I jumped in the car and drove the 20 minutes back to the pool.  There was my phone right were I was sitting.  Luckily, I was sitting against the building in the shade and my phone was protected from most of the rain by the eave.

To make a long story short.  I am tired and all my time since the kids went to bed has been working or running around the Greater Philadelphia Area looking for my stupid, I can’t live without it, phone.  Goodnight.  Harumph

My Dad hated the movies.  He was a veteran of WWII and the loud artillery damaged his hearing.  From the time my Dad was forty, they year I was born, he was having hearing issues.  By his later years he wore hearing aids.  Talking to my Dad was a frustrating experience that did not improve with hearing aids.  Till the day he died he was sharp as a tack but couldn’t hear anything.  My Dad gave his hearing to his country.  So many more gave their lives.  What about the kids who didn’t have a Dad to take them to a movie he couldn’t hear?

I do not believe that war solves anything.  But I grew up during the end of the Vietnam War and no one should be treated the way those vets were.  War is the ugliest thing this planet has to offer. Thank you to the people who fought the wars valiantly, remembering those who passed, and here’s to leaders who know how to make better decisions before coming to blows.

This afternoon she motioned me over to talk to me.  My heart sunk.  Usually if a lifeguard pulls me over they have bad news and Ryan has really stepped over the line.  She said Ryan has been so well behaved all weekend.  The lifeguards were talking about the incredible difference in his behavior between this year and last year.  He has been using his please and thank you with everyone and following the pool rules like no running on the deck.  When a smaller kid budged in front of him in the high dive line he has been gracious.  A younger kid was scared to take his high dive test and before the test Ryan told him how to pass it.  He even got involved with the water polo game and since he was younger they let him be the goalie.  Ryan has all weekend wandered around the pool with a smile on his face.   I thanked the lifeguard as tears came to my eyes.  Rarely do people go out of their way to tell me what Ryan did right.  It meant the world to me.

Before we had kids we spent almost every summer holiday at the beach with our families.  Both my sister and his siblings have shore houses.  My husband and I were together 12 years before we had kids.  We were easy to invite to a beach house.  We needed little and we could camp in the living room.  Then Ryan arrived.  We were not as fun to invite anymore.  We had a BABY.  By the time Aaron arrived a few years after the 4th of July 2005 we were spending all the summer holidays alone.  My husband and I would pass the kids back and forth letting the other get a break here and there all weekend.  Ryan was tougher at the younger ages than he is now.  The boys were still napping in the afternoons and no one invited us and we were too overwhelmed to invite anyone. It was a lonely time.  Then we joined the pool but even then we had no friends that first year till Labor Day.

Things have changed so much.  Today we went to the pool and soaked in the first day of the season with our very bestest pool friend K and her daughters.  The boys took their deep water tests and got their elastic band that they wear on their ankle all summer to declare their deep water competence.   We visited all our summer friends and I watched my kids get to be free range on ten acres.  Both boys came and went, found friends, and it was summer again.  Tomorrow the Listen to Your Mother Philly producers, Cecily,  Dresden, and their families are coming to the pool.  Shoshana who was a cast member of the show and her family  is coming too. Party at the pool with bloggy ladies and families.  Monday is my neighbor nephew’s birthday, we have a few sets of neighbors coming and one neighbor is bringing people we never met.  That to me is AMAZING.  Our holiday is full and busy.

My husband and I talked about all of the above.  He took my hand over the shared beer and said, we made it through to a better place.  I squeezed back and smiled.

Ryan has had enough with karate.  It’s hard for him to try hard in school and with his homework, to then go off and have to perform for karate.  Last week I worked on a Friday and my neighbor nephew took the kids to karate.  Ryan just could not maintain his behavior after going to after school program.  Usually on the mile plus walk to karate I subtlety work social stories into our conversation.  I have done this as part of our life for so many years that  I forget I am doing it.  These days usually Ryan starts the social story conversation.  He has ALL week told me how done with karate he is.  I told him that he needed to go back to karate and finish the month.  I told him he needed to leave the class as a gentleman in case he wanted to return someday.

Today he went to the class.  Ryan and Aaron were the only kids who showed up.  Aaron was having a hard time.  Ryan heard me and did his best.  He finished karate like a gentleman.  He did amazing in class and if he wanted to return he could.  I was so proud that at 8 years old he heard me and understood that burning bridges should be avoided, it you can help it. I am still feeling completely proud.

I get to leave that behind.  I get to be the cool 40 something lady with an interesting past.  When people ask about the kids I usually say, “I am not here to talk about that”.

15 minutes and I am out the door.  I am all a quiver.

Most of the time Aaron is a very smart, well behaved kid.  I take time sit with him as he reads his pile of books daily (he is up to 565 books read today) and help him with homework.  I praise him for everything he does right, he looses a privileged when he has done wrong.  I am as consistent as I am with Ryan. Each weekend both my husband and I take time just for him but still he is mega jealous of any time Ryan gets.  In his mind he is treated unfairly.  As soon as Ryan’s homework inevitably takes longer than his, he loudly declared how mean I am.  Today I tried to help Ryan finish his homework on the deck so Aaron could play with the kids outside.  A ball went on a neighbors upper deck, so Aaron walked in through an unlocked door into the neighbors empty house to retrieve it!!  I made him come inside for a while, I told him just how dangerous that was to do and I made him wait inside till I could watch him with all of my attention. Eventually he wound up running around outside in just his underwear and I had to drag him into the house when I said he was being inappropriate.

Ask me about when he was two and tried to take a bus to see me at work alone or this past Christmas we were downtown, he wasn’t paying attention.  He went to cross the street and he nearly got hit by a taxi.  Aaron, I have a heart attack brewing with your name on it son.

I have been stuck in the house with a sick Ryan so I tried to make the most of my time. I knew for weeks that the winter clothes in my kids dressers had to go.  They kept going out to play in 80 degree weather in pants and long sleeves, exclaiming, I can push up the sleeves as they had huge red flushed cheeks.  I took this sick day to be domestic and organized.  I planned PT and OT for the summer.  I contacted the very nice fellow at CHOP about the ADOS test and she told me we had to wait till December 2012. We then discussed an research study we could participate in where we could get the ADOS done in August. Hello, research study where do we sign up? I made sure I had all the necessary paperwork in order to start PT and OT services.

I can tolerate a ton of time with my kids.  Being with my kids usually means us being on the go, not stuck in the house.  I could never be “in the house” Mom who doesn’t work.  My senses are dull and I am climbing the walls. I forgot what day it was and Aaron missed karate.  Good thing Ryan is on the mend.

Love

Your On the Go Heroine.

A friend picked Aaron up from school.  Her daughter and Aaron conned her into hosting a play date/homework date.  He didn’t arrive home till 5:30pm!! When Aaron came home I had time to curl up with him in bed and let him read his six books to me usually I have my attention divided between the two.  The teacher caps Aaron at six books a day because he will bring home fifteen, if she lets him, and she wants him to take the time to be a kid and not doing homework for hours.  Yes, I know she is a teacher in the same school. If I could replicate the K teacher I would believe me.

I had time to spend with both kids today and focus on both.  Schoolwork didn’t take longer than thirty minutes in my house today.  I was at almost at a loss what to do with my time!!! It felt downright normal and almost decadent like eating ice cream or a mid week vacation day, then it hit me because everyday should be like today minus the sick kid.

2.  We went to the pool open house.  WOW.  Got to see the swim friends, we signed up for lessons and team, and played on the playground.  One kid try to go swimming and it wasn’t Ryan!! Awesome.

3.  While I sitting with Ryan while he did his homework this morning, I realized that only have two to three weeks of weekend homework left.  It feels like the last miles of a very long marathon.  I want to promise that kid at least two days a week off schoolwork all summer.  I keep thinking what will we all do with the extra fifteen hours a week.

4.  I am really missing having a meeting with Cecily and Dresden weekly.  Although I am not ready to take on another project with summer quickly approaching, it was nice to have co-workers and co-conspirators in a project.  They were like band members to me, if that makes any sense.

5.  Having my nephew in my hood is awesome.  Time for Sunday deck sitting and bar b que.  SWEET.

Why does Ryan have to go to camp?  He specifically asked not to go.  Last summer the school district had half day summer school and it worked great for us. I work from home some these day and I am going to have to find creative ways to work, but I feel like my kids are younger only once and I want to have a summer with them.  I gave Ryan two options, to summer camp or not to summer camp, and he emphatically exclaimed, NO CAMP.  He and I systematically designed a summer program together.  In the mornings we will go to our pool for swim team, swim lessons, and tennis lessons.  We can then stay at the pool if we choose for lunch, arts and crafts hour, swimming, and what not.  I can bring my computer and we can take time to work on school here and there back in the bar b que area, which is empty during the week.  Ryan will have occupational therapy, physical therapy, behavioral therapy (bi-weekly), and I am trying to find a socialization class for him.  The beauty of swim team is the choice of morning or evening practice and I hope to find a young teenager to help me at the pool as a “Mothers Helper” if I have a ton of work.  For field trips I have a Please Touch membership, a Zoo membership, and the Franklin Institute membership.  I found on online summer school curriculum for both kids to keep their academics sharp.

Camp for both kids could be about $5,000 to $8,000 for the summer. All of what I listed above costs about $1,500 for both kids.  I know what they do with their days and I can implement new ideas and help undo all the new negative behaviors that came with school this year by being super consistent, modeling appropriate behavior, and using social stories that Ryan’s teachers have not used this year.  I won’t have a teacher or counselor complaining about Ryan and telling me how he is manipulating me and how three hours of homework is normal.  I get a chance to help Ryan undo the hell that was second grade and give both boys all the attention they crave. They are so looking forward to our summer routine down to Friday mornings at Mrs M’s house and the weekly trip to the park with her grandkids and the other kids she watches.  I feel very secure in this decision and I have prepared well for the challenge.

Why is it every single parent, professional, medical person looks at me like I have three heads?  Do kids like Ryan HAVE to go to camp or they blow up or something?  Why do kids have to go to camp?  Why do I feel like I am neglecting my kids by spending some time with them in the summer?

After today I am off for the weekend.  I know tomorrow I am going to be up way too early since I have not seen the kids much in the past few days and this afternoon not at all. I can’t wait to  revel in their wholesome chaos.

For tonight it is back to the drama of the dive bar.  I love the power of remembering everyone’s drunken nights.

Ryan has ALWAYS been physically ahead of the curve.  He was riding a two wheeled bike at three. The early intervention folks came to my home to do his first IEP they sent the physical therapist packing in the driveway because Ryan was riding his bike down a steep hill and doing tricks at four.  He swims three to four days a week, nine months of the year and now also does karate twice a week.  Suddenly, since last summer Ryan has not really progressed physically.  He used to be the fastest kid on the playground, then he moved to the middle of the pack, down to one of the slower runners now.  Ryan’s BSC also noticed this and mentioned what I had been seeing.

Off to the Neurologist we went.  After doing a ton of physical tests that included Ryan running up and down the halls of CHOP we had a conversation.  Kids who have or had epilepsy sometimes develop differently.  Ryan’s precocious development is normal for a kid who has had seizures and his abnormal  lack of tone now is Ryan again following his own curve.  He wanted Ryan to see a physical therapist and work on bringing him back to where a normally developing boy should be.   For now he was staying away from more tests because unless Ryan has a seizure or we thought he was having silent seizures, given his awful history with epilepsy meds, he’d like to see if physical therapy helps first.

For the first time in forever I felt like I saw a doctor with Ryan and got a straight answer.

After the appointment, since it was lunchtime at school, I took Ryan to Clark Park in West Philly so he could enjoy the beautiful day.  We then quickly met an old friend for lunch. We had Korean food which I am discovering is not Ryan’s favorite, nor is green tea ice cream, but our friend brought us  muffins and he declared them his all time favorites ever.   On the way to lunch Ryan brought up his own social story on how to behave in a restaurant telling me what was acceptable and not acceptable.  School must be pretty bad when he announces a trip to the Neurologist created the best half  a hookey day ever.

The worst part of it being May is Ryan is FINALLY adjusting to school.  He finally is starting to have more green behavior days than red.  He is finally doing what he is supposed to do in school, like working on school work which is a plus because it is not showing up at home as even more homework.  Within a flash this hell they have called second grade will be over.  I fear next year.  I can’t have him taking eight months to adjust to school again.  I can’t have regular homework taking two hours or more everyday dreading someone elses homework from the time I wake up in the morning.

The best part of this being late May is that we have eighteen days of school left.  That translates into about twenty four or twenty five days of homework for us.  I fully expect the teacher to be giving us a ton of homework till the very last day of school.  I fear for next year and this year is not even over yet.

When I met with the teacher to discuss the results of the meeting I was handed a form for information on ‘social services” in school from a resource person who has supposed to  been helping us for two years.  She has not helped us in any meaningful way in the past two years, except for a present for Ryan at Christmas. I do regularly see her in her office with the door mostly closed nodding out on the day she is in our school. I have gone to her and the help she offered wasn’t what we needed.  When the district canceled summer school she wanted to get Ryan into a camp that didn’t really fit his needs.  So essentially the teacher turned us around in circles to get her way of less accommodations.  I am assuming this is with the principal’s ok with the fact I am basically then homeschooling Ryan after school while ignoring Aaron for up till three hours a day.  I could have DHS called on me for the neglect of Aaron but the homework is supposed to be done.  I am sick thinking about it.

I called a lawyer Monday and I am now on a waiting list for intake.  Tomorrow I try two other lawyers.  All of this is so not kosher.  I am so sick of them punishing Ryan by taking away any time he has to move when the therapists say he needs to move to help his sensory issues and concentration.  I can dredge up ten examples of where they are doing what is contraindicated for his issues on top of the hours of homework.

Onto food allergyland.

I emailed the kindergarten teacher about Food Allergy Awareness Week after Aaron asked me to talk to his class about food allergies.  I am going to use the elementary presentation on the FAAN webpage and hand out a coloring page.  The kindergarten teacher was so excited to have me teach her kids on how to be a pal to a food allergic kid.  It amazes me the kids are in the same school because the reaction I get from the teachers is so different.

I have a feeling this is going to be a long summer of fighting and intakes just like it was last summer.

Here are a few facts from the Food Allergy and Anphylaxis Network website that I want to share with you.

• Food allergy is a growing public health concern. As many as 15 million people have food allergies.

• Boys appear to develop food allergies more than girls.

• Food allergies may be a trigger for or associated with other allergic conditions, such as atopic dermatitis9 and eosinophilic gastrointestinal diseases.

•  Although childhood allergies to milk, egg, wheat, and soy, generally resolve in childhood, they appear to be resolving more slowly than in previous decades, with many children still allergic beyond age 5 years. Allergies to peanuts, tree nuts, fish, or shellfish are generally lifelong allergies.

I read these points and I nod my head.  I am the parent of the boy who is over five whose severe allergies are not resolving.  Nothing like being a statistic. A hot button issue this year is for schools to have epi pens in case of emergencies after the death of seven year old Amarria Johnson.  Her school did not have her epi-pen but had epi pens prescribed for other kids.  The school nurse and administration refused to use an epi pens that were prescribed to other kids on Amarria.  Her death was senseless one and having an epi pen for such emergencies would have saved her young life and other kids lives in the future.  School districts nationwide are changing their policies and are including epi pens along with bandaids in a schools nurses office.  Hopefully all schools will have this life saving drug soon.

Tonight my husband was home as a rare Monday treat and we were able to have dinner as a family.  I said to Aaron, it’s food allergy awareness week.  I asked him how he wanted to honor the week since he is the person with the food allergies.  He told me he wanted me to come to school and talk about keeping food allergic kids safe.  I hunted around the FAAN website and found a short presentation about food allergies for kids.  They even had a coloring sheet.  I guess I am off to  email the teacher.

That is how the family of the food allergic kid celebrate food allergy awareness week.  How can you all keep a food allergic person safer this week and always?

My experience of Mother’s Day is different.  My kids get completely excited.  They have been talking about Mother’s Day for weeks.  Ryan woke up first this morning.  He quietly slipped into bed with me letting me spoon him.  He lay as completely still, well as still as a wiggly boy can.  I enjoyed his warmth and the smell he has had from the minute he was born.  All my guys let me sleep in, and along with my husband brought me breakfast in bed.   I took Aaron to get groceries, a chore over looked with Listen to Your Mother happening this week.  Ryan worked with my husband on his weekend homework.  We then prepped a bar b que feast.  Finally, we are sitting on the deck filling a million water balloons for a water balloon fight that is kicking off now.   That, to me is the perfect way to spend Mother’s Day.

I want to honor all nurturers.  This is for the women who chose not to parent but nurture the world in their own way, for those who couldn’t have kids and so desperately wanted to and decided to live child free, for the single Mom’s who this is another Sunday full of chores before a long week of work, to the people who have lost their Mom’s or have a complicated relationship, for the single Dad’s who have to play both Mom and Dad, and for anyone else who has a complicated relationship with Mothers.  This is your day too.  May it be as glorious a day as you want it to be full of fun and love.

The show was exactly the way we envisioned it the day of our first Listen to Your Mother Philly meeting.  It was a show with twists and turns, tears, laughter, heartache, and hope.

There are just pieces and snippets running through my head.  Getting all dolled up and having Cecily do my makeup.  Cecily ALWAYS does my makeup perfectly.  Then the cast arrived and I started getting very nervous.  I hid outside for a bit.  Cecily was scared no one would show up, Dresden seemed cool as a cucumber.  Then one by one the cast told their stories.  I wish I had sat on the side like Cecily did because I regret not seeing the faces of the audience.  I was in the first row and I wish I would have been able to see the reaction of the crowd.  I read my piece, I was so nervous.  I wound up having a delayed reaction and I shook the rest of the show and was still shaking at the after party.  Facing the crowd alone to talk to them was hard.  I no longer had a band to hide behind if I made a mistake or a group of people who counted on each other.  Just me, my words, and people staring at me.  GULP.

The stories were so varied and rich, full of strength, love, pain and humor.  Each reader had their own flavor to add to the evening and each and every person was amazing.  Each had their own take.  I was honored to be part of the cast and to be a producer.  I would do something like this again with Dresden and Cecily. It was life changing.

I was touched by who I met, saw, and talked with after.  That is about ten blogs posts.  I was so touched that some of the producers of the New York show drove to Philly to share our night.  So many stories and conversations whirling in my head.  I am just too tired to tell it all.

Before I knew it is was over.  Today I am still feeling the thrill of the whole night. I was so proud of our cast, they really brought their A game.

Sherry from BabyPop Designs took glamor pics of me.  I will just post that and shut the electronics off, and watch a movie with my sweetie.

I couldn’t sleep all day, even though I got off work at 3am.  There is excitement in the air. My husband worked from home and I managed to avoid both drop off, pick up, and pretty much all things school today except for an email from the teacher saying she is having a meeting with the principal on Monday about Ryan.   I am all packed up and I am taking a train downtown since the Dad Vail regatta is going to be backing up traffic into town.  My husband is coming to help work the door,  he always backs me up in the various endeavors I have dragged him into, like the good sport he is.

I am anxious to get there a bit early with Cecily and Dresden my co director producers knowing they will help calm my nerves.  Knowing a trio can work together closely with a ton of success.

If you don’t have tickets we have some at the door……c’mon down!  See you all on the other side!

Hi everyone

I am reaching out to you all to open a discussion about the time it is taking for my son Ryan to do his homework. All year Ryan was given the accommodation of having the homework over the weekend to complete. We could break the homework into small sections and we had finally gotten to the point where we were no longer fighting with Ryan over homework. His younger brother was getting attention that he needed and as a family we felt our child was starting to succeed and we had a balance of work everyday.

Ms. B and Ms. V had decided to start phasing out weekend homework for Ryan so he would be like “everyone” else. As we all know Ryan is not like everyone else and has an IEP to back that up. With the addition of more homework at night our family life has become disrupted. My 6yo is getting less and less attention as the homework takes longer to complete. It is a trial and hard on not Ryan but us as a family. Ms Brooks said not to worry about homework but I am trying to teach my child a lesson in completing what is given to him.

Attached is a log of what we have been doing for homework and the time taken. The time has ramped up and is really affecting all of us. Please let us open a discussion on what we can do. Ryan’s TSS has offered to start his homework in class but Ms B and Ms. V were not receptive to the idea.  I will try anything but this is absolutely not working.

I got a quick response from the principal that they were going to have a meeting about this. It for some reason sent my anxiety levels to eleven. Add the last minute jitters before Listen To Your Mother Philly and I am getting to be a bit of a wreck. Can’t I turn the special needs off till Monday…Please..