About Blog

Hello and welcome to MissUnderstoodMe. As a mother of 2 wonderful children I am motivated to increase awareness of dyslexia and to add a perspective from a parents point of view. The name MissUnderstoodMe comes from what children with dyslexia often feel on a daily basis, my hope is that they will know that there are those who do understand. In addition I will share my trials and triumphs with raising two children with special needs and my experiences navigating the school system to get services that might help my children grow into the best they can be.
I hope you’ll share in my journey.
MGM

Advertisements

Happy Schools Out!

Schools out and I couldn’t be happier, it’s tough on a parent of a child with special needs (I feel the need to add I think all kids have special needs but the label in school means something different). I digress; this year has been eye opening in that I have experienced what many parents who look for services in our public school system face. These parents have been doing this for years, and they are my teachers. Instead of the wait to fail approach of years ago we now have RtI which can best explained as lets watch them fail. At first RtI sounded great she would get specialized instruction in smaller groups going over the material a little slower than regular classroom instruction. However, when the time comes that RtI is no longer working your child may still not qualify for special education services. The endless amount of paperwork and requests, timelines, tracking, and meetings ensure that you have a new full time job called advocacy. You’ll be getting an equivalent to a degree in special education, special education law, speech and language therapy, and trained in a program for reading and math that will help your child while fighting the school for acknowledging a problem exists in the first place.
Now if you happen to have another child who has different problems but also great strengths in areas where you would think a school would take interest. They don’t care about that either. You may get the services you requested to address the problem, but you will have to fight for anyone to notice that your child is ahead of his peers by 3 grade levels in other areas. There will be no services provided to cultivate that particular strength either, so you can add teacher for “gifted” children to your resume’.
I have learned so much in the last 9 months of school. I learned that our current education system teaches to the average child, you may have a child at the higher end or lower end and somewhere in between and they may do fairly well in school. If by chance you have a child that falls below that line or even above that average line you will have to be the one to take notice. We tend to approach schools like we do doctors, we have a problem we go to them to find out what is wrong and to fix it. This approach will only eat up more time and they are in most cases not trained to do the “fixing”. I learned that no teacher, no administrator is going to advocate for my child; it doesn’t make them bad– it just means you will have to act on your child’s behalf to make them take notice, then to implement the plan. I learned that most parents have a misguided trust in the school system and believe they have the answers and will alert them if needed. No, a school works on a budget, the more time they spend on your kid for a meeting, paperwork, testing, and special instruction– these are dollars to them and so the longer they can go without acknowledging a possible problem the less cost to them—your child picks up this cost in lost time, instruction and self-esteem.
So I am looking forward to summer differently than the summers before and spending time seeing life through their eyes again, putting a dollhouse together, going for a bike ride, playing in the rain and the best… having no plan at all.

~MGM

H is for Homework (and Hell)

It’s that time, I pour myself a glass of wine and prepare with all the essentials: paper, pencils, erasers and the homework. I call my daughter in…it’s time. Homework from the beginning of first grade always conjured up anxiety for her and for me. Even before this she was never really interested in writing anything. I let her draw pictures and color for thank you cards, and either my husband or I would read every night to her. Getting her to start the homework has been a battle and her new perfectionist attitude does not allow for even the slightest mistake. She managed to do her homework, but it usually took some bribery, threats and sometimes me giving in and letting her do part of it the next day. I cringe when I think of how hard I was on her before I realized she is dyslexic, her doing her best and me not realizing it. This year is different, not that I prepare any different but I do go about it differently. I no longer expect the battle, I don’t prepare for a battle because some days there are no battles. Changing my attitude was the best thing I could do to make the necessary task of homework a little more tolerable. I also found myself creating new ways to explain a concept, hoping that something will “click” and she will be able to use that when she gets stuck in class or on a test. I also reminded her that it is her job to ask for help from the teacher and the teacher’s job to provide the help, but she won’t know you need help if you don’t ask. To that she answers: “but I don’t want to frustrate her” I twinge a little and remind her that if she thinks the teacher is frustrated then how frustrated must she be– the one that is supposed to be learning from this frustrated person. Tears run down as she knows all too well that she gets frustrated every day, now she just saves the teacher from becoming annoyed by keeping to herself and for me later at home.
At only second grade I know my little strategies to make homework a little less daunting will only go so far. My expectation is different from when she started kindergarten, not less just different. Now the important things are staying curious, be willing to learn, ask for help, try new things, take a deep breath and understand that mistakes are a part of learning. If she can manage to apply these she will be ahead of the game, after all she won’t be doing homework she will be doing lifework.

Wrong Again

No one likes to argue. Well I’ll take that back, my mother had a special gift for arguing and there were no rules. She was a prize fighter while her opponent, usually my father was like an unsuspecting deer making its way into the headlights– and ultimately his fate. But I digress; most people do not like to hear their faults lying out there in front of them like a gutted fish. Many times I have heard a professional say “you don’t know how to fight,” well it’s a fight, isn’t part of a fight throwing out whatever comes to mind? I guess not. I will admit that my timing is off…often. It doesn’t occur to me at the moment when something is said and I feel the need to defend to wait until a better time. I just want to impart some insight into the situation, that way we will all feel better and can move on. I guess not. People (and by people I mean my spouse) do not take kindly to being corrected in front of their child. Guilty. I have gotten better, I like to think I wait until it has reached my definition of enough and then I try to “reason”….I don’t think my delivery is working. It has been brought to my attention that in my quest to advocate for my daughter, to better understand her, to negotiate on her behalf is not something I am supposed to do with her father. I get it. I have taken on the role of understanding my daughter and her dyslexia and have often wondered where her feelings stop and mine begin. When confronted with frustration I try to be the voice on her behalf. Instead of telling her I know you didn’t mean that, I understand, it often comes out as the other person is wrong. I am not doing her any favors, she will have to learn to speak for herself, she will have to learn to pick her battles and she will have to learn to pick her timing. It’s much harder to admit when you’re wrong than it is to end up in an argument; well at least I think it is…I’ll have to ask my husband. 😉

What I Learned…

I learned so much from you growing up, things you said but most things you didn’t say; your silence in an otherwise chaotic childhood would be the voice of reason for a lifetime.

I learned that your time was the best gift you can give another person.
I learned that self-improvement was a lifelong journey and those close to you will reap the rewards.
I learned that greatness is often hidden in small, quiet unassuming people.
I learned that an open mind is the one necessary tool to learn and grow.
I learned there is a time when finding your voice is essential for the self–and using it is essential to the safety and security of those you love.
I learned that zebras don’t always have stripes, sometimes they have polka dots– through an artist’s eye the possibilities are endless.
I learned to laugh at almost everything, there is humor in most situations and it can save your sanity–look for it!
I learned that it’s none of my business what others think of me—this will be a time saver.
I learned that life isn’t fair—sometimes on the way to Disney World the car dies and you end up at the local fair instead.
I learned that the key to a goal is to first have one.
I learned that there are just some things that money can’t buy—integrity is one of them.
I learned that perfection is overrated—and too much work, life will still go on if the dishes are dirty.
I learned that should trust no one fully—people are people and therefore will disappoint you—trust yourself first.
I learned that above all else about unconditional love—I learned that it is not taught, it is shown.

So just in case you wondered if I was paying attention, the answer is—always!

Love,
MGM

“I Feel Like I’m Not Good At Anything”

“I feel like I’m not good at anything” the words cut right into the deepest part of my heart as
my daughter tried to read the words in front of her perfectly, only to be stopped dead in her
tracks at the word: word.
I see the frustration build after every attempt to make me proud. She is too young to
understand that her continued trial and error will be the best teacher she will ever have. For
now dyslexia seems to follow her like a dark cloud hovering like self-doubt into everything she
tries.
An invitation to a fellow classmate’s party is met with fear of not doing the right thing or saying
something stupid, it is the close friend of dyslexia, anxiety…they hang out together often.
It is the desire to want to try soccer until you realize other people play to win, you just thought you were learning a new skill….defeat again looms nearby.
I could tell her that it gets better, but
what good would that do, who has that kind of time…confidence is fading away.
I could tell her that the world will not end if she does not spell a word correctly, but it will for
the moment her paper is returned with yet again…another failed attempt.
I could tell her that inside her is the potential for greatness…a gift she just has to open.
When I say I know, I
understand she doesn’t realize I really do. So when she says “I feel like I’m not good at
anything” I am in the hole with her…for just a second. Then I get out because some has to be
there to pull her out.

Motherhood: Learning On The Job

On a recent trip to the grocery store as I struggled to put my almost 3 year old into a shopping cart, it occurred to me how much better I was at parenting before I actually had children.  Yes I was the person that had the answers to every challenge I would face, and those answers would be received by my child openly and followed through with precision and appreciation for my parenting style.  Now while I try to karate chop the back of his knees…so that…he will bend…and get…each…leg…in the…correct hole….”C’mon, give me a break!”  I notice the stares of the passerby’s and I am now amused at how comical my pre motherhood dreams were.

I am the first to admit that I haven’t a clue as to what the hell I am doing, I am learning on the job.  As a self confessed control freak this is not what I had planned, and so there within lays the answer, there will be less planning in parenting, to be replaced by a whole bunch of figure-it-out-on-the-way.  I had great ideas with my first.  I would not allow her pickiness to dictate how we lived, so she learned to eat as we did, she had a schedule but it was set by me and for the most part she went with the program.  Then child number two came along and I figured I had this shit down so I would just have the same routine just with a different kid.  He had other plans.  As an infant he decided sleeping at night was overrated, so after trying every trick in the book I caved; I recorded shows during the day so that I could have something to focus on in the middle of the night when my sanity was slowly slipping away.  After he started sleeping at night he was quite content on having me carry him everywhere, all 20 lbs plus gear—my workouts would come in handy now and for all of the 15 months before he would walk on his own.  Then came the melt downs, if there was an award given to the child who could throw the biggest and longest tantrum he would win hands down, I was convinced.

He didn’t speak much at age 2 but that didn’t stop him from getting what he wanted, he just simply pushed a chair, used a utensil or any other object to get what he wanted.  When that didn’t work the meltdowns came, for the life of me I could not recall what my pre mommy handbook would say to do about this…so I laughed…and then I cried…then I laughed…and then you get the picture.  Because he could not say what he wanted this became a regular daily event, several times a day and for pretty much everything he needed or wanted.  I was frustrated for him, but I was at a loss for what to do.  Right after his 2nd birthday he started Early Intervention, after finding out from his doctor that he should be speaking more I immediately researched if there was something wrong.  I found he was delayed in speech and it could mean other problems or it could mean he could catch up with some speech therapy.  The therapist came weekly, he qualified for both a speech and a behavioral therapist, I figured they would put an end to this nightmare, please just tell me what to do.  Since playing turned into a battle that usually ended up with a toy being thrown at my head, I took away anything that could be used as a weapon.  His reach would only permit him stuffed animals and cushy toys; this is not fun I thought to myself.  He had his moments, he could be funny and he could snuggle for naps and at night before bed—I lived for these moments and there never seemed to be enough of them.   He made progress, it wasn’t fast and it wasn’t a complete end to the tantrums but he started using words to express himself and throwing became a little less.  Playing started to become fun and I saw more of a relationship between him and his sister, he loved her and he showed it.

Still as I finally get him into the shopping cart and move quickly to get his attention onto something else I think the most useful tool I could have ever had as a parent is a sense of humor, sometimes just the story of this craziness playing out in my head is all I need to get through the moment.  These moments don’t define him or me– it is just us trying to figure out what we are doing on the job– often not well.  As for my premommy handbook it has been replaced with a book of actual on the job experiences, which have yet to be finished.

Could it be Dyslexia?

I have always had a feeling that my daughter had trouble with certain tasks that her peers didn’t seem to have.  I chalked it up to “every child learns at their own pace,” that everyone, including my husband seem to say, but I was still not comforted by this and had her work with a tutor throughout the year.  At first it was just getting her to write her name, “I can’t make an “S” she would cry, “we don’t say can’t, you haven’t even tried” I would sayThis was before kindergarten and we had been working all summer on remembering our phone number, address and writing our name, to no avail.  I tried to let it go, itwas becoming anxiety provoking for both of us and left us both feeling like we failed each other.  Kindergarten did not show me much progress, she never learned to tie her shoes (so thankful for velcro) and most papers did not have her name on them.  Reading at her school was not monitored close enough to show any significant problems so she received her S for satifactory as she did for everything else.  Still problems with directions persisted, left and right, getting easily turned around, not remembering steps and orders to things even though she had been taught over and over. This directionality issue would continue into first grade, getting lost not once but twice in a large store even though we were just the next aisle over.  Her grades in first grade were ok, but we often wondered why she would understand something one day and the next it would seem like brand new information.  Reading was exhausting for everyone involoved, her father and I took turns every night and were constantly frustrated that she could read a word on one page and on the very next page it looked brand new.  Learning math facts came along fine until she had to take a test, then she often switched the operations adding when she should subtract and so on.  Doing homework at night was dreadful and I found myself hating it as much as she did.  Finally her teacher suggested we test her for ADD, we agreedshe did show some signs of inattentiveness but it still didn’t seem like that was the problem, so we waited until the next school year.  A new school gave some new clues to our daughters problems, it seemed she had forgotten most of what she had successfully learned in first grade, her reading inspite of her reading to us everyday showed she was not reading at the level she should be, it was not because of a lackof effort.  She seemed happier at her new school and her teacher was and still is very helpful at keeping us posted on her struggles as well as areas that she has progressed.

After the first meeting with her teacher I was even more determined to find out what the problem was, she is brilliant at things like acting and singing, describing a story with such detail and is fascinated with anything to do with science.  At times I told my husband “she thinks like I do”  what I meant is I recall not remembering what I read, I figured unless I was super interested I just daydreamed.  I remember my mother writing a R and L on my shoes during grade school because I just could not remember which went on what foot.  And homework!  So much frustration, my mother just stopped altogether and my dad worked too much to help.  I struggled to sound out words but eventually I read as well as the other kids.  I always knew I learned differently than other people, I had to experience it, I had to start at the end result and work backwards to really make sense of why it was the way it was.  I worked through high school not loving any of it, but making mostly B’s and C’s I was average at best and I had no idea what I might be good at.  Once I said this out loud to my husband, that I think our daughter and I think the same way I remembered my father telling me that he was dyslexic as a kid (I guess he believed that it goes away).  I never gave it much thought, both of my parents read voraciously, bookshelves lined our living room walls and both seemed to seek new things to learn, I dismissed it until I researched it and found the clues I had been missing!  My research would also show that many with dyslexia are good at art, both my mother and father are extraordinary artists, I had lived with out-of-the-box thinkers my whole life.  Maybe this is why my initial struggles didn’t stand out to them.

For me I see my daughter try her best and I see her frustration and anxiety growing with every challenge she is faced, I see her give up before trying, second guessing herself at every turn.  I cannot accept that, I wonder how much she could accomplish if she just believed in herself, I imagine how she could soar once she is given the key to opening her potential, I believe she needs to have some “wins” so she can face the hurdles that will come her way with confidence.  She needs to know that dyslexia is just a different way of thinking, a unique, talented and extraordinary mind that is undervalued in todays education system, but can be of great use in life as she developes determination and persistence.  It is for her and many other people who I started this blog, hoping to one day turn it into something more.  Sally Shaywitz said it best when she said that “dyslexia robs people of time”.  Many people never know their potential because they never learned they had any, they slip through the cracks of our current education system and the little knowledge the schools have on the subject.  As I advocate for my daughter in school I am also working with her at home so she has every opportunity to see her potential, I will share some of these methods in upcoming posts, until then keep moving forward.  -MGM