Victoria “Tori” Madison’s Story

Victoria "Tori" MadisonSeven Years ago we were so excited/overjoyed to welcome our first child – a girl Victoria Madison “Tori”. My pregnancy was PERFECT! My doctor asked me what vitamins I was taking because my count was perfect/over the top. I read pregnancy books, nursing books, took Lamaze (sp) classes/birthing classes with my husband.kI listened to her heart beat and played music on headphones put it up to my tummy so that she could hear. Interviewed various GY doctors to pick out the best one to deliver her. Was promised that someone would be there in the office if my doctor wasn’t available-met backup drs. as well. Packed two suitcases lol in case I stayed in the hospital (most baby clothes lol as I couldn’t figure out which one to pick).

The big day came FINALLY! Yeah I was so excited/nervous at same time. Turned out my doctor and doctors could not be found. A nurse was called that I did not know of.. I was disappointed but what can you do. They had to break my water. I stayed at 5 forever it seemed until I requested meds etc. Then I stayed at 9 forever… I was in labor for over 24 hrs./ and then Tori’s heart rate started to was getting scary. I was given oxygen for both she/ as we were being rushed for emergency C Section… no time to think – just had to sign all kinds of papers death etc. in case something drastic happens.

Victoria "Tori" Madison2Tori was born! Yeah–they checked her vitals etc. she seemed healthy/fine. I on the otherhand, was very sick. I had to stay in the hospital for a week at least as I developed an infection and did not react well to the medicines I was given. I tried very hard to nurse. With numerous help-nurses etc. had a difficult time getting her to latch on. Later I learned why. We took Tori home still tried nursing. I did not want to give up.. as this was BIG for me. Despite all efforts (having father-in-law) run to store for oatmeal/ and herbal pills lol.. I decided to pump and was successful at that.

So I stuck it out for several months-even though I wasn’t sleeping because Tori wasn’t sleeping as well. I finished writing my FINAL paper-for my Action Research the final months and went back to school for 9 days before school ended. Took another class to finish up my Master degree–Practicum in Rdg. during summer. It was during the summer that my mom practically forced me to go to doctor..she came with me. As I don’t know
how I managed to still survive without sleep /finished up my degree graduated. The pediatrician tested Tori and they found that she had a blocked Urethra during ultrasound. Since that time, we went to UVA several times for tests. Finally, at age 3 1/2 yrs she had surgery to correct this at UVA hospital. We have no regrets. I also had her evaluated through Child Find. Child Find had me do evaluations etc. Which I tried to do my best with. I had noticed that her talking was late. Although, she did make the milestones. Had her tested every yr. lol. I followed every suggestion given to me.

Victoria "Tori" Madison 3I was told to work on her talking/social through play activities. I was teaching full-time as a Special Education teacher. I thought, I got this. I joined playgroups in my area. I became the “Playgroup Queen” of my neighborhood lol. I also put her in different activities since age 3.5 she was in dance as well as Little Gym activities. I noticed she had a hard time keeping up with children her age – gross motor skills. She was also in preschool since 3.5 yrs. of age full-time. The preschool also noticed that she was behind. Again, I had her tested and she did not qualify. Age 4.. same as well.

Preschool teachers were on the fence as to whether she should stay in preschool another year. They were thinking it may be developmental. We decided to go ahead and put her in kindergarten. I changed jobs from sped teacher to rdg. teacher and was commuting hour and 15 min. to my job (so that I could be rdg. specialist in my district). I decided to take Tori with me. That was the summer that I was Hospice Interventionist for my mom whom went downhill with lung cancer. She was diagnosed with lung cancer during January..and it went from stage 2/stage 4 during summer 2012. At my new school job -RTI (Response to Intervention) was started. I became involved with RTI as a Reading Specialist. Progress monitoring was done and Tori was one of the kids that was in tier 3/particulary for math…she had moved up in reading to tier 2 as she knew all her letters/sounds. Rdg. was more of a strength for her. She had intensive skills worked on prior to kindergarten and excellent teachers. Math was always hard. Spring approached and she was put through child-study. Again, I was commuting but yet still made time to attend extra activities at school as well as take dance classes back at home! Tori and I read the most books – 1000 Book Reading Club in Kindergarten as well. I asked for an informal assessment because I too saw she was behind in gross-motor, learning math was slow, and attention (inattentive) was difficult. An informal assessment was done and the testing coordinator told me she was completely puzzled by her. She was able to pass by the skin of her teeth the math, and do really well for reading part. She also passed speech previous yrs. as well as this yr. too. Feeling frustrated/worried.. I had her tested during spring break. This time I had to private tested by an OT as I noticed during dance classes, she had a hard time with following directions, gross-motor, attention (in-attentive always needed to be prompted), and processing information took longer. I mentioned my processing concerns with them as well. Well, that is when I learned at age 5 she had Dyspraxia. That is when my intervention journey began. In more ways than one. I started my own interventions at home. Retaught her math, and also paid for an outside OT to start during the summer. I didn’t push testing-I probably should had/and I regretted that during first grade–however; I was still trying to get over the loss of my mom and also I started a new job closer to home!

Victoria "Tori" Madison 4Enter first-grade Tori /my first year as RTI (Response To Intervention) Specialist/Teacher for County. I was hired as County-wide RTI person to implement best practices for elementary, start the RTI process, implement progress-monitoring, as well as input data-and do interventions for the county. Needless, to say it was quite a job! No one knew I was doing my own RTI at home lol. Not even family/friends. I did talk to her teacher and outlined everything-typed out my concerns, her strengths/weaknesses, where she was at. Well, her year progressed much like mine lol.

She was making slow progression and was put on a “Watch List”. I had her tested for vision during Fall/free screening for double-vision–oculomotor seeing 3D vision. I really didn’t know what it was. Without a doubt she qualified–she was given a vision plan for a yr. to help her meet her goals. Luckily, my old insurance from my other job ran out in August–and it paid for everything! Woohoo! I took advantage of it. In addition, I was re-teaching at home skills (math) – and she was put in karate again (we tried it out last yr spring). Best decision ever. Karate has worked with her core.

In addition, I started her playing piano during summer. We were lucky to find an amazing piano teacher that works with her–he is so patient. She also attended dance (combination ballet/tap & jazz./ 11:00-12:30 on Saturday). Also, she was in a few pageants–that summer and at first she wouldn’t walk across the stage. The first pageant she went into was “All Around Crown”… everyone who entered received a crown…She wanted that crown so bad.. so she did walk across the stage (not eloquently lol.. but she got something for doing it.) It was then I realized that having little goals with something to earn was a great mind set for her/motivating. I called Saturday’s our “Enrichment day”. We would go to Piano in the morning, then leave directly (already dressed) go to dance 15 min. away. During the week is vision class, as well as piano practice /doing piano & other homework.

We had many snow days so I was able to reteach school concepts–extra plus! I learned that “Touch-Point Math” addition was the best for her learning as well as “Hands On Learning”. Fall she was brought up child-study twice. She was tested in December before Christmas Break. She was found to have weaknesses in: processing, gross-motor, fine-motor, math, oral/retelling.. she excelled in rdg. decoding. She did not qualify for speech. However, she does demonstrate difficulty following multi-step directions, asking for questions for help. I believe she is improving socially. Also, attention was noted as well (inattentive-needs much prompting). It’s good to finally have things in place. I dropped the OT as I had to pay out of pocket (85.00 each visit)–but I did learn some strategies. The PT was wonderful.. I was told to order inserts for her feet (as she walks like a duck) sometimes/walks heavy. Another part of pageantry (walking elegantly that we work on). We decided to have her repeat first-grade. All the teachers also felt that it would be of value to her. I did go back/forth due to her disability as I know she will have obstacles but at the same time we were just starting to see a lot of progression–and some maturity and thought that another year would be good for her. She is also very tiny/petite-size of a kindergarten child and she seems more comfortable with kindergarten children.

By the end of the year of first grade we accomplished the following: skipping, adding (touch-point math), reading (decoding up to third grade)–working on comprehension (using Visualizing Stars as well as IPAD activities–which she loves)– vision-tracking/etc–much better (including seeing 3D), did her first talent show in a pageant–danced to “Annie-Tomorrow” won first place! Did talent show- school in front of entire student body–Annie! (No prized were given-but she did so well).., two piano recitals (fall-Spring/entering first grade piano book), Won Queen in some pageants–best outfit of choice, most beautiful-pageant–)– Now LOVES to go on stage-pageants! Learned how to to do a split, various dance moves – dance.. (I had to reteach tap/jazz moves lol, and piano teacher teaches me piano too), karate – went from white belt to GREEN—! Hit a board… Won awards at school–Best Citizenship, Helping Hand, Harmony Music Award, Reading Improvement Award :). Started Therepeutic horse-back riding–8 sessions which was not cheap (400.00).. Whew.. I can see where this is worth it though. Helps balance-so I dug into my savings…

Attention remains concern. I’m researching this. Tried Carlson for Kids-Norwegian Cod Liver Oil/bubble gum flavor & Kids DHA Omega 2 tablets. Also, Tori gets so tired /exhausted mid-day. I was looking at essential oils thought I might try them. Her attention remains a concern though because she misses a lot of instruction due to her inattentiveness. Also, she still won’t ask questions in class and won’t ask for help. She is also a very poor test-taker. Right now, with RTI in school kids have to take screenings tests on the computer so we are looking at accomodations to help her with the computer eye/hand coordination isn’t the best (but has gotten better)–but the attention is also affected. Also her energy gets lower–so wandering what I can do about this as well to perk her up.

This summer– we will continue piano. (She cannot say syllable words right lol–she says peeaneeo lol).. Both she and I my son will take swimming lessons. I have a 3 yr. old too (goes preschool 2 days-3 days next yr). I am putting Tori in Sensory Swim School.. I heard fantastic reviews–It did cost more than my sons.. but last yr. I did regular swim lessons and didn’t feel that it did much for her. She loves the water! Tori will also go into Tiny Miss VA pageant–and play the piano. I’m working on getting sponsors to help with this. Pageants have helped her (social/confidence/walking gracefully/ and motivated her to perform better/work on piano)…She will play the piano! I bet she is the first dyspraxic child! Add pageantry on my list as well lol.. She will walk in one-piece bathing suit, gown, and casual wear. One of my concerns–for this wknd. of Tiny MISS VA events–is her energy–not sure what I can do to maintain it during day–(as her movements, energy decrease as the day progresses).. I could try some exercises-which I have (and sugar lol) but she still gets tired. I will also reteach her math (ordered Touch Point Math First Grade Tutor).. and work on rdg. comprehension, and have her keep writing journal of our fun summer times/experiences. Time4Learning seems good and Adapted Mind Learning (trying these out). I want her to do all these computer programs using a Mouse to help hand/eye coordination. Swimming should be a good OT benefit as well. Singing–I might attempt to teach her how to sing while playing piano. Sometimes she drives me crazy singing the same song OVER and OVER again… I finally got to her to “LET GO” of the “LET IT GO SONG!!!” She sometimes repeats things over and over lol. She can tell time/and now that she is READING she updates me on the weather as it flashes across the TV ALL the TIME lol! Also, she has become a back seat driver and I was pulled over one day (speeding)–which she tells everyone.. and I’m always updated on the speed limit lol.

I know now that I need to advocate for Tori. I will probably have to advocate for her/her entire school career. I’ve found that most teachers are not familiar with Dyspraxia. Although, the school psychologist whom tested me did put me at ease and told me that she felt that Tori fit the “dyspraxic model to a T”.. and looked up other famous people with dyspraxia 🙂 I had no idea Harry Potter had it 🙂 I admit as well, that I worked with a variety of disabilities (down syndrome, emotional-disturbed, ADHD children, LD, autism, etc.) but not a child with dyspraxia. It puzzles many people. I have had a few people ask me if Tori was on the Autism Spectrum, or born premature. It did hurt me. I even had a few parents at pageants this year look at me in shock when I tell them how old she is. So now, I do not like to answer them lol. One parent was so nice telling me how beautiful she was etc., then during line-up argued that there wasn’t anyway she was in her child’s age group lol. We keep to ourselves now when we go to pageants lol!

I’ve kept to myself regarding Tori’s disability as well. Most people do not know that she has dyspraxia. Her special education teacher/assistants/ teachers that work with her do. I have to say that we are very blessed to have very caring people work with her outside school. Recently, Tori’s piano teacher showed his example of his “Miss America” walk. I don’t believe we laughed so hard! Also, Tori’s dance instructor Miss Shelby worked with Tori outside class to reteach her dance moves as well as pageantry. Her karate teacher has worked with her on her self-esteem, social skills, and partnered her up with a peer buddy! It brings tears to my eyes to know how far she has come along!

I continue to learn/grow with my dyspraxic daughter. Tori has taught me to be a better teacher/educator, and to learn determination/new adventures in life. I look forward to continuing my journey with dyspraxia. I have become the best researcher it seems on this disability-my mind has become a sponge. I enjoy learning for the Dyspraxia sites. Thank you for allowing me to share my story. It is another part of my journey to share.