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…

Just a Mom

It's been a while.

Leah's been great! We still have our struggles, but I couldn't be more proud of my sweetie. 

We've been working on improving her speech and it is kicking our butts!  My peanut tries so hard to tell us what she is thinking.  She has pretty big verbal and sign language vocabularies, but she can't get all of that vocabulary out, and when she does, it is often hard to understand unless I make her slow down and pronounce the words individually. We are still working on increasing her sentence abilities.  Right now, I would say she is consistently using 3-4 word sentences. That's pretty far behind and she works SO hard for those 3-4 words.  If I give her prompts she can say more, but to get a 5 word sentence from her spontaneously, is HUGE!

Leah can read about 50 words.  I'm slacking with her reading.  I really haven't worked on it much in the past 3-4 months.  I really need to get on that.

She is loving dancing!  We switched her to a younger, less structured class and it's just what she needed.  In this class, she has begun to shine!  She can follow the routine, attend to the teachers, and do most of the moves.  Skipping is still a challenge, but jumping, hopping, leaping, running, and shuffling are easy peasy. 

Leah's skills are definitely scattered, but she is such a hard-worker.  She doesn't give up when things are tough- she may yell a little- but she doesn't give up.

I felt the desire to journal today because I had an experience with my twinies, which reminded me why I began journaling to begin with…

…I wanted to share my experience of being Leah's mom.  I wanted to express the good and the bad of being a mama of a kiddo with Down syndrome.  I wanted to be raw with emotion and help the world understand a little better.

I wanted to show that I'm just a mom.

I wanted to show that Leah's just a kid.

I wanted acceptance and love.

I wanted support.

I wanted to share my experiences, so that maybe other parents could learn from them.

So today…

I met with Hannah, Elijah, and their guidance counselor to discuss their schedules for high school. 

Hannah and Elijah will be working on their Associate's in Engineering, while attending high school.  They will have to finish up a couple of classes the summer that they graduate, but by the fall semester they will be juniors  at whatever university they choose to attend. 

I say whatever school they choose to attend pretty confidently.  They will be engineers at 17.  I'm kinda sure that will help them a little… 

If Elijah chooses to serve a mission, he will come home from his mission and be a junior.  It will be like he never left, educationally.

I'm just a little proud. 

But the thing that prompted me to write today is that I am just as proud of Leah and how hard she works to get those 3-4 sentences, as I am of my twins who have exceeded any expectation I have ever had of them.

Those sentences are just as impressive as those degrees.

The twins have the choice of degrees they can pursue.  they can work towards  either and Associate's in Engineering, or an Associate's in Math and Science.

I expressed my concern that the kids get pigeon-holed into one field at such young ages.  Don't get me wrong, I know a degree in anything will only help them in the future, it's just that I don't want them to put in all of this hard work just to start over after they graduate.  For example, if either one of them wanted to be a teacher or a psychologist, how far would an engineering degree get them?  I want their doors to be wide open so they can choose which one will make them happy, not just a path that was laid out in front of them.

I feel the same way about Leah.  I don't want her pigeon-holed into one place because she has delays, any more than I want my twins stuck in one path because they are intelligent.

I want them all to reach their optimum potential and find true happiness in whatever direction they choose to go.

Hannah and Elijah are very blessed with the opportunity they have right now.   This is the first class to ever have this program available to them.

Leah is also very blessed with the opportunities she has right now.  Her generation is one of the first to have so much support offered to them. She is living at a time when her potential is celebrated.

I guess my point is that no matter where your children's abilities are, you love them unconditionally.

Success doesn't make you love them more.

Struggles don't make you love them less.

Your child is yours.  You love them, you fight for them, you care for them, you nurture them, you encourage them, you are impressed by them, you hurt for them, you are proud of them, you celebrate them.

You are their parent.

No diagnosis can ever change that.