Competitiveness and a special needs child

The end of the school year has been hard on me. There is good news that my above average sized 6 year old will proceed to first grade, but it is with some concern and trepidation on Mommy's part. I cringe when I read updates on how fantastic friends kids did. I feel like a big pile of doggy doo when I feel that way, but it doesn't eliminate the fact that it is how I feel. Then I feel like imposter Mommy. You know, where you feel you are coming up with things wrong with your child to explain away what is really poor parenting. Sigh.

That brings me back to my personal flaws. I'm realizing just how competitive I am. Reading K's end of year scores and test results was humbling for me. I have been incredibly blessed throughout my personal academic career. Things came easy to me and I did well. Things are not coming easy to K and it is new territory. It terrifies me as a mother. I know how mean and cruel kids are as social skills didn't come easy to me growing up. I really fear for K and how his classmates will treat him. He doesn't understand the nuances of interpersonal relationships. APD is part of it. Some days I wonder if it is more. I've made a phone call to follow up on those moments of wonder.

His reading and language marks were average to a touch below average. His math skills were average to above average (not surprising for anyone who knows M and I). His handwriting was scored marginal, as in doesn't meet standards for grade. K has been working the Handwriting Without Tears (www.hwtears.com) program for well over a year, and well, K can't write his letters without tears. K's essential tremor contributes, but really, if he can't meet Kindergarten standards will he ever be able to meet them? Then again, does it really matter? Seriously, how many job interviews start with a handwriting sample? Thank goodness for the digital era.

I don't want life to be easy for my kids but I certainly don't wish that it be hard for them. K is going to have challenges all the way through school. I'm looking forward to his APD therapy program starting in July so we can see how that goes. I have also called for an appointment with a Psychologist who specializes in developmental disorders. I want to get the ball rolling to see if there is more going on than what we have figured out so far.

Seriously, the kid has seen almost every specialist in town: GI, Allergist, ENT (Ontolaryngology round one), Opthalmologist, Otolaryngology round two (APD diagnosis), Neurologist, Speech Therapist, Occupational Therapist, and now Child Psychologist. Please don't get me wrong, we are AMAZINGLY blessed parents. He is an amazing, beautiful, loving child. He just has some challenges and we are trying to figure out how to best help him.

As you would say in digital land I heart K! He is my big boy. I adore him and promise to him that I'll figure this out and try my best to make it easier for him.

Random thoughts, mostly about K

Short business trips always end up being a time of some introspection. Longer trips I really start missing my guys, but shorter trips allow me some time to stop and think about things for a bit without getting lonely. Time with my thoughts is fleeting so I love the chance. One of my co-workers always stimulates positive thinking for me and helps me remember what is important, what to focus on, and how to keep all the balls in the air.

I’m really not sure where things are headed with K. The APD diagnosis gives us something to work with over the summer. There are other things still on the table that I have moments of worry about but then it passes too. We may still be dealing with ADHD or with Asperger’s. I have mixed feelings about both but know ‘what’ it is doesn’t matter, the love I feel for him is the same. I just want to know how to best support and help him develop. We have to work on the APD first to see if that helps the symptoms of the others.

Today was a big day for us. It was the last day of school. K has done well enough that he isn’t being held back so we are officially the parents of a first grader. I’m not sure how that has come to pass. Seven years ago this week I found out I was pregnant with K. Now he is a first grader. Somehow it seems like it was just a little while ago I saw that second line of the test.

T starts two day a week preschool in August. It will be the start of a transition. He is growing and developing so quickly. It really makes M and I step back and realize how much we missed with K. T is so much more verbal, knows many shapes, identifies letters, and counts. All stuff that K didn’t do until far later. Layer on top T’s physical strengths and abilities and boy do we feel like cruddy parents who missed a lot of signs that K was struggling. That said, nothing we can do to change that so keep working to help and support him as much as possible.

Work has been busy. Good busy, but crazy busy. M is going to come with me to EVO in Park City later this month. It is nice when work and life briefly coincide. The kids will stay here but we are really looking forward to the time together. Work is sponsoring the conference so that part will also be very interesting. I’m hoping to get a clue about blogging while I’m there and this will hopefully be a better place to visit come July.

The weekend after EVO we are visiting my brother and his family in NY and we are VERY, VERY excited about that. The cousins have a blast together. Stay tuned for pictures.

Crazy Couple of Months

Wow, what a crazy couple of months it has been. I need to get on here more frequently as an outlet. I've been letting my desire for perfection get in the way. So, what has happened since I last posted?

2 more teeth came out
T sprouted 3 new teeth
K, Mommy and Daddy went to Disney for Easter weekend
Work has been INSANE including travel
K was diagnosed with Auditory Processing Disorder
K has passed one round of allergy testing which indicates he MAY be outgrowing his peanut allergy
T is becoming increasingly verbal and making M and I feel badly about not realizing K had issues earlier
Family vacation planned to visit my brother in New York

I am sure I'll be back to post more about APD. I'm trying to find my way through it and figure out what we need to do. K is signed up for Fast ForWord this summer and I've spoken to the speech therapist we will work with during the school year. Of course, NONE of it is covered by insurance as it is not due to disease, illness or injury. Also trying to figure out details on an FM transmitter for the classroom.

I'm battling some crud which I believe is the culmination of a couple of months of stress. Every now and then the body has to throw up the flag of surrender and recover. Thank goodness for antibiotics!!!

Sorry for my shoddy blogging. I just started playing with the blog in January and haven't had time to figure out what I want to do with it. Perhaps I'll get some ideas at EVO in Park City. It may end up morphing a bit to be more about APD or it may stay as a general blog about the kids. Who knows???

Bloody mouth and bloggers. What a week!

Such interesting weeks we are having these days. We had a very good weekend and started our week off well. We knew it was a busy week but nothing out of the ordinary. Things were going well with a good offsite meeting for work and then the dreaded text came at 4pm from our Nanny 'Call me ASAP.' The words that make a mom's heart sink. The first words I heard were 'we are on the way to the ER.' Yep, it REALLY was that call.

We sorted things out a bit and I figured out it was an oral emergency and after a quick phone call we discovere K's pediatric dentist was able to get us in as soon as we could get there. I met them at the dentist and about puked when I saw him. He had a huge bloody fat lip and his top left tooth was dangling from bloody gums. I try to not be a helicopter mom but I am a mom who does not let her kids run down hills. I cringe when I see kids running downhill on hard surfaces because I worry about them falling on their mouth.

Well, I am so proud of my little guy. The x-rays showed no concerning damage to his permanent teeth or any of the other baby teeth. K didn't whimper, cry or even flinch when the dentist pulled the tooth without any numbing. He has three other teeth that are now loose and will likely fall out early. Once we got in the car he declared it THE.BEST.DAY.EVER! He was tickled pink that he got two stickers and an army man from the dentist and that he got to have ice cream and applesauce for dinner. Not to mention that the Tooth Fairy would be coming too.

How our little ones remind us of the true joys in life, no? Ice cream for dinner is a pretty darned good day, no? He really reminded me that the little things in life are quite often the really good ones. We are thankful it happened now instead of once the permanent teeth were in and also thankful it wasn't an arm or leg.

I had a chuckle when I got over the initial panic of the situation. The reason is because of the way the accident happened. K was at his weekly Occupational Therapy appointment doing an obstacle course that helps him with his balance and spatial awareness. He tripped over a balance beam and fell face first onto a ramp they use with a scooter board. Final score: Ramp 1 - K's mouth 0. Well, I guess we have some pretty good reasons to continue the OT ;-)

As for bloggers and what they have to do with the week? A couple of weeks ago I noticed there was going to be a Social Media Forum here in town. I sent in my RSVP and then found out a co-worker was going to be on the final panel of the session. Well, the co-worker ended up sick and asked me to fill in and viola, there I was on stage having a great time with it. It went pretty well for my first time doing something like that. I was impressed by the fact that our panel was all women and I felt we did a great job of addressing some of the issues of social media in business. If you want to know more search #knoxsummit on Twitter.

Travel and tremors

Busy seems to be an understatement. Please don’t get me wrong, life is good. I love the work I am doing, love watching the boys grow, love the adventure that is otherwise known as life.

Last week took me to Houston for work, this morning takes me to Chicago. Last week’s air travel home from Houston was bumpy! I actually went looking for the little white bag. The weather patterns this winter have been crazy. There was snow in 49 of the 50 states last week. It is all that lovely global warming at work.

Wedged between my business trips was a trip to Florida to visit Nanny and PopPop. Unfortunately the weather didn’t cooperate with our jaunt to Florida. My brother, his wife and two kids (E who is 7 and C who is 5) were snowed in and their flight from LGA cancelled on Wednesday. The purpose of the trip was to get my family together for a weekend. Unfortunately, it didn’t work as planned.

The Florida trip was one of multiple firsts. It was my first zone defense trip, as I went on my own with both boys. It was also T’s first time flying. K took more than 20 flights by the time he was 2, T not so much the air traveler. I have to give some MAJOR props to the Cares harness, which is FAA approved. My little wild man was happily restrained making Mommy’s life MUCH easier on our 4 flights. To find out more information, visit www.kidsflysafe.com

It was unseasonably cool in Ft. Myers. The pictures of the trip look like we were only there for two days because the boys had to keep re-wearing the long sleeve/long legged items I had packed. We arrived late Thursday and stayed until mid-day Monday. They boys shared a room and did well with the notable exception of T mastering the art of crib escape. The distance from mattress to top was 24”. After escape number 4, I placed a call to Daddy adding a chore to his to-do list for the weekend. Convert the crib to a toddler bed PRONTO. No need for a trip to the ER in the middle of the night for a compound fracture (his bedroom floors at home are laminate).

My parents started my trip well with a trip to the spa for an hour massage. Not surprisingly, Nan, the poor woman who had to work on my tense body, found some knots that ‘she could take home and work on all weekend’. Relaxing just the same and a nice start. They boys were spoiled with a trip to the toy store and pizza for lunch. Friday was generally low key and a pleasant day.

K and I were able to get in our one and only time in the water that afternoon. We had a blast chasing the submarining sinker that was part of the toy store loot. The Floridians find 70 far too cold to swim, not to mention it was sprinkling rain, so we had the pool completely to ourselves. It was perfect timing as the lightening sirens started within 30 minutes of our return to the condo.

Saturday took us on a pirate cruise on The Pieces of Eight, otherwise known as a marketing ploy to suck money out of unsuspecting, or completely willing and happy, grandparents. There were many opportunities to spend money with hats and souvenir cups for sail on the ship and a lovely gift shop full of pirate themed gear at the end of the pier.

Additionally, smart operations by the company that runs it, they require a credit card at the time of booking a reservation. At 59 degrees and with small craft warnings, it wasn’t the best day for a pirate cruise. But, ahoy mate, we went as they had our credit card number. K loved it, we enjoyed it, T soaked it in like a sponge from the comfort of his stroller. Face painting, story telling, limbo dancing under a stick with a rubber skeleton tied to it, treasure gathering, and various other games for 90 minutes (and free Diet Coke refills with the purchase of a $4 plastic mug) left K wiped out.

Sunday took us on more adventures. K had bike races with PopPop, did some bird watching from the bay window, and then PopPop, K, T and I hit the Naples Zoo. They have spent a lot of money and significantly upgraded their facilities. I’m not one who is generally bothered by zoos and aquariums. I feel they play a role in conservation of species, rehabilitating injured animals, etc. That said, the Naples Zoo used to be depressing to me and I would cringe when it was suggested as an outing. They have significantly increased the size of the habitats for the animals that bothered me and added a new bear exhibit.

The piece de resistance of the zoo is their primate cruise in Lake Victoria (a tiny man made lake at the zoo). You board a pontoon boat and go out in the little lake to see a series of islands, each containing a different species of primate. The second we pulled back from the doc, T started to oh-oh-ah-ah as he spotted the lesser apes. He was very happy to be on a boat and watching the primates play. Again, more spoiling in the gift shop with the acquisition of a small stuffed alligator and two plastic giraffes (the second was an odd choice by T given there are not giraffes at the Naples Zoo).

The trip went well, the boys were charming on the flights, and Mommy was only slightly harried trying to handle them alone in the Atlanta airport where both of our connections were made. Thankfully Mommy has learned how to pack for visits to the grandparents. Arrive with bags with plenty of extra room and space taken up by consumables, leave with suitcases bulging and testing the size limits of the airlines. Good news, I have NOT sworn off traveling alone with the boys ;-)

I don’t think I ever update on our neurologist appointment during birthday week. K was diagnosed with an essential tremor. It is a relatively benign neurological condition that is hereditary in over 50% of the cases. I say relatively benign as it is a progressive condition and it can eventually cause problems with day-to-day functioning. When it progresses to that point, medication can help but the side effects are many so meds are avoided if at all possible.

It progresses at varying rates and K will be re-evaluated in 6 months to see if, and how quickly, his is progressing. An essential tremor is fairly common, and is characterized by the hand shaking when the muscles in the hand engage in fine muscle activities (opposite of how Parkinson’s presents). It can spread to the arms, neck and head with time. My son will most likely never be a sharpshooter or neurosurgeon but Mommy has a test during the teen years for underage drinking, it is widely reported that ingesting alcohol makes the tremor settle. All is good and it is about the best news you can get when you are sent off to the neurologist, short of a complete all clear.

Happy Birthday Baby!

I am playing catch up on my baby’s birthday. How is he two? Seriously, how did THAT happen? He was just an 8 pound, 8 ounce baby who looked so scrawny to us (K was 9 pounds, 13 ounces). Really, it was just yesterday. Or not. Sigh.

So, the baby days are officially over. I can no longer deny it. Thomas has turned 2 and Kevin has turned 6. It is amazing to think that I have a school boy and toddler verging on little boy. I don’t shed tears but yet there is a certain coming to terms that has to happen. I’m not one of those people who just melts at the sight of an infant but yet there is something, regardless of how finished you are with the phase, that you have to deal with emotionally.

Kevin’s OT is trying to raise money for intensive therapy for her daughter. I’m passing on much of our hand-me-downs and baby gear to her in preparation for a large garage sale she is having.If you would like to know more, please visit http://www.sendclaire.com/ to get the details. The nickel tour is that her daughter had a stroke around the time of birth and the therapy they want to pursue isn’t covered by insurance and will cost more than $30k in less than a year. It is cathartic having our baby stuff become useful again. It helps the transition.

We had a couple of friends over to celebrate with T. He had a good time with a friend’s little boy A. They played quite well together. Thomas is a big two year old and he towered over A, who turned 2 in October, but thankfully T didn’t intimidate him.

Happy, belated, birthday little man. I love you SO much and am so glad you came into our lives. I look forward to every day that I get to spend with you, just as I do with your big brother.

Food allergies suck!

There is no delicate way to phrase it. One child’s favorite food can kill my son. People who haven’t experienced food allergies find it ridiculous, alarmist, and ridiculous. Really? Alarmist? Do we let kids bring guns to school? No! Why would we allow something we KNOW can kill someone into the school and seemingly endorse said thing?

I’ve been battling K’s school this year. They are not a peanut free school and they don’t have a stated policy regarding food brought into the school. I get not claiming to be peanut free, and honestly, even as a food allergy parent I’m not a fan of peanut free schools as I feel they create a false sense of security.

For their Thanksgiving feast they INSISTED on Chick-fil-a chicken minis. Gee, lets let 50 Kindergarteners cover their hands with a known allergen. The solution was to put K at the head of the seating arrangement with stuffed animals on either side of him as buffer from the other kids. I offered to pay for an alternative food but they wouldn’t do it. What is so special about Chick-fil-a that they have to have it?

That leads to today. My phone rang at 1:03pm. I was on the phone with M at the time. The clinic nurse quickly passed me to K’s Teachers Aide and I could hear the fear and panic in her voice. K had eaten popcorn at the student-teacher volleyball game and it had been popped in peanut oil. Is this the 1950’s? Seriously? What the heck is the school thinking serving 600+ people something made with one of the deadliest allergens?

Oh, that is right, research shows that a very low percentage of people react to nut oils. Gee, thanks for the statistics, but my kid is one of the few that is the exception.

The response from the school:

I am very sorry for what occurred this afternoon. The popcorn was not brought from an outside source, rather it was made in our school concession stand. Certainly, we should have known that the popcorn was made in peanut oil, however we had parent volunteers making the popcorn.

In our correspondence concerning Catholic Schools Week sent out through the Friday Folder, January 22, we stated that the children would be served popcorn on Thursday-School Spirit Day.

We are thankful that K had no adverse reaction to the popcorn. As soon as Mrs. M learned that the popcorn had been popped using peanut oil, she responded quickly and appropriately. And we are grateful to you for bringing him an alternative snack.

Thank you for expressing your concern. We will continue to strive to do our best in safeguarding children with allergies.

Yeah, thanks. No adverse reaction? It took two doses of Benadryl to clear his face. Layer on top of that the fact that he was afraid to eat dinner tonight because it might not be safe. He has apologized at least 10 times that I’ve heard today for eating something with nuts. It has brought tears to my eyes so many times. He thinks it is his fault. He thinks it is his fault rather than the idiotic school policies.

Stupid freaking school. Why is it so hard to not have snacks at school functions? Why must every celebration be accompanied by food? Why can we so willingly and KNOWINGLY put kids at risk but then freak out about much smaller things?

I don’t get it. I don’t think I ever will. I do feel confident that God blessed me with K for a reason. Someone who 'gets it', embraces it and will advocate for him.