Wednesday, March 4, 2015

stop the r-word...


Grace and I are wearing our shirts today in support of the sixth annual spread the word stop the word day.  Of course, she gets to wear her supergirl shirt because people with intellectual disabilities are super heros.  

 People with intellectual disabilities (like Grace) matter and using the r-word to signify something is stupid or less than, demeans them and you.

I encourage you to find another word to express what you mean.  I suggested using ridiculous in this post.  However, according to this article there are too many words in the english language to count so you should have no problem finding another one.


Go here to join the movement and make a pledge to stop using the r-word.



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Monday, March 2, 2015

week three...

Week three started off slowly.  Due to my accident, we needed to get a rental car but none of the local agencies had one (because I wasn't the only one who was in an accident due to the snow).  Thankfully, Mark was able to drive Grace and I to Hershey to pick up a van there.

This week was very similar to the previous two weeks.  We are continuing to introduce new foods to Grace's diet and increasing the amount she she drinks from a cup.  Some of the new foods are scrambled eggs made with milk and cheese and chicken noodle soup.  Grace is also drinking 7-8 ounces of milk a day from a cup.  We are encouraged that she is eating new solid food but need to increase the amount of food she is eating so that she is not eating late at night.
 
We also continue to spend a lot of time in our back camp area.  Grace has discovered that she loves {loves} princess sing a long videos.  So we are spending hour after hour after hour watching them. 


 On Tuesday night, Grace didn't think sleep was necessary so she stayed up till 4:00am.  It wasn't fun.  She also got a bloody nose.  So it was super special to wake up after only 3 hours of sleep to blood all over the sheets - NOT. 

The one bright side to the sleepless night was that she fell asleep at 7:30 on Wednesday night with the lights and TV on.  So I got to watch survivor and keep the lights on later than 8:30.  I've been spending every night reading books on my iPad in the dark, so it was nice to be able to watch TV instead.

It also turns out it was a good thing I couldn't figure out how to clean our bedding because she had another bloody nose on Thursday night.  I think Grace is having bloody noses because it is so dry here.
There are therapy dogs (and pigs) here at the Ronald McDonald House almost every night.  Most nights there are too many people and too much noise for Grace to get comfortable enough to get close to the dogs.  But last week, it was only Grace and another little girl when Coda the 150 pound male Newfoundland showed up.  Coda's mom was so gracious and talked to Grace until she got comfortable.  Grace eventually petted Coda on the head and back.  It was cute to see how happy Coda's mom was that Grace petted him. 


The therapists remain pleased with Grace's progress during therapy.  They are encouraged that Grace is on the right track and impressed with her drinking and eating.  During our fourth and final week, we are going to focus on adding additional solid foods to Grace's diet.  We are also going to work on getting her more calories during the day, so that she isn't up till 11:00 or midnight, as she is now.

Mark was off work this weekend, so it was nice to have some family time.  We had a movie night on Saturday and watched Big Hero 6, which was really good.

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Friday, February 27, 2015

the orange dump truck...

Recently, Grace has shown a tendency to pick one toy that she prefers.  Here at the feeding clinic, she is fixated on an orange dump truck.

She typically finds it every day and will pick it up and carry it around. 
Sometimes she likes to sit and spin it's wheels.  Over and over and over.

 Out of all the toys here, this is clearly her favorite.
 A few days ago, she was holding it and a little boy wanted to play with it.  When Grace put it down, he went to pick it up and his mother stopped him.  Telling him, no that was Grace's toy.  He promptly threw a fit.  So mom took him out of the waiting area into the feeding room.  He continued to cry.  Grace stood there watching him.  Then, she picked up the dump truck and walked into the room with him.  She put the truck down at his feet and stepped back.

I said to him, 'Grace is sharing it with you.  You can play with it.'  So he picked up the truck to play with it.  Grace just smiled.  My sweet and special girl shared.  Intentionally.  To provide comfort to another child.

I was almost in tears.  Sharing is something that moms spend untold hours trying to instill in our children from a very young age.  However, this is not something that we have actively tried to train Grace to do.  She is not one to typically play with a toy for very long and due to her developmental delays she chooses baby toys.    When they were all little, her brothers would allow her to play with a toy until she got bored and then they would just pick it back up.  We never made her share because we were usually so darn happy she was showing a preference for something and using her hands.

When it was time for the boy to have his feeding session, Grace picked up the orange dump truck and walked out of the room.

We have long suspected that there is more to Grace than we have been able to tap into.  It is difficult to get a sense of what a person is capable of when they are non-verbal.  But this uninterrupted time of being with Grace has shown me that there is untapped potential in there.  Our job going forward will be to figure out how to reach her and help her grow into it.

As difficult as it has been to be away from home and my other loves, this time is precious to me.  I always dreamed of mother daughter time when I became a mom.  My visions included mani/pedi sessions, trips to Manhattan, shopping and lunches at fun tea houses or funky cafes.  You know, girl stuff.  Never in my wildest dreams did I think that my heart's desire would be fulfilled in a feeding clinic.

My love for Grace has always been larger and more encompassing than I thought possible.  In talking to other moms of special needs kids, it's just the way we love these little humans whose special needs are more visible than the rest of ours.  But this time has been a balm to my soul.  A gift of encouragement from a gracious and loving God.  As our third week draws to a close, I wanted to make sure I remembered the gifts and not just the sleepless nights, isolation and loneliness that have been my companions these past weeks.


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Wednesday, February 25, 2015

snow...

This  past Saturday the kids and I headed out to see friends shortly after it started to snow.  The roads were pretty slick, but they seemed manageable.  About half way there, I realized that maybe we should have stayed home.  Shortly after that, the pick up truck in front of me stopped in the middle of the road.  I looked up ahead and realized two things.  One, that there was a car blocking our lane (he had pulled half way out of a side road) and two, I wasn't going to be able to stop.  I wasn't going that fast but the roads were just too slick and I had no traction.

I was able to slow my van down a little and turned the wheel so the impact was on the passenger side of the van.  In the split section before we hit, I told the kids I'm not going to be able to stop.  Thankfully, thankfully, no one was hurt.  I remember looking back at the kids and saying 'are you okay'.  And then saying a prayer 'thank you Jesus!'.  Later, they told me that I said a bad word right before I hit the truck.  There's no doubt in my mind I did.

The passenger in the truck was out before I could open my door.  He was so concerned about me and the kids that I got a little teary eyed and truthfully, I was shaking.  I said, 'I'm so sorry.  I saw you stop for that car and had no brakes.'  And then I said, 'This is my first accident in 32 years of driving.'  I had literally never caused an accident before.

He was so gracious and was also an off duty paramedic.  So thankfully, he knew what to do to summon help.  When he got off the phone with the police, he told me that they had received four calls about our accident.  He asked me to get my identification from my vehicle.  I was so shaken, I forgot to think of doing that.  As I was reaching into my car, my phone rang and it was Mark.  He was calling because he knew we would be leaving for our friend's house and wanted to tell me the roads were bad.  I just laughed, a little hysterically maybe, and told him I was well aware of that since I had just hit a pick up truck.


My boys were freaking out.  They were so scared.  I kept hugging them and telling them, 'we're okay, we're okay'.  But still they were freaked out.  They both declared they hated snow and never wanted to see it again.  By this time the police were there and I was realizing that I didn't know who to call to bring us home.  I have plenty of friends but the storm was getting worse and I kept hoping that someone I knew would just happen to be passing and offer to give us a ride.  Instead, the guy I hit took us home.  I may or may not have sent him a thank you card.

All afternoon and night, I kept hugging the boys and telling them it was okay.  The most important thing was we were okay and my van could either be repaired or replaced.  Then they started dreaming of getting me a new vehicle.  They suggested an extended cab pick up truck or a jeep.  As I was putting them to bed, we prayed about the day and thanked God that everyone was healthy and unhurt.  They reiterated their dislike of snow.

On Sunday we woke up to the news that I wouldn't be able to get a rental car until Monday.  Because Mark had to work in the afternoon, we all pitched in to shovel the driveway, sidewalk and front walk.  It was easy going with all four of us and didn't take long.

After the shoveling Mark helped the boys build a snowman.  This also helped them remember why they enjoyed the snow.  Even though it caused dangerous conditions for driving the day before, in the sunshine of a new day they remembered how fun it could be too.


They tried several different versions of the snowman.  I called them outfits and was told I was wrong.  They settled on the WVU snowman as their favorite.  I personally liked the mini-snowman the best.


Grace and I have a rental van here in Hershey so we're fine.  There are tons of calls and follow up to be done about my van but (again) thankfully no one was hurt.  I'm so glad that Mark was able to help the boys remember their love of snow.  Now, I'm over winter and want SPRING...

Monday, February 23, 2015

week two of get grace to eat...

The second week has been more of the same with Grace.  We are continuing to have 6-8 feeding sessions a day.  In which, we are giving Grace both preferred foods (like applesauce, yogurt and mandarin oranges) and new foods (like peas, green beans and cooked carrots).  She has been doing really well with the format of eating when we tell her to eat and eating what we give her to eat.


Since she has done well with that, we added drinking from a cup.  Up till this point, Grace has been getting all her liquids from pureed foods.  So after our first visit to the feeding clinic in December, we started having Grace 'drink' milk mixed with a little yogurt off a spoon.  She did really well with this so the next step was to introduce a cup. 

This did not go well the first day.  Or the second.  By the third day, she was actively participating in drinking from the cup by closing her lips over the rim.  She would take 2-3 sips of milk at the end of each session.  We are using a cut out cup, which means one side of the cup is lower than the other side to make it easier to hold the cup up to her mouth.



We also added new foods to her meals.  Grace ate spaghetti o's and vegetable soup with alphabet pasta.  She seemed to like both of these, but she continues to hold or pocket food in her cheek.  However, at the end of the second week the therapists were very encouraging about Grace's progress.  We were sent home Friday to continue with our current feeding schedule.

There is a lot of down time for Grace, since her feeding sessions are only 10 minutes long.  So she spends a lot of time walking the halls...


And sitting on the floor in the hallway...


And laying on the floor in our back camp...


We also spend a lot of time at the Ronald McDonald House.  It is an amazing place and they do so much for the people who stay here.  I will say that the volunteers and other guests are not used to special needs kids.  So Grace spends a lot of our time educating them on special needs.  What that really means, is that we get a lot of looks and I have to continually say she's non verbal and is screaming because she's happy.  I am in no way complaining about this, since I had no experience with special needs kids before Grace came into our family.  But it does get tiring some nights.

Every night they have therapy dogs which Grace watches from afar.  Last week they had a therapy pig come in for a visit.  Grace was totally intrigued by Arnold the therapy pig. 


She also enjoys the playroom.  She finds new and interesting ways to play with the toys in the playroom...


Overall, it was a good second week.  It still continues to be an isolating experience for me and I feel completely disconnected from Mark and the boys.  But I have received so many texts, emails and calls from friends that I don't feel completely alone.  It is also comforting to know that so many people are taking care of my hubs and boys by bringing them food and helping to get the boys to school.  Grace and I were both happy to get home Friday, see our family and sleep in separate beds...

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Monday, February 16, 2015

operation get grace to eat...

Grace started feeding therapy last Monday, on John's birthday.  I was prepared.  I like the process of becoming prepared.  I love lists.  So, I had lists of things that I had to get done before I could leave home, lists of what to bring with us and lists of instructions on how to run our home without me for a month.  I felt good about things.


I totally wasn't prepared.  I may have brought 7 bags of stuff (yes, it's just me and Grace) but I still forgot about 17 things we needed.  So I had to go shopping, several times.  But even if I had brought everything we needed for the month.  I still wouldn't have been prepared.

It's really hard to prepare yourself emotionally for something like this.  And I think, in all my preparation I forgot that this was going to be super emotional for both of us.  Grace's primary feeding therapist, Whitney, agreed that there is no way for parents to be emotionally prepared for the toll therapy takes on you.


 Our days are like the movie ground hog day.  We are in the feeding clinic from 9:00 - 4:30(ish) every day.  Grace has six to seven feeding sessions a day and the rest of the time, we are in the back waiting area.  They have a separate area for the day treatment families and it allows us to spread out.  But we are alone back there.  We have my lap top, Grace's iPad and my phone.  We have movies, books and some of Grace's toys from home. 

We are back there for hours every day and we are alone.  It is very isolating.  Which is something else I wasn't prepared for.  I didn't think about all the time I would be spending with a completely non-verbal person.
 



Our goals for Grace are that 1) she would eat solid food, 2) drink from a cup and 3) she would feed herself.  Our first week was spent getting Grace to eat during the specified feeding sessions.  We set the timer for 10 minutes and she had to eat for that entire time.  We were feeding her foods she already ate, so I naively thought it would be no big deal.  Boy was I wrong.  The first day, Grace cried, screamed and fought for 45 minutes the first session and then an hour and six minutes the second session.  That is a really loooooong time to fight taking a bite of food.  She finally gave in and ate the bite, but those were some really emotional sessions.

One day, she decided that crying, hitting and screaming wasn't working so she was going to try and charm the therapist.  She laughed, she blew raspberries, she said 'no' (very clearly) and then she said 'go'.  She did all this for 57 minutes before giving in and taking the bite of food.  It was very hard for me not to laugh during this session.  She's smarter than we think.


We cut out her purees, cold turkey, the first day.  Which is our goal, so I was totally on board with that.  However, this cut down her liquid intake so much that she got constipated.  She spent two very uncomfortable days and nights before the miralax worked.  I'd just like to publicly thank the inventor(s) of miralax.  I love you.

By the end of the week, Grace was eating during the feeding sessions without any problem and drinking milk off a spoon for me.  This is key, that we generalize the feeding therapy to me and not just have her trained to eat for the therapists at the clinic.



Once we are finished for the day, we go to the Ronald McDonald House.  We were able to get a room by our second night here.  YAY!  The first night we spent at a hotel, paid for by someone who wanted to make sure that all the families on the waiting list for the RMH didn't have to pay for a hotel.  There are some really amazingly generous people out there.

We get to keep our room for the whole month we are here, even though we are going home on the weekends.  Our room is smallish but comfortable.  We spend a lot of time in our room.  Together.  Alone.  Grace can't really handle all the people and activity in the common rooms.  We also get to share a bed.  I learned that Grace is a snuggler and likes to cuddle.  I'm not and I don't.  Oh well.  It's only a month.



We were both happy to get home on Friday to our boys.  The boys were also having a version of feeding therapy while we were gone.  My village is bringing my family meals two times a week while I'm gone.  Before I left, we discussed how they might be brought food they didn't like but they were to just say thank you and not comment on the food if they didn't like it.  Well.  They both ate quiche and liked it.  Say whaat?  Luke also ate rice that was brought with one meal and requested seconds.  This is something I can't get him to eat, no matter how I flavor it.  John decided that his favorite breakfast was an omelet, after never having one.  So Mark made him a sausage and egg omelet for breakfast one day.  I requested photographic evidence of John eating the omelet and I got it.  I'm thrilled about this trend and really hope it continues as more meals are brought this month.


I would say that overall, week one was a success.  We began training Grace to eat during specified sessions and to eat what was presented to her.  Most of the time the food was something she was already eating, like mandarin oranges, yogurt, applesauce and preferred crunchy foods.  However, we did present some new foods; peas, carrots and green beans, which she also ate without spitting out by the end of the week.

I don't think that week two is going to be any easier.  In fact, I think it is just going to get harder for both of us.  We are going to start her on drinking from a cup on Monday and progress from there to more and more solid foods.

So operation get grace to eat is off to a good start but we have a long three weeks ahead of us...

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Wednesday, February 11, 2015

happy birthday john...

John turned eleven on Monday.  Since Grace and I were leaving on Monday for her therapy, he took one for the team and celebrated all weekend.




Our family tradition is that you get to pick the restaurant for dinner on your birthday.  John picked the same one as last year, since his favorite food is beef enchiladas.  We love this little restaurant, the food and service is amazing.  They brought out mexican ice cream for all the kids with candles in them.  Then John's aunt Patty cut the cake and gave him the piece with his name on it.






John is turning into an awesome young man right before our eyes.  He sounds like a man when he talks on the phone.  He has a great sense of humor and loves to laugh.  He is working really hard in school this year and has the grades to prove it.  He wants to do something significant when he grows up and talks about working with kids or working in ministry.  He can't decide between WVU and University of Delaware for college, he doesn't want to disappoint either parent!

Happy Birthday John!  Mom and Dad love you more than you will ever know...