Brandon's story- Kathleen Nguyen

Severe Mental Retardation- Intellectual Disability
 

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

I was devastated when we were given the news; this diagnosis is really hard to take in.  To be honest, I was really depressed for a long time.  I never thought that something like this could happen to us—to our baby.  Brandon looked like a normal baby boy; he developed like a normal baby would except he took his time getting to his mile stones.  It wasn’t until he was three that we noticed developmental delays such as talking and walking and symptoms like seizures developing.  I was really worried for Brandon when he was two.   All of a sudden he became withdrawn.  He would stare off into space for long periods of time, he would not engage when we try to play with him, he would just be so unresponsive at times.  I thought something is wrong with him.  Something is terribly wrong.  I started all sorts of research and everything pointed to Autism.  I knew something was wrong but I didn’t know what I was dealing with and I was told just to keep watch and to wait.  That is the most frustrating part—the waiting.  I kept trying to figure out things I can do to better reach him but as time went on the distance seemed to widen and I was going out of my mind trying to figure out what was going on in his head.  It is the scariest and saddest thing not being able to connect to him.      

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

Brandon is slower.  He does everything later than other children.  He didn’t start to roll over until he was nearly a 9 months.  We didn’t see him walk until he was nearly 18 months.  I kept on seeing other babies walk, babble, talk, play, etc, and I look at him and think why isn’t he doing what others can do by now.  He eventually gets around to rolling over by himself, to walking, and to sort of talking but these mile stones should have been crossed ages ago.  It doesn’t matter that he is slow, I love him no matter what, but I worry and I am increasingly getting more and more worried.

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

I have gone to the local pediatrician the first year.  It wasn’t until about the 26 months check up that the doctor took special notice of Brandon.  I brought him in for a visit because he was having a fever.  The fever lasted for three days and I couldn’t get Brandon to stop crying.  It was one of the most nerve racking times in my life.  I kept calling the office for a visit but the next appointment was two days from when I called.  I went to the emergency room after a day, but they sent us home with some medication for the fever.  I tried everything to could to help him.  Headaches and fevers makes me worried because I had a brother who developed a brain tumor.  We didn’t know the tumor had grown into the size of a golf ball until the fever and headaches set in.  The CT scans didn’t show anything, it was an MRI which revealed the mystery to our family. After that type of experience, I am constantly terrified when there is the slightest mention of headaches and fevers.  My doctor said I had to watch Brandon very carefully and I swear I did not close my eyes for three days, not until he was sleeping peacefully again and his fever had gone away.    

We think now, that the fever was really meningitis and that it had exacerbated Brandon’s FXS (fragile X syndrom) resulting in his current mental condition. 

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

It wasn’t until we got him tested and diagnosed that we had any help.  I feel like I’ve wasted so much time.  When he was younger I knew something was wrong, but I was told to watch and wait.  I think back now and I get so frustrated with myself for not doing more for him.  I thank God for Sarah every single day.  Without her intervention, Brandon wouldn’t have been tested and he wouldn’t have been diagnosed as soon as he was.  I’ve done the research; kids don’t get tested until they are in school which means they wouldn’t be officially tested for cognitive disabilities until they have been recommended for testing by a psychologist at the earliest in first grade.  Brandon would have been six or seven by the time something official happened in the school systems.

The services and resources I work with are:

American Association of Mental Retardation: AAMR website

The Arc of the United States

The National Association of Councils on Developmental Disabilities

 

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

Financially we are strapped.  Eric is the sole bread winner for our family.  I stopped working while I was pregnant.  We had agreed to have one parent at home with Brandon for the first full year, then I would do part-time work until Brandon was 5, and finally go back to full time work when he was in first grade.  Things didn’t turn out the way we planned.  After Brandon got sick with meningitis when he was two, the plan was altered.  Later at three when he was diagnosed with severe mental retardation it flew out the window.  Because Brandon needs so much care right now, Eric is our sole provider.  It is really difficult financially for us because his insurance plan doesn’t cover for a lot of the special therapy Brandon requires.  Speech therapist, psychiatrist, nutritionist, occupational therapist, special education teacher, physical therapist, and pediatrician are teamed up together and we work with all these people as well all try to develop a plan to help Brandon reach his fullest potential.  His fullest potential… that seems very optimistic right, but his fullest potential is to function with minimal directed care and directed supervision.  They say at best he will have the mental capabilities of a child of three years old. 

f. What other information do you want to share?

Brandon was almost four, when we enrolled him into a daycare.  While in daycare, the teachers had to really help him with taking care of himself (personal hygiene) and giving him special attention when it came to games and activities.  I know that Brandon is three and should be more like a big kid than a baby, but he was still being very baby like.  I thought that really socializing him with other kids would help him grow and develop faster.  It wasn’t until then that someone had a real talk with us about Brandon’s mental development.  Sarah the director of the daycare had pulled me aside to share with me what she was noticing about Brandon.  I know Brandon was slow, but to be concerned that he was showing signs of mental “retardation” made me concerned, angry, upset, emotional… I don’t know the entire gambit of negative emotions flooded me then.  I really wanted to pull him out of the program then and there.  It was my husband who paid attention.  I think I have had it out for the term “retarded” from its first utterance.  I really hate it now.  Sometimes, when I am having a conversation with other people and they say how “retarded” something is.  I just want to walk right up to them and say what exactly is so “retarded.”    I really want to be an advocate to change the medically accepted label of mental retardation.  Brandon is slower to develop—he is mentally challenged, developmentally challenged, cognitively slower, has instructional disabilities—but he is not a retard!
Here are some good reading material for any parent who is dealing with MR/DI:

Children With Mental Retardation : A Parents' Guide

Differences in Common : Straight Talk on Mental Retardation, Down Syndrome, and Your Life

Parent Training and Developmental Disabilities

Toilet Training for Individuals with Autism and Related Disorders

Retarded Isn't Stupid, Mom!

Leslie's Story : A Book About a Girl With Mental Retardation

Spinal Cord Injury - Renee Kozicki

My son, William, is 8 years old. He was in a skiing accident two years ago that left him with a spinal cord injury. He is now paralyzed from the waste down, but maintains full control of his upper body.

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

It was really hard adjusting to life after the accident. William was a very active child and it crushed me to see that taken away from him. We also needed to change the way our house was set up but adding ramps, moving his bedroom downstairs, installing bars in the bathtub and near the toilet, and putting things he needed access to at a lower level. We have also tried to become more aware of how we use language and how that could make him feel inadequate. Simple phrases like “Let's run to the store to get some milk” or “Let's hop in the car” all emphasize actions that he is no longer physically capable of. He is not very sensitive about things like that, but it upsets me to draw attention to it. 

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

He is the same loving kid that he always was, but he doesn't have the same amount of independence that his classmates have. He needs help getting dressed, bathing, and stretching. Physically, he looks the same as other kids, except that he is in a wheelchair. He struggles sometimes at school, especially with science, but that has nothing to do with his injury. 

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

Canine Companions for Independence provides highly-trained assistance dogs for children and adults with disabilities, free of charge

http://www.cci.org/site/c.cdKGIRNqEmG/b.3978475/k.3F1C/Canine_Companions_for_Independence.htm

Social Security offers supplemental income to help support children with disabilities

http://www.ssa.gov/pubs/10026.html

Medicaid is available to cover costs that go beyond standard health insurance coverage.

http://www.cms.gov/MedicaidGenInfo/

How did you find out about the above services?

Spinalcord.org has a Resource page that lists different resources available

http://www.spinalcord.org/resources/index.php?link=S&list=87

Social Security

http://www.ssa.gov/pubs/10026.html

Medicaid

http://www.cms.gov/MedicaidGenInfo/

What financial burden, if any, are you experiencing?

William's wheelchairs are very expensive and as he grows, he will need bigger ones. Health insurance has limits for costs within time periods so we end up paying for a portion of it ourselves. He most recently got a wheelchair that is adjustable and should last into puberty. He has also expressed interest in getting a wheelchair designed for sports or outdoor activities. We hope that we can afford those things for him, but they cost a lot more than basketball shoes would. We also had to retrofit our home but luckily my husband is a contractor so it was more affordable.

What other information do you want to share?

We used the Christopher Reeve website when modifying our home to be wheelchair friendly

http://www.christopherreeve.org/site/c.mtKZKgMWKwG/b.4453475/k.A820/Home_Modification.htm#

Brennar and Prader Willi Syndrome--Tricia

a. How does it feel to be the parent of your child?
  Like any parent, I’m very proud of Brenner and know that I am lucky to have him. At the same time, there are days when I get frustrated and feel that this isn’t fair. Prader-Willi Syndrome is not well known and is still “getting out there” as far as research goes. I’m lucky that Brenner has only some of the symptoms of Prader-Willi Syndrome and has been able to adapt well.  It seems unfair that he has to ‘adapt’ at all.  Every parent likes to think of their child as being perfect, and wanting to do their best in keeping their child’s perfection.  It’s extremely hard to accept that there is pain your child will go through that you can only do so much about. You never want your child to feel that way. Those days are the hardest.

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

Brennar, when he was first born, wasn’t too lively. Most infants born with Prader-Willi Syndrome aren’t.  He was what the nurses called ‘floppy’, meaning he didn’t kick and cry normally like other babies. He had to be fed through a tube because he wouldn’t eat on his own.  Because of this ‘floppiness’ or low muscle tone at birth, we were told we’d have to work with Brennar on moving him and helping to build up his muscles.  As he got older, we noticed some developmental delays. Brennar has trouble speaking due to a lack of muscle control that he is continually working on.  Brennar will always be small for his age, most likely reaching the maximum height of 5’4’’ when he’s an ‘adult’.  He’s developmentally delayed a little bit behind the rest of his classmates now (He’s 9.)  We noticed when he was 2 that he began the ‘classic’ symptom of Prader-Willi Syndrome: constantly eating. He’d do anything for food: do a trick for you, look for it anywhere, take it out of the trash.  All of this was done even after he’d had a full meal. His body only needs half the calories of a ‘normal’ child, and so had we not monitored how much he ate, he could be morbidly obese.  Brennar is also socially behind his classmates. He gets upset when frustrated and throws temper tantrums. He asks questions repeatedly even though he may know the answer, just for reassurance. Change can be a little scary for him.  He does well in reading and writing along with his classmates but struggles in mathematics and abstract thinking.  It takes him a lot longer to deal with those types of tasks. He also has poor short term memory. Any directions given strictly orally will either be partially done or not done at all, as his auditory processing is severely delayed. Over time, the eating has gotten better. There is now a medication that he can take that helps to curb his hunger and help manage weight gain.

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

We’re extensively involved with the Prader Willi Syndrome Association of the UK and the Prader Willi Syndrome Association of the United Sates. Both are extremely good resources for parents and educators of children with Prader Willi.  We became involved with the one in the United States first, and attend workshops and conferences with other parents. It’s nice to see a support group of people who understand what you go through.  We became involved with the UK association as they had an even bigger resource list to turn to for Prader Willi Syndrome.  My child can receive special services from the school due to the IDEA act, allowing for special education and for those needs to be met.  He is currently working with the RSP teacher at his school and receives physical therapy there as well.

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

These services were found out largely in part due to the two websites on Prader Willi Syndrome: Prader Willi Syndrome Association United States and United Kingdom.  There really is not as much information out there about Prader Willi Syndrome yet. There are so many symptoms underlying the diagnosis that it is difficult to compile several resources together.

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

We’re managing as of now, but my little one isn’t cheap. We have doctor visits often to check up on calorie intake and health check ups.  Any physical ailments should be looked into early, especially as Brennar’s low muscle mass makes his muscles weak, making his body weak for fighting off infections and slow to heal.

f. What other information do you want to share?

            Please look into those websites I mentioned above and help educate other people on all the different conditions children may have. Know that each child is different, including children with the same disabilities. They all have different needs and are all individuals. I’ve created a glogster with more information on Prader Willi Syndrome that you can access below. It has the links to the websites I mentioned as well as information useful to parents and teachers.   Also, know that I do not view my child as being not capable because of his disability. I still want him to do the best he can for him.

http://treesha.edu.glogster.com/Glog-Prader-Willi Syndrome/

Mild Mental Retardation- Amanda Hassine

Hi everyone! For this assignment, I actually interviewed my aunt because my younger cousin, Max, is Mildly Mentally Retarded. As sad as the answers to my questions sound, they came straight from a parent's mouth and they are true. I just wanted to give you that heads up!

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

There are so many different emotions that run through my mind when you ask this question. Of course, I love and cherish my child. One thing I can definitely say is that he has made me a stronger person. I have become a person I never knew I could be because I have had to advocate for my child since the day he was born. My child has brought out so much good in me and I love him for it. But I also know that if I did not have a special needs child, my life would be much different. It would be easier, to be honest. I would have a lot less financial strain and a lot less stress. One of the hardest parts about it is that it affects every member of my family and every relationship within my family. It affects my relationships because my special child demands a certain amount of attention in order to function and in turn, the rest of my family gets my leftovers.

As awful as this sounds, I find myself thinking why me? There is so much guilty emotion constantly rushing through me. Did I cause this? Could I have prevented this? I was so careful when I was pregnant. I have constant anxiety about his future, so much that I often don’t sleep at night. First comes the immediate anxiety, what issue will I be forced to confront today? Then there is the long-term anxiety. Is he ever going to be independent? Is he happy? What is his definition of happy? I think that it is the unknown that hurts the most. Lastly, I find myself feeling angry. I’m angry because people treat him differently, I’m angry because people don’t even try to understand. I have definitely realized that people are just not nice, adults and children alike.

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

Max is physically developing the same way as his peers. Max looks “normal” to other children. He is caring, affectionate, and funny. He reminds me of what any pre-teen boy should be. Although he looks the same as other children, he does not think in the same way. He lacks social and academic skills. He is capable of having meaningful, but very immature relationships with both sexes.  But many people seem to feel uncomfortable with Max because of the Obsessive Compulsive tendencies he exhibits. Also, he is much further behind academically. My child took longer learning how to speak, walk, and attend to his personal needs. There are some things that my child will never be able to learn. He will always be 2-4 years behind the children at his grade level and this breaks my heart. He is in the 9^th grade but functions at a 5th grade level right now. His IQ is a 55 (the average for his disability is 50-70). His adaptive skills also got hit. Max may seem clumsy. He does not show a lot of interest or inclination towards personal hygiene or life skills. While other 9^th grade boys are wearing deodorant and cologne to impress their female classmates, my son is fighting me to take showers. I think that for most people, it only takes a short while to realize that there is something different about Max.

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

         The Regional Center of Orange County has been a huge part of lives since we found out Max was Mildly Mentally Retarded. You can find them at http://www1.rcocdd.com/content/. They are a private, non-profit organization contracted by the state to coordinate life-long services and support for people with developmental or learning disabilities. Once you join, you are assigned a caseworker. That caseworker has met with us every single year since the year Max was diagnosed (about 7 years now). 

        Another great agency is an organization called The Arc. You can find them at http://www.thearc.org. They provide everything from doctor recommendations to counseling. I really liked their support groups networking system. The Arc requires a paid membership, but has turned out to be worth our while. The only other agency we have dealt with has been the Jewish Federation. They have provided family services and scholarships for Max. I’m sure many community churches provide this support as well.

How did you find about the above services?

        When we first started noticing that something was different about Max, we went to dozens of doctors. We had multiple opinions on a diagnosis and were left feeling most confused. To be honest, the doctors only really gave me prescriptions. Funny enough, they were always willing to do that. Almost all of my resources came from other parents of exceptional children. I met so many parents just sitting in waiting rooms of doctor’s offices. My resources quickly tripled into friends of my new friends, and even their friends.            

            I also did a lot of online research. It felt like days at a time that I was at my computer. The services I found online were not always reliable though. I would definitely say that the other parents were my best outlets for information. Besides introducing me to different services, we offered each other much needed support and advice.

What financial burden, if any, are you experiencing?

The financial burden started the minute that I felt that there was something not right with Max. It progressed even further once we started searching for a diagnosis. Then came all of the different therapies (social skills therapy, speech therapy, etc.). Tutoring is a big financial burden as well. We were not forced to do these things, but if we had not paid out of pocket for these extra things, my child would not be where he is right now. Realistically, we should have done family therapy too, but we just couldn’t afford it. Once again, the rest of my family got the leftovers. Some insurance plans don’t cover these things. If at all, it’s minimal. If you don’t have money, your child may regress or stagnate. This dilemma almost forces you into debt. Everyone wants the best for their child. The financial burden seems to be indefinite for our family. We sacrifice so many everyday luxuries to provide Max with the best resources.

What other information do you want to share?

I think that I would want teachers to know that you can’t take square peg and make it fit into a round hole. Max learns differently than other children. Every child learns in a different way and at its own unique pace. It is so important to take the time to determine if your students are auditory, visual, or tactile learners. You can change a child’s life by doing these little things. You can change a child’s life by having them come in at lunch and recess to practice. If you’re going to take the time to do anything worthwhile, take the time to change a life because we are all capable of learning. It just might take a little longer to do it. Being Mildly Mentally Retarded does not mean they are incapable of success. You can’t let yourself forget why you became a teacher. 

Blindness - Emmy Dokulil

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

I feel so lucky to be Taylor’s mother.  She has taught me so many things about life, perseverance, strength, and determination.  I never really knew the meaning of those words until she showed me what they meant.  Taylor was born almost completely blind. As a baby, she wasn’t responsive to visual stimulation and it took an abnormally long time to crawl.  As soon as we noticed that something might be wrong, we took her to the doctor.  I have never felt anything so painful than the moment the doctor told us that Taylor was blind.  I just started crying and I felt so helpless.  Of course the first thing I asked was how this happened.  He said that it may have happened during birth and that it was nothing I could have done to prevent it.  After a few days, I realized that I needed to stop feeling sorry for Taylor and learn how to deal with this.  I researched and found many resources, organizations, and support groups, which have helped tremendously.  Even though she can only see light and outlines of figures, Taylor has shown me that she can do anything she puts her mind to.  Of course there are days when she gets down or frustrated, but she always finds a way to bring herself back up.  Taylor is now in 3^rd grade and uses a white cane and seeing eye dog named Felix.  It took a long time to master use of the cane and Felix, but she has accomplished more than I ever thought possible by her age.   I have learned how important it is to have high expectations for Taylor and to let her know that we believe in her, so she will in turn believe in herself. 

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

Physically, Taylor looks the same developmentally as any other 8 year-old.  Obviously her eyes are not physically the same her peers, but that’s about all that’s different.  Socially, Taylor has had a rough time.  When kids, and even adults, see her with her cane and or Felix, they look down or walk the other way.  It is so hard for me to see that.  Taylor is well aware when this happens because she hears and senses everything.  It breaks my heart because she’s an amazing child and not many children try to get to know her.  Emotionally, Taylor feels loved by her family and the few friends she does have.  She, however, often gets moody or has breakdowns because everything is so much more difficult for her than for her sighted peers.  As she gets older, I know she feels alone in her struggles, and all I can do is tell her that she’s not alone.  We struggle with this all the time.  Taylor is way more mature than other children her age.  She has had to go through so much in the short time she’s been alive.  She has been forced to grow up fast and learn to overcome seemingly impossibly obstacles.  She has learned Braille, learned how to use a cane, and has helped train her dog Felix.  She has an, “I can do anything” attitude and really believes in herself.  Academically, she is where she needs to be at the 3^rd grade level.  Taylor has had to overcome so many obstacles in school, and she has a lot of help from her special educational assistant and other resources through her IEP program.  She has a wonderful assistant who helps her progress toward the goal of independence. 

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

There are many professionals and agencies that have been a great help to us.  The most helpful are the National Federation of the Blind, Blind Children’s Resource Center, Individualized Education Program (IEP) at school, Guiding Eyes for the Blind (seeing eye dog program), National Organization of Parents of Blind Children, American Printing House for the Blind, Exceptional Teaching Aids, and the American Foundation for the Blind.  We have also found many resources and reading tools at the Resource Center for Special Needs.  Our entire family goes to the National Convention of National Federation of the Blind every year where there are over 2,500 blind people.  It is an amazing experience every year.  We have met so many blind people that have accomplished so much.  These people really inspire Taylor to push herself to always do her best and to know that she can do anything!   

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

Taylor’s teacher and special educational assistant have helped us find many services.  They pointed us in the direction to the Resource Center for Special Needs and they have given us everything we needed.  They have provided us with Braille material, books on tape, and so much more.  I have also found out so much information online, including information about the annual convention.

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

Because Taylor’s loss of eyesight has been deemed irreversible, we are not experiencing much financial burden.  No surgery or medication can help get her sight back.  Although our insurance is a bit pricey, we can afford it and it covers her check ups.  When she was younger, she did rehabilitation sessions weekly, but now she only goes monthly which has cut down the cost.  She will eventually lose all of her sight, but rehab helps slow the process down.  We have had help through programs and grants.  For example, we got her white cane for free online from the National Federation of the Blind website.  We got Felix for a minimal fee through Guiding Eyes for the Blind.  All of our reading materials are provided through the school or through the Resource Center for Special Needs. 

f. What other information do you want to share?

When I found out that Taylor was blind, I thought it was the end of the world.  I can’t put my devastation and fear into words.  I constantly worried about how we were going to get through this and teach her everything she needs to know to survive in this sighted world.  Unexpectedly, Taylor has been the one to get us through everything.  She has shown me what she is capable of.  I have learned that you can’t baby your blind child.  If you baby them and keep them sheltered, they will not be able to achieve independence.  They are capable of so much more than we think.  I have learned to let her explore things on her own and she learns so much more that way.  I’ve learned that there are a lot of people who are scared of the unknown, but there are a lot of good people who offer help and support.  Through her strength, Taylor has made me the mother, wife, friend, and person that I am today.       

My son Charly...(Hector Luken)

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

It was difficult at first to accept my child’s disability.  I wondered what went wrong during the pregnancy.  Was it something that his mom did or was it because I smoked that caused my son’s disability?  I felt bewildered and confused because I did not understand why my child was different from other children.  He looked the same as other children, but his intellectual ability was limited.  It is difficult and challenging each day, because of the need to shelter my son from the world.  I want to be constantly protecting him from insensitive sarcastic people.  My son often needs help with basic things, like dressing and eating and showering.  He is able to do these things, but needs supervision and help.  One the greatest challenges I have faced as a parent is limiting his potential because I allow his disability to limit my expectations for him.  I have attended Individualized Education Plan (IEP) meetings every year and have had to take a proactive roll in my son’s education.  My son is also ill, more frequently, than other children, and sometimes he also has behavioral problems at school.  I work closely with the school staff to ensure that I am doing everything I can as a parent to ensure that my child is receiving a fair and equitable education.  Being a parent of a child with moderate mental retardation means being an advocate 24 hours a day, 7 days a week.  One of the best things about my child is that he constantly teaches me patience and I am constantly learning so much about the human spirit.

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

My son physically looks the same as any other child his age.  Intellectually he is different from other children his age, because he cannot understand abstractions.  He is a bit immature and his behavior can sometimes make it difficult for him to make friends.  He is not aggressive, but he is sometimes very impulsive and can be pushy at times.  He is gullible for his age and we constantly have to remind him to beware of strangers.  He is able to do basic math, such as addition and subtraction, but only single or double digits.  He gets easily frustrated when he is unable to understand something so we must be patient when teaching him new concepts.  He likes to do independent things, like wander alone into the toy aisles in the store, but we must monitor where he goes, because he can easily get lost.  He likes to talk to other children in the school that are general education, but I do notice that some students in the general education population hesitate and often ignore him.  In terms of health, he does have some health problems.  He is seen every three months by his physician for a kidney condition he has since birth, a thyroid condition recently diagnosed, and also to monitor his hypertension.  He does miss school frequently when he is not feeling well. 

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

My son belongs to the San Gabriel Valley Regional Center.  This agency provides services to children and adults with different disabilities.  The agency was recommended by my son’s special education teacher.  My son has a coordinator that follows my son’s yearly progress and evaluates what goals he has reached that are listed on his IEP plan.  The regional center has lists of support groups for the family and also provides legal and medical facilities that specialize in matters related to people disabilities.  My son and family are provided with lists of community programs that provide special services to people with disabilities (i.e. summer camp, volunteering, community walks, etc). 

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

The regional center was recommended by my son’s special education teacher.  The California website also lists a number of centers that are located throughout the state and are divided according to county.  The regional center can also refer their clients to different government programs that provide monetary assistance to people with disabilities.

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

The greatest financial burden is when my son gets sick.  Sometimes trying to find specialists to treat his physical medical condition, which the doctors say is unrelated to his developmental disability, can be economically burdensome.  The regional center offers many programs free of charge and the public school my son attends often times pays for the services my son receives (i.e. transportation, evaluation/diagnostic services).

f. What other information do you want to share?

I think we often times face a difficult challenge when we have a son or daughter with a disability.  We are eager to protect and shelter them from the world that at times can be insensitive and cruel.  I think it is a great disservice when we shelter our children to much.  I am always amazed of the things my son teaches me every day.  Patience, by far is one the many things I have learned to embrace and have learned to appreciate.  In my son, I find the courage daily to stand up against inequity.  As I immerse myself in my son’s life and his world, I continuously discover his greatest gift to me—that of unconditional love.

Visual Perception Disorder- Ashley Graham

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

My son, Braden, has visually perception disorder. He was first diagnosed with this a year ago when he was in third grade. When he was growing up he always had perfect vision. Still to this day he has perfect vision. Having visually perception disorder does not mean you have poor vision. It affects the way the brain perceives and processes what the eye sees. As a parent it is very difficult to see your child struggling in school and getting frustrated in math and reading. When we are at home working on his homework, Braden always wants to give up on homework because he is having a hard time with math. For Braden it takes longer than the average student to finish his homework. Braden is always crying to me saying, “Why am I stupid”. I always tell him that he is not stupid and that he is a very intelligent little boy. To keep Braden positive about himself I always need to praise and give him positive reinforcement. Since Braden has been diagnosed with visually perception disorder, each day has gotten better. I keep telling him that he is a unique individual and that it just takes longer for him to do things. I will always love him no matter what happens to him.     

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

Braden is physically developing the same as his other friends. He is a fun, loving, energetic, and silly little boy. He loves to be around his family and friends playing with anything he can. His favorite activity he loves to do is play cars with his dad. Braden also loves being outdoors and going camping with the family. Another thing he loves to do when he is playing outside is ride his bike. Braden is also physically built the same ways as his fellow classmates. He is an average boy with similar weight and height as his classmates.

When it comes to academics he is behind most of his classmates. He struggles and puts more effort in to his work because he has visually perception disorder. Braden has a hard time in math, writing, and remembering visual images. When the teacher instructs the classroom on a math lesson he becomes disengaged because it is hard to focus on the board. When he has the notes in front of him instead of looking at the board it is easier for him to understand what is happening. Braden has a short attention span and can be disengaged in the lesson very easily. One day Braden is able to understand what to do, but then the next day he will forget. My husband and I take it day by day to help Braden out as much as we can. Other than his difficulties in school, Braden is the average fourth grader. It just takes him a little longer to do things than most fourth graders.

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?

When Braden was first diagnosed, my husband and I were very fortunate that he had an amazing teacher that worked with us to get the best services for him. Pre-diagnosis, Mrs. Roybal his third grade teacher was very concerned for him because he was showing signs that he was not recognizing the letters and not able to focus on the board. So one day after school she pulled us aside to discuss what was happening with him. She told us that she was concerned he might be falling behind in school. Mrs. Roybal advised us that maybe we should take him to the doctor to get his eyes checked out. The doctor said that Braden had perfect vision. So he decided to run some tests on him and found out that he had visually perception disorder.

After we found out that Braden was diagnosed with visually perception disorder, his teacher Mrs. Roybal talked with the RSP teacher and was able to get him an IEP plan. By having the IEP plan Braden is able to have special accommodations in the classroom. Some of the modifications that Braden gets is he is able to take the test longer or the test is read to him. Braden is able to have everything enlarged so it is easier for him to read the material. Also, Braden as a therapists that pulls him out of class once a week to work with him on different techniques to help with his eyes. I am very thankful that Braden had a great teacher when he was diagnosed because she was there for us and she spent a lot of time working one-on-one with him.  

When we are at home I also have materials that will make it easier for him. I have dark bolded line paper so it is easier for Braden to write and work on math. Also, once a week we have a tutor that works with Braden on math because that is his worst subject. When I first found out that he was diagnosed Braden’s doctor referred me to a support group where other families had a child with this disorder. I believe this really helped out because they gave us a wealth of information and ideas on what to do with Braden. The internet also, has been a great resource for finding information on visually perception disorder.

What financial burden, if any, are you experiencing?

My husband and I have been very fortunate that we have not spent a lot of money on Braden disorder. By having an IEP for Braden the school has been paying for his material and even his therapists that work with him once a week. If it was not for the school we would have to pay a lot for Braden. The only thing we pay for is his tutor which is $100.00 dollars a week. That can be costly, but it is well worth it in the long run because it has really help Braden improve in math. Also, we pay for some of his materials that we keep at home but that is not too expensive. The last thing that we pay for is his doctor visit, which we only have to pay for his co-pay because of out insurance we have. We have lucked out on the amount of money that we have had to pay on Braden disorder.    

What other information do you want to share?

 When your child is diagnosed with visually perception disorder you must realize that all children learn differently. When my husband and I first found out that Braden was diagnosed with visually perception disorder we had to try many different therapies until we found the best one that worked for him. You need to realize it takes time to find what works best for you child. Also, you need to be patient with your child as much as possible. You do not want to show your child that your frustrated because then they will reciprocate. Once your child is frustrated they will want to give up. Seek the proper support network because they are very beneficial and will be there to help you as much as they can to make your child succeed in life. Even through your child is diagnosed with this disorder this does not mean they are going to be unsuccessful. Once we found what worked for Braden it is getting easier each day. He knows what to do when he is struggling. Remember to love you child no matter what and be very positive around them.

Glogster:

http://argraham.glogster.com/visual-perception-/

Lucy-Cerebral Palsy-Lori Clark

How does it feel to be the parent of your child?
    Lucy came into our lives rather unexpectedly.  She was born 6 weeks premature and her birth was a very difficult one.  The doctors believe she was without oxygen for an extended period of time.  When Lucy turned 6 months old, we realized that her movements were abnormal and she favored one side of her body.  She was diagnosed with Spastic Cerebral Palsy.  We were devastated to learn that our perfect little girl would not be able to run and play like other children.  We were also surprised to find out that nearly two children out of every thousand born in the United States  have some form of cerebral palsy.  Although there is no cure for Cerebral Palsy,  Lucy is expected to have a normal life span.  The only thing we can do is become her advocates and offer her as full of a life as we possibly can.

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

     Lucy is an extremely bright and social child who excels academically.  Her challenge is a physical one.  "Cerebral" refers to the brain and "Palsy" to a disorder of movement or posture.  Children diagnosed with Cerebral Palsy have an inability to fully control motor function, more specifically muscle control and coordination.  Lucy has been diagnosed with Spastic CP which is the most common type of cerebral palsy. It causes the muscles to be stiff and permanently contracted. Spastic cerebral palsy is often subclassified as one of five types that describe the affected limbs. Lucy suffers from Hemiplegia which affects the limbs on only one side of the body.  She walks with a walker and often tires from compensating for the side that has been affected.  

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

        Lucy has quite a few health care professionals on her team.  Her pediatric neurologist leads a group of professionals that include:  

         - An Orthopedist who treats her for muscle, tendon, and bone problems.

         - A Physical therapist that works with her to improve her movement and strength.

         - An Occupational therapist to help Lucy learn life skills. 

How did you find out about the above services?

     A Social worker assists our family in obtaining community assistance, education, and training programs.  As Lucy's advocates, her father and I do extensive research on the internet and have joined the local Cerebral Palsy support group.  
Please visit my PortaPortal for further resources at Cerebral Palsy Resources

What financial burden, if any, are you experiencing?
     Medical costs are the primary expenses in raising a child with Cerebral Palsy.  Fortunately, our family has wonderful health benefits that cover a majority of Lucy's medical expenses.  Although it covers most of Lucy's care, there are many fees that we are responsible for.  We have had to make modifications to our home and vehicle in order to better accommodate Lucy's needs.

What other information do you want to share?
  The most important thing for a parent of a child with Cerebral Palsy is to become educated.  One way to do this is ask as many questions as possible.  This is a link to a thorough list of questions a parent of a child with Cerebral Palsy needs to ask their doctor: Questions for the Doctor
  Please visit my Glog for additional information as well: Cerebral Palsy