Thursday, September 30, 2010

Down Syndrome Awareness Month

I remember reading a few blogs last year that did this and I'm willing to give it a shot myself this year. I figure I will have more time this year than next with a new baby making her arrival in February! I am going to try REALLY hard to follow through on this and post a blog every day in October so please wish me luck!

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Anyone else interested in joining the pledge?

Wednesday, September 29, 2010

Happy 18 Month Birthday!

Is it just me or can anyone else not believe that Sweet Pea is a year and a half old today! It seems like just a month or two ago that she was a newborn blob and now she is into everything, crawling everywhere and just a roaming disaster girl! Oh how I love her!!!! I was going through old photos today and I was amazed at her transformation! There were even some photos that I wasn't sure it was her or not because she has changed so much.

These past couple months have been amazing with Sweet Pea. She really is learning something new every day. I know that this explosion of new skills will eventually plateau, but boy am I enjoying every day of it while it lasts! The joy that emanates from her when she does something new is beyond words and her Mommy and Daddy are so very proud of every single accomplishment because we know how hard she has been working to achieve them! We love you Sweet Pea!!!!!

Gross Motor Milestones:
Crawling: Sweet Pea's crawling has definitely taken off. It's far from textbook, but she no longer uses her army crawl to get anywhere, it's all hands and knees...or in her case, hands, knee and foot. She uses her right foot to push off and then slides her left leg/knee forward and under her bum. It's an interesting technique, but it works to get her from point A to B to C to D. I love that she decides to go from one room to any other room whenever she feels like it. It's such huge progress!!!! It was just 2 months ago that we had to coax her into moving rooms and we were the only motivation that would make her do it. Now, we can be in one room and she will leave us to go play in another!

Standing: This is another area that has seen huge gains.  She pulls to stand on just about anything that she can grab legs, couches, tables, etc.  She is trying to do it against walls, but isn't quite there yet.  We definitely need to work on the endurance with her, but I have a few ideas of things to try (thanks to Pat Winders Gross Motor Skills in Children with Down Syndrome book) and will keep you all posted.

Cruising: For those that don't know, cruising is basically walking while holding on to furniture.  We didn't really plan to start working on this milestone, Sweet Pea just started to do it.  She only does it a tiny bit, but since she is doing it without any coaxing from me, I'm beyond thrilled!  On Sunday she stood up at the couch, cruised the 12 inches to my legs and then cruised another 12 inches from my legs to the coffee table where the computer was.  It was slow going, but she did it!  One foot after the other and eventually she got to the computer keyboard which, unfortunately, I had to reward her and let her play with for a few seconds (this is a very dangerous thing as Sweet Pea finds keyboard combinations that we often don't know how to undo).  Since she started to do this on her own I guess I will add it to the list of skills to work on.

Climbing: We live in a one story home with just one 6 inch step separating a room.  Sweet Pea mastered that step all on her own.  We have tried stairs on a play structure at a local park and I think they will work okay, not great because they are hard on the knees, but it is better than nothing.  At home we used the couch to practice climbing and as you saw in this post, she has almost mastered it.  She still doesn't always go far enough forward before trying to sit, but we will continue to work on that with her.  She has also learned how to climb down!  She doesn't always do it, but a couple different times I can tell her to come down and she will go from sitting down to her belly and scoot backwards off the couch!  This little girl really picks things up quickly...when she wants to!

Walking: We have a stroller that we have weighed down and she is using that to take one or two steps.  I am not focusing on this until we get a little better at the standing and cruising, but thought I would include it so we have a starting point.

Language: I don't want to sound like a broken record, but language is another area that she has really been growing quickly in.  While her vocal expressive language isn't doing a lot (only new sound that I can think of is "va"), her signing is making some good strides.  Just yesterday she started to do "more" with her fingers instead of just clapping.  Sometimes it takes a little prompting, but it is so cute to see her do it because she looks at her hands and you can see the wheels turning in her head as she does it.  And the smile that she gives when she does it and we are so proud of her...well that smile just melts my heart!  We are also working on getting her "dog" sign to be down on her thigh instead of on her belly.  She is getting better, but I think it will take a little longer as the practice sessions are much shorter for dog.  The signs that she knows now are: more, all done, eat, please, thank you, bye, dog, book, and she is starting to do baby, up and open.  She can identify her head and can get her mouth about half the time.  In terms of receptive language, she continues to amaze us by what she understands.  It's always amazing to see her comprehend something that we say and actually do what we say.  Doesn't always happen since she can be stubborn, but that is okay.

Eating:  This continues to be a challenging area for us as it seems to be for many parents.  Sweet Pea REALLY wants to be eating what we are eating, but her chewing and swallowing aren't up to par yet.  We have found that ground meat is definitely the easiest for her to manage so we can get enough quantity into her before she is too tired or bored.  Noodles, breads, pancakes, waffles, chips...basically anything carbohydrate related...are huge successes.  Soy yogurt is a fairly consistent hit.  Bananas are hit or miss and we need to find more fruit that she will eat.  Baby food is rarely successful for us, but daycare has pretty good luck so we can at least sneak in her fruit and veggies at daycare.  We have recently brought back in cream cheese, pudding and cottage cheese in small quantities and those are working well so far.  The biggest issue that we are afraid of is an increase in her reflux. 

Weight: 22lbs 2.5oz

Height: 30.5 inches

Therapy:  We are certainly in a transitional period in regards to her therapies.  She started the center based therapy classes last week and will be attending them Monday, Wednesday and Friday mornings.  Speech will remain on Tuesday and Thursday afternoons as we don't have any choices for that.  We have cut PT and OT to once a week for the next couple of weeks and for right now, PT will be Tuesday afternoon and OT will be Thursday morning.  We aren't ready to make a decision on asking for her services to be reduced to once a week for both PT and OT since we don't know how the center based therapy is going to work out yet.

Toys:  The seahorse is still her favorite, but she also loves a book that has buttons that play sounds.  It's a Thomas the Tank Engine book, but I think I will need to get a few more of these as she absolutely loves it!

Sweat Pea-isms:  Her latest adorable trait is her little cackle that she does instead of a full laugh.  She doesn't always do it, but it's becoming more common.  I do love her regular laugh though so I hope that it doesn't disappear, but the cackle is pretty funny.

Sleep:  Knock on wood...this area has improved again.  She has started to sleep through the night again and will often not even wake up for her twilight feedings.  Daddy and Mommy are very, VERY, happy about this change and we hope that it continues!  Mommy will take Sweet Pea for a sleep study in a couple of weeks to try to get an explanation for how restless she is when she sleeps.  Let's hope it isn't anything to worry about.

Overall Health: She has had a cold or allergies or something since Labor Day weekend.  She wakes up extremely congested and does not clear up completely throughout the day.  She has even been coughing up phlegm (TMI...sorry) the past few days which is just lovely.  Hopefully she will get over this soon.  Daddy thinks it is from our mountain trip over Labor Day, but I think it is just coincidence and refuse to blame the gorgeous mountains for these many weeks of aggravation. The heat wave that we had this week (105 when the average temperature for this time of year is 76) gave Sweet Pea heat rash, but it is dissipating as the temperature drops. She isn't letting anything slow her down though!

Wordless Wednesday: Fun at the Park

Sunday, September 26, 2010

Weekend Fun: Music and Water

In Sweet Pea's world, a weekend that involves both music and water is pretty much a great weekend!

Saturday started off with Auntie R giving Sweet Pea a music lesson.  This girl has skills, but she also has no concept of playing gently.  Here is a fun video:

With the heat wave that we are having (it's a whole 81 degrees here so we are baking (yes, we know we are spoiled)) we decided that it was the perfect time to break out the water table again.  I'm not sure if Sweet Pea enjoyed the water in the table more or if she preferred when it was all over Daddy, but either way, she had a great time!  Here is video proof:

And a few photos to boot:

Her clothes were soaked and making her cold so we stripped her down to her diaper and let the fun continue:

Watch me dump this cold water right on Daddy's lap without him realizing that I'm doing it on purpose:

Friday, September 24, 2010

Center Based Therapy Started

Warning:  Extremely long post...again!

We received the approval for Sweet Pea to start center based therapy on Tuesday and so she went to her very first class on Wednesday! She will be going Monday, Wednesday, Friday and her first two days went great! Wednesday she was fussy all morning so I was more than a little nervous about how it would go. We left home about 8:20, but not before Mommy attempted to get a first day of school photo of the little girl.  She wasn't cooperating, but these didn't turn out too bad considering her mood.


We arrived around 8:40am, but she had fallen asleep in the car. I tried to get her out without waking her up, but managed to hit her head on the car trying to get her out so that was an utter failure. Poor girl not only got woken up, but rudely! She calmed down very quickly and so we headed in and she got right to playing. She played with blocks and a musical instrument and everyone was coming over to introduce themselves and meet Sweet Pea.

After class officially started at 9am we went into the OT focused therapy group and played in the room with swings for the first 20 minutes.  Sweet Pea was crawling around a bit and watching the other two kids in our group.  She then got adventurous and crawled through a little tunnel they had created:

After that we attempted to put stickers onto the sheets of paper on the wall.  Sweet Pea loved the stickers, but when she would put one on the wall, she would then peel it back off.  That was working her fine motor skills so that was fine, but it was pretty funny.  Then she decided that ripping the big pieces of paper on the wall was more fun so we ended that game after a few futile attempts at getting her to behave.

The second part of the hour long focused therapy group time was spent in the speech room where we worked on putting little animals in and out of bags.  Then we moved onto playing with pegs in the pegboards.  A couple of her other therapists have this toy and so it wasn't new to Sweet Pea, but she had never before (that I'm aware of at least) stuck a peg into the hole without assistance.  She did on Wednesday though!!!!  Only one, but I was very proud of her and she was pretty darn proud too.  I didn't capture it on film, but here are some of her playing with the toy anyway:

After focused therapy group time ended we had a nice little snack where Sweet Pea enjoyed some vanilla pudding and goldfish crackers.  She is supposed to use a paper towel as her plate, but she insists that it is to be tossed onto the floor and the crackers are to be eaten off the table directly.  That isn't a battle that I'm going to fight, but the teachers said that most kids do that so maybe eventually she will learn since the other kids all seem to.

When snack time ended we moved to circle time and sang a few songs and then split into the first of four 15 minute centers.  Sweet Pea was directed to the ball pit first and that was a good choice since she loves the ball pit!

That is the end of the photos because the speech therapist pulled me aside to get a detailed history on Sweet Pea.  I spent the next hour with her going through what we do for oral motor and speech and everything else even slightly related.  Sweet Pea lasted about halfway through the four 15 minute sessions and then something set her off and it was touch and go from that point on.  I let the therapists/teachers/aides try to calm her since they will need to be able to do it while I'm not here.  It is really hard to sit and listen to your little girl cry, but I knew that she wasn't in pain or anything, she was just tired.  I collected her about 11am and tried to feed her some milk as it seemed she might crash out on one of the gals and I really wanted to get some food in her before she took what I knew was going to be a long nap.  She rallied after the milk and was able to join the group for closing circle time and was trying to climb and stand all over the place so she had definitely rallied.  When class ended we gathered our things and left and not 2 minutes into the drive home, Sweet Pea had crashed out and remained that way for 90 minutes (don't worry, I transferred her into her crib when we got home).  It was a very successful first day and I couldn't be more proud of Sweet Pea or happy with our decision to push to get approval for center based therapy.  Some of our therapists put up some minor roadblocks during the approval process, but we got around them and I am so thankful that we have a great service coordinator (not everyone is as lucky in that department as we are) who helped fight for us.

Grandma took Sweet Pea today (thank you grandma...again!) and she had a funny story to share.  Apparently the kids are supposed to come with shoes and socks and in the last portion of the class before closing circle time the therapists help teach the kids how to put them on.  When they asked Grandma if Sweet Pea had shoes, she said no.  When they thought that Sweet Pea just didn't have shoes with her today, Grandma had to let them know that no, it wasn't just today.  This poor neglected child who has a severe addiction to people's shoes, doesn't actually own any shoes that fit her!  Her feet are too chunky for the few pairs that might fit in length.  Now that I have been shamed, I guess I need to take her shoe shopping this weekend so she at least has A pair of shoes!

Today they did a couple of evaluations to gauge where Sweet Pea was developmentally in OT and speech.  In the OT evaluation session they watched how she crawls and plays with toys like the pop up ones that Sweet Pea adores.  Then they moved to a table and watched how she plays with small toys, putting objects into containers and something with pieces of playdough (need to get details from Grandma on that one since Sweet Pea normally just puts the playdough in her mouth).  Sweet Pea performed really well during the evaluation and the OT commented on how she uses both her right and left hands when playing with toys and that she even does well crossing midline when she picks up pieces and puts them into something.  This is great news because many kids (even typical kids) can have issues with crossing midline sometimes.  (Here is a quick article that speaks to why crossing midline is important if you are curious.)

During her speech evaluation today (different therapist than is there on Wednesdays) they did some songs, bubbles with careful enunciation of "bubble" and "pop" since /b/ and /p/ sounds clearly show what the mouth is doing, they worked to get her sign for "more" to be more accurate instead of just clapping and during that worked on the /m/ sound, did a little work on learning "I want" and picking between two objects and ended with some work on the sign for "open".  I am beyond thrilled that they are working on actual speech sounds with her since our current speech therapy that we get via insurance doesn't do hardly any speech sounds, they focus on the feeding...which is important, but I want Sweet Pea getting both so this is wonderful.

Apparently they do a bike "parade" the last week of the month out in the parking lot and since Sweet Pea didn't have shoes, nor can she ride a tricycle of any sort yet, she got a ride in the wagon.  This will be yet another area that will be fun to watch how she progresses!

Looks like she made a friend today!

One final story from today's session...when the parents drop the child off in the morning they bring a toy from home with them and put it in the "sharing box".  At the end of class, right before they wrap up circle time, the teacher picks out one toy at a time and the kids go up and get their toy.  I thought a small sensory ball would be a good idea because it was small and didn't make noise.  Well, yet again I was wrong.  Turns out that a ball is a bad toy to bring in because Sweet Pea knows that you are supposed to throw balls.  That meant that she would throw the ball into the middle of the circle.  I'm sure Sweet Pea was trying to go get the ball after she threw it too!  I think the staff got a kick out of it today, but I don't think they would appreciate it on a regular basis since the kids are supposed to stay in their seat before/after they get their toy back.  Live and learn.

That was Sweet Pea's first two days at center based therapy.  I am so happy she is going and I know that this is going to be wonderful for her!

Tuesday, September 21, 2010

Aquarium Trip

My good friend from high school and her two adorable boys joined Sweet Pea and I at the aquarium yesterday morning.  It was great to catch up with her and to see her boys again.  Her youngest is just a few days older than Sweet Pea, but you can't tell that by looking at them!

This photo is an attempt to show more of the tanks, but without a flash it is hard to capture a quick moving little man!

Sweet Pea enjoyed the fish!

Is she worried he is going to eat her feet?

I don't think she let go of her feet the entire day!

This is the only group shot I captured unfortunately.  Can you tell those two are brothers with their hand placements?  I love it!

Thank you guys for a great trip! I can't wait until we do it again!

Tips for Dealing with Siblings of a Child with Special Needs

Bethany from Life with Bubba, Chicky and Nika posted this today and I just had to share it.  Now that I'm expecting our second child, my head is often filled with thoughts of how and when is it appropriate to talk about Down syndrome.  I hope to speak openly about it and not keep it out of common conversations so that there isn't stigma about it and so that this new baby girl can eventually ask any questions that she has about it without feeling like she is bringing up a taboo subject.  I know that every family has to make a decision for themselves as to how to deal with this topic, but I'm glad that I keep finding articles that give me confidence in how I hope to approach it.

Bethany just came across this list of great tips to remember when dealing with siblings of a child with special needs, as written by Sue Levine and Dr. Skotko ...

1. Be open and honest, explaining Down syndrome as early as
possible. Encourage other children to ask questions; answer them on
their level as honestly as possible. But don’t wait for siblings to ask
questions. Bring up the topic routinely in conversation.

2. Allow brothers and sisters to express negative feelings.
Acknowledge the fact that sometimes it is hard to be a brother or sister to
someone with a disability And don’t expect siblings to be saints.

3. Recognize the difficult moments that brothers and sisters may be
experiencing. As brothers and sisters grow up, they often begin to
realize that not everyone in society shares their family’s beliefs and
values. Recognize situations that may be potentially embarrassing or
stressful and do what you can to help minimize the difficulty.

4. Limit caregiving responsibilities. Children need to be children. Allow
them to be brothers and sisters, rather than becoming an extra parent.
Your children with disabilities also benefit from having siblings rather than
a family full of parents.

5. Recognize the individuality and uniqueness of each child in the
family. Be sure to point out what makes your children special; they want
to know that you notice them, too. Celebrate their accomplishments and
schedule special time with each of your children.

6. Be fair. Listen to both sides of the story and be certain to make sure
each child has responsibilities appropriate to their level of ability

7. Take advantage of supports for siblings. Both local and national
groups have opportunities for siblings to meet each other. Such
experiences are often validating.

8. Encourage parents to access support for themselves. When parents
seek out support systems for themselves, they tend to be better equipped
for the journey.

Sunday, September 19, 2010

2 for 1: Climbing onto Couch and Soccer

Climbing onto Couch:  I started teaching Sweet Pea how to climb onto the couch on Thursday and it was going pretty well.  We took the cushion off because otherwise it was much too tall for her and then I had to really help her by lifting her leg up and then providing a place for her to push off on.  I was pleased with the progress we had made in the few minutes we worked on it, but figured we were a long way from her being able to do it on her own.  When I brought her home from daycare on Friday I tried again.  This time she basically did it on her own after the first try!  Here is a video:

Don't worry, she was okay, just startled.  Obviously, we still need to work on her learning to move further onto the couch before trying to sit, but this is a good start.  The other piece that we need to work on is her getting down.  If I tell her to come down she turns towards the edge and attempts to go off head first.  I turn her around and place her on her belly and she protests for a quick second and then wiggles backwards until her toes touch the ground.  She definitely has the idea of how to get down, she would just prefer to go head first like the maniac that she is.  Not surprising after all the table and bed and swimming pool diving that she does.  Falls are fun for her!  It's going to be a long couple of years for us!

Soccer: No, Sweet Pea isn't playing soccer...yet.  However, she did go watch her oldest cousin play on Saturday.  Cousin O even scored a goal!!!!  We set out a quilt for her to play on and she was happy crawling around on it and getting to the edges to explore the grass, but then would go back into the center.  Eventually her youngest cousin came over and she decided that if he was sitting on the grass that she could too!  So they played...or maybe it would be better said as this...she took his ball. Cousin C was very nice about it though:

Then Sweet Pea decided that his shoes were enthralling.  Sweet Pea adores shoes, anyone's shoes!  They are one of her favorite toys.  Poor girl doesn't have any of her own so she thinks she really is neglected.  After trying to steal his shoes they decided to play ball together.  I love that she will stand up on her legs to reach for the ball!  Cousin C wants to know if she is ever going to roll it back to him though.  I think he is used to a faster pace game than Sweet pea is.

Friday, September 17, 2010

Great Post: Talking about Down Syndrome

Here is a great post I happened upon yesterday that really resonated with me.  Its all about talking about Down syndrome.  We just had a conversation on this topic last night at our local Down syndrome support group and I wish I had read this before. We all want our children to be accepted and we believe that they are "More Alike Than Different", but they still are different.  I couldn't agree with what Jenny says more!

Thursday, September 16, 2010

Juppy Baby Walker - Product Review

I don't know how many times I've heard people tell me that Sweet Pea (my daughter with Down syndrome) shouldn't use a typical baby walker (you know the kind that they sit in and have wheels) because it teaches them improper walking form, safety issues, etc. If I hear it again I really might scream! So, when I saw this product, the Juppy Baby Walker The Juppy Baby Walker (Pink-Full Lining), I had to get my hands on it and see how it worked. The company was kind enough to send me one to review for you all here!

What is the Juppy Baby Walker?
The Juppy Baby Walker is a non traditional, parent-assisted baby walker used to teach babies how to walk sooner while minimizing dangerous falls. The baby is placed in the seat of the Juppy while mom or dad simply holds on to the straps, while standing upright, to give support to the baby. Typically parents tend to hold their babies by the hands or under the arms to teach them to walk. This causes stress and strain on the lower back of the parent and could cause injuries to the child's arms or joints. The Juppy Baby Walker reduces your pain and eliminates possible injury to your child.

Since children with Down syndrome tend to have looser joints it is especially important to guard against any unintended injuries.  Additionally, by not having the child hold onto your hands you are allowing them to use their arms to help balance like they will be when they are walking without your assistance.  This will not only solve the issue of the child becoming dependent on the parents help (where they refuse to try to stand without holding on to you) but will also allow you to slowly lessen the support that they are receiving without them even noticing!

The package is very cute and makes carrying it around very simple and fashionable.  I can see this becoming a permanent addition in my diaper bag so that I have it when I'm at the park, play dates, doctors offices, anywhere that she is wanting to try to walk, but isn't ready yet.  Definitely can't take a typical baby walker with you!  The product comes in either blue or pink

Sweet Pea is just starting to enjoy standing for extended periods of time (1-2 minutes) at the age of 17 months.  I am not expecting her to be trying to walk for a few months still, but I think that this product will also help her learn to stand without needing me to be hunched over supporting her.  I'm pregnant and not looking forward to trying to hold her upright as my belly grows.  The Juppy Baby Walker might just solve that issue!  As you can see in the photos of Sweet Pea below, she is actively watching her feet and figuring out what to do and she can't do that in typical walkers.  Her arms are also free to move as she wants to help her learn to balance on her own without holding onto someone as a crutch.

I'm very excited to have my own Juppy Baby walker as it has already become a staple in my diaper bag.  It's very small and folds up neatly into a little silk bag that it ships with.  The one thing I would change about it would be to have the Juppy be able to fold into an attached pocket so that I didn't need to keep track of the bag, but that is a minor inconvenience for the ease of travel and use with this product.  Here is a picture of it inside the bag...after my using it so you know that it really does go back into the bag:

Here is a video that Juppy has put together showing the Baby Walker in use.  I highly recommend this to anyone who expects to have to work a lot with their child in order to get them ready to walk independently.  I know this is going to save me!

If you want a Juppy Baby Walker for yourself or for a friend you can purchase it through Amazon and if you do it from the link below a portion of the profits that this site makes will be donated to Down Syndrome Research and Treatment Foundation (DSRTF).