Thursday, May 29, 2014

Growing Up

It seems like I always blog when I am dealing with some kind of frustration with Leah.

I wanted to share some REALLY good stuff from the past few days.

We went to a local amusement park on Monday.  It's called Darien Lake and it's kinda like Six Flags.  It actually used to be a Six Flags at one point, but it's privately owned now.

Anyway, there are TONS of rides! They have a HUGE water park!  They have things for everyone to enjoy.  It's pretty big.

Leah walked through that entire park, for about 6 hours, with very little rest. 

She rode crazy rides with her daddy and she LOVED them.

She rode in the lazy river FIVE times with me.

She waited in line patiently.

She was almost perfect.

She obviously had a blast!

We have season passes and I can't wait to go again!

Yesterday, we just spent the day at home.

Leah took a cat nap while cutting the grass with daddy.

She helped daddy feed the chickens.

She helped me hang laundry.

She didn't whine, cry, or make much of a fuss the entire day.

She didn't run to areas of the property which are off limits.

She communicated as best as she could.

She listened.

We had a great day!

Today, Leah had an elephant sized portion of breakfast and ate it pretty neatly. She didn't need many reminders to wipe her face.

She took a shower and DIDN'T FUSS WHEN I WASHED HER HAIR!!!

This is HUGE!

Then, she dressed herself as best as she could, and DIDN'T FUSS WHEN I DID HER HAIR!!!

This is also very HUGE!

She had a good day at school, came home, made a pb& banana sandwich (but wouldn't eat it), watched a few tv shows, and then took a little nap on the floor until her siblings came home. 

She actually kinda passed out. 

When she woke up, Sarah spent some great sissy time with her playing outside, coloring, playing Duck, Duck, Goose, and reading.

She had dinner and fell asleep a little later than her normal bedtime.

She didn't back talk, whine, cry, fuss, or misbehave at all today.

It was another GREAT day!

I think Leah needed some "big girl" time.

She needed to be given a little independence and trust.

Since Darien Lake on Monday, my little girl has grown up.

I think she is going to be going through a growth spurt pretty soon with all of her eating and sleeping lately.

I think she must be going through a behavior growth spurt as well.

And it is so nice to witness! 

Wednesday, May 28, 2014


Yesterday we had Leah's first CSE meeting.

It started and ended great… but in between was kinda testy.

Just so it's out there- when I am frustrated, or angry, or nervous, my face gets red, my voice gets shaky, and everyone around me can totally feel my emotions.

Especially when it comes to my kids.

I have gained a lot of control of this behavior in the past few years, but it still sits somewhere in my body, just waiting to come out!

And it was out yesterday.

The beginning of the meeting was full of smiles and jokes.

We went over Leah's evaluation results and there was not much surprising information in them.

The therapists were very warm and loving.  They also made sure to let me know that they see greatness in Leah and that they will work very hard to help her get her greatness out. Who can ask for more than that?

(BTW- Leah's social skills are totally age- appropriate or above average J)

We came to agreement on her placement: Integrated Classroom.  Her class will have about a 50/50 split of children with special needs and typical children.  There will be 1  regular education teacher, 1 special education teacher (for 130 minutes a day), and 1 teacher's aid in the classroom at all times.  Leah will have a personal aid to assist with safety concerns during transitions to specials and lunch.  Because of difficulty in scheduling, Leah will have this aid for the entire day, however we will be meeting as a team over the summer to discuss our expectations for the aid because we do NOT want him/her to be constantly at Leah's side.  Leah  does well with independence, and we want her to have the opportunity to be as independent as she can be.

We came to an agreement about the amount of (most) of her therapies.

Then came music therapy (MT).

A little more background- Leah does amazingly well with music therapy!  It has helped her develop confidence, strengthen her social skills, follow directions, share, take turns, increase her sentence abilities, and her articulation.

Every one of her current therapists comment about the growth in Leah's abilities when music is involved.

I have been strongly encouraged to advocate for MT even though our district currently does not contract with a music therapist.  The consensus is that MT is essential to helping Leah succeed.

After everything else was settled, I asked about music therapy.

CSE Chair- "We do not contract with a music therapist. It will take a long time to get a contract with one, but it can be done. However, Leah is already out of the classroom so much with her therapies, I don't think it would be good for her to add to her time away from the class.

Me- "You're right, she is out of the classroom a lot, but I wanted her MT to be pushed in."

Face getting red.

CSE Chair- "We will not have MT pushed in. If she has it, it will be pulled-out. We will not take away from curriculum time for MT. There is no way we will be able to have a music therapist in the classroom."

Blood pressure starting to rise.

Me- "That's not ok. You're telling me that you do not have 30 minutes a week to give in the classroom for MT? Music therapy would be for Leah specifically, but all of the children would benefit from it."

CSE Chair- "This service would be for your daughter, not for the classroom.  I cannot speak for the other children in the classroom. I don't know if the parent's would approve."

Voice starting to shake.

Me- "This is a blended classroom.  Do the parents not know that their children are in this type of classroom? I have had two other children in integrated classrooms in our previous district as typical peer models, and I was told that they would be in those classes before school started. I would assume that you also would notify the parents of the classroom status, shouldn't they be prepared for this type of service around their children?"

CSE Chair and Principal- "We will not take away from the time dedicated for the curriculum for music therapy."

Me- "If you don't have 30 minutes a week to take away from the curriculum then I think that the curriculum needs to be rethought."

Start the knee nudges from the hubby.

(Remember I was strongly encouraged to advocate for this service by many people, including the district psychologist and one of the district's speech therapist's)

CSE Chair- "There is no way to have push-in music therapy.  If you want it for Leah, then she will have to have it 1:1 pulled out."

Me- "Well, what else can we take away then. Not having MT is not an option and she is already pulled out a lot?"

Knee nudge.

We start to go over her plan and almost have 1 physical therapy pushed into her gym class, but it doesn't feel right.

Me- "I think this is a sticking point. Maybe I need to end the meeting, do my research on music therapy, and hire an advocate.  Music therapy is essential to Leah's development."

CSE Chair- "If that's what you feel you need to do…"

Me- "The reason I want Leah's MT to be pushed in is for her social skills.  Yes, those skills are her best, but she still has a hard time initiating play with her peers. MT helps her learn to share, communicate, and take turns.  Is this not an issue for all kindergartners?  How would this not help the entire class?"

Then the speech therapist (SLP) who would be working with Leah speaks up!

SLP- "What if I coteach with the MT during one of Leah's small groups? I think it would be great for all of those children, and I would be willing to do that… I would love to do that."

Blood pressure lowering, voice becoming steady, face color returning to normal.

Me- "I think that's a great idea!"

CSE Chair- "If you would be willing to coteach, then I think we can do that. I will have some work to do to find a therapist, but I will get on it."

And we're done.

Whoo hoo!!!

It's not exactly what I was looking for, but it is a start.

It was a very good compromise.

I am glad we stuck to it.

I'm glad I didn't give up.

I'm grateful for a team who was willing to find a way to satisfy everyone's concerns.

Sometimes it's best to keep fighting even when your unfavorable emotions come out, and even sometimes when your husband keeps nudging you to quit.

I felt the spirit with me when I explained why I wanted Leah to have MT in a group setting.  That same spirit must have touched everyone else in the room as well because there was an undeniable calm suddenly present.Only after I explained my reasons, was a compromise made.

Maybe those prayers are working.

Here's to a great kindergarten year for my sweetie. 

Friday, May 23, 2014

Inadequate Mama

For the first time in my life, I feel like an inadequate parent.

I have always known how to raise my children in a way which would help them reach their optimum potential.

I have always relied on my instincts and intuition to be a good mommy and they have served me well.

I have always felt proud of my performance in my calling as a mom.

Until now…

Leah has really slowed down her progressing.

She is doing well in school. Not great. But good enough.

She is starting to have a hard time in social situations.

Her reading is ok, but she isn't the rock star she used to be.

Shopping with her is horrible.

I would say her behavior is like a 3 1/2 year old's.

That's almost an 1 1/2 year delay.

I would say her speech is like a 2 1/2,  maybe 3, year old's.

That's atleast almost a 2 year delay!

And I don't know what to do.

I am overwhelmed.

I know I should be reading more.

I know we should be cutting more.

I know we should be socializing more with other kiddos her age.

But those things are hard most of the time sometimes with her.

I kinda don't know where to start.

Her delays are overwhelming.

I have been relying a lot on her therapists and teachers to help her.

I feel like I am failing in my calling with her.

I feel like I am not good enough to be her mama.

I feel like she deserves so much more than I am giving her.

And it breaks my heart.

And I don't know where to start to find my way with her.

I probably should be praying more.

That always helps.

But it seems like my prayers have been going unanswered lately.

Or maybe I'm not praying hard enough?

In a few days we have her first CSE (Committee on Special Education) meeting and there are going to be TEN other people there to talk about how to best serve Leah.

How am I going to help guide that meeting if I don't know how to best serve my own daughter?

Talk about stress…