Monday, January 19, 2015

happy birthday grace...

Our beautiful and sweet little girl is eight today!

It's been awhile since I posted an update on Grace and so  I thought I would do it today, on her birthday.  You can read last year's update here.  Truthfully, most of what was written a year and a half ago is still current information.  Grace continues to be delayed in all areas of growth and development.

 However, she has recently been 'communicating' her needs and wants by taking our hand and walking us to where she wants to go.  For example, at home when she gets hungry she will either walk over to her chair and wait until we notice her there.  Or she will take our hand and walk us over to her chair.  This is clear communication of her desire and is progress.

We are working on a communication plan with her amazing teachers and therapists that includes pictures and choices.  They are working on training Grace to point to a picture of what she wants to do next or the choice she has made.  Once they get that refined, we will begin using the same communication board at home and church.

I still haven't given up hope that she will learn to talk, even though most experts say if she hasn't learned to talk by now, she probably never will.  This is just something I want for her to do so badly.  I'm not sure why I have such a strong desire to hear her voice but I do. 

She has also started to cry to show that she is upset emotionally.  An example of this is when her brothers go downstairs in the basement to play and shut the door.  She will stand at the closed door and cry.  As soon as we open the door and let her go down, she stops crying.  It is so amazing to see her exhibit 'typical' feelings of being left out.  Which now that I type that may seem odd to be happy about, but truly we cherish each time we see Grace act like other typically developing kids.

We will be starting intensive feeding therapy with Grace in February.  Grace and I will be going to Hershey Medical Center for four weeks of 'inpatient' therapy.  We will be staying at the Ronald McDonald House and going to therapy during the week and come home on the weekends.  After years of outpatient therapy and working with Grace at home, we finally came to the realization that her delays were behavioral.  So after much prayer and research, we are going with the program at Hershey.  We have heard really good things about their program for years and are hopeful that they will help Grace reach her goals.

Our goals for Grace are that she will; 1) eat solid food, 2) feed herself and 3) drink liquid.  These are the same three goals we have had for Grace for feeding for 7 years.  We will be starting on drinking liquid and then moving to eating solid foods.  When I met with Kathy, the therapist we will be working with, she said 'We can help you.'.  Which caused me to tear up because no one has ever said that to us about Grace.

So right now, I am busy planning on being away from John, Luke and Mark for a month.  Thankfully, we have amazing family and friends who are willing to help out with the boys, so that Mark can work while I am away.  It is going to be such a big change for our family, but we are convinced  that this is going to help Grace.  I can't wait to eat dinner together as a family of five.  It seems like such a silly thing, but we have never had a family dinner where all of us eat at the same time.

Grace has also developed some mad problem solving skills.  Over the summer, we kept finding Grace out on the back deck but the door was closed.  We couldn't figure out how she was getting out there, since none of us were opening the door for her.  One day, I finally saw what she was doing and was able to catch her in action. It also answered the question of what happened to our screen...


Our church continues to amaze, bless and support our family with respite night.  On the second Saturday of every month, our church hosts respite night for any family with a child of special needs.  You don't even have to go to our church to take part in respite.  They care for all of our children for four hours and really do amazing and fun things with the kids.  Our boys love to go and Mark and I love to have a consistent date night throughout the year.  It allows us to stay connected and gives us at least one night a month to focus each other.  I don't think we would take the time every month without this opportunity even though we know it is super important to sow into your marriage.  This past weekend a local gymnastics center opened their doors for respite night and the kids were able to use the equipment with the help of the kids that train there.

We also continue to learn and grow how to be a family affected by disability.  Which, truth be told, is sometimes harder that I think it should be.  We haven't faced out right discrimination but we have faced judgement and thoughtlessness.  We do experience be stared at in public when Grace decides to vocalize in crowded stores or restaurants.  This continues to be a learning experience for all of us as we talk through helping the boys deal with being singled out and stared at by others.  We also have talks about the impact of having Grace in our family and the fact that we just can't do some things that their friends can do.  These tend to be deep, heart felt conversations that require grace-filled words and sometimes result in tears.

But through it all, we love having Grace in our family and can't imagine our lives without her.  We remind the boys that God chose us to be Grace's family and that she is both a gift and a blessing to us. 

Happy Birthday Grace!  Mom and Dad love you more than you could ever know.  And obviously, I miss warm weather since all the pictures on this post are from last summer!


Tuesday, January 13, 2015

taking care of yourself...

To start off the new year, we had a guest speaker at our First Friday for Moms group and she talked to us about taking care of yourself.  I asked Carole, our Women's Ministry Director, to come talk to the group because she is a Registered Dietician and mom of four kids.  Carole doesn't have a special needs child but totally understands how important it is for busy moms to focus on themselves.  Her talk was interactive and really got all of us thinking. 

We started off by answering the question: What does it look like to take care of yourself?  This lead to a great discussion.  Our list included:

Pausing during the day
Reading the bible or connecting with God in some way
Spending time with friends
Dating our husband

Carole then asked us to list the benefits of taking care of ourselves. 

Less stress
Feel better and don't get sick as often
We feel connected and less isolated
Decrease in depression
More positive outlook on days
Increased well being
Happier in our relationships (including our marriages)
Weight loss

After that discussion, Carole asked us 'Then why don't we take better care of ourselves?'  Our discussion was very vocal and our list was extensive.  We're...

Going to doctor's appointments and therapy sessions for our kids
We have meetings to schedule and attend for our kids
We have IEP's to survive
Too tired
Setting our goals too high
Feeling overwhelmed
Have no time left after caring for our kids, husband and house

The group then discussed, 'What would have to change in your life in order for you to take better care of yourself?'.  This question evoked a lot of discussion from all the moms.  Here are the top five that we came up with and they're all pretty self explanatory...

1. Better time managment
2. Switch up activities or priorities
3. Delegate tasks, chores or work to others (ask for help so you have free time)
4. Set new standards for ourselves
5. Make a decision that YOU are important

Carole encouraged us to focus on three main areas of our lives and look for small ways we could make changes that would improve the way we take care of ourselves.  We then brainstormed some ways:

1. Nutrition or Eating
- meal planning
- increase veggies
- be mindful of what and when we are eating
- increase water consumption (and decrease sugar ladened drinks)

2. Exercise
- put it on your calendar, like you do meetings
- invest in equipment for your home if going to the gym isn't possible
- walk more - park far away from the store
- get your family involved by taking family walks
- do it with a friend so you are more likely to be committed
- keep your sneakers in the car
- just do it, something is better than nothing!

3. Mental or Spiritual
- read your bible or a positive mental attitude book
- join a bible study
- take a break or pause during the day to refresh your mind and outlook
- go out with friends at night (GNO)
- schedule weekly alone time
- join a group like FFFM and connect with other moms
- date nights with your husband

Our discussion was so active, we ran over our  time limit.  I'm so thankful that Carole came to speak to our group and moderated this discussion.  We also handed out this blog post by Gillian Marchenko, I love her blog.  She is a great writer and her posts are full of grace and truth.

Taking care of ourselves isn't limited to just moms of special needs kids, it isn't limited to just moms, it's necessary for all of us to feel and operate at our best, most optimal level.  So I encourage you to spend a few minutes thinking about how you are doing focusing on your needs.  Ask yourself the questions posed to us by Carole.

What does it look like to take care of yourself?

What is standing in the way of taking care of yourself?

What would have to change in your life in order for you to take better care of yourself?

Next, evaluate how you are doing in terms of your nutrition, exercise and mental/spiritual health.   Then, decide what you will change in each of those three areas.  Keeping in mind that small sustainable change are the best. You can easily accomplish this in about 10-15 minutes. 

Once you have this written down, make a commitment that you are important enough to invest your time and energy.  I guarantee you at the end of the year, will not be sorry you ate better, exercised and took some time to improve your mental health or spiritual relationship with God.  Focus on yourself, you matter.


Thursday, January 8, 2015

one word for the year...

As I said in this post, I typically evaluate my life and set goals around my birthday.  However, this year, the last few months of the year seemed busier than normal and I didn't get a good start on those goals I outlined.  So I decided to dust them off at the new year and refocus on them.  I'm looking forward to not just achieving my goals but crushing them this year.  In order to do this, I need a concrete way to focus on my goals.  One way for me to focus is to pick one word for the year.

I first encountered the practice of picking one word for the year in 2010 from Ali Edwards blog.  She has an amazing blog devoted to scrapbooking and story telling.  The idea behind picking one word for the year, is that you will focus on that particular word as it relates to your life.  The process of focusing yourself daily on this word allows you to grow, learn and change.

I have picked a word over the years with varying degrees of success.  I tend to start off strong and then something else gets my attention and I don't finish with the same intensity I started with.  Which actually, if I were to be completely transparent, is true for most things in my life.  This is especially problematic when I get all gung ho about organizing my closet and take everything out, only to decide I'm too tired to finish and my bedroom looks like my closet threw up (sorry, sweetie!  I promise I'll shove it all back in there finish it before you get home from work.). Some of my past words were intentional, purpose, present (as in being present not accepting gifts) and simplify.

This year, Mark got an email from one of the 'success guys' he gets business emails from and in it this guy mentioned picking one word for the year.  Mark thought that was a great idea and suggested that we all pick a word for the year, even the boys.

So we talked to them about this concept and asked them to think about what they wanted to focus on for the year.  I'm not sure how much intention went into their word choices, because they picked them pretty quickly.  

Luke picked KIND.  He said so he would remember to always be kind to others this year.  This one will not be that much of stretch for Luke since he is truly kind hearted but it is a good place for him to start this practice.

John picked RESPECT.  He said it was because he wanted to focus on respecting those in authority.  We discussed that everyone deserves respect not just those who are teachers or parents or others in obvious positions of authority.  John said that he was happy then that he picked respect, so he could spend the year giving everyone respect.

We picked EAT for Grace.  This is going to be a big year of growth for Grace.  We are determined and have a plan in place to get Grace to reach her eating and feeding goals.  This year, our little girl is going learn to eat solid food, drink liquids and feed herself.  This one is so big it deserves it's own post, so look for that in the next few weeks.

Mark picked DISCIPLINE.  He wants to be focused in all areas of his life but particularly business.  To this end, he has made daily and weekly goals for calls and orders for Formula II.

I picked ORDER.  After writing this blog series on order, I've been spending a lot of time thinking about balance and order.  I decided that even though I wrote that series, I would still like to spend this year focusing on ordering my daily life and our home.  I think that these are two areas that I tend to go either over ordered or not ordered enough, so I'm looking forward to daily remembering to focus on order.

I've set specific goals within the categories of myself and my home where I want to find more order and balance.  One of first goals for me relates to fitness and health.  I've had some minor, nagging pains or injuries that prevented me from working out consistently in 2014.  Running has always been my therapy but it's just not possible right now.  Partly because of some knee issues I have and partly because it is 9 (NINE!) degrees outside as I type this post.  One thing I know about myself is that in order to work out more consistently, I need accountability.  So I signed up for this 21 day superhero challenge.  Today is day 4 and I'm loving the meal plans, work outs and general health information from Emily. 

We'd like to have family meetings once a month where we can all report how we are doing focusing on our word for the year.  I'm thinking I need to make up signs or something so the words are front and center in our home as a reminder.  We think it will make it easier for all of us to stay focused on our word of the year if we are doing this as a family instead of doing it on our own.

And because a post without a picture isn't really a blog post for me, here is a family picture from last week.  Along with 20,000 other people, we went to our favorite gardens with my parents to see the Christmas displays.  I decided I wanted a family picture in front of this tree.  So we asked my dad to take the picture with my new phone.  He wasn't sure he was doing it right so John (who's 10 and doesn't actually have a phone) stepped out of the picture to help him and then my new phone froze.  We stood in the way for about 10 minutes to get a family photo.  When we got home, I checked my phone and realized there were 47 new pictures.  This is the best one out of all of those...

Have you picked a word for the year?  How do you stay focused on your word?  I'd love some tips or words of wisdom.


Tuesday, January 6, 2015

happy birthday luke...

Our sweet, kind and loving middle child turned 9 on New Year's Day.  We love ringing in the new year by celebrating Luke's birthday.  We had friends over for New Year's Eve and they left late, so the kids didn't go to bed until almost midnight.  However, Luke was up early because he desperately wanted his presents.  Every year it gets harder and harder to surprise him with his birthday gifts.  This year, both boys had a very lego Christmas.  His birthday was mainly Star Wars action figures and Spider-Man, of course there was Spidey.

Our birthday tradition is that the birthday person gets to choose the restaurant where they want to have their birthday dinner.  This year Luke asked to go to Buffalo Wild Wings, so we could watch the bowl games.  He invited his cousins and grandparents so it was a super fun birthday meal.  We brought the cake, which he asked me to buy not to make this year.  He said my cake from last year was good, but the one from the grocery store came with an action figure...

Happy Birthday Luke!  We can't wait to see all the amazing things you do and learn this year.  Mom and Dad love you more than you will ever know...


Thursday, December 25, 2014

merry christmas 2014...

O Holy Night! The stars are brightly shining,
It is the night of the dear Savior's birth.
Long lay the world in sin and error pining.
Till He appeared and the Spirit felt its worth.
A thrill of hope the weary world rejoices,
For yonder breaks a new and glorious morn.
Fall on your knees! Oh, hear the angel voices!
O night divine, the night when Christ was born;
O night, O Holy Night , O night divine!
O night, O Holy Night , O night divine!


Wednesday, December 24, 2014

christmas traditions...

I can't believe it is Christmas Eve already.  The time between Thanksgiving and Christmas has just flown by.  I really wanted to do an Advent celebration with the kids, reminiscent of when I was a child.  But I didn't find one that I liked and so I missed my opportunity this year.  I'd like to add this to our Christmas traditions for next year, so hopefully I will remember in June that I want to do this so I can find one well before the time I need it.

My goal for this Christmas season was to spend more purposeful family time together and focus less on the presents aspect of the holiday.  I like to think we achieved the perfect balance but it is difficult to combat all the commercialism.

One tradition we have is to put our Christmas tree up the weekend after Thanksgiving.  We have an artificial tree which we bought when we moved into this house and I love it.  I was raised going to a tree farm and finding the perfect Christmas tree, and I would love to do that with my kids one year.  But it's hard to beat the ease of an artificial tree.  Due to a variety of reasons, we put our tree up but weren't able to decorate it for about a week.  I really liked the plain tree with just white lights but the kids overruled me.  Because, traditions are traditions.

When we were able to finally decorate the tree, Mark was at work.  So our tree has no ornaments on the top 2 feet, but the kids deemed it perfect!  Every year I have them pose putting up the first ornament.  Since Mark was at work, John had to help Grace with her ornament.  It's fun to see how they both are laughing and he was so pleased I was able to get a good picture of her.  One day, I'm going to do a collage of all of these hanging the first ornament pictures, I think it will be fun to see how they've grown over the years.

Another tradition is taking a picture in front of the Christmas tree.  These are all from my phone, but they seemed to turn out okay.  For some reason, Grace wouldn't stop laughing.  So even though she wasn't looking at me, she looks happy.

We also bake cookies and decorate them together.  This is one of my favorite memories from my childhood and is easily one of our family favorites.  It's become so much more enjoyable since the boys do pretty much everything themselves with some light supervision from me.  I love how they can bake cookies on their own.  They still over decorate the cookies but at least now I've convinced them to leave some undecorated.

I bought them a ninja-bread cookie decorating set this year.  So most of our cookies were either ninjas or superheros.  They also used a random elephant cookie cutter, because nothing says the birth of our Savior like an elephant covered in frosting and too many sprinkles.  Thanks to cookie mix in a bag, we made and decorated cookies four times this year.  It was so fun.

Another annual tradition is a gingerbread house decorating contest.  This year we had some additional helpers and there were 3 houses to judge.  We voted like they do in survivor, except you put down the number of the house you liked best.  The winning house was house number 3 and all the competitors then ate the house while drinking hot chocolate.  It was WAY too much sugar but it was fun.

Today the kids deemed it lazy, pj day and we are staying home all day.  Which, I'm pretty sure, is in response to the five hours of errands we did yesterday.  So we are listening to Christmas music, wrapping presents, making more cookies, addressing the last of our Christmas cards (I can't believe I waited this long to send them out this year) and getting ready to have my family over for dinner.  I can't think of a better way to spend Christmas Eve.

Hope you are enjoying Christmas Eve and preparing your hearts to celebrate the birth of our Savior...

Tuesday, December 16, 2014

grace went to the dentist...

I'd like to interrupt the frenzy of getting ready for Christmas or Chanukah with a little update on my sweet, special girl.  I started this post last week, but was sick and over-tired because of being sick so I'm writing about it today.  Grace had her fist dentist appointment last week!

As with most things that typical kids do without thought or fanfare, going to the dentist is a big deal for Grace.  She is considered orally defensive.  Which means that sister doesn't open her mouth for anything.  She hates, hates, hates having her teeth brushed.  It typically takes 3 people to do and I pray that her brothers are not traumatized by all the screaming and crying.  It is funny when she has a loose tooth because she won't let you touch it.  And I'm afraid to put my fingers in her mouth.  So usually, we find out she lost a tooth because there's all of the sudden a gap there when she wakes up or school sends either the tooth or a note home. 

We had been on waiting lists for two years at the dental clinics at both local children's hospitals.  I kept telling Mark that we needed to find a dentist that specialized in special needs kids.  Well, we finally did.  A friend of mine who has a son with autism recommended the dentist she takes her son Sammy to.  So I called and explained Grace and her oral defensiveness and they scheduled an appointment for us.

I was pretty nervous because I hate to see Grace upset.  But I knew that we needed to try and take her.  She can't tell us if anything in her mouth hurts and I was beginning to be concerned about cavities because of how difficult it is to brush her teeth.  Also, my dear friend Ana came with us and that made all the difference in the appointment for both me and Grace.

We took Grace to see Dr. Carolyn Loughlin.  The whole appointment was amazing.  All of the staff were so great with us.  They all understood that she had multiple special needs and was scared out of her mind.  They talked to her the whole time, even though they knew she couldn't talk.  It did end up taking four of us to hold her down for the exam and she cried through most of it.  But after a while, Grace must have realized that they weren't going to hurt her because she stopped fighting and opened her mouth on her own.  I'm not going to lie.  I was bawling.  I was so proud of her!  I was equally impressed with the care and attention she got from the staff.  I can't say enough good things about this dentist's office.

After the evaluation, Dr. Loughlin said she hoped that Grace would become less and less scared at each visit until she was voluntarily getting her teeth cleaned.  I am hopeful that will happen with time because this year was the first year she had her annual physical check up without crying.  So I think that bringing Grace to this dentist will help her with her reluctance to open her mouth.

I cannot recommend this office and dentist enough.  If we didn't already love the dentist we take John and Luke to, I would be switching them to her also.  If you are looking for a good pediatric dentist for your special needs child, I urge you to call Dr. Loughlin's office.  You can find her website here at healthy young smiles.