Splashing in Love

She splashes in the water and giggles with delight. The day is hot and she loves to swim in the little pool. She turns around in circles and gets her face in the water. As she comes out, face drenched, water pouring out of her mouth, and wet wisps of hair sticking to her cheeks I think to myself, “What joy she has, how much her life has changed.” Because two years ago she was wasting away in an orphanage in Eastern Europe, waiting for the day where she would be transferred to a mental institution. The place where she would be today – rather than splashing in the pool – because of her disability.

I am guest blogging at Our Family for His Glory today. To keep reading CLICK HERE.

And leave me a comment if you get a chance. 

Messages from Moms (Part 2)

Today I share about how the church responded to Nichole's birth and diagnosis of Down syndrome at Diving for Pearls. CLICK HERE to read the second part of my guest post.

If you missed the first part, you can CLICK HERE.

(If you are up for it, leave a comment in Katie's site)

And just for the fun of it, here is a recent family photo.

Smart and Beautiful

My mother always told me it was better to be smart than to be beautiful. “If you are smart, eventually you will be able to afford to be beautiful,” she said. A successful career could result in enough money to buy the right clothes, get the perfect haircut and any plastic surgery I want. According to this wisdom, all I needed were the brains, and someday, I would be a dashingly beautiful lawyer.

I was an only child until I was six years old. My mother and I walked the streets of Mexico City visiting every museum and historical place. She worked at a TV station and I would come along and watch the magic of filming TV shows, along with the horror of Big Bird taking his head off to reveal a sweaty, ugly, scrubby man. But all the same, I was learning.

I was reading classics at an early age: Jane Eyre, Little Women, and my favorite, Mark Twain. Bilingual at an early age, my mother began to feed me those classics in English as well, although Mark Twain was never a book I willingly picked up to read in English.

***

My article, Smart and Beautiful was published today at the Memoir Project, CLICK HERE to keep reading and leave me a message!

And mom, thanks for being strong for me. You are my hero.

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Opportunities Lost

I am linking up with Gypsy Mama for 5 Minute Friday, where you write for 5 minutes, no editing, no over-thinking, you just write! What you get is what you get!

Theme: Opportunity

 

I wonder how often opportunities come my way and I simply let them pass by because I am too busy, or too stressed, or too concerned with me.

Opportunities to reach out to someone that is need. Sometimes a smile is all I need to offer, or a listening ear, or companionship, just being there. 

Opportunities to make memories with my children. Like getting down on the floor to play, getting them dancing, or telling them stories (instead I am too busy, especially if there is a computer around).

Opportunities to connect with my husband. Taking time to really ask him questions, to listen to what is going on in his heart. Instead, I can treat him like a roommate.

Opportunities to do the things I enjoy. Like going o a Zumba class, or go out for a bike ride, or really make time to write.

Opportunities to be a light to a world that is dark and where pain and hurt are common. I can wallow in my own struggles and not look past me.

What about you, do you miss any opportunities?

 

Messages from Moms

I am doing a 2 part guest blog over at Diving for Pearls. I met Katie through my friend Jolene Philo who directed me to Katie's incredible ministry helping churches reach out to children with special needs. If you are not familiar with Key Ministry: a church for every child, I suggest you check them out. The Children's Ministry Consultant from our church denomination recently attended one of their trainings and she said the time was incredible valuable and she feel better equipped as a  ministry consultant.

Here is a snippet:

Three little bright-eyed girls hold my mother’s heart. They are gifts, treasured and precious lives entrusted to me. They love their bows and dresses, pinks and purples, dolls and castles. They play together, giggle, and hug. Yet, each of them is unique. If you were to come to my house, you would discover just how different they are from each other. Somehow, they fit together so well; they are perfect for each other; they are sisters.

Ellie is my almost-seven year old. She is my drama queen and creativeness pours out of her easily. She is advanced for her age at school, and next year she will most likely be joining that talented and gifted program.  Then there is Nina, my other six year old. She joined our family through international adoption before she turned 4 years old. At the time, her development was that of an infant, but with the love and support of a family she is now an average Kindergartner and we are astonished at how much she has accomplished in life. Due to her background, Nina struggles with some mental health issues, some we hope she will overcome as she continues to grow, and some that will be a part of her life. Nina also has Cerebral Palsy and she faces the challenges that come from her disability. And there is my rascal, Nichole. She is four years old and she has Down syndrome. She is the reason we chose to adopt Nina. She changed our hearts forever, teaching us about what really matters in life and re-establishing our priorities. 

To keep reading, click here.

If you missed it, I also wrote an article for SpecialNeeds.com and you can read that article HERE.

I Need Her

It is 2:00 am when the cell phone vibrates under my pillow reminding me to get up. In a swift motion I swing my legs around and glide out of bed, barely moving the covers. My husband sleeps soundly and so does my one-week-old baby, Nichole, who sleeps propped up in her car seat in our room. I pause at the door and stare at her small shadow. Slowly I turn and exit the room, closing the bedroom door behind me. It is time.

Across the hall from my room, I lock myself in the bathroom. I sit on the cold tile floor and pull the blue Medela breast pump from under the sink. The bottles, cups, and tubes are ready, waiting for me. I am full of milk and ready to relieve some of the pressure.

I plug myself to the milking machine, the rhythmic swishing begins, and within seconds, the floodgates are open. A steady stream that never fails every time I am attached to the pump. 

Why? Why?

Why!!!

Why does it have to be my baby? Why do I have to be the mother of a child with Down syndrome? Why!

It never fails. Every time the pump is to my breast I cry and grieve over Nichole's diagnosis. During the day, I have enough distractions to keep me from giving in and losing myself in despair. But at night, at night I can cry as much as I want. Everyone is sleeping. Nobody knows.

***

My article I Need Her was published today at SpecialNeeds.com. CLICK HERE to continue reading.

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Regrets of the Dying and What We Can Learn from People With Disabilities

At the end of our lives, we will all look back and evaluate our lives, what will we regret?  I recently read an on-line article titled “Top5 regrets of the dying.”

Australian nurse, Bronnie Ware, spent several years caring for patients on their last 12 weeks of life. During those last days, patients shared with her the regrets they had. Bronnie began to document her patients epiphanies in a blog called Inspiration and Chai. Her blog quickly became popular leading to her book titled “Top 5 Regrets of theDying.”

Here are Ware’s findings:

1.  I wish I'd had the courage to live a life true to myself, not the life others expected of me.
2.  I wish I hadn't worked so hard.
3.  I wish I'd had the courage to express my feelings.
4.  I wish I had stayed in touch with my friends.
5.  I wish that I had let myself be happier.

I find it interesting that we do not see, “I wish I would have made more money,” “I wish I would have been smarter,” “I wish I would have had a better job,” “I wish I would have lived alone and independently most of my life.”

The truth is, that when we look at individuals with special needs we assume they have less to contribute to society, or that the quality of their life is inferior if their IQ is lower and they work bagging groceries at a store.  However, it appears that at the end of life, those things really do not matter. If we look at every regret, we can see how we could learn to live, and to live fully, from watching people with disabilities do life.

1. People with disabilities live life to their true self. Have you ever been around people with Down syndrome? Did you feel a tangible type of joy?  Did you recognize that they are true to themselves and their hearts have room to accept all people?
2. Have you seen the man with an intellectual disability working at the local grocery store? Yes, he works hard, but do you notice the smile he offers as he places your bags back in the grocery cart? He does not live life for work, but rather works for the enjoyment of doing something for someone else and to make a little bit of money so he can pay his bills. Because he knows that life is about more than work.
3. Have you seen the adult daughter who gently places her head on her dad’s shoulder and whispers, “I live you dad.” And the love you see makes you wish you could have what they have?
4. Have you walked into a group home for adults with disabilities and marveled at the fun and the close friendships that they share? Did you wish you could participate in their spontaneous dance parties, or playing UNO, or seeing them share the frustrations of their own disabilities while their friends embrace them and offer unconditional love?
5. You won’t see only happiness when you are surrounded by people with disabilities, often times, you will see joy.

I have teachers in my own home, 2 little girls who teach me and show me what life is all about. Every day, every single day I see my daughter with Down syndrome enjoy life to the fullest, or my daughter with Cerebral Palsy who continues to improve her steps and announces she is going to practice and some day, she will be able to jump.

The joys and the fullness of life we live with thanks to them is a gift. People talk about children like my own as if they were a burden, but what burden is there when they show us what life is  really all about? When we can learn about love, joy, peace and kindness from them.

People with intellectual disabilities have much to offer to society. I am convinced that if we all looked at them as human beings, as contributing members of society, if we took to heart the way they show us to live, the regrets on our last days would be vastly different.

Sources: 

Guardian.co.uk 

Bronnie Ware official site

Inspiration and Chai

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Copycat

On Friday, we had some friends from St. Louis stop by and spend the night with us. We met because of our girls and their diagnosis of Down syndrome. The extra chromosome has brought along beautiful friendships!

Nichole loves her sister Ellie, whatever Ellie does, so does Nichole. She likes her sister, she plays with her sister. At school though, she does not really play with many of the other kids, but when Nichole saw Braska, she decided Braska was so cool she would copy her too. Nichole was a hoot. Everything Braska did, Nichole would do too. Braska's speech is incredible, I don't really know any other kid with Down syndrome that talks as well as Braska. The sweet thing is that Nichole was repeating every word Braska said, maybe not clearly, but she was trying hard! Did Nichole recognize that Braska has Down syndrome too? I don't know.

Here is a little video of Braska being a cheerleader and Nichole is being a copycat. Pay close attention to Braska's facial expressions and mannerisms, because you will see Nichole doing whatever Braska does. Besides you also get to see 2 adorable little girls!

Drops of Perspective

I am linking up with Gypsy mama for 5 Minute Friday, where you write for 5 minutes, no editing, no over-thinking, you just write! What you get is what you get!

Theme: Perspective

 

Go

I swim in a stream. A strong current pushes me but I pump my arms and kick my legs. Up-stream is where I think my dreams are found; where long time hopes wait for me. I keep swimming.

I get so busy trying to get up-stream that I don’t enjoy the coolness of the water, or the thrill of the ride – letting the current take me to a new place – this stream that is my “mothering” life. 

Often times I lose perspective of what I am doing at home. I reach for dreams that take time away from my little girls. Instead I pursue a writing career or get lost behind a good book. Because for some reason I really struggle to find meaning in the piles of laundry and the housework that needs to be done, or I get bored. 

But this stream carries precious drops of time and I simply do not want to miss them.

Too soon my children will grow. Someday, I will be able to purse those dreams knowing that I am not compromising time with my girls. Someday I will have so much time in my hands that I will be wishing for the days when my kids were little, when the little things I do matter and create lasting loving memories in my daughters’ hearts.

Perspective, sometimes I just need perspective, because life happens quickly and there is a time for everything. Now, it is the time to swim in the stream and allow the current to take me along for the ride.

Stop 

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If you did not get a chance to read my last post, I would really love your feedback as I am trying to improve my blogging.

Help Me Improve My Blogging

I know I am not the best blogger. To be honest, I have struggled to find my niche. The thing is, I consider myself a writer, not a blogger, yet blogging is about writing. This is my personal blog, but my life is not interesting enough for you to keep coming back if I don;t have anything to offer.

So I have a big favor to ask, would you consider taking the time to answer some questions and help me out figure out this blogging thing I do?

1. Why do you read my blog? What keeps you coming back?

2. If you were to describe my blog to a friend, what would you say?

3. What topics are the ones where you see my best writing?

4. What topics are of the most interest to you?

5. If you could give me one piece of advice to improve my blog, what would it be?

I really appreciate that you are here and that you read my words and therefore I want to create content that makes you want to keep coming back.

In advance, thanks for answering my questions and helping me out.

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Five Tips to Help You Prepare for an IEP

It is no secret that one of the biggest “woes” for parent’s of kids with special needs comes yearly in the form of an IEP (Individualized Education Plan). Often times, parents walk into an IEP meeting as if walking into a battle in which they are outnumbered. Parents vs. School (teachers, therapists, support staff, etc.) and the child’s future is in the hands of the winning party.

The end of the school year often marks a time where IEP’s are being drafted for the 2012-13 school year.

I want to share with you 5 simple tips that can help you as you prepare for your child’s IEP meeting.

    1. Make a list of goals you have for your child.

Ask yourself: “What do I hope my child will accomplish in the coming school year?”

Break it down into the different areas where your child will be receiving extra support, therapy, or special education modifications.

Remember: IEP goals are for school settings only. What does your child need in order to excel in an academic setting? I would love for Nichole to learn how to ride a tricycle, however, riding a tricycle is not necessary for academic achievement. Building leg strength and coordination, on the other hand, is important as children participate in Physical Education. Riding a tricycle might just be a great way to get her to achieve those goals.

Here are some examples I came up with before the IEP:

Speech: Nichole will be able to spontaneously use 3 word sentences.

Speech: Nichole will respond to “wh” questions: what, where, which, who

Fine motor: Nichole will independently cut a 6 inch wide piece of paper using adaptive scissors.

Fine motor: Nichole will trace her name with capital letters.

Gross motor: Nichole will climb safely on the playground equipment.

Gross motor: Nichole will demonstrate proper gait when running.

Social/emotional: Nichole will engage in dramatic play with a peer.

Social/ emotional: Nichole will take turns.

Academic: Nichole will rote count to 10 consistently.

Academic: Nichole will identify “on” “under” “besides” consistently.

The more specific you can be with your goals, the better!

    2.  Ask for a copy of your child’s IEP draft before the IEP meeting.

One of the reasons you might want the copy before hand is to deal with the emotional aspect of an IEP on your own, at home. I know how overwhelming it can be to read tests results and have your child’s delays “packaged” together in a document. As we do life with our kids day to day, we do not deal with all of their delays at once. It really doesn’t matter that your child is not able to identify letters when they have finally mastered using a fork at the dinner table and you are over the moon with this new accomplishment. But with an IEP, every single area where your child struggles is documented and this can be difficult. It is okay to cry. Deal with those emotions so that when you are meeting with the team, you can put those aside and remember that your child does have great potential. The goal of the IEP meeting is to make sure there is a plan set in motion so that your child’s potential is achieved, so keep that in mind.

The IEP will have a list of goals from the teachers, therapists, and other support staff that might work with your kid.  Remember the list of goals you came up with for your child? This is where you get to compare the goals. Were some of them the same? Are some of them confusing to you? Is there anything  you think is important and should be added? Make sure to bring a list of the goals you want to see added, as well as questions you have concerning the “why” or “how” of certain goals listed in the IEP.

Remember, parents are team members in the IEP meeting. Do your part and be prepared!

    3. Bring food.

Yes, I did just say to bring food. Why? Because food breaks an unspoken barrier, it says, “I want to be friendly, I don’t want to fight and I am thankful you are here.” Bring paper plates or napkins too.

The last few weeks I have seen one of the special education teachers stay for IEP meetings after school almost every day. She has kids at home and it means she is not making it back to her family until late. Yes, it is part of her job, but she is also a wife and a mom. Bringing some brownies, donuts, cheese and crackers, or other snacks says, “I appreciate the time you have taken to be here for my child.” It speaks volumes when you do something to show appreciation for someone’s time. 

Gifts is one of my love languages, if I could fit it in my budget, I would have taken orders from all of them to Starbucks, no kidding! Instead, I brought granola bars and cheese and crackers. Granola bars had chocolate chips in them, we were mostly women, chocolate is known to sometimes brighten a woman’s day. Enough said.

  

    4. Know the law.

You want to be friendly, but you are your child’s advocate.

“Speak up for those who cannot speak for themselves,
    for the rights of all who are destitute.
Speak up and judge fairly;
    defend the rights of the poor and needy.”

Proverbs 31:8-9

A woman I trust and admire gave me this verse as I asked her questions about the IEP process. She is the mother of an adult child now, and was reminding me that yes, you want to be nice, but you also have a responsibility to be an advocate for your child! 

Bring food, be friendly, but when it is time to speak up, you speak up. In order to do that, it is important that you are familiar with the special education laws!

Here are some great resources for you.

Wright’s Law: This is a website dedicated to special education law and the law surrounding IEP’s. 

Wright’s Law: From Emotions to Advocacy:the Special Education Survival Guide: This is one of the most valuable books you will read if your child has an IEP. It details and explains the law, your rights, your child’s rights, and what the school can or cannot do. Seriously, get this book! I in no way benefit from you buying this book, but it has been a valuable resource as I learn to navigate the world of special education.

    5. Take lots of notes and ask questions.

During the IEP meeting make sure you are taking notes. Things will be said and comments will be made that you might want to come back to. Jut down where you asked for a goal to be included. Write the comment from the physical therapist that was encouraging. Make sure you take notes of the teacher’s concern about your child’s safety in the playground. With your notes in hand you can go home and do some brainstorming as you process the conversations that took place.

Don’t hesitate to ask questions. If you are confused why your child is not getting more time in speech therapy, ask. If you still don’t understand, ask again. Be polite though, don’t point fingers, and make the questions about yourself. For example, you can say, “I am still puzzled, if we all agree speech is the greatest area of concern, why is my child only getting 40 minutes a week of speech therapy?”

So that’s it. Five simple tips that will hopefully help you feel better prepared for an IEP meeting.

Remember, you are an important and invaluable member of your child’s IEP team. Your know your child best and you are your child’s advocate. Be prepared, be professional, and be ready. 

And pray! Ask God to help you through the emotions of the IEP, to help you be a good advocate, and to help you build strong relationships with the rest of the team.

What has your IEP experience been like?

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Searching for Identity

Again I am linking up with Gypsy mama for 5 Minute Friday, where you write for 5 minutes, no editing, no over-thinking, you just write! What you get is what you get!

Theme: Identity

Go

 

I find myself in a place where I am struggling with identity.

Is my identity found in being a stay-at-home mom? More specifically yet, a mom of children with special needs? The thing is, I don’t enjoy most of what my “job description” entails. I don’t like to cook, I don’t like to plan meals, I don’t like to go grocery shopping, I don’t like to do dishes. I don’t like to do laundry, fold clothes or put them away. I don’t like to make beds, sweep floors, clean the bathroom. I do these things as chores, because I have to. There is no joy in that for me. I know, I know, I am supposed to do all things as if I was doing them for the Lord. Well, I am being honest, this is a struggle and I just don’t like it.

Oh I love my kids. They bring me great joy! I love to see their smiling faces and their personalities shining through. I often find myself staring at Nichole with a puppy face and dreamy eyes in awe of this little person that I get to call my daughter. Crazy how scared I was about Down syndrome! Ellie is just amazing and the sky is her limit, really. And then Nina who just keeps showing me what determination and courage really look like. What a blessing! But that has nothing to do with me and my identity, that joy is find purely in their own beings, aside from myself.

Is my identity found in being a writer? Oh I hope not because I am not about to sign the next great book contract and I do not have articles flying left and right. My little blog is yet another example that I am not where I would like to be when it comes to my writing dreams. I have no niche.

I know my identity is found in Christ, I know who I belong to and how He sees me. But although I know this truth I am often  stuck on being a mom and doing some writing.

So who am I? I am in the process of discovering myself.

Stop

(Don't forget to stop by and read the beautiful devotional blog post from Deidra: The Address)