Asperger's Syndrome (Amanda Albright)

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

Although many difficulties come with raising a child with Asperger's, my 5 year old daughter, Jane, has positively impacted my life in more ways than I could have ever imagined.  She is extremely intelligent, uses a wide range of vocabulary, and has an extremely impressive long-term memory.  However, it can sometimes be hard to have a child that is unsocial, prefers to be alone, and shows little to no empathy.  Our family has learned to adapt and make modifications to our daily life in order to best suit Jane's special needs.  For example,  I have created a daily schedule for Jane that hangs in our kitchen.  Jane and I plan her day on the previous evening using pictures that show the order of the days events.  For example, a days schedule might include a picture of a school, then a house, then homework, and then a soccer-ball for her siblings soccer game that she must attend.  This helps her to avoid behavioral outbursts and frustrations.  Because of her antisocial tendencies,  I arrange for one friend to come over a few times a week to play.  Her friends typically bring Barbies or dolls.  The type of role playing and imaginative play that is involved when the children come over with these toys help Jane to imagine the thoughts and intentions of others.  Our family also makes a point of watching movies together that highly focus on friendships and evoke strong emotions for Jane, such as Toy Story.  I have also enrolled Jane in a child's gym class that helps her to work on her coordination and movement, since she is far behind her peers.  Jane's intense interest in horses has helped us to schedule outings and activities that encourage social interaction and considering multiple perspectives.

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

Jane is more advanced than her fellow students in regards to vocabulary and overall cut and dry knowledge and instruction.  However, her abilities begin to lag when it comes to motor skills, emotions, language, behavior, social interactions, thinking patterns, and play.  Jane's poor coordination sets her apart from other children because of her catching, throwing, and kicking ball skills.  She also isn't as aware of her body as other children, which contributes to her poor coordination and clumsiness.  Her writing is also very sloppy, revealing a delay in fine motor skills.  Jane is also developmentally different from other children when it comes to emotions.  She lacks the ability to think from another's perspective and feel empathy.  Something that might slightly bother other children, will severely upset Jane.  Although I previously stated that she has an extremely wide vocabulary for a kindergarten student, she has much difficulty understanding metaphors and other figures of speech.  However, Jane's Asperger's is most apparent when she is placed in social situations.  She secludes herself from the others, makes inappropriate remarks and comments, displays little to no facial expression, uses little to no body movement and hand gestures, and makes limited eye contact.  Whenever she plays with her friends she has a hard time sharing, can throw fits or tantrums if she can't control the situation, and has no concept of appropriate social behavior.  While Jane takes interests in certain things like other children, she becomes intensely obsessed with one or two topics.  Right now she is obsessed with horses.

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


We have found it particularly beneficial to have Jane formally diagnose with Asperger's so that her school and teachers take her disorder more seriously.  We did this using a clinical psychologist.  The psychologist evaluated Jane using a review of her past academic achievement, behavioral analysis, an interview with myself and my husband, as well as an observation of Jane interacting with others.  Because of Jane's disorder, she can qualify for special education, although we have not receive any special services at this time.  I have requested a Section 504 meeting with Jane's principal in order to determine whether or not she will receive special accommodations and modifications in her educational career.  At the meeting, I will have to present a case as to why Jane is eligible for special services, should she need them.  These special services can be as small as providing us with an extra set of text books to keep at home, or as detailed as allowing her to wear ear plugs, have extra time to complete exams and writing assignments, or being able to use the computer to complete assignments.

How did you find out about the above services?


We were referred to a qualified clinical psychologist from our family's pediatrician.  While the pediatrician is also capable of diagnosing Jane, he can not provide treatment.  Our clinical psychologist recommended that we request the Section 504 meeting as early as kindergarten so that services are readily available when we feel Jane needs them, since the process may take some time.

What financial burden, if any, are you experiencing?


At this time, Jane is not attending behavioral workshops.  However, this may be an expense that we incur in the future if our family feels as though it's necessary for Jane's social development.  As I previously said, she is enrolled in a child gym class.  It's not very expensive and is used by many socially adjusted children.  Therefore this expense may not be directly attributed to Jane's Asperger's.

What other information do you want to share?


It is difficult for other parents to understand Jane's behaviors and use of language when they see her interacting with their child.  Although at some times it may be embarrassing or an extra burden, the progress Jane has made since the year of her diagnosis has made everything worth it.  She has come a long way already, and is thriving academically in school.
My Glogster-http://amanda3688.edu.glogster.com/aspergers-syndrome/

Pervasive Developmental Disorder- Not Otherwise Specified: Brittany Bibeau

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

          My son Noah is 5 years old and was diagnosed with Pervasive Developmental Disorder Not Otherwise Specified, or PDD-NOS, 2 year ago at the age of three.  When Noah was about 2 ½ years old, my husband and I noticed a speech delay and through recommendation from our pediatrician, we got him evaluated at the Regional Center of Orange County.  The regional center approved 2 hours of speech therapy and once they started doing therapy, there were some problem behaviors that were interfering with speech so they recommended an increase in hours to include behavioral therapy.  When Noah turned 3, we received a diagnosis from a neurologist saying that he had PDD-NOS.  From there, he received an IEP and was placed in a SDC (special day class) 4 days a week. An SDC is basically a special needs preschool class.  With Noah’s social skills still lacking, at the age of 4 we put him in a social skills group through the Children’s Learning Connection.  He is now just about to finish up his kindergarten year.  It has been a little difficult for Noah at school because of various reasons related to PDD-NOS.  First, let me explain exactly what it is.  Pervasive Developmental Disorders are all “types” of Autism.  PDD-NOS exhibits some characteristics of the classic Autism like difficulty socializing, repetitive behaviors, heightened sensitivities to certain stimuli, appears unemotional when interacting with peers, trouble with eye contact, and trouble transitioning from one activity to the next.  What makes PDD-NOS different from Autism is that while a child may show these symptoms, they do not fulfill the requirements enough to classify it as Autism. PDD-NOS is basically diagnosed by a process of elimination after examining all the other “types” of Autism.  Children with PDD-NOS usually start having difficulties at a later age (like 3 or 4) and while they might have the same challenges as a child with Autism, they might not be as extreme.  However, every child with PDD-NOS is not going to be the same; every child has a different case.  With Noah, he has difficulty socializing, transitioning from activities, repetitive behaviors (especially in play), is speech delayed, and has difficulty holding eye contact.  What is difficult for me personally is having to deal with people who don’t understand.  They see Noah as “misbehaving” when he can’t pay attention or not following directions of moving on to the next activity.  It makes it even more difficult because while some people know the behaviors of a child with Autism, PDD-NOS does not exactly fit the criteria so others cannot pin point why he is acting a certain way. People are just very judgmental and insensitive because of incomprehension or plain ignorance. 

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

          Noah’s social skills have tremendously improved since the social skills class, but he still has a hard time watching a group of kids and figuring out the big picture of what they are playing, i.e. watching a game of tag and figuring out who’s it, how they tag each other (lightly, not hitting) and the general rules of the game.  When he is playing with the kids, he’s able to play with them nicely in a small setting, but in a large setting he shuts down. When he is one on one with another kid, he just models the other child’s behavior instead of coming up with his own.  He has a hard time coming up with his own play ideas. In the classroom, he has a hard time with the comprehension questions and following multi step directions.  Physically, however, he is developing the same as other children.

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

We dealt with the Regional Center of Orange County to get that first evaluation and are now working with the Children’s Learning Connection, which is basically an agency that provides therapy in various categories for children with Autism or Autistic tendencies.  There are also support groups for parents of children with PDD-NOS and other Autistic Spectrum Disorders or ASDs. 

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

          My pediatrician told my husband and me about the regional center. The regional center then told us about the Children’s Learning Connection.  There is also a lot of information on the internet, telling about what kinds of services there are and where to find them. 

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

          While my insurance pays for the one hour a week private speech therapy with just a co-pay to worry about, the private social skills group provided by the Children’s Learning Connection is not covered and is 100 dollars a class.  Classes are normally an hour long.

f. What other information do you want to share? 

          PDD-NOS is sometimes referred to the miscellaneous category when referring to ASDs.  When a child doesn’t fit any of the specific autistic labels, it is then decided that they have PDD-NOS.  This can be hard on the parents of children with PDD-NOS because there is just not a lot of information out there, especially compared to all the information regarding Autism.  Also, remember to be understanding when it comes to how a child is behaving; it’s not necessarily bad parenting.  A parent with a child who has special needs is going to have extra stress in their life from trying to work with their child, understand their child, and give them the best life possible.  It can cause strain on a marriage, like it did for mine at the beginning. My husband and I had different views on what was going on with Noah when symptoms first started. I saw Autistic tendencies, while my husband refused to believe our child had Autism, a trait I hear is very common among parents of children who have ASDs. We eventually got over those different views and just focused on what we needed to do so that Noah could life as much as a normal life as possible.

http://bbibeau.edu.glogster.com/pervasive-developmental-disorder-not-otherwise-specified/

Aphasia: Samantha

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

      Having a child with aphasia is one of the most heartbreaking and frustrating things you could possibly imagine.  My 10-year-old son, Easton, was born a beautiful and healthy boy.  Life couldn’t be more perfect.  That is, until one rainy day in October when Easton was in the third grade.  We were driving home to visit family up north, when out of nowhere the car in front of us slammed on their breaks on the freeway.  My husband slammed on his breaks, but the slippery road was not able to stop us in time.  Our car collided full force into the car before us, causing my son’s head to crash into the side window.  While I am thankful that he is still with us, the injuries to his head have caused aphasia, drastically changing his, and our, way of life.

     Since the day of the accident, Easton’s life has been completely altered.  My son, who had excelled in school prior to that October, lost the ability to understand words and use language.  As a parent, there is nothing more devastating than to see your child go through this.  I couldn’t even have a conversation with my little boy anymore.  The doctors told us that when he hit his head, there was great damage done to the left hemisphere of his brain, which controls understanding of word meaning, formulation of spoken and written language, and word usage. 

     Also heartbreaking, is that there is no cure for aphasia.  All we can do is constantly work with him on saying and understanding words by using flashcards or games and with consistent repetition.  It is very tiring and so much more work than the easy conversations we would have before.  It’s almost like having a baby again but even more difficult.  No matter how hard it is, I would do absolutely anything for my son.  He also sees a speech therapist, who really works on his speech with him.

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

     While Easton was above average before the day of the accident, he now has a great deal of trouble with any form of communication.  He is by no means at the ability of his peers in his 5^th grade classroom.  Easton has fluent aphasia, which can also be called receptive aphasia or Wernicke’s aphasia.  This means that his specific case has the most difficulty with auditory comprehension, as well as word finding, confrontation naming, and reading and writing skills.  Fortunately, his speech is fluent, but he can only get to the point in a conversation, missing many specifics.  We are happy that he is still able to be in the general education classroom, as we believe that interaction with his peers is best to aid in the progress of his communication skills.  Almost all of the children knew him before the accident and are more than understanding of the implications of the disorder, and are extremely helpful.  Easton has anosognosia, which means that he is unaware of his communication errors.  We sometimes debate if this is a good thing or bad thing.  Overall, Easton is probably kindergarten level or lower compared to the rest of his 5^th grade class.  While this is devastating, we celebrate each day’s progress.

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

     Immediately after the accident, when figuring out what had happened, we spoke to a variety of doctors, primarily neurologists and physical therapists.  After this life became normal to us, we hired the person that Easton visits on frequent basis.  This is his speech-language pathologist, Kerry.  Kerry helps Easton with all areas of communication, as well as helps him deal with his disorder.  She sees him a few times a week and is vital in his academic and social progression.  Now that he is back in school we often speak with the special education specialists, at the school and district level. 

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

     After Easton’s accident, we did a lot of research on his condition.  Things we could do, people we could talk to, everything.  The website aphasia.org offers a variety of specialists for this impairment in regards to neurologists, occupational therapists, physical therapists, physiatrists, psychologists, social workers, and speech-language pathologists.  This was extremely helpful to us.  Our doctor also gave us good insight as to who would best suit him and our family.

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

     Having a speech-language pathologist has become very expensive, as necessary as it is.  Easton sees Kerry twice a week, and sometimes more if he needs it.  SLP’s vary in price but average at about $100 an hour if done through a private business, and often more through a hospital.  Our insurance covers some of this, but not nearly enough.  Some families have to end their work with their SLP when third party reimbursements run out.  The aphasia website gave us more details as to what we can do, if for some reason we can no longer afford it.  One idea of this is to possibly volunteer for a clinical trial or research project.  We have also kept in contact with the families of other children who are going through this same issue. 

f.  What other information do you want to share?

     What makes aphasia so difficult, is knowing your child’s prior behavior and then seeing them struggle to make sentences.  This condition can happen to anyone one at anytime for a variety of reasons, changing their lives forever.  We are so lucky to have an amazing speech-language pathologist as well as an incredible teacher who truly works with Easton and wants to see him succeed.  They find ways to make him learn.  For example, visuals with short sentences and facts help him so much more than an informative paper would.  Any child can succeed and grow with the right amount of love and support!


http://sammyrae723.glogster.com/aphasis-samantha-block-22/

Dysgraphia (Carly Rohrbacker)

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

Emma is a sweet, caring, outgoing girl, and we are so proud of her. She is fantastic at public speaking, and so persuasive! She is also extremely musical. She started piano lessons at age 4 and has been playing ever since! She loves it! I point these things out because we have taught Emma not to define herself by her shortcomings. When Emma thinks about herself, we want her to see the sweet, confident girl, the outstanding pianist and caring older sister that we see. Since Emma’s difficulty writing has caused her so much trouble in school, it has been amazing to see her gain confidence from blossoming in other areas. She has lots of friends and is very confident in all other areas, but her dysgraphia has caused her a lot of pain and frustration. As her parents, we have done everything we can to ensure her success, but it is sometimes frustrating. Dyslexia is a well known learning disability, but dysgraphia is less known. Because of this, it was difficult to diagnose, and it is sometimes hard to get teachers on our side. Our daughter’s disability is much more than carelessness and sloppiness, but some people have a hard time understanding that, which only frustrates Emma more. In the past, it has made me angry, since I do not like to see people blame my daughter when I know that she is trying so hard. Now that we have progressed more in helping Emma, however, things have gotten easier. Emma also has had excellent teachers the past couple of years.

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

Emma understands so much more than people often give her credit for. We saw this from a very young age. In Kindergarten and first grade, Emma had extreme difficulty making letters and words. Sometimes, she would only write half of words, creating unintelligible lines of print. Sometimes, her letters would be completely smashed together so that no one could read them, and sometimes, they would be spaced apart the wrong way.  However, when asked to orally spell words, Emma always got them right. She had a perfect understanding of the content she was being taught at school, but she absolutely could not express her understanding in writing. Math proved difficult for her as well, especially when she began to learn two-digit addition and subtraction. She struggled with lining the numbers up. For a long time, we just couldn’t understand why Emma had so much difficulty transferring her obvious knowledge onto paper, both in math and writing. She grew frustrated, and we did too. Even today, now that Emma has received help and has learned strategies to cope with her learning disability, she struggles at times. Writing is always going to be a bit of a struggle for her. Regardless, our little girl is extremely intelligent! She has a memory like a sponge and can orally explain absolutely everything she learns at school. Emma has just as much knowledge as children her age, or maybe even more, but she has difficulty with writing at her grade level.

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

When Emma was in second grade, her teacher felt that she might have a learning disability. She called for a Student Study Team to determine what could be done for her. Testing revealed that Emma has dysgraphia. The school has provided Emma with support for her writing difficulties. Emma’s teachers accommodate her needs, providing alternative assessments occasionally, such as oral reports and tests instead of written ones. They also provide her with special pencil grips and paper to help Emma write more easily. As Emma has moved into the older grades, her teachers have worked with her on learning to edit her own work. Emma has developed a checklist of things to go over when she is done with a piece of writing. Sometimes, Emma works at a different pace or has a less extensive writing assignment than the rest of her class.

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

As I mentioned before, Emma’s second grade teacher was really instrumental in helping us find assistance for Emma. She truly believed that Emma’s issues with writing stemmed from much more than just laziness and sloppy penmanship.

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

After we found out about Emma’s dysgraphia, we invested in a Write Track, which was not incredibly expensive, but helped Emma immensely in organizing lines of text. It is a relatively simple plastic tool that has a window showing one line at a time for the child to write in. Emma enjoyed using it at first, but she no longer needs it. We also invested in the software program PointScribe, which was more expensive. This helped Emma with letter formation. Although Emma was in second grade at the time, we had noticed that she was forming many of her letters incorrectly. We try to stay up to date on developments in writing aids. In third grade, Emma’s teacher recommended a tutor to us. The tutor is a retired teacher who actually spent most of her career teaching students with learning disabilities. She has a lot of experience with children who have dysgraphia. Emma’s tutor works with her once a week, and Emma really loves her. She charges $30 an hour, which is a small price to pay for the help she provides Emma.

6.  What other information do you want to share?

 Children with learning disabilities are not “slow” or “stupid.” Emma has dealt with a lot at school – frustration, kids calling her names, and all the rest. Emma’s first grade teacher, though she was generally a good teacher, did not understand Emma’s disability, and made Emma feel guilty because she could not write correctly. If you think that your child has a learning disability, do research! Don’t keep silent, and get help! Also, embrace all the unique strengths that your child has. Emma is a fantastic musician, very social, and a caring friend to many. We have really tried to build up her confidence by reminding her of what she’s good at, and of the fact that she really is smart! I really think that Emma has benefited from her learning disability, because she has learned how to work hard and overcome obstacles. I tell her how proud I am of her every single day. In many ways, my daughter is my hero.


My Glog: http://ccr321.glogster.com/dysgraphia/

ADHD

My name is Melissa, and I have a son with ADHD. My son's name is Michael and he is 7 years old.

a. How does it feel to be the parent of your child?
    I love my son and I am so thankful to have him, sometimes I just wish that I could better help him. As he has gotten older he has gotten more active, energetic and stronger. He honestly has gotten harder for me to control. Many days I feel myself being frustrated and wishing there was something more that I could do.

b. How is your child developmentally the same or different from other children at the various ages?
    My son is just like any other child... He has the same wants and needs, with just a little more energy. It is very important for me as a parent to make sure that my son is experiencing the same things as every other child. I have noticed some differences between him and other children since he has started school. When he was just home with me I could plan our day to his specific needs and make sure we were doing enough physical activity to keep him interested and engaged. I know that his teacher has a hard time planning his day to be specific to him since there are lots of other children in his class, but the fact is that he needs the extra attention. From talks with Michael's teacher I found that he does best when he has specific directions and opportunities to get out of his chair and be active.

c. What professionals/agencies do you deal with? What services are available to you and your child?
    As a parent I really turn to the National Resource Center on AD/HD. It is my automatic go-to organization and always seems to have the information that I need. I do wish there was a support group for parents or something like that. I know that there is a support group for adults with ADHD, but I wish I could network easier with parents who are in the same boat as me. I do however, do some communicating over e-mail and through forums.

d. How do you find out about the services?
    I am just one of those parents who automatically pick up the computer and look online for resources and information. I found out about lots of the services and resources available to me through searching the internet. I have also read many books and get a monthly magazine called ADDitude which is geared towards families with ADHD members.

e. What financial burden, if any, are you experiencing?
     I am currently not experiencing any extra financial burden caused by Michael's ADHD. My husband have talked about looking for a special school for Michael or possibly providing him with home school so that I could make sure he is getting a more personalized day. If we chose to take him out of the public school system we would have the financial burden of tuition.


f. What other information do you want to share?
      I just want to share that Michael is like tons of children in America. He is not just the mis-fit boy who  is always causing trouble and can not seem to sit still. ADHD is a diagnosed condition and he is in special need just like any other child suffering from a type of disability.

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. 

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