Sunday, June 28, 2009

Our plan is not his plan...


One downfall of being in the military is obviously the deployments. Bradley and I have been through our fair share of them, as well as training schedules and exercises that take him away from home for weeks or months at a time. Although dates tend to change with the military, there's always a general schedule in place of "what is when" or "who will be where". Bradley and I are used to this and it works for us. Deployments are rough, but we learn to appreciate the time we have together and the simplest of moments are the ones we cherish the most.


Until this last summer, Bradley and I have spent the majority of our marriage apart. Thankfully he has been home since June 2008. He's been home for the majority of the pregnancy, the delivery, and everything to follow. We had anticipated him moving to Japan ahead of us while we spent 2-3 months in Ohio without him while we waited on Marissa's paperwork to travel to Japan. After all, this was nothing new to us. We were supposed to be in Okinawa. A beautiful island and the best part, no deployments. Little did we know that God had another plan for us.


Well, the day our little Marissa was born the pediatrician came into our room and without any warning, in front of friends and family, advised us that he suspected that she may have Down Syndrome (it took over a month to get the results confirming that she does indeed have an extra chromosome). With that, they checked her heart and we received the news that she had a congenital heart defect, that might require surgery (4 months later she had her surgery). After numerous (and I mean NUMEROUS) doctor's appointments, evaluations, and surgery we found ourselves moving to N. Carolina. None of this was in our perfect plan.

Not quite the island escape that we had anticipated, nor are we free from deployments either, and oh, now we have a daughter with Down Syndrome. What the heck was God thinking? Now, there are some days that I'm slightly annoyed that my life plan isn't exactly how I had envisioned it. But most of the time...I have to sit back and smile.

God placed us in Ohio to have our beautiful baby...right around the corner from both our families. We were both nervous about moving across the ocean with a brand new baby and no family support and although NC isn't next door, it's more accessible than an ocean. Now we have a home, we putz around in the backyard, grill out, or sit inside watching Marissa roll around the floor chasing her toys. Although we're getting ready for the deployment, we are both thankful that Bradley has been home for an entire year. That's a record for us! We are well aware that he's going to miss 6 mo. of Marissa's growing up, but he's been here for so much more. I'm confident that I can get through deployments "alone", but an unexpected diagnosis of Down Syndrome and the months to follow that: well, I just can't give up on the idea that God knew exactly what each of us was going to need and when we would need it. God is absolutely my rock, but having Bradley here for all the ups and downs those first few months were priceless. I'm so sad that we will be saying "farewell" soon, but I'm eternally grateful for all the time we've have together. God's plan is certainly not our plan, but I seem to think he's got something better for each of us...something even better than we can even begin to imagine.



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Friday, June 26, 2009

Treadmill Training

We have completed a full week of treadmill training therapy! Marissa has been doing fantastic with the new exercise. We were trained last week by Gerry Highsmith, owner of Pediatric Therapy Associates. She was absolutely fantastic and very encouraging. She's one of the few professionals I've met that spoke of the accomplishments that Marissa will be able to achieve. My only regret, is that we live over an hour from her facility, otherwise she would be our primary PT.

I took a little video of Marissa on day 4 of her training.
video

Some comments on our approach:
1. Since the video, I now sit behind Marissa on a small bench, a back saver for me.
2. I purchased garden gloves with gripper material to decrease slipping.
3. The treadmill speed is set at .62 mph, the absolute slowest it'll go. Per the research, it should go .50 mph, but this is what we have so we're sticking with it.
4. Marissa is required to wear socks and shoes while walking on the treadmill.
5. The telephone toy is used as a motivational toy for Marissa to keep her eyes AND to allow me to track her walking time.
6. Marissa should be waking for 30 seconds every day. In the research studies, treadmill therapy wasn't effective if it was only run once a week. As Marissa's walking skills strengthen we will increase her walking time by 30 second increments with the goal being for her to walk for 10-12 minutes.

We are very excited about treadmill training therapy. Marissa seems to be catching onto the concept very quickly.

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Tuesday, June 23, 2009

Fathers Day with a Twist

As we begin to wind down and prepare for Bradley's deployment that's been steadily looming over us, I decided to celebrate Father's Day with a twist. Sadly, we are anticipating that Bradley is going to miss a lot of "firsts" for Marissa, in particular her 1st birthday. Lucky for us though, Marissa turned 9 months old on the June 21, also known as Father's Day. So we had a 9 month old birthday party complete with a little balloon, birthday plates and napkins, and a 3 cupcakes. Marissa had a pink one, Bradley got blue one, and I had a yellow one. We sang happy birthday together, blew out the candle, and Marissa literally dived into her bright pink cupcake!


Then she spotted Daddy's blue cupcake and she simply had to try it.


Apparently that wasn't enough for her because then it was time taste my yellow one. It was priceless! Who knew she could open her mouth so wide!


I think it's safe to say that she enjoyed all 3 of the cupcakes.



Overall, we all had a very nice Father's Day. It doesn't quite make up for the days and months that Bradley will miss, but we will continue to do everything possible to make each and every moment count and to be thankful for the time that he is here.


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Thursday, June 18, 2009

Friday Organization



What you need: Index cards, writing utensil, tape/glue, store bought flash cards if you like.

In my experience, making flashcards has been quite time consuming. I have found limited resources for sign language flashcards so I've had to scour the internet finding the meaning of this word or that. Overall the most useful site has beenASL University and ASL Resources.

I have purchased several packages of flashcards, primarily from Dollar Tree. I've bought them from other retailers, but flashcards for $1.00 is just economical. I also purchase 2 packs at a time so that when Marissa gets older I can use them with a matching program.

On every flashcard set that I purchase or create using my computer, on the reverse side I have the sign for the given object on the card.

In addition to flashcards with things or objects, I have a set of flashcards with letters. These cards follow the same format as our flashcards with objects. One side has the letter and the reverse shows to corresponding ASL sign.


And if you have a child that's ready for reading, there are flashcards for sight words based on Dolch Words. Marissa is a little young for this set of cards, but it's all a work in progress. Fortunately for anyone interested, I found this great sight that already has flashcards for Dolch Sight Vocabulary Words. All you have to do is download the printable cards, cut them out, and there you have it. Please know, that you should still read to your child. Sight words should be used as a supplement to a reading program. I recommend Teach your child to read in 100 easy lessons. It teaches your child how to sound out words versus committing certain ones to memory as with sight words.


All my flashcards are stored in the index card box that I purchased from Staples. You can also place flashcards into a photo album or plastic baggies. It's whatever fits your budget and preferences.

Flashcards can be tedious and time consuming. It's proven much cheaper to make my own and I can be as specific or as general as I want. With a little more research there are many teaching resource sites that have pre-made flashcards, that may be another good option for someone that's short on time. Despite the work involved, it's absolutely worth all the effort. Marissa gets to learn her objects, letters, shapes, colors and I get to learn and teach the sign for those items. Every moment is a teachable moment for Marissa and me. We are doing our best to use those moments wisely.




List of Resources for a variety of flashcards (Provided by Renee through Triangle Down Syndrome Network yahoo group:
PBS kids has great coloring and different sheets with all the characters. Just root around the site (also fun online games)
Noggin.com and nickjr.com have activities/printables from all the different shows as well. I downloaded a cool Blue´s Clues ABC flashcards set one time, plenty of dot to dots, etc. (also fun online games)
Handwritingworksheets.com lets you create your own tracing sheets.
billybear4kids.com/worksheets
kidzone.ws/math/kindergarten. htm
Coloringbookfun.com
Printactivities.com
Abcteach.com - this is one that wants you to join, but it does have free worksheets available without joining
Starfall.com has great ABC worksheets and simple beginning books you can print out

Also, if you google dot-to-dots, lots of sites come up that offer dot to dot sheets for numbers and ABCs.



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Wednesday, June 17, 2009

Thursday Organization

What you need: Index Cards, writing utensil

From my experience, one of the leading causes of behavioral outbursts is the inability to communicate what one wants or needs. Research has repeatedly shown that pairing verbal language with nonverbal language (ie sign language) will increase a child's ability to communicate more effectively and at an earlier age. Due to this research I have been pairing our spoken language with sign language. Although I have some basic knowledge of sign language, I've been working on learning more.

First I use a website that has Baby's 100 First Signs. I've found this site extremely useful in creating flashcards as well as quizzing myself on the 100 words.

Additionally, I have flashcards all throughout the house. Items are labels so that I will learn them right alongside Marissa.





I used flashcards that were purchased for us as a gift and I also used an online ASL dictionary. I used our computer to print the signs and tape/glue them to different objects or pictures. Some people may choose to laminate their cards so that they'll last longer, but I just don't have one.

In addition to the flashcards and visual cues I have scattered throughout the home, I also have flashcards stored neatly in an index card box. But, I had a rough day at work and Marissa is getting hungry so we'll just look at all those resources on Friday.







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Tuesday, June 16, 2009

Wednesday Organization

What you need: a small photo album and pictures of everyone you love

Since we live so far from family, I think it's important for Marissa to see the faces of everyone that loves her on a regular basis. Although computer technology has made it much easier to see and hear family members, it's not feasible to do that every single day.

So, what to do...

1. Get yourself a small photo album. I purchased ours for around $3.00 and it holds up nicely to drooling and grabby hands.
2. Order, develop, or print the pictures of your loved ones. I ordered mine from Snapfish and I printed some on our home computer. I recommend selecting pictures that have little to no distractions in the background. You want the focus to be on the person in the picture and not on what is going on behind him or her.
3. Label each picture with the person's name. I just typed labels on the computer and cut them out, then taped them right to the picture. That way if a therapist is going through the album they know whose who of the family.
4. Present the album every couple days or everyday if you have the time. Feel free to go through the whole album in one sitting, but it's best to show your child just 1 picture at a time. Doing so will decrease any confusion that may arise if your child is trying to determine whose who.

Thursday is going to be a busy, busy day with flashcards. Have your index cards ready. :-)



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Monday, June 15, 2009

Tuesday Organization

What you need: Clipboard and Paper

Keeping track of all the therapy that Marissa receives can be mind boggling. Marissa does play therapy, physical therapy, and she's seen on a monthly basis for occupational and speech therapy. This Wednesday she is going to start treadmill training. And from my experience, the amount of therapy that Marissa receives is nothing compared to what some kiddos are getting.

But, my primary concern now is her physical therapy and making sure that she is receiving all the support possible, especially within the home. Each week the physical therapist gives us things to work on. I want to make sure I follow through with those assignments and in order to do this I created an excel spreadsheet of Marissa's PT goals. In the left vertical column I list the program goals. In the top horizontal columns I write in the date. Each day, I check off the programs that we worked on. That way, I can make sure we are staying on top of the tasks assigned to us. .

I keep my spreadsheet on a clipboard next to the files and the calendar in the playroom. Once again, it's all centrally located for all therapists to find and use easily.

If you are interested in receiving a copy of my spreadsheet, please shoot me an e-mail or leave a comment & I'll get one e-mailed to you. All you'll need to do is enter in your child's goals and start checking off your progress daily.




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Sunday, June 14, 2009

Monday Organization

Hanging ArchiveImage by R.Rasmussen via Flickr

What you'll need: Hanging file folders, a pen/marker, or label maker and a file cabinet or caddy. I prefer the caddy so I can keep all of Marissa's information separate from the house paperwork. Also, I can leave it with the rest of her therapy items. Key point: All therapy related items are centrally located!

Then decide what sort of files you need in your caddy. I have a file for each of the different services we receive: Appt records, Baby Heath (baby resources), DS Resources (specific to Down Syndrome), Acct Summary (for hospital bills), Evaluations, EI Reports, Parents as Teachers, EFMP/Respite, and the list goes on & on...

Mini File Caddy








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Week of Organization

For those that don't know me personally, I am a very organized person. This week, I've decided to share some of my organizational skills towards in home therapy. Not only do I work with Marissa on a daily basis, but I have a work history of working with children that have special needs using Applied Behavioral Analysis (ABA) and doing therapy in the home. I have some personal experience on what it's like to go into someone else's home and work there. From this experience, everything has it's place and the most efficient use of therapy time is knowing where that place is. Not only will the therapist be more at ease, but your child will learn more efficiently as well. My ideas may not work for everyone, but I have found them all to be affordable, easy to put into practice, and useful, not only with the kids I've worked with but also with my own daughter.

The best way to stay organized it to have a calendar of everything that's going on for the month. Although my google calendar is useful, I like to have a hard copy that way anyone coming to work with Marissa can see what she has going on. From doctor's appointment, physical therapy, daycare, or respite care, it's all on there.

Now, the easiest approach would be to buy a calendar, but I'm thrifty so I actually made a copy of a blank fill-in calendar. Each month I fill in the dates and our schedule for the month. I add things as they come up.


Or you can get a Calendar Template. There are many to choose from online that will meet your specific needs.

Whatever calendar you go with...always keep it in the same location and post it somewhere that's convenient for you and all the therapists that are coming in and out. We have ours posted in the playroom right above Marissa's books. Until tomorrow...happy organizing. :-)

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Learning Numbers

I saw Popsicle Numbers on a mom's group that I'm in and thought I'd share the idea with everyone.

Marissa is too small/young for this, but it's a good thought for future projects.

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Saturday, June 13, 2009

The perfect baby tub

I'm writing this as an extension of dsmamas blog where she presents the 10 things mama's got to have... She had a lot of great ideas, several items that we have in our home. She wondered about baby tubs though and we have tried plenty. There are many tubs out there, and I'm still in search for the best of the best, but here are a few that we've tried for Marissa. Keep in mind, she's a floppy little baby which is why we've gone through a wide range of tubs. This is our experience with baby tubs:


First, I tried the white one...


then the bath pillow...


then we moved and got the pink one...


The pillow was good, but Marissa couldn't sit in the tub so we tried the tub seat...


Marissa would slid through the leg holes on the tub seat, so I did this to our pink tub...


It worked alright, but we got some more slidding...so we thought an innertube would work, but it's a little large for her tub and it was a hand-me-down so the center seat deflates...


Since it deflates, we are going to try this other hand me down...


The white & pink tub worked well, but there's a lot of slippage. They are nice to keep the dirty water separate from the clean water.

The tub seat is my least favorite. It takes up too much space and since Marissa is a floppy little baby, it just doesn't support her where she needs it. She also kept slipping through the leg holes. She couldn't reach her toys over the large rails so she didn't enjoy it either.

The innertubes, although I good idea, only work if you have a large enough tub. I am thinking about cutting the large blue one down to make it fit her tub. That might be a good option since she enjoys playing with her toys but doesn't have enough strength just yet to stay seated for a whole bath session. If the center didn't deflate on the yellow tube, I'd use that independently because it the perfect size for her to play with toys and float around in the water.

My absolute favorite is the the bath pillow. There's no slidding involved, it dries nicely, and it's the easiest one to store. Marissa can reach her toys and kick around which she loves to do. Marissa is now at the point that she can sit independently for a couple minutes at a time. The bath pillow gives her enough support and the appropriate positioning to play upright with her toys and play with the faucet.

If I can find a small enough inflatable then I'm going to try it. I think that by the time I find the perfect tub, Marissa will be doing all this independently. ;-) Honestly though, if I could do it over again...I'd toss Marissa in the kitchen sink until she was strong enough to sit independently then we would've transitioned to the regular tub. That's just our experience, I hope it helps someone to save some money when their doing their shopping for tub gear.

"New" Treadmill

So, I've been on this mission to acquire treadmill training for Marissa. I am getting fairly excited about everything that's happening. We received a donated treadmill last weekend and sadly, it doesn't work. But, thanks to another generous woman in town we have another donated treadmill. Elizabeth came to babysit, we drove an hour there, picked up the very dirty treadmill (it's been in the garage for over a year), and drove an hour back home. So, the latest and greatest treadmill is in our garage with the previous treadmill. (I'm going to freecycle the 1st one, maybe someone else can fix it.) After coming home, I cleaned the treadmill up and it looks almost good as new. It actually looks like the one my parents gave us while we were in Ohio. I guess it was meant to be. The big kicker though...it WORKS!






We get our treadmill training on Wednesday from Gerry at Pediatric Therapy Associates We are very excited to see all this progress in such a short amount of time.

For those interested, check out Treadmill Cleaning



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Friday, June 12, 2009

Parents as Teachers

In addition to early intervention, there's a program called Parents as Teachers that comes out weekly or biweekly depending on our schedule for the month. My lady is Brenda. She is absolutely fantastic. She comes to the house for a little less than an hour and gives me creative and age appropriate things to do with Marissa. She has done a couple ages and stages assessments, and unlike the doctors office, we actually talk about Marissa's results. She's given me knowledge about what Marissa should be working on at home.

They serve typical and special needs children from pregnancy to age 5 and it's absolutely free. They are located in all 50 states and it's very easy to enroll.

Children's Hospital researchers find Down syndrome gene starves tumor growth - The Boston Globe

Children's Hospital researchers find Down syndrome gene starves tumor growth - The Boston Globe

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Tuesday, June 2, 2009

Prayers answered

So our insurance company didn't work out. They already have a policy written for cases like ours. https://www.hnfs.net/bene/benefits/physical_therapy.htm
In my opinion, wouldn't it be cheaper for them to fund treatment such as this versus more invasive treatments later on down the road for kids that don't learn to walk correctly that will need surgery and such?

BUT, I posted our need on freecycle.org and 2 people messages me with treadmills for Marissa. One family has offered to deliver it to us! woot, woot!!! We will get in on Friday around 5. I will post pictures.

AND, I also put some information on a yahoo group I belong to. I found a local woman who did her doctoral research in the field of treadmill training. She has offered to come to our house and set up a program for Marissa...for FREE! woot, woot, woot!!!

So, God has done it again. He's answered our prayers and opened doors for baby Marissa. God is good.

Monday, June 1, 2009

A new mission

So my original post about the treadmill training was fairly hostile and I decided against posting it because it sounded like I was just a sour apple. Basically I was ranting and raving about how the system is failing these kids because professionals in various fields aren't sharing some of this very vital research/data with parents.

I have a work history of working with kids w/ autism and case management for kids who are at risk for behavioral problems, etc. Because of my history, I'd like to think I understand the system more than some and I'm aware of different therapies and methodologies, of which most parents are not.

So, it really urked me that I learned about treadmill training from other parents and not professionals in the field. It's so common for parents to hear what their kids can't do, and here's proven research of what they CAN do. I'm just upset that this and other useful information isn't more readily available. This shouldn't be a game of cat & mouse for parents. The information should be easy, accessible, and understandable. After all, the information is read by parents, but it's there for the kids.

For 2010 (2009 application process has ended), I am going to apply for a program called Partners in Policy Making Something needs to change. I just don't understand why we are made to hunt for it. I aim to change that. This, in a nutshell, is my new mission.

And for those interested, there are policy changing programs in most states so if this is your vision too, then look it up in your state.