Special Needs: 3 Emotions it's Okay for Moms to Feel | iMOM

First of all, I need to once again apologize for my lack of posts on this site.  For a year and a half I had agreed to a full time substitue teaching position.  Between that and parenting my two children with special needs, I literally had very little time for anything else, but to remember to breathe.  Because of this, I find the article that I am posting about even more relevent.

Below is an article, Special Needs: 3 Emotions it's Okay for Moms to Feel iMOM, from the blog iMOM that I feel is a must read for all parents with children of special needs.  We, as parents of these children, often expect more from ourselves than those of children without special needs.  As the article states, there is an added layer of complexity to being a parent of our children.  Please read the article to find out more about the 3 emotions we are ALLOWED, and have every right, to feel:  tired, discouraged and sad, but more importantly, some tips to help us through those emotions.

Special Needs: 3 Emotions it's Okay for Moms to Feel iMOM

Triennial Meeting - IEP vs 504 Plan

Thursday we had Madison's Triennial meeting along with her IEP meeting.  As much as I know the goal is for the child to place out of special education and no longer need services, at first, I was hoping that my daughter would still qualify.  I wanted her to have the option to receive pull out services if she needed them, as well as maintain her current modifications.  However, as I began to think about it, I realized that it would be okay if she didn't qualify, because she could still receive a 504 plan for the remainder of her school career....even through college.   Many parents do not realize that if their child tests out of receiving special services that they are still eligible for a 504 plan, allowing them to continue to receive their accommodations.  As stated in the article "A Parent's Guide to Section 504 in Public Schools" 

Section 504 states that: “No otherwise qualified individual with a disability in the United States, as defined in section 706(8) of this title, shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance...”  

Because a person with a disability is anyone who:  " (i) has a mental or physical impairment that substantially limits one or more major life activity; (ii) has a record of such an impairment; or (iii) is regarded as having such an impairment” a child that "tests out" of services, but would still benefit from accommodations can and should receive a 504 if they no longer qualify for an IEP.  As well as including specific learning disabilities, a child may also receive a 504 for medical conditions such as diabetes, epilepsy, allergies and for my EOS followers, it would include eosinophilic esophagitis as well.  If one of these issues are impeding your child's ability to perform in school, they should qualify for a 504.  The purpose of this plan is to level the playing field for our children.  What sense does it make to phase a child out of their IEP and give them no support afterward?  It is in your child's best interest to know which accommodations will benefit them while they work toward a complete phase out.

As for Madison, it didn't end up making a difference.  After struggling with the decision to have her privately tested again or letting the school do it, and then thinking about what to do if she didn't qualify, she did...in reading, writing and math.  However, her resource teacher was shocked about the math, saying that she knows Madison knows how to do the problems.  It was visually confusing, but she also could have just had an off day.  Her IEP team is wonderful including the resource teacher, a new school psychologist (who wrote up the most comprehensive eval I have seen from a school psychologist), the classroom teacher and principal.   We reviewed her test results and rewrote her IEP making it more effective for her needs now.  It was a very productive meeting. 

So, I know I said in the beginning that I wanted her to still qualify, and I did/do, so that she can receive the services that she needs, but as a parent, there is still that feeling you get in your stomach and heart when you hear the news.  I want what is best for my child, and I will never stop fighting to attain that, but truth be told, there are so many times I just wish that she didn't have a learning disability and could complete all her work as easily and quickly as most of her peers.  However, I am so blessed that she is my daughter.  She is such a hard worker, so smart, kind, loving and beautiful.  I'm so proud of her!

Individualized Education Program (IEP) and Tips for Parents

With August quickly approaching, so is the beginning of school...at least for those of us that live in the south.  The start of school also means IEP meetings for many of us with children with special needs.  Below I have given an overview on Individualized Education Programs (IEP), as well as listing resources to help parents prepare for an IEP meeting, whether it be your first or your fifteenth.  Hope you find this post useful.

An Individualized Education Program is mandated by the Individuals with Disabilities Acts (IDEA).  The IDEA requires the public schools to develop an IEP for every child that has met the requirements to be considered in need of special education or related services.

In order for an IEP to be successful, parents, teachers, other school staff, and even sometimes the student must work together to identify the student's needs and the best way to address them.  So if your child has been identified with a learning disability and is eligible for services, the next step is to set up an IEP meeting.

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No I CAN'T -- Yes, You CAN - Building Your Learning Disabled Child's Self Esteem

Reading has always been a struggle for Madison.  It has taken a long time, has been challenging to figure out words, and she just plain has not liked it.  This is all related to her Visual Processing Disorder.  In order to help her with this she has endured Vision Therapy for 2 years--the problem is, she does not recognize the progress she has made.  She has programmed herself to believe that reading is difficult, and will be difficult, regardless of the gains she has made over the past couple of years.  So the question is, how do we reprogram our children to believe that they CAN do something that has been forever difficult and challenging to them?  How do we encourage them to take the risk to forge ahead?  How do we get them to ignore that "bully" in their mind telling them "this has always been difficult, therefor I still can't do it and I don't want to try...I'm just going to fail".

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Learning Disabilities and End of Grade Standardized Testing

I always dread the end of the school year.  There is so much pressure put on students regarding end of grade standardized testing.  The teachers have pressure put on them for their students to perform well, so many of them in turn put pressure on the students.  This can cause even the best of students stress and anxiety.  So what about the children with learning disabilities?  Research has shown that these students experience more stress and anxiety on tests than their non learning disabled peers.  So imagine having to cope with your disability as well as an added amount of stress.

I personally don't agree that all children's competence or knowledge can be assessed by the format of standardized tests.  As we have hopefully become more aware over the past several years, children learn differently and need to be afforded differentiation in instructional and evaluative strategies.  Not all children learn through pencil and paper question and answer (especially the LD child), which is the format of the standardized tests.   This being said, standardized end of grade tests are the reality and we need to know how to prepare our children best for them.

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Special Needs Awareness - Follow Up

A few weeks ago I posted an entry on special needs awareness.  My Parents of Special Needs Children support group at church had been asked to do a presentation at the PW (Presbyterian Women) Luncheon on children with special needs.  As we prepared for this presentation, we decided that each of us would give personal quotes that would be displayed on tent cards at the tables explaining our thoughts or a specific situation we have experienced raising our children.  As well as that, two of our members would speak.  The first is a retired special education teacher that gave a brief overview of the vast special needs and disabilities that exist.  She emphasized that only 20% of disabilities are visible.  The rest of these children look just like any other child.  The second member to speak, Eileen Koehler, is the mother of 3, her oldest having Asperger's Syndrome.  I was so touched by Eileen's speech, I asked her if I could share it on my blog.  She was kind enough to agree.

                                                                        Eileen's Speech

Hello, my name is Eileen Koehler. I have been a member of DCPC for a little over a year. I have three boys, Thomas 12, Henry 9 and Owen 7. I have heard many wonderful things about the staff of the DCPC preschool and have witnessed many acts of love and compassion that all the volunteers and so many members give to all the children. DCPC members give so much of their time and talent for our children and I am so very grateful.



I have been asked to speak a little about the special needs children here at DCPC. All the diagnoses that you see on the poster boards were given to children who are members of this church. The quotes are directly from members and express what they have experienced either within the church community or outside. I realize that these diagnoses might seem trendy or new fangled. But let me suggest that we consider all the scientific advancements made in medicine; and how we readily applaud the increased chances of survival for certain types of cancer or the improvements in the treatment of diabetes, and so on. So, logic dictates that we should also applaud the advancements made in neuroscience that can offer better explanations for many child behaviors that were not known before.


Since “special needs” represents many different challenges; from cognitive to medical difficulties, I asked a mother if there was one thought that I could convey to you that would encompass what our families wish and it is this…that because we are human sometimes it is easier to look approvingly at the well behaved, self possessed child and otherwise be judgmental of the child (or the parent for that matter) that is pulling away from their parents’ touch, not responding to their name or seemingly refusing to follow instructions, avoiding eye contact, unusually reserved bordering on rudeness, bumping up in line, or a little moody because they know they cannot fully enjoy a church event due to medical issues. Whether it is genetics or the circumstances surrounding their birth, it is at that very moment when we are challenged to remember they were created by God exactly as they are and they face adversities that, in many cases, are unseen to the naked eye. I don’t know if Jesus had special needs children in mind when he said in Matthew, Chapter 18-5, “If anyone takes in a child like this for my sake, he takes in me”. But, maybe they are God’s little messengers to remind us that when it is hardest to love, that is when love is needed the most. It could be God’s way of asking us to meet that challenge and so these children are a gift from Him to bring out the best in ourselves. I remember when a physician very bluntly said that more was going to be expected of us as parents. More patience, different parenting methods, better understanding of child development, more informed about alternative educational techniques. I felt so angry….I think of myself as average and I didn’t want the expectation of being some bottomless pit of patience and a possessor of tremendous insight into child behavior. I was prepared to be a slightly improved, lovingly well-intentioned, but flawed parent much like my own mother! Even siblings of special needs children sometimes have difficulties because so much attention is given to one member of the family. They cannot articulate what they feel so they may act out in public. There is a story for all this, we landed in Holland.


If you had the chance to read Emily Pearl Kingsley’s “Welcome to Holland”, it expresses very well what our lives feel like. When you realize your child is different or when you officially receive a diagnosis, Kingsley likens the experience to having your vacation plans drastically changed from a wonderful trip to Italy to unexpectedly landing in Holland…permanently, forever. The portion that resonates with me in relation to religious faith is “But everyone you know is busy coming and going from Italy and they’re bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That is what I had planned. The pain of that will never, ever, ever go away because the loss of that dream is a very significant loss.”


That is from the viewpoint of a parent; my feelings of loss…a bunch of teenage boys coming over to the house to hang out with Thomas. All the parents here of special needs children can tell you something about their lost dream. And make no mistake, as those quotes show; we have some painful stories to share. But we also are adults and have our faith and each other to help sustain us. We need and appreciate any support we receive from all of you. However, that passage also can represent the feelings of the child who is, or will someday be, cognizant of their separateness from their peers. What about their lost dreams of party invitations, play dates, having their name called in a friendly way to join a game, having a girlfriend or boyfriend, meeting up with a bunch of kids after a movie and eating in the mall food court…but can’t because they need a special diet. They spend a lot of time at doctor offices and therapy sessions. They too can see the disapproving looks when they “don’t fit your idea of normal”. For them, like landing in Holland “that pain will never, ever go away”.


So I think to myself, maybe it is not about what I need but what our children need from DCPC, they need you. As parents we can give them all the love we have but we won’t always be there during some of the most challenging moments of their lives whether in the classroom, on the school bus, on the playground and further on in their lives when they are in college and in the workplace. It is now, in their youth, their experiences here with you at DCPC that the development and growth of their faith in Jesus’ love, as His love is expressed through your kindness, that is going to be so very crucial for their future. Because it is this very faith they are going to need when they try to find their way in a society that can lack inclusivity and even be outright unkind. They are going to need strong religious faith to sustain them when they witness all the wonderful experiences other children continue to have in Italy; the times when they feel alone and rejected, when they are tired and faced with numerous medical procedures, when they feel set apart because they need special classes to help them keep up with their peers socially or academically. So besides their own families, where else will they experience the welcoming and unconditional love of Jesus, if not here at DCPC…from all of you? We know that they can find sanctuary here and can truly believe in the love of Jesus Christ through each of you and your family’s patience, your smile, and your kind words of encouragement.


I would like to conclude with something from Matthew, Chapter 18- 10, “Do not think badly of these little children. I tell you this. They have angels in heaven. And all the time their angels can see the face of my father who is in heaven.”

Thank you Eileen for sharing this with us.  It truly gives an insight into the feelings and thoughts of us as parents of children with special needs.

Learning Disabilities and Anxiety

Anxiety, as defined by Mr. Webster, is an abnormal and overwhelming sense of apprehension and fear often marked by physiological signs (as sweating, tension and increased pulse), by doubt concerning the reality and nature of the threat, and by self-doubt of one's capacity to cope with it.   Okay, for purposes of this post, let's simplify the definition to extreme or excessive worry that interferes with a child's ability to enjoy life or to perform some normal, everyday activities.  Did you know that research shows that children with Learning Disabilities most likely experience higher levels of anxiety than non LD kids?  Makes sense, right? 

According to the article Anxiety Among Kids with LD:  Three Clinical Psychologists Discuss Causes and Symptoms the research they have collected indicates that first signs of anxiety present themselves when these children enter kindergarten.  One of the psychologists, Roberta Goldberg, terms it "the anxiety of not being able to keep up."  The article also goes on to say that at this age most parents are not aware there is a learning disability and just feel the child isn't working hard enough.  This of course adds to the child's anxiety, who already feels as if he/she can't do something they should be able to do.  Most children are not identified LD until 2nd or 3rd grade or later (that is of course if they are identified at all :  30-50% of the population has undiagnosed learning disabilities.(Source - National Institute for Literacy)).  Also, 44% of parents who noticed their child exhibiting signs of difficulty with learning waited a year or more before acknowledging their child might have a serious problem (Source: Roper Starch Poll - Measuring Progress in a Public and Parental Understanding of Learning Disabilities). The article Anxiety Among Kids with LD tells us that before and during the identification time period, their anxiety levels can  be high.  According to these psychologists, the anxiety for the LD children is the highest in elementary school, then subsides some in junior high, and subsides even more in high school.

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Public Awareness of Children With Special Needs

As I have mentioned before I am a firm believer of support groups for parents with children with special needs.  Yesterday I had a meeting with one of my support groups for "moms with special needs children".  We have been asked to do a short presentation at a luncheon to spread awareness of children with disabilities.  Many of the people attending this luncheon will have no concept of the vast spectrum of special needs.  Many times when a person hears that a child has a special need, they may automatically think, "Oh, he must have ADHD," or one that I have heard personally, "She goes to a special class, she must be retarded."  But in truth, these can be misconceptions, and there are far more categories of special needs that affect children in our society ranging from autism to learning disabilities, from muscular dystrophy to down's syndrome.

According to the U.S. Census, there are more than 54 million Americans with disabilities in the United States--that is almost 20% of our population.  However, most of those special needs are not visible.  The child looks just like every other child.  Our support group is trying to take baby steps to spread awareness of these wonderful, special children.  We would like for people to realize that things may not always be as they seem...that the child that is "misbehaving" during the sermon at church, continually knocking on the pew despite his parents attempts to make him stop, is not being disrespectful--he has autism.  Furthermore, his parents are not lacking in parenting skills, they more than likely go above and beyond each day to be sure their child is afforded each service he needs to accommodate for his disability.  And that child who is in fourth grade, but her parents still point to the words in the hymnal to her as the congregation sings, she is not stupid, she has a visual processing disorder and actually has above average intelligence.  These two children look just like all the other children.  Sometimes, it makes their disability even harder to deal with.  It can also make life challenging for their parents.

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Vision Therapy

Boy, getting Madison to read is about as easy as asking someone to jump into shark infested waters.  As I mentioned before, everything was (and much still is) difficult for Madison.  Trying to teach her to identify the letters of the alphabet or numbers was painstakingly difficult.  We tried singing, coloring letters , tracing letters in sand and whipped cream, lacing letters, making them out of clay, stamping them, making them with our body, among many other activities that I did with students in my classroom that had difficulty with letter and number identification.  Many of these were useless activities that although were fun for Madison, had no lasting effect.  In the end, I'm not really sure how she retained this information, I just know that it took quite a few years.  And then after all that, she was expected to learn how to read...really?  That process was (and is) just as difficult as letter identification.   Her teachers in kindergarten and first grade continued to tell me that there was nothing to worry about, that she was "just a little behind".  However, they had no idea how much effort Madison was putting in to be "just a little behind".  I knew there was something more going on and decided to have her privately tested at the end of first grade.  That is when we learned that she had a visual processing disorder.  She is now in fourth grade.

 It was good to finally have a diagnosis.  We took her out of private school and put her back into public school where she could get the services she needed.  I also decided to get her a tutor so that I could spend more time being "mommy" and less time being the one that was always making her "do school stuff".  During this time, I tried all the reading programs I had used as teacher, as well as purchasing additional ones recommended by various educational specialists.  These are some wonderful programs, but Madison still had trouble retaining visual information and learning basic reading skills.  I was so frustrated for my daughter and would have done anything to make school easier for her.

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Handwriting Woes

"What does that say?"  "Stay in the lines."  "You need to start your letter at the top."  "No, no honey, this is how you hold a pencil"....Do any of these phrases sound familiar?  Handwriting is a struggle for many children with learning disabilities and ADD.  And unfortunately, due to the curriculum demands that have taken place over the past decade, handwriting is no longer a formal part of the curriculum in many states...including ours.  Barbara Willer, the deputy executive director of the National Association for the Education of Young Children has said, "The printing and cursive are taking more of a back seat."  In my opinion, this is such a disservice to children going through our school systems today.


There is a link between handwriting in early grades to basic reading and spelling achievement.  The process of learning handwriting helps with letter recognition, word awareness and sentence skills.  When I would teach my kindergarten students letter identification, I would teach them how to form and write the letter, as well as the sound of the letter.  By giving attention to the links between handwriting, reading, and spelling a teacher can help reinforce achievement in these areas.  This also allows students to translate a visual or mental image of a letter into a written form.  I would also teach the proper grip of the pencil at this time.  As little as 15 minutes a day of handwriting instruction has been shown to be beneficial, and as noted, it does not (and should not)need to be a stand alone subject.


Handwriting instruction is such an important part of our children's education.  Especially children with special needs that may have difficulty with fine motor skills, visual processing, or attention.  For any child, without proper instruction, they are just drawing the letters, but it is not automatic.  With instruction and practice, they are able to form good and consistent habits.  This is important because it allows them to focus on the content of what they are writing, not how are forming the letters as they write.  If they have not learned these good habits and it is not automatic,  they may lose their thoughts before ever getting them on paper.

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Homework with a Learning Disabled Child

Raise your hand if you like to do homework.  Hmmm, I wonder how many people raised their hands.  And that's probably for the "average" person.  Now imagine that you have a learning disability and the homework that takes your friends 30-45 minutes to do takes you 2-4 hours to do.  This is what it is like for many children with learning disabilities, including my Madison.  Then add 45 minutes of reading on top of that.  Sound like much time to be a kid?


On an average day, Madison gets home around 2:15.   She comes in the door, puts down her bookbag, takes out her binder, gets a snack and sits down to begin her homework.  She has a reading and math pack for the week, as well as spelling, vocabulary and usually either a story from her reading book to study for a test on Friday, or a novel to study.  The reading pack consists of worksheets that include passages that she has to read and then answer questions, vocabulary, grammar, etc.   Reading the passages and worksheets takes her twice as long as most children.  When she needs to write answers down, we have to go through her answers together,( not for the content, but for the spelling) edit, and then she has to correct it.  Although she loves math, it can be time consuming and difficult for her as well for the same reasons.  For these reasons I have to be by Madison's side for the duration of her homework.  By the time we finish her homework it is dinnertime...anywhere between 5:00 and 6:30.  And let me assure you that she is not the child that keeps getting up, doesn't focus and fidgets.  She is determined to get it done because she wants to be finished.  That's not to say that some afternoons are not interrupted with tears because she is frustrated that it takes her so long and she has so much to do.

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Myths about Learning Disabilities

Although I knew for some time that something just wasn't right when it came to Madison's retention skills of written or visual material, when the official result came in, they still completely knocked the wind out of me. I was overcome with emotion and thoughts of what this meant she might not be able to do. Will she ever read as fast as her friends, will she be able to play "Around the World" math, will she go to college? All my knowledge as an educator flew out the door, and I actually went through what I would say was a mourning period.


It took a little while, but I passed that stage (with the help of family) and moved on to the "What do I do to make this better?" stage. After all, she was still the same child that she was the day before, she just had a new "label". Knowing that she had that label didn't change anything, it just now gave me the power to get her all the help and resources she would (and does) need to be as successful as she possibly can.


I was a teacher for 8 years before I had children. My mom was also a teacher. She actually taught self contained special education. So I had experience and knowledge about children with learning disabilities (LD). I have always known the difference between myths of LD and facts of LD. However, it affects you much differently when the LD child is your own. People misjudge and make judgements. They misunderstand and jump to conclusions. So, I hope to clear up some of the myths about learning disabilities here.....

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Madison's Journey--Living with a Visual Processing Disorder

Madison is a bright, sensitive, caring 9 year old girl who is growing into a beautiful young lady. When she was born, as most mothers say, it was truly one of the happiest days of my life. She was a wonderful baby...always happy and smiling. She met most of her milestones on time, although she didn't crawl until she was about 10 months old. However, she walked at 12 months and kept cruising along. She talked early, had a large vocabulary, but did have speech issues with articulation. She started speech at age 3 and "graduated" fairly quickly.

She began preschool at age 2 and absolutely loved it. She enjoyed the "play" based program and grew socially and emotionally. During the next 2 years she continued in this program and blossomed even more. She loved having books read to her, singing songs, coloring pictures and dancing around. As a former kindergarten and first grade teacher, I knew how much emphasis was being placed on kindergartners knowing their letters so I began to casually introduce the letters of the alphabet to Madison. This was an extremely difficult task for Madison. She may remember one for a minute, then forget it the next. She may remember one for a day, then forget it the next. She may not even be able to tell me what a letter was 2 seconds after I had told her the name of the letter. So, being the teacher that I am, I began to try all of the "fun" things that I used to do with my students. We made letters out of play dough, we wrote letters in whipped cream, I had her trace them on sand paper, lace letters with yarn, write them in sand, make pictures out of them, etc. But no matter what we did, no matter what had worked with most of my students, Madison could not retain letter names...please do not get me wrong, we did not do this daily or even weekly. We would just do this periodically until she reached kindergarten. However, this is when I realized that something just "wasn't right".

In the fall of 2005 she began kindergarten. She struggled to learn her letters. My husband and I conferenced with her teacher who said she needed to work on letter identification, but when asked if she thought there was a problem she assured us everything was fine. Madison changed schools in the middle of kindergarten and started her second semester at a private school. She was still having difficulty with letter id, but the teachers assured us once again that this was nothing to worry about. Meanwhile, at home, we were working diligently to try to get Madison to retain her letters...not an easy task. She stayed at this school through first grade with the same feedback from the teachers. She is a little behind, but it is nothing to worry about. And let me tell you, as a teacher, I was asking, "Do I need to be concerned?" The answer was always "No".

In many cases, well behaved girls fly under the radar when it comes to learning disabilities. They follow directions, they can be quiet, and in Madison's case, she has a strong work ethic, so she is always on task. Well, at the end of first grade I told my husband that I knew there had to be something going on. She was different than any student I had taught and we needed to get her the help she needs. Most private schools do not have testing, so we decided to have Madison privately tested for a learning disability. As it turned out, she has a visual processing disability. This effects many aspects of her life and education.

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