Mama Grizzly

I think I've written about this before but...

When you have a child, you (usually) become a huge advocate for that child.  

The "Mama Bear" title is a very accurate.

When you have a child with special needs, you (almost always) become an even tougher advocate.

A mama goes from a cute little brown bear who could definitely inflict some damage protecting her cub, to a huge grizzly who could kill with one strike.

Hell hath no fury like a Mama fighting for her kid.

Satan himself has no power over a mother who is defending her child's rights and well-being, especially if that child has special needs.

I've had several people who have supported me in my recent advocacy for Leah.

I've had one friend who expressed hurt by my one of my blog posts.

Even my husband wished I worded things differently.

I understand both concerns and I am sad that I have caused pain.

I did pull that blog post for a few minutes.

But, I reposted it.

It is important to be vocal.  It is important to stand for what's right.  It is important to never silence yourself when critics criticize.  It is important to never give up.  

It may be necessary to hurt feelings and bring discomfort to get results.

I am not one to beat around the bush.

I am not one who tip-toe around a situation.

I am not one to carefully choose my words.

I say how I feel, when I feel it, to who I feel what I feel for.

People always know what I'm thinking about a situation.  

My love and my admiration are just as obvious as my unhappiness. 

I'm an equal opportunities feelings giver. :)

Sometimes I need to use more discretion.

Sometimes I need to take a step back.

Sometimes I need to be less aggressive.

But...

Not this time.

Unless you have a child with special needs, you probably don't understand. 

My life is engulfed with fighting for Leah. 

In almost every situation of her life, I am advocating for her. 

I try not to let her see it, but because advocating for her is such a big part of our lives, I can never completely protect her from it.

And when she does see my advocacy, she knows I am doing it for HER.

When I'm in tears because of the pain I'm feeling for fighting for her, she's the one I turn to to make things better.  

Just her presence makes me calm.

Just her love makes me strong.

Just her smile gives me courage to fight harder.

I try to give her the easiest, and most typical childhood I can.

But, she is so much wiser then I am.

She's the one who is making her childhood easier for me.

Even though she can't say it, I know she is proud of me.  

I know she is grateful for my efforts.

I know she knows how hard this is for me.

I know she wishes she could take the pain away.

I don't know how I know all of this, but I do.

Because of what I know, I will never give up.

I will always do everything I have to do to give her the best life I can.

The pain I feel, or the pain others feel because of my determination to give her the best life possible, is worth every pang. 

Her smile could move mountains.

Her happiness can calm the most nervous soul.

Her spirit is closer to God then any other person I know.

I feel as though we are one; like our spirits are strangely entwined.

I can sense her needs, wants, joy, sadness, and pretty much anything she's feeling as she's feeling it.

It's kinda weird, actually.

I feel the same sorta thing with my other kids, but for some reason my instincts with Leah are different.  

I don't know how to explain the difference other then Leah's different.

Maybe it's because she can't express her feelings in words like my other children can.

Maybe my spirit needs to feel hers stronger so I can understand her better.

I dunno.

But that extra feeling also comes with an extra reason to fight.

Uncomfortable and hurt feelings and all.

Changing the Future

Today was Leah's last day at preschool.

She has been going to a typical preschool this school year, with many of her services (speech therapist, teacher, music therapist) pushed-into her class.

The preschool is at our local vocational school.  There were about 12 high school senior girls who participated in this program. 

It is modeled after a 12:1:1 program, however there are always at least 3 student teachers in the room at any given time.

Sometimes the student teachers would be a little over-bearing with Leah.  

Sometimes they would try to do too much for her.

Sometimes she needed it. 

Sometimes she didn't.

Each of them worked with Leah.

Most of them learned to push Leah further then they thought they could.

They all learned to accept Leah without her diagnosis at the forefront of their mind. 

All of them loved her.

I sent her to this program specifically because I wanted her in an environment where her typically developing peers were, and most of the children in this program are from our local school district.

My thought process in this decision was, if I want her to be mainstreamed, I should start her in a mainstream classroom from the beginning.

Leah was the first child who has Down syndrome to ever be in this program.


We have had to make several adjustments in her services in order to give her the best possible experience and to make it the least restrictive environment for her.

But...

This program is incredible!

They were always willing to accommodate for Leah.

Their philosophy is "Learn Through Play."

It is a perfect philosophy for us. :)

So...

At the end of the day today, the student teachers shared their goals next; where they were going to school; what they were majoring in; who they were hoping to become after high school.

Of the twelve student teachers, FIVE of them are planning on pursuing careers in special education!

I thought that was pretty cool and I told the lead teacher what a great thing it was that those girls were planning those careers.

The lead teacher said:

"Mrs. Sones, there was no student who was planning on majoring in special education at the beginning of the year.  They all wanted to be teachers, but not ONE was planning on special ed.  It is because of their experiences with Leah that they are choosing these paths.  Working with your daughter has inspired them to become more then they thought they could.  We have been very lucky to have her with us."

Bring on the tears.

Bring on the pride.

Bring on the joy.

Bring on the hope.

Leah has impacted so many lives in her short three years on this earth.  And, today we were given five examples of it.

And, not only has she impacted those five student's lives, but think of all of the children who those student's will teach! 

Incredible.

I know things change and these girls are young.

They very well could decide a career in special education is not the path for them.

But today, MY kid inspired them.  

What more could I ask for?

(These are the future special education teachers:))

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(This is Mrs. Burdick, the lead teacher. :))

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Our Sign

Disclaimer: You may be offended by this post.  It probably has nothing to do with you, though.  I will not apologize for what I write.  I write this blog for therapy.  I write this blog to give a voice to those who will not or can not speak for themselves.  I write usually when there's some major stress going on with being a parent of a child with special needs.  It is MY blog.  My blog is not always warm and fuzzy.  It is what it is.  Everything I write is honest and true.  I am not making up stories or adding information which is false.  I will not publicly insult a person by name, I will however use titles and situations.  I am not ashamed of anything I write.  If it offends you then there's probably something going on within you to make it offensive.  We are also not leaving the church.  This has NOTHING to do with our activity or our feelings about the Church of Jesus Christ of Latter-day Saints.  We know it is a perfect church.  We know the people are imperfect, because we are members and we are quite far from perfect.  We are not going to the Lockport Ward because of this situation ONLY. So stop judging us and just read, or don't.  This is not about me or you, it is about my daughter being DISCRIMINATED against! 

Welp...

Here we are still.

Still no answers.

Still no suggestions.

Still no communication from our church leaders.

Still nothing.

Our church teaches that we need to endure to the end.

I think that means that we have to keep trying, no matter what,  until the day we meet our maker. I  think it is very important to never give up; to always persevere.

But what do you do when you've been shut out?

What do you do when you hear wonderful and spirit-filled promises, but in the end you're still forgotten?

What do you do when it seems as though the leaders of your church somehow find ways to blame you for their mistakes?

OUR DAUGHTER WAS DISCRIMINATED AGAINST!

At church.

What. The. Heck!?!?

It's been another month.

That means it's been FIVE months since the incident.

Good grief!

We have been trying to be more active in "our new ward," but it is difficult to throw yourself into something, or somewhere, which you are not sure if you belong.

Leah actually spent the entire 2 hour block in Primary, 2 weeks ago.  I was so scared to send her, but I am so glad we did!

She didn't need an assistant.

She was welcomed just as she is. 

I could feel the leader's gentleness and love for her.

Leah was just perfect. 

It's such a shame that a ward who has barely met my kiddo treats her so much better then the ward where she was born and has grown up. 

I needed to feel their love for Leah. 

Heavenly Father knew I needed to feel that love.

We even went to Stake Conference (a conference set up by our church for all of the area wards. It is like having all of the parishes within a 100 mile radius or so, gather together and have mass).

We NEVER go to Stake Conference.

But we did last week.

We're trying.  

Our leaders are not.

I've even heard that it is being said that we are unwilling to compromise. 

Seriously?!?!

I just think they don't want to deal with us.

We've had a bunch of lip-service and absolutely NO actions.

OUR DAUGHTER WAS DISCRIMINATED AGAINST!

At their church.

They have control over that. 

It is THEIR responsibility to fix it.

We've even mentioned (a month ago) that we would be willing to consider any decision the leaders made, as long as it would address the situation.

We said we would pray about the decision and if it was right, we would do what was suggested.

The decision:

"We'd like to invite you back to the ward."

That's it.

Nothing else.

So, the decision was:

"Suck it up and come back.  We don't want to deal with the discrimination and you are the ones who need to bend and change for us.  It's too much to ask for anything more then an invitation."

Just for the record, we were willing to have meetings, trainings, and conversations with the person who hurt Leah/us so badly.

We were willing to listen and teach.

We were willing to forgive.

But no one suggested that.

No one thought anything more then an invitation was justified.

The blame is being placed totally on us because...

OUR DAUGHTER WAS DISCRIMINATED AGAINST!

I need to move on.

But, I am not one to give up... remember, I really do believe in enduring to the end and persevering.

I don't take "No" for an answer when it's something I believe in.

In our church we have these things called Patriarchal Blessings.

A Patriarchal Blessing is like a blueprint for your life. 

You can read more about it here.

My blessing says,

"May you always stand for what is right.  May you be involved in government and in organizations that have good intentions, so that you will make a difference to many and by doing so, you will specifically make a difference in your children's lives...You will be exhilarated as you utilize your talents on behalf of those children that Father in Heaven will share with you.  Not just those children that have been born to you, but those children who are within the Church of Jesus Christ."

I interpret that to mean that I shouldn't go away easily.  

That I need to stand up for what's right, especially when children are involved.

This is exactly the situation I suppose my blessing is talking about.

But I am becoming blue in the face!

OUR DAUGHTER WAS DISCRIMINATED AGAINST!

And nothing has been done about it!

Ridiculous. 

I think the Lockport ward should put a sign above it's door that says,  

"All are welcome (unless you [or your child/children] have a disability, or are unwilling to do what you're told to do even when you know it's wrong, or will question us, or will disagree with us, or will ask us to move outside our comfort zones, or are anything besides the cookie-cutter Mormon and if you are anything like was just mentioned our leaders will hurt you and ignore you and forget about you until you just give up and then they will place all the blame on you for giving up)."

That's a sign which would be fitting for the way we've been treated.

No wonder so many people have left.

Spent

There are a few things I feel I need to express about my previous post...

It was written with raw emotion.  Please forgive me for not proofreading the post before I submitted it.  By the time I reread it, there was so much traffic on the blog that I didn't feel like I should edit it or take it down.  So it sits where it is, bad grammar and all.  ;)

I wrote it because I needed someone to understand.

Someone who didn't make excuses for the way we were treated.

Someone who empathized.

Someone who could help.

I have had a few friends who have tried really hard to help me through this.  They have given the best advice they could.  They have been great friends.

But, they didn't "get it" because they don't have a child with special needs.

Or, they didn't "get it" because they have children with special needs, but they are not members of my church.

Or, they didn't "get it" because they do have children with special needs, and are members of my church, but they have never experienced anything like this before.

Steven and I have really been so alone and lost.

For four months.

We have had tons of support since I posted about our trials and we are extremely grateful.

Our Bishop has reached out to us in a perfect and Christ-like way since I posted.  We take great comfort in this.

It has been four months of hurt though, so it will take some time to heal.

For now, we really don't know where to go or what to do.

We are still lost.

We just want to go to church.

The Church of Jesus Christ of Latter-Day Saints is a perfect church.

The spirit is undeniable.

We have witnessed lots of miracles in our church, many of which included Leah.

When Leah was born, shortly after her diagnosis was given, Steven and another man from our church gave her a blessing. They laid their hands on her head, pronounced a blessing upon her in the name of Christ and by the power of the Priesthood which they held, and blessed her. I don't know what that blessing said.  I wasn't there when they gave it.  What I do know is that before the blessing was given, the NICU was full of unhappy babies.  Most of the infants were crying and the nurses were stressed.  When the blessing was pronounced, the babies stopped crying.  Instantly, the NICU was quiet and it remained that way for the duration of the blessing.  When it was over, the babies went back to their tears, it became loud again, and the nurses were back in the weeds.  The nurses used to love to talk about this with me.  When the NICU was especially rowdey, they would ask if Steven could come back and do it again.  It was a miracle.  A small and simple miracle, yet a miracle all it's own.

I can not deny my church.  It is a church of love.  A church of miracles.  A church of Christ. 

It is a perfect church.

It is also a church of imperfect people (including and especially, the Sones').

But the pain we've experienced because of imperfect people is also undeniable.

There is no pain comparable to the pain a parent endures when their child(ren) are hurt. 

Leah was not "hurt" per say, but just because she doesn't know she was being discriminated towards, does that make it ok?

It is my job to defend and protect her.  Steven and I were given the callings of being her earthly advocates.  We are to fight for her as hard and as long as we have to, with anyone and anywhere we have to.  We were called to protect and nurture her.

We advocate for her today, on this earth, with the hopes that she will advocate for us in eternity, when we have all left this earth and we meet our Heavenly Father.

My church teaches that children who have special needs, especially cognitive delays, are perfect.  They are so perfect that they don't even need to be baptized (although they can if they want to).  They are literal celestial beings on this earth.  There is nothing closer to perfection then a child who has Down syndrome.

This is my church.

We could visit another ward (and have been), which would teach the same things as the ward we belong to now does.  But we love our ward.  We love the people in our ward.  We love the friendships and the memories of our ward.  We don't want to leave because of a few imperfect people who make really bad choices.

We're also spent.

I've cried more tears in the past four months, then I've cried in years.

Our testimonies have been beat up but we've been fighting as hard as we can to hold onto them.

It takes so much energy to not let yourself fade away.

It takes so much energy to try to force people to hear you.

It takes so much energy to try to understand how people could forget you.

It takes so much energy to not be angry.

It takes so much energy just to hold on.

It takes so much energy to forgive.

It takes so much energy to fight against satan.

And our energy is gone.  We are spent.  We give.

We have to find a way to get past this so we can rebuild.  But we don't have the energy.

And, just going back fixes nothing.  We can't and we won't do that.  We will not put our daughter in a situation to be discriminated against, we don't care where it is.  Something has to be done to fix what was done.  Ignoring it will just allow it to happen again.  And, how can we leave things the way they are?  What if another child moves into our ward and it happens again? 

But, we don't have any answers.  We can not think of any way to fix it.

Like I said, we are spent.

We have to leave it in the hands of the leaders who have the authority to fix it and we have faith that they will.

Until they do, we will be lost. 

We will be in a ward where we don't belong.

We will miss our friends.

We will still be using all of that wasted energy to hold onto the frailness of our testimonies.

I fear that we will not grow. 

We will do our best...

But leaving things left unsettled will not help us strengthen ourselves again.

I think our leaders just don't know what to do.

And, neither do we.