The Bus

A few weeks ago, a little girl cheered when she heard that Leah wasn’t going to be on the bus that morning.

My big kiddos became VERY protective of their little sister.

I received a text telling me about the situation, that one of them talked to the little girls, and they were all acting like “mama bears”.

They told the girls how sad they were to hear them cheer.

Asked them how they would feel if someone cheered when they weren’t on the bus.

Told them that they shouldn’t do that again.

I wrote this on my Facebook page:

“To the kids who cheered when they heard that Leah wasn't going to be on the bus this morning: just so you know, if you were my kids and you did this, you wouldn't be able to sit on the bus (or anywhere else) for at least a week. I hope Leah's siblings were firm with you and taught you how absolutely horrible your behavior was, since your parents obviously haven't been able to teach you this yet. And remember, karma's a bitch.”

Way Harsh.

Sigh.

Then a little girl came home crying because she was so worried that one of my kiddos hated her.

Her mama messaged me and told me how upset the little girl was and that her daughter promised she didn’t cheer.

My mama bear mind wasn’t hearing any of it.

My kids were positive it was those girls.

I believed them.

I was irrational mad.

I said more harsh things to this mama.

Sigh.

The next day, I called the bus garage and principal and asked them to look into the situation assuming of course that my children would be validated and the evidence would prove that my child was the victim of hateful discrimination from little, spoiled, mean girls.

Not even close.

A little girl did cheer.

Not the one my kiddos were positive about though.

Not the one whose mama said promised she didn’t cheer.

Not the one who my kids talked to.

A little girl did cheer because she was happy that Leah wasn’t on the bus because Leah sometimes takes her crayons and coloring books.

Not because she was a little, spoiled, mean girl.

Sigh.

If you know me, you know that I LOVE children.

My entire life has been focused on helping children.

I advocate for ALL children whenever the need arises.

From the time I remember thinking about what I wanted to do as an adult, I wanted to be a mama.

My connection with children is intense…

My heart broke that day.

A little girl was crying because of my child.

When a mama called me advocating for her baby, (something I ALWAYS encourage parents to do) I shut her down.

I thought and said hateful things about CHILDREN.

Sigh.

I am reliving this now because I need to explain.

I need closure.

I need to let anyone who read what I wrote or heard what I said know that you did not read or hear the real me.

I AM a mama bear.

I am not ashamed of that in any way.

Honestly, I have NEVER regretted advocating for any of my kiddos, ever.

Until this.

I can’t believe that I was so quick to jump to the worst conclusion about the situation.

I should’ve known better.

Everywhere Leah goes, everyone LOVES her.

They protect her.

They nurture her.

They play with her.

They include her.

They don’t worry about any “differences” she may have.

We have had some pretty devastating experiences with discrimination so maybe I am still very protective of her to make sure that we don’t ever go through THAT again?

I don’t know what my issue was that day.

But I am sorry.

This has been a huge learning experience for us all.

And Leah better never take someone's coloring books or crayons again, or else. ;)

(I have apologized to this mama and my kids have apologized to hers.  They have all very kindly forgiven us. :)) 

World Leah Day

Today is World Down syndrome Day.

It is a day that the world advocates for, educates about, and celebrates Down syndrome.

Today is chosen because the date, 3/21, is used to represent the three copies of the 21^st chromosome which is the genetic abnormality that causes Down syndrome.

Most of my friends who are parents of kiddos with Down syndrome are doing something to celebrate their children today.

Assemblies to discuss Down syndrome in their schools.

Wearing crazy socks.

Letters sent home to classmates to explain their kids a little better.

Goodies purchased or made with the Down syndrome colors of blue and gold, and are being passed out all around the world.

It really is a big day except around here.

I have a hard time with today.  I never know what to do.

My world is engulfed with all things Down syndrome but I do everything I can to protect my baby's world from Down syndrome.

I don’t ever think about Down syndrome, except I never stop thinking about Down syndrome.

My perspective differs greatly than what the text books teach.

My view does not include three copies of the 21^st chromosome.

Or a learning disability.

Or a speech delay.

Or small ears.

Or small feet and hands.

Or cute little curved pinkies.

When I look at Leah, I see my beautiful baby who seems to bring a little piece of heaven to everyone she meets.  I see strength.  I see determination.  I see happiness.  I see stubbornness (she gets that from her daddy).  I see intelligence. 

I see a child who will grow to impact the world in ways I never can.

I never see Down syndrome.

But then again, do I?

Does Down syndrome really mean beauty? Or heaven? Or strength? Or determination? Or happiness?

Stubbornness has to be a Sones thing.

These generally aren’t the focus of all things Down syndrome though.  When we educate and advocate, the focus tends to be on the text book stuff.  

But those things have very little to do with my sweetie.

I don’t want to celebrate the scientific, biological, or academic differences my beauty may possess.

I want to celebrate her countenance and the way it impacts the world, which I do believe may be connected to having three copies of the 21^st chromosome but those scientific studies haven’t really happened yet…

How do I make the world see THAT?

When I can figure it out, I will be ALL IN for World Down syndrome Day.

Till then, we’ll celebrate World Leah Day!

But if you know this house, every day is World Leah Day… Trust me. ;)

IQ

I had a few friends mention that they liked reading my blog about my peanut, so I figured that I would pick it back up again.  Who knows how often I will write in it.  I've made lots of goals in the past and I am tired of not reaching them, so I guess here's one little look into our lives. 

A few weeks ago, I got a copy of Leah's IQ results in the mail. 

I was devastated. 

My baby is way smarter than the results suggest.

Part of the test requires two surveys, one from a parent and one from a teacher. 

Our surveys results were very different. 

In the report, the psychologist who administered the test mentioned the discrepancies in the surveys, and she said that the differences were due to "reporter error." 

I called her.

I wanted to make sure that I had an accurate view of Leah's abilities and I was curious as to who she felt was the one who made the errors. 

She told me that she believed I was the one who had a better understanding of Leah's abilities and that my survey was the more accurate one. 

She did not think that Leah could function as well as she did, in the classroom that she was in, if she was at the level that the teacher survey suggested. 

...In the middle of the testing I happened to be volunteering at recess and when I asked the psychologist how things were going, she said that she didn't believe the results would be an accurate assessment of Leah's understanding. She commented that the test had to be administered in a specific way and that she couldn't take liberties with the questioning. 

I told her that I would put Leah's IQ score in the 70's if I had to guess.  

She agreed. 

That's not-too-shabby, if I do say so myself. ;) 

Yay Leah!!! :)...

We then talked about more personal stuff. 

(This psychologist is one amazing lady. I am so grateful for the compassion, love, and knowledge she has brought into our lives. I honestly consider her a friend) 

At the end of our conversation she said:

"I truly believe that Leah was brought into my life when I needed her the most. She is a blessing to me and I am very grateful for the opportunities I have had to work with her." 

My baby's IQ score may not be as high as I would like it to be. I wish she would have been able to "perform to the test" just this once. 

But really...

Did you just read what the psychologist said? 

That's kinda amazing. 

For real. 

My baby is considered as a blessing in someone's life.  

This someone was a stranger a year ago. 

My sweetie touched her life in a deep way. 

That's kinda amazing.

What's even more amazing is that I have had many people share similar  sentiments. 

Is an IQ score really that important?

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! 

Compromises

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. 

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…

Finding the Right Path

Leah has her CSE meeting this week.

We will be setting up her plan for school next year.

These meetings usually bring parents lots of stress.  Most of the time the stress is relieved shortly after the meeting is over; when the committee who is working on the plan comes to agreement about what they feel is the best education plan and goals for the child.

Usually most of the stress is unwarranted. 

Sometimes it's not.

Luckily, we live in a district where those meetings are as comfortable as could be.

There's always a little sadness when talking about your child's special needs, but our district tries to give us hope.  They work to better the children.  Test scores are just part of the plan.  Our district is more focused on helping to develop positive and productive members of society, who reach for the stars and find their true potential, than passing tests.

They do this for all of the children, in every grade, whether or not they have special needs.

We are blessed.

So Leah's meeting…

I am having a hard time trying to figure out the best path for her.

Leah's skills are very scattered and if she has a particularly tough day it is hard to get her to focus without a lot of intervention and prompting.

When she has a good day though, she is on!  She doesn't need much help, she can follow along with her routine, and she even initiates communication!  Good days are very good!

Tough days are very tough.

I have noticed when Leah has less assistance at home, her dance class, and church classes, she usually does pretty well.  She does need strict discipline, but once those lines are drawn between adult and child, she gets it.

For example…

The dance teacher's assistant was out of town for a week.

Leah didn't have anyone to rely on to help her or redirect her.  She had to listen to her teacher and she was expected to behave.

It was her best week at dance!

And…

At church her class is small and she is often at her teacher's side.  When she goes to group activities she is also usually sitting right next to a teacher.

A few weeks ago I explained to her teacher that we are tough on Leah and when she is naughty, she gets into trouble.  I told her that we expect her to behave and mind her manners.  

The next week her teacher was a little "tougher".

It was one of her best weeks at church!

Finally…

When the bathroom door is open, Leah is completely self-sufficient going potty (although she sometimes finds herself trying Mama's make-up out).

When the bathroom door is closed, she often needs help.

It's like she can't do it on her own, even though we all know she can, when that door is closed.

I just realized this was the connection yesterday and we will now always have the door open. J

Her fine and gross motor skills are her worst skills, they always have been.  I am wondering if she just gets discouraged by not being able to turn the door knob to the bathroom, so she shuts down and won't do much by herself.

But when she has the ability to be independent, she usually is.

I saw a sample of an IEP in which the child had her therapies pushed in, or in small groups, at particular times of the day.

This girl's IEP had her PT at gym or lunch.  Her OT was there to help with her seat work exercises.  Her speech therapist was with her during circle time, or other group activities.

This allowed for the child to be fully included into a regular ed. classroom.

Leah will be in a blended classroom  and 1/2 of the children will have special needs and the other 1/2 won't.

There will be a regular ed. teacher, a special ed. teacher, and an aid in the class.

I kinda think that's enough help.

I'm not really feeling the need for a 1:1 aid.

But on those tough days…

I'm afraid she will be too disruptive to the class.

I don't want her to shut down when things get tough, and not have anyone there to wake her back up.

I want to give her space but I don't want to frustrate her.

I was thinking about giving her the first 10 weeks to adjust.

I know the first 4-5 weeks will be hard.  But maybe on the 6th or 7th week she'll come around?

Maybe if she's given time to learn the routine and adjust to all of the new changes she will excel?

Maybe if she sees other kids trying to figure it out too because of the newness of kindergarten for all of the students, she will learn with them?

But then there's those really tough days…

It's always so hard to know what will be the best plan for your child, especially when they have such a huge gap in skills.

Leah's academic skills are great!

But the rest…