Saturday, April 27, 2013

The Sun has come up

Ah spring.  What a beautiful weather week we have had.  My flowers and getting bigger every day - I even see changes from morning to evening with some of the faster growers.  I walk around our huge yard admiring natures ability to be on time year after year.  This is my favorite time of year - watching all of my perennials resurface after a long, cold winter.  Warm, yet comfortable, days and just enough rain that I don't have to water the plants that often.

We have a huge yard.  We have 100's of plants that I tend, plus a very large yard to mow.   It is a lot of work, but we love it.  This year, we are mulching all of our plant sites (I have 10 large sites to mulch - no easy task) so we had it delivered.  This is the first time we have needed so much mulch that it was better to have it just dumped in our lot all at once rather than make 50 trips to the hardware store.  Plus, believe it not - this way is cheaper because we are buying in bulk.

I took a picture of our mulch pile, but blogger will not let me post pictures tonight.  No idea what is happening, so I will try tomorrow.

Our mulch pile is crazy big.  We bought 10 cubic yards of mulch to start with and hope that it will be enough.  My mom and I started spreading it while she was here, but we hardly made a dent.  Little by little.

I took a picture of Arlington with her new bike that will have to wait as well!  It is up and running now.  It needed some tweaking which my dad did while he was here.  He is definitely a bike expert after all of his years of experience, so I knew he would be able to make it perfect.

this week was madness from beginning to end.  The kids were back in school after a week of spring break.  Arlington had her first softball game.  Early morning braille sessions are back.  My parents came in WEdnesday afternoon and left this morning.  Cainan had a tee-ball game this morning and the girls each had a birthday party.  And now Arlington is at a Girl Scout overnight with her troop.


It is getting harder to work on our upcoming fundraisers due to the warm weather.  The yard calls me to come and play.  The kids want to be outside until it is dark, and I want to dig in the dirt.  So I am sitting most evenings working on the June 15th fundraiser instead of blogging!

Not too much complaining though because we are so excited for that event.  We have huge, amazing baskets for our raffle, and $9000 in sponsorships.  People are signing up.  I still get daily mail with donations, registrations, basket raffle items.  So I am afraid the blog will continue to take a back seat for awhile.  I will still be here at least once a week - hopefully more.  But don't be surprised if 4 or more days go by with blogging silence.

So go out and enjoy that sunshine.  Plant some trees or some flowers.  Plant a veggie garden.  The summer is so short for us here in the north that I plan on taking advantage of every minute.

Monday, April 22, 2013

Now that it is over

Now that the crazy week is over in Boston, I feel like we can breathe a little easier.  Mat and I live about 15 miles from where the criminals were caught.  Pfizer was closed on Friday, just like all of Boston.  There has been nothing on TV for an entire week while we watched the bombing, the aftermath, and finally the capture.

The hardest was trying to explain some of it to Arlington.  We didn't let her watch the footage, of course.  But she was still aware on some level.  She worried about the people who were hurt and killed, and worried that the "bad man" had not been captured.  10 is a funny age.  She isn't quite old enough for all of this but yet she isn't a little kid any more either.  She understands that sometimes people do bad things, but in the end - they always get caught.

Our hearts are heavy for the families who lost loved ones, and for the people whose lives are changed forever.  13 people lost limbs.  13 people who will never walk normally again. 1000's of people who didn't get to finish the race they trained for.  A city shut down and millions in revenue lost.

What these two men didn't understand is what happens to people who mess with Boston.  I found a tweet that said it best, "Boston is probably the only city that if you mess with them, they will shut down the city, stop everything.....and FIND YOU".

And find them they did.

We thank the first responders, the nurse, the doctors, the police, the military, the fire department, and a slew of very brave civilians that saved 100s of lives this past week.  The outcome could have been very different without them.

Now we move on.  Like we always do when tragedy strikes America.  We pick up the pieces, and learn from mistakes.  And we add a few more people to our forever memories.

Sunday, April 21, 2013


The last day of our spring break is coming to a close. All of our company has gone home, and we are getting things in order to go back to school tomorrow.  It is time.  We had a great break, but it is time for the kids to get back to school and finish the last 9 weeks of school.

The weather was great almost every day over break, so the kids got a lot of outside time.  The rode bikes, played with friends, and enjoyed spring.  I got the yard cleaned up - with a lot of help from visitors - and watched each day my plants get a little bigger.

Today Mat and I went and bought our lawn tractor to mow the lawn.  After 4 years of mowing the huge lawn with a push mower, we finally broke down and bought one.  I can't wait to mow the lawn now!  We also got a plow for the front to push dirt and  - more importantly - snow.  We also bought a new grill, and all the fixings to get the yard in shape for the spring. 

Here are some pictures of the kids.  I still haven't gotten a picture of Arlington on her new bike.  She has been riding it endlessly, but I have been working and kept forgetting to take her picture.  Soon!

Enjoy the pictures:

This is the bike we got for Finley on a recommendation from a friend who also has a vision impaired child.  She can't really ride a regular bike any more. She loves this thing:

 Cainan and his new bike:


Wednesday, April 17, 2013

Spring Break

I am still alive - I promise!  We are so busy now that it is spring break for the kids that when I sit down at night I am just working on stuff for our upcoming fundraisers and then going to bed.  Having them all home during the day takes up all of my time, so my projects have to wait until the evening.  Now that the race prep is in full swing, the blog has taken a back burner.

All three kids have gotten new bikes!  I have taken some pictures, but want to take Arlington's picture tomorrow and then I will share.  We bought Finley a Razor cycle, which is low to the ground.  It just isn't safe for her to ride a regular bike anymore, and she loves this thing.  Now she can still go around with all the neighborhood kids and be safe at the same time.

Mat's Aunt Betty was in visiting us since last Friday and just left this morning.  We had a great time while she was here, and the kids are missing her like crazy already.  She helped me so much in the garden and we are in a really great place now for spring!  The yard looks great!  I love watching all the spring plants come up.

Tomorrow Mat's parents arrive to spend a long weekend with us.  The kids are excited about all of their spring break visitors.  Since we didn't go anywhere this time, we are glad people are coming in to see us.

We have kept busy, and the weather has been beautiful.  Too nice to spend our days in doors and everyone is exhausted come bedtime.  A perfect week.

Wednesday, April 10, 2013

Artist in the House

Today the artist that has been working on a project with Finley returned to finish their project.  He brought with him another one of this art students, which Finley loved.

They spent a few hours this afternoon (yet another lovely half day for the students) and they had a blast.  They finished their masterpiece, and it came out really cute!

So here is the final product!

Saturday, April 6, 2013

Massachusetts Event Logo

I am still mad over all this IEP garbage, but today I am moving on.  I am so busy preparing for our Massachusetts event and Pennsylvania event for Finley that I don't have time to fixate on stupid people right now. 

So since it is the weekend, I have been working on event stuff today.  We have gotten a lot of nice donations and the baskets for this event are going to be HUGE!  If you read our blog and live near us in Massachusetts, we would love for you to come to our event!

If you follow this link:

You can read about our event and it will take you to our online registration.  We are very modern.

This past week we received the entries for our t-shirt design contest for our Massachusetts race.  Every year for our Pennsylvania race we have had a student at one of the local schools design the logo.  We always get amazing entries and have a hard time deciding.

Here is this year's Massachusetts event logo:

Great, right?  We loved it.

Tonight was the daddy/daughter dance for our local girl scouts.  Finley and Arlington and Mat went to that until 9pm and Cainan and I hung here and watched Ningago.  It is so peaceful in the house right now.....I wonder why.......

Thursday, April 4, 2013

IEP and me

This is my least favorite time of the year.

When I worked in the school district in Connecticut, I attended every team meeting, IEP meeting, 504 meeting that there was at the school.  I called myself "Switzerland" because I would be the mediator and calm middle between the staff and the parents on many occasions.  As the school nurse I was able to have a nice role.

And I learned......A LOT.

When Finley was diagnosed, I learned even more.  I was now on both sides of the IEP table, so I had a nice view.  I was able to understand the acronyms the staff would use, and I knew what to ask.  And I knew what it all meant.  I felt empowered.

Until we moved to Massachusetts.

Last year we were given a teacher that could not have been a more wrong fit for Finley.  She didn't understand Finley's needs, and was very nervous.  She focused all of her energy on Finley being a summer baby and not getting Finley to be successful in class.

So, at the end of last year, and around IEP time, I was told Finley would be recommended to go to transitional instead of 1st grade.  It was at that time we asked to have a meeting with the whole team - including Finley's aide, and we were told "aides don't attend meetings".  But I talked to a few higher ups and it got resolved and Finley's aide was able to attend the meeting.

The second request I had last year at this time was to visit the first grade classrooms (as well as the transitional classroom) so I could see how they were run, some of the teacher personalities, and the curriculum of first grade so that I could make an informed decision.  All allowed.  The Kindergarten special education teacher accompanied me to several first grade classrooms, let me spend 2 hours in the transitional classroom, and asked me who I thought would be a good fit for Finley for first grade if she went.

So, here we are.  Second verse, same as the first - right?  Wrong.....o.

We have a new Special Education Liaison.  Her name is Rosaria.  She has been a thorn in my side all year.  Just to back track a bit - Finley's IEP is almost all braille and orientation and mobility goals.  The Special Education doesn't see her.  Rosaria has probably spent a total of 10 minutes with Finley this entire year, and she doesn't know her AT.ALL.

But - she is the person I have to deal with in the first grade.  She has to attend the meetings and cant' seem to stop herself in giving her opinions.

What I have learned about her from other parents is that if she gets an idea in her head and she thinks she is right she isn't going to let it go.  Even if she is in the wrong.

Finley's IEP is coming up in May.  I told Rosaria that I would like to have Finley's 1:1 aide at the meeting.  Rosaria told me "teacher's aides don't come to IEP meetings".  I kindly smiled and reminder her that this is Finley's aide - she is not a teacher's aide.  She has come to meetings in the past, and she is a valuable member of the team (considering for the last two years she has been with Finley 5 days a week, 7 hours a day).  She knows Finley the best.

Rosaria told me she would going to have to check with the principal.  I wasn't worried because the principal let me last year.

We are also being asked to make the decision if we should keep Finley in first grade or send her on to second grade.  The teacher would like Finley to do first grade again.  Even though she is academically on track, she feels that Finley is developmentally young and could benefit from another year.  We have had two meetings about this (you can read back in the blog history if you want!)

 So, just like last year, I asked to visit the second grade classrooms and visit a few teachers and see the curriculum that she will be required to master by the end of second grade so that I could gather more information.  And, with Finley's special needs being very unique, I wanted some input on the teaching styles there were in second grade so that we could make an informed decision about her placement.  Rosaria told me that I wasn't allowed to do this either.

So I went above her.  The name of our Pupil Service's director is Diane.  She was the one who permitted Finley's aide to come to a meeting last year.  So I called her and left her a message stating my interest in having Finley's aide at the IEP meeting in May.

She didn't call me back.  Instead, she had Rosaria call me.  Rosaria proceeded to tell me that the "District policy is that aides don't tell meetings".  I proceeded to read her the law that states:   " Parents have the right to bring any person to an IEP meeting with knowledge of the child or the child’s disability including advocates and attorneys."  (This is verbatum from the IEP federal laws).  She proceeded to tell me that doesn't include District employees.

Uh, wha wha??

She and I had a lot of back and forth on the phone.  She started going off on a tangent about how Finley's aide should only be her aide for 2 years anyway, because that is how the district does it, and that she could be changed at any time, on and on....

I kindly reminded her the her aide got her job because she was willing to learn braille and work with Finley.  Her aide has learned BRAILLE.  Her aide is SPECIFIC to FINLEY.  I kindly asked Rosaria if she had a multitude of aides on her staff that knew braille and could take the place of Finley's aide at any time.

I already knew the answer, but I wanted to hear her say it.

We didn't leave it well.  I told her that I wanted Finley's aide at the meeting and she would be there as our guest.  She told me she would check with Diane.

In the mean time, I called Rich - the principal.  I didn't get him either, so I left a message asking about having Finley's aide at the meeting and about visiting the classroom.  I didn't hear back from him, of course.

But last this afternoon, I got an email from him.  Here is what he said:

"Hi Jennifer,
I did receive your phone message today regarding your request to have Finley's aide attend Finley’s IEP meeting. The long standing practice of the -------Public Schools has been that teaching assistants (including those in 1:1 roles) do not attend IEP meetings.Therefore finley's aide will not be attending the meeting on May 21st.

If there is specific information that you would like from Finley's aide, let me know and I will ask her to share it with Karen, Nan or Rosaria, all of whom will be at the meeting.

Tomorrow I will be sending a letter out to all parents regarding the placement process along with a form soliciting parental input. Your input on Finley’s placement should be given on this form. If there is more specific information you wish us to consider, please be sure to let Mrs. Kenney (Finley's teacher) know. No parents will be visiting classrooms to see possible teachers for the upcoming year.

Yes this is what he said to me.  Yes I was visibly upset.  Yes I was depending on him to back me up as a parent he has a relationship with that was good standing.

This is when I called Mat.  I was shaking with anger and disappointment and knew that I couldn't be in control of this situation any more.  Mat called Rich at the school and got his voice mail.  Mat told him we wanted to schedule a face to face meeting with him.

In the meantime I wrote back to him and told him thank you for explaning the district policy, but that he still had to follow federal law which states that I can have anyone I want at the meeting.

Then I get this peach of an email from Diane the Pupil Services Director:


I talked with Rosaria and Rich earlier so I knew that Rich was going to talk with you about this issue early this afternoon.  I wanted to clarify a couple of things......

The regulations do state that parents can invite someone to the meeting who has knowledge of their child/ their disability.  However, parents do not have the authority to invite, assign or evaluate district staff as these staff members are employed by the school system, not the parent.

District administrators invite, assign and evaluate; depending on the situation as  school systems must keep in mind their broader responsibilities of making sure all students are educated and supervised. It is the district's obligation to ensure that we have the specific staff required as written in the regulations providing services and at the meetings, such as: chairperson, special education teacher, and general education teacher.  Sometimes that means they need to reassign staff so that the staff we're obligated to have can be present at the meeting and students in the classroom are not deprived of education or supervision.  

Ed assistants, 1:1 staff, and ABA staff work under the direct supervision of staff that hold the certification/ licensure to provide services. They are responsible for communicating with the staff they supervise to get the most thorough, accurate and up to date information to present at the TEAM meetings.  

I do encourage parents to invite people not employed by the district to the meetings. They write their name in on the attendance sheet and initial verifying attendance.  I do ask that if you are inviting a lawyer to give us the 10 day notice should we exercise our right to have the district's attorney present as well. 

I hope this email clarifies the issue for you.

What is this mumbo jumbo?  What I got from this is that the District gets to trump federal law about who I can invite to the meeting.  Yeah.....I don't think so.  Also I take from this that Finley's aide will be taking over Finley's classroom while Finley's teacher is in the IEP.  Kind of funny to me considering they don't even think she has the right to attend a meeting for the child she actually ASSISTS, but she can lead a whole class......okee dokee.

And even funnier?  Finley's IEP is at 8am on the 21st.  BEFORE school starts by almost 1 hour.  Finley's aide wouldn't even be working yet because.......Finley isn't there!  How about that!!!  (do you notice my sarcasm on this one?)

Her last paragraph was my favorite.

Mat responded to this email.  Told her that we do not agree with her interpretation of the law.  Asked her to provide either proof of a state or federal law that states that parents cannot invite district employees to an IEP meeting, and we would let it go.  And if that proof couldn't be given, and we still weren't allowed to invite her, that we would be seeking legal council.

I am just sick over this.  I contacted our Special Education Parent Advisory Committee and had a wonderful conversation with them.  I felt a lot better after that.  I have contacted my favorite special education teacher, Jess, who is the most informed person I know when it comes to special ed.  She agrees that the school has gone off the deep end.

But it doesn't solve the problem.  Not yet.  I hate being in this position.  All I want is for the person who knows my kid the best to be at her most important meeting of the year.  And I want to make sure that the teacher Finley is given next year is the best fit for her and her vision needs.  The school picked Finley's first teacher and it was a disaster.  This year, I picked and it was wonderful.  And I expect to be able to have input on that every year.  Finley isn't "Joe Smoe Student"  She has UNIQUE needs unlike any other student in the building.

This district doesn't understand kids with vision needs.  They don't understand that what I want is the NORM in every other part of the world when it comes to kids with vision issues.  Heck, with MOST kids with IEPs.  Yet, I am being treated like I am a criminal instead.  Ridiculous.

We are in a stand off.  Mat and I are not backing down.  We feel that we are being asked to make a big decision - to hold Finley back or not - without being given all the tools to figure out the solution.  

What would you do if you were me?  We want to hear from you!