their learning needs. These children can have creativity, wit, and insight in areas teachers or parents may not foresee. Their label of “Spina Bifida child” often masks these talents.  These children need the same nurturing and challenging learning environment as any other student in order to help develop strong academic and social skills. Many of these children will grow up fulfilling their dreams and be motivated to become leaders who hold meaningful jobs, build families, and make significant contributions to society. 

http://karenpark86.glogster.com/spina-bifida/

Parenting a Child with Dyscalculia - Liz Holcomb

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

My daughter, Brianna, is now 8 years old.  She is the youngest of our three children and is a bright and happy little girl.  We share a very close bond.  When Brianna was in Kindergarten, we started noticing that she was not recognizing numbers as easily as her older siblings had.  My husband and I began to wonder if there was something wrong, or if she was just a little slower at learning than our other two children.  During parent-teacher conferences, her teacher told us that she did not feel there was anything to worry about because Brianna seemed to be thriving in every other subject.  Over the next few years, she continued to struggle with math.  We noticed that she had trouble with simple things, like understanding the concept of time, remembering the date, keeping score when we played games, and counting down the days left until our family vacation every summer.  Brianna’s second grade teacher was truly a blessing.  She also noticed that Brianna had a very hard time with simple math calculations.  She told us that we had the option to contact the principal and request that our daughter be assessed for a learning disability in math.  We took her advice, and with the help of the principal, her teacher, and other specialists at the school, our daughter was identified as having dyscalculia.  Dyscalculia is a learning disability that causes severe difficulties in math.  It was such a relief for us and our daughter.  She had always thought she was just dumb in math.  After the assessment, she was able to understand that she just learned math in a different way than the other students.  It has been quite a journey trying to help our little girl.  Brianna just started the third grade, and her new teacher is very dedicated to helping her succeed.  We are fortunate to have the help of her teacher as well as an outstanding tutor that works with her after school.

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

We noticed early on that it was taking Brianna longer to understand math concepts that were simple for her siblings to master.  She struggles in math in comparison to her classmates, but does really well in the other subjects that do not require any calculation, especially Language Arts.  Her teacher told us that she is actually above-average in Language Arts.  Now that Brianna is in third grade, she is expected to learn multiplication.  She has trouble remembering and retaining basic math facts, so she is behind her classmates in learning the times tables.  While she is still in the process of mastering addition and subtraction facts, some of her classmates have already mastered the multiplication facts.  We are working hard with her teacher and tutor to help her master the basic math facts so that she will be able to move on to more advanced math applications.

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

At first, we had to go through the school principal to get Brianna assessed for any learning disabilities.  After she was identified as having dyscalculia, the school provided her with special assistance.  Her teacher provides concrete examples for the math problems and encourages her to visualize the problems.  She is given extra time on math tests, and Brianna is given extra space on worksheets and tests for her work.  We also hired a private tutor for our daughter.

How did you find out about the above services?

Brianna’s second grade teacher referred us to the principal for requesting that our daughter be assessed.  We found out about our private tutor through another parent at our school that has a son with dyscalculia.

What financial burden, if any, are you experiencing?

We pay for Brianna to have a private tutor that works with her on her math skills.  The tutor charges about $40 an hour.  Brianna works with the tutor three to five days a week, so the average cost is between $120 to $200 a week.  We do not see this as a burden, however, because Brianna is really showing improvement.  We are willing to do whatever it takes to help her understand math concepts.

What other information do you want to share?

I think it is extremely important to help your child focus on his or her strengths.  Dyscalculia can be very discouraging for children, so they need to see that they have talents in other areas.  My biggest piece of advice is to be patient with your child and do whatever you can to get him or her the help that is needed.  If you suspect that your child may have Dyscalculia, don’t hesitate to speak with the principal at your child’s school about getting your child assessed.  Sometimes the hardest thing to do is take the first step, but it can make all the difference.

My Glogster
-Liz Holcomb

(REVISED) Angelman's Syndrome -Desiré Dawson-Phillips

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

I absolutely adore my son, Shawn, he just experiences life differently than others because Shawn has a disorder called Angelman's Syndrome (A.S.). With having a son with a disorder, there are definite challenges however benefits from the person he is. We do the verbal communicating with Shawn, and Shawn communicates by nodding his had yes or no or pointing to visual pictures of his needs because one of the traits of A.S. Is speech impaired. Shawn does not talk at all, but one day, with the help of his speech therapy, he may be able to pronounce and communicate a few words, hopefully mama. Early in Shawn's life, Shawn was about six months old, and we started to notice there was something different about Shawn. At nine months, after many tests and diagnosis, the doctor was able to tell us that my son had Angelman's. I felt relieved that there was a name, a diagnose for his condition because I would be able to fit his needs and find other parents like myself. At first it was really stressful for my husband and I because Shawn would wake up in the middle of the night and we both would stay up with him. My husband and I, after awhile, began to take shifts of the nights he would wake up so that we both can remain sane and obtain some type of sleep. Another challenging aspect of life is making sure Shawn's schools and our home is accommodating to fit Shawn's needs. On the refrigerator, My husband and I have placed pictures of food he can eat. Shawn either points to the picture himself, or I give him a picture and ask him if he wants the food. Shawn then shakes his head with a yes or no. Though there are challenging aspects to our life with Shawn having Angelman's Syndrome, he is always joyful and smiling. Shawn loves to show affection and bring happiness to any situation. He is always laughing. Shawn is such a joy to be around because through the stress, he is constantly smiling, reminding me that he is a beautiful blessing.

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

My child is developmentally the same as other children because he has needs and emotions just like everyone does, however, Shawn's needs and emotions are slightly different because he has a severe developmental delay. Though most children begin walking between nine and twelve months, Shawn did not start walking until he was almost three years old. With Angelman's Syndrome sometimes it can take up until the age of six for a child to begin walking. Another developmental difference is language. Language never developed with Shawn. Shawn will be lucky to learn a few words. With the help of speech therapy Shawn may learn a few words. Picture cards and Sign Language are used to communicate with Shawn because his speech is impaired. Sign Language is not used fluently. Sign language usage would be compared to just using one or two words to communicate. Shawn also suffers from seizures periodically. The seizures tire him and because of the seizures it is important for Shawn to be around someone all day. Shawn looks like any other child with a happy demeanor, it is just his cognitive development, fine, and gross motor skills that sets him apart.

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

Our family deals with and are involved with many agencies. One of the agencies my family deals with is the Angleman's Syndrome Foundation which can be found at http://www.angelman.org/. With this foundation, we are able to talk with other families that deal with Angelman's Syndrome. Also, with being involved with this organization, we discuss and post Shawn's developments, progresses and struggles. Speech and physical therapy are other resources we use to help Shawn developmentally. The educational writings from Charles A Williams, MD and Daniel J Driscoll, PhD, MD about Angelman's Syndrome were also found on the internet. Their research was helpful to my family and me when learning about Shawn and his disability. http://www.armyofangels.org/ got me acquainted with another family with Angelman's Syndrome and she was so helpful to describe her seven year old Liam and his developments. There are sources online that are helpful for families that are affected by Angelman's Syndrome. Shawn primarily deals with the services of speech, occupational, and physical therapy. With these different therapies, Shawn's fine motor skills will develop while working on puzzles and his pinch grip. His speech will improve with using objects to represent his feelings and using yes and no signals. Shawn will also learn daily life skills.

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

I found out about the Angelman's Syndrome Foundations from researching on the internet. Through the sites on the internet I grew a relationship with one of the families that also have a son with Angelman's Syndrome and I was able to find the different therapies I needed for my Shawn.

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

Having a special needs child is very expensive, but it is worth every penny to make sure my child has the resources he needs. I learned that money from the state and federal have helped our family, which is what the American citizen's tax money goes toward. We are so grateful for the system to be able to help us with some of the expenses our son has. Having a disabled child is a very expensive burden, but I cannot put a price on my son. Every service that he has, is needed and I cannot change that so I will do everything I can to make sure my son has the resources for him.

f. What other information do you want to share?

My child, Shawn, is a beautiful person inside and outside and we are grateful for the accommodations schools and teachers are making for our children to live like children. Angelman Syndrome shares traits with other disabilities such as Autism, Rett syndrome, Deletion syndrome, Cerebral Palsy, and more, so it it important to get your child tested to know your child's diagnosis to better treat and help your child. With patience, repetition and understanding, my son will continue to develop. Shawn will continue to grow and develop thanks to the resources available to him. I am thankful that I have a voice for my son so this rare disorder can continue to be recognized, researched and be of better help to the families with Angelman's Syndrome.

Desiré Dawson-Phillips

Glogster: http://desiredawonphillips.edu.glogster.com/ddpangelmanb22/

Parenting a Child with Autism (Rebecca)

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

    I love my child very much, but it is a daily struggle just to accomplish simple tasks with my child. It is hard for other parents to understand and they are often unsympathetic to what I have to deal with. Sometimes it feels like all of the joy of having a baby is taken away because it is so difficult and they are so hard to work with. On the other hand I love my child and only want the very best for him. He is a very unique child with many gifts that shine through his difficulties. 

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

   My child looks developmentally the same as most children his age, but is socially and mentally not at the same level. While he is intelligent, it is in unique ways and doesn't follow typical mental development of other children. He is also not social adept, and does many things that other children his age know to be socially unacceptable. For instance he will have loud uncontrollable tantrums in public that are more characteristic of a much younger child. 

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

   Since my child is pretty high functioning we do not have to deal with as many professionals as other families, but there are still extra resources we take advantage of. One of which is a personal aid in his class to help him stay focused and behave appropriately. Also, we hire a private tutor to work with him after school on certain days to help him stay focused and accomplish his homework for the day. Then once a week on Wednesdays we go to a meeting with a group that is specifically for families with Autism. First we meet as a whole group then the children are taken to a separate class where the work on their social skills and the parents have a group time to talk together or listen to a speaker. This is a good time to learn new strategies and to bond with other parents going through similar struggles. He also goes to see a therapist who helps him and us work together to improve his functionality in everyday situations.

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

   The school provides the classroom aid for my child. The meetings we heard about from connecting with various autistic communities in our area and on the internet. We chose to hire a college student who is working to become a teacher, because we knew she would work well with our child and be able to take some of the burden off of me to get him to do his homework every night.

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

     It is difficult to afford the medication and therapy for our student, while the groups we are involved in help they can be expensive. Our main financial difficulties are related to the fact that we have a child with autism. We have even had to borrow extra money in the past and it just gets harder and harder. Since my child needs so much of my time and attention I can't work as much as I should to help with our finances which makes our situation even harder.

f. What other information do you want to share?

   It is hard for many other parents to understand the difficulties that parents with children who have special needs face. It is important for them to remember that there are many things that can contribute to a child's misbehavior. People should not just assume that a parent is not doing their job because there child is acting inappropriately for their age. Also it is important for those who depend on parents with autistic children to understand that many things are out of their control. If their child is having a rough day or gets set on one thing it could be an hour before their parents are able to get them back on track and out the door. So be understanding of the fact that time constraints are not always manageable for parents of children with autism. 

Link to my glogster:  http://beccao.glogster.com/autism-spectrum-disorder/

Fragile X Syndrome (Kim Klippel)

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

It has been a joy for me to watch Rebecca blossom. Tom and I thought she was completely fine until we were noticing she was hitting her milestones late. At 12 months she finally sat and at 18 months she was still not walking. We were concerned so we took her in for testing and the doctor told us that she would develop when she’s ready. This was not good enough for me. Even my daycare teacher told me she was concerned about his behaviors because he would not follow simple commands. I went to over a dozen doctors trying to find the right answer. Several doctors told me that Rebecca has Autistic-like behaviors, but they were not comfortable diagnosing her just yet. Finally, the Developmental Pediatrician had my husband and me come back in a few months for more testing. Then, he said the genetic test showed she had Fragile X Syndrome. We had never even heard of it before! What was going to happen to our baby girl?? I wasn’t ready to be the parent of a child with special needs...not my baby! When I went home to look it up, my girl only shows one of the symptoms, which is being developmentally delayed. Other symptoms include: the long face, large ears, flat feet, unstable moods, or loose joints. My child appears “normal”, but she is a special girl with needs. I hope people don’t neglect this about her. We have our good and bad days, and some prove to be more challenging. Some days she just has these tantrums and just wont stop. All I wish is for her to be happy. It is so painful to watch your child be so frustrated. Yes, I had not intended on raising a child with special needs, but she is now three and a joy to my life. This disorder is not terminal, so I can’t act like she is going to die. There are many worse things, but I fear for her future. What will this be like when she gets into school? Will she adjust? Will she be picked on? The future is unknown, but I can just live in the moment and be thankful for my beautiful baby girl.

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

As I said, Rebecca hit all of her milestones at a later age. I am hoping that she can “catch-up” to other kids her age in the future, and I will support her in any way I can to make sure she can achieve all that she can.

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

Unfortunately, Fragile X Syndrome does not receive a lot of support because not many have heard of it before. I am becoming involved with the Fragile X Association of Southern California, however, as a support group with other families and to raise funds for a cure. I haven’t had to deal with any agencies yet, but I am anticipating that there will be some help out there. From what I have found, there is hardly anything besides support groups. My doctors recommended that I look more into the National Fragile X Foundation.

• How did you find out about the above services?

I’ve been researching online and asking doctors. Not too many people are helpful with this disorder.

• What financial burden, if any, are you experiencing?

Rebecca has been put on several medications to help with several aspects of her disorder, such as behavior. A lot of these medications are paid out of pocket and can get expensive very quickly. There are also many experimental drugs out there, but I think Rebecca is too young to be trying medicine like that.

• What other information do you want to share?

My child is a gift and deserves to be happy too. Don’t take this away from her by labeling her and treating her differently. She has her challenges, but nothing will stop that child. If she really wants something, she will find any way to get it. I hope she never loses that inspiration and determination. While my little Rebecca does not look like she should be labeled because she doesn’t have the irregular physical traits, do not be afraid of ones that do. They are people too and have a big heart to give.

Here is the link to my glogster to learn more:

http://kimklip.edu.glogster.com/fragile-x/

Ayden Camila-Special Need: AIDS by Adriana Sierra

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

Hello my name is Adriana Sierra, my husband Benjamin and I have been married for 12 years.  Shortly after we wed, my husband and I learned that we would never be able to conceive children of our own.  The news was devastating.  After several weeping months, I build enough courage to begin looking into the other options we had.  I contacted several adoption agencies in hopes of being granted the opportunity to become a mother.  One day as I was visiting in the Olive Crest Adoption agency, I came across a flyer from the Children With AIDS Project.  The CWA is an agency whose mission is to place any of the 134,000 children living with HIV and AIDS into foster or adoptive homes.  At that very moment, I felt like adopting a child with AIDS was my calling.  My husband and I began to emotionally, psychologically and financially prepare ourselves for the challenge that would come from having a child who’s infected with AIDS.  After two lengthy and rigorous years the adoption was finally completed.  On September 15, 2000, Benjamin and I became the parents of five month old Ayden Camila.  

No words can explain how rewarding it feels to be a parent.  Ayden is the most wonderful daughter one could have ever asked for.  Hearing Ayden laugh and seeing her smile reminds me everyday that I made the right choice in adopting her.  Shortly after Ayden came into our lives, I decided to quit my job as an elementary school teacher to devote myself entirely to raising my daughter.  In the beginning, things were overwhelming, between the dozens of doctor appointments, countless therapy sessions radical changes had to be made to accommodate to Ayden’s needs.  Being a parent of a child with special needs is challenging and most often you feel helpless.  Knowing that there is nothing in your power that you can do to help your child medically is devastating.  When I adopted Ayden, I decided that I was not going to be a weeping lamenting parent, instead I have metaphorically become my daughters backbone.  Through the years I have been actively participating in my daughter’s education.  Currently, I am the president of her school’s PTA and I am no stranger to my daughter’s elementary classroom, since I volunteer quite frequently.    

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

Now that Ayden is ten years old; she stands 54 inches tall and weighs 68lbs.  Looking at her exterior Ayden looks like an average fifth grader but unbeknownst too many, she is anything but average.  As a toddler, Ayden was diagnosed with an expressive language impairment.  As a result, Ayden has had to receive speech therapy.  In school, Ayden receives speech services by certified personnel everyday for an hour.  Ayden has had to miss many days of school because of frequent doctor appointments, illnesses (fevers, soars, flu like symptoms and common colds) due to her frequent absences; Ayden has fallen behind in her studies and requires extra academic assistance.  So thus, in comparison to her classmates, Ayden is different and requires specialized attention.  

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

Our family has become part of the Children Affected by AIDS Foundation.  This nonprofit organization provides several services to children and families that are being affected by AIDS.  Some services include: basic needs, like providing clothing, housing, medical co-pays, medications and emergency childcare.  CAAF also provides psychosocial support, social and recreational support and camp network grants.  With the help of this organization, our family regularly receives therapy and we are apart of several support groups that help plan interactive activities and field trips for children such as Ayden.  Some activities include: making picnics, horseback riding, swimming, kayaking and fishing.  This organization has helped alleviate some of the financial burden my husband and I have encountered, since they provide us with school supplies, medical co-pays and several medications.  We have also been closely working with the Children’s AIDS Fund organization, they have been kind enough to provide us educational resources.  This organization has arranged for Ayden to receive additional academic support through one on one tutoring services she receives three times a week. 

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

Through conversations with my doctors and health care providers I learned that there are several organizations that provide different types of aid and support to people and families who are suffering with the disease.  I decided to conduct a thorough web search and found CAAF & CAF, after coming across the organization’s web pages, I immediately contacted them.  I arranged for several meetings with the personnel from both organizations and when I felt comfortable, I introduced them to Ayden. 

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

Ayden is currently undergoing HAART treatment.  HAART (highly active antiretroviral therapy) HAART is defined as treatment with at least three active anti-retroviral medications (ARV’s), typically two nucleoside or nucleotide reverse transcriptase inhibitors (NRTI’s) plus a non-nucleoside reverse transcriptase inhibitor (NNRTI) or a protease inhibitor (PI) or another NRTI called abacavir (Ziagen).  This treatment is most often referred as “the triple therapy.”  The average annual price for HAART is between $10,000-$15,000.  So needless to say, that it is very costly and we rely heavily on the assistance we receive from CAAF because otherwise we would not be able to afford the cost of this therapy.     

f. What other information do you want to share?

I just want to express how important it is to teach and practice tolerance within the school community.  I also want to invite parents and the entire school community to become educated on this disease.  There are several non-profit organizations (like the ones mentioned above) that can provide you will good resourceful information on the transmission, the symptoms and answer other questions you may have.  Lastly, I want to share that no transmission of HIV within a school or childcare setting has been reported (kidshealth.org). Please remember that Ayden by no fault of her own contracted this terminal disease and she like any other child deserves a high quality education.

What is AIDS?

AIDS stands for acquired immunodeficiency syndrome, a disease that makes it difficult for the body to fight off infectious diseases. The human immunodeficiency virus known as HIV causes AIDS by infecting and damaging part of the body's defenses against infection its lymphocytes, which are a type of white blood cell in the body's immune (infection-fighting) system that is supposed to fight off invading germs.

Talking With Kids About HIV and AIDS

Talking about HIV and AIDS means talking about sexual behaviors  and it's not always easy for parents to talk about sexual feelings and behavior with their kids. Similarly, it's not always easy for teens to open up or to believe that issues like HIV and AIDS can affect them.  Doctors and counselors suggest that parents become knowledgeable and comfortable discussing sex and other difficult issues early on, even before the teen years. After all, the issues involved understanding the body and sexuality, adopting healthy behaviors, respecting others, and dealing with feelings  are topics that have meaning at all ages (though how parents talk with their kids will vary according to a child's age and ability to understand). Open communication and good listening skills are vital.  Schools can help. Every state requires schools to provide age-appropriate information about HIV/AIDS that has been designed to educate kids about the disease. Studies show that such education makes a tremendous difference in stopping risk-taking behavior by young people.  Parents who are well informed about how to prevent HIV and who talk with their kids regularly about healthy behaviors, feelings, and sexuality play an important part in HIV/AIDS prevention.  Kidshealth.org

Helpful resources:

• http://www.childrensaidsfund.org/default.asp
• http://www.caaf.org/
• http://www.youtube.com/watch?v=68I7JlVhuhY
• Kidshealth.org
• http://www.aacap.org/
• http://aidskids.org/
• www.asha.org