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19
May
12

Camp or not to camp, that is the question….

By punkymama 5 Comments
Categories: Punky Mama
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Summer is quickly approaching and if ONE MORE PERSON asks me what camp Ryan is going to for the summer I could scream.  They never ask about Aaron, is it just certain types of special needs kids who needs camp?  I don’t know.

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?

18
May
12

In where your heroine turns into a vampire.

By punkymama 1 Comment
Categories: Punky Mama

I have not worked two late nights in a row in quite a while and I had forgotten the hell of sheer exhaustion buzz in my head.  Of course, after dropping the kids off at school this morning, I was wide awake and decided that gardening a little was absolutely a grand idea.  I eventually went back to bed, sleeping fitfully as someone who would rather be asleep at night would.  The clear blue sky and my deck called my name all day.   I so wished I could of listened.

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.

 

17
May
12

Hi Ho Hi Ho its off to neurology we go!

By punkymama 1 Comment
Categories: Punky Mama
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When we last saw the developmental pediatrician for our exploration of an Autism diagnosis she left me with a seventeen point list of tasks to complete.  I joke not, seventeen line items of things for me to do.  She wanted for us to see the neurologist for a follow up because Ryan was starting to lag in gross motor skills.

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.

16
May
12

I am so sick of talking about homework

By punkymama Leave a Comment
Categories: Punky Mama
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The school is trying to make me feel like the worst parent in the world for not being on board with our extreme homework load.  Our BSC called tonight and exclaimed that our homework should take only thirty minutes.  THIRTY MINUTES.  What!!!!!  Even if we were just studying for tests we would be working for up to about  90 minutes at least.  Before we get to the homework we have to read for fifteen minutes and do the computer math drills called, First in Math, for twenty minutes.  Before we even touch the homework we have done thirty five minutes of assigned drills and reading.  Only then we get to the endless worksheets and the studying that takes Ryan twice as long as other kids.  All I could think was BSC, dude you are smoking some fine stuff if you think we could ever sit and do homework for thirty minutes.  Believe me this teacher believes in family torture.

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.

15
May
12

the homework struggle and how we are celebrating food allergy awareness week

By punkymama 1 Comment
Categories: Punky Mama
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I was feeling at the end of my rope and started a homework log in April.  It is a document with what Ryan completes during our homework sessions and how long it takes. The shortest homework session was one hour which was a day where we had no homework but we studied for exams and the longest session was close to three hours.  We have had at least two nights a week where homework took close to two and a half hours and we work on homework six to seven days a week.  I was getting no where with the classroom teacher and the special ed teacher in getting our accommodations reinstated to where they were in April so I included the principal and the head of special ed when I emailed the log. The principal emailed me back that she was going to have a meeting with the teacher and special ed teacher this past Monday.

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.

14
May
12

Food Allergy Awareness Week

By punkymama 1 Comment
Categories: Punky Mama
Tags: ,

It is that time of year again, food allergy awareness week.

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?

13
May
12

The discomfort of Mother’s Day

By punkymama 1 Comment
Categories: Punky Mama
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My mother self admittedly has said if she was a younger woman she would of never had children.  She resented motherhood, her children, and the responsibility.  I was born more than a full decade after my sisters.  They were about three years apart with me way behind.  My whole childhood I spent  in the way of my Mom her living her life the way she wanted.  When I went to college she did not visit me in my new city for almost 20 years and not till Ryan was born did she walk into my home.  Mother’s Day was always a time to hold my breath.  She is a super critical person and Mother’s Day we either did too little, too much, didn’t get her the right thing, or something. It was an anxiety ridden time, from the time I was a kid.  Even now the thought of Mother’s Day has me feeling cranky.

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.

12
May
12

A Night That Lived in Infamy.

By punkymama 2 Comments
Categories: Punky Mama

I am tired.  Bone tired.

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.

 

11
May
12

Listen to Your Mother Day

By punkymama Leave a Comment
Categories: Punky Mama

It’s Listen to Your Mother Philly day!!

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!

10
May
12

anxiety creeps in

By punkymama 2 Comments
Categories: Punky Mama

Today after the third day of homework this week that took over 2.5 hours I gathered all I had and reached out to the classroom teacher, the special ed teacher, the head of special ed, and he principal. In April the special ed teacher claimed Ryan, “did no homework during the week”. They have been trying to get us to do all the homework at night, slowly. It had been hell. So I started a log in mid April to EXACTLY what we did day by day. Tonight at the end of my rope I fired off this email.

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..

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