Sunday, March 23, 2014

Why I Do It

Since Camden was born I have tried to advocate and spread awareness when I can. All of my friends with little ones with Ds try to do this. Many of them have said that friends and family members get annoyed or tired of all the "Ds posts" on Facebook or wherever. I have had a couple of people hint at that to me as well. I know my friends and family have accepted Camden right from the start. They love him and support him no matter what. They do not see him as different. He has been accepted and included in all things. They don't need to see all of my posts on social media because they get it and I love them for that. Not everyone out there feels this way though. There are still misconceptions, ignorance and hate. Camden will not be accepted by everyone. People may (probably will) make fun of him, call him names, not include him, and see him as different. That is like a knife to my heart. This is the problem. A problem that myself and many others are trying to change. This is why you may see lots of posts on Ds. This is why I ask you to sign and share things that are important to me such as the ABLE act. This is why I ask you to stop using the "r" word. It's not because I'm too sensitive, it's because it's offensive and hateful. I am passionate about advocating. That will never change. In fact, I want to do more (and I will) but I just haven't had the time. So, I will continue to promote awareness and to advocate every single day of my life until Camden has a voice and can do these things for himself. Simply put, this is why I do it.

Wednesday, March 19, 2014

A Day In The Life

For World Down Syndrome Day I'm participating in a blog hop that shows you what "a day in the life" is like.

I'm glad I didn't have to write this post a year ago because I'm certain it would look much different than this one. At the beginning of last year my day was filled with grief, worry, stress, doctors appointments and lots of feeding issues. We have all come a long way in just a short year. Yes our lives are still busy, but I don't know of anyone who has kids that will say that they aren't busy. I would say the majority of the time our day is probably pretty comparable to a day of anyone else. Every now and then will have a day filled with lots of appointments and that can make for a hectic day, but those days are now few and far between. If I'm going to be honest, my four year old keeps me much busier and is more of a challenge than Camden is right now. Our days are no longer centered around Camden and Down syndrome. Actually, we don't think about Down syndrome most days. Here is a little glimpse of what a typical day looks like in our house.

I usually wake up between 7 and 7:30 and that's only because Carter wakes up around then. Camden will sleep till 8 or 8:30 at times. Once Carter wakes up the first thing that is out of his mouth is "Mommy I'm hungry." "Mommy I need a drink." "Mommy turn on my show." Then Camden wakes up and gets a bottle and some breakfast. Then I will get everybody dressed for the day. Now if I'm feeling extra lazy and we're not leaving the house, some days nobody gets dressed and we're in our pajamas all day.

Usually around 10 some sort of therapist comes over to work with Camden and if not then I usually work with him. During this whole time Carter continues to say "mommy I'm hungry" or "I want something to eat" over and over and over again. He is like a bottomless pit. He never stops eating. He is going to eat us out of house and home. I'm not sure what he will do when he stats school this fall and won't be able to eat every second of the day. He will think he's starving to death! After we are done playing or doing therapy, I usually turn on "Baby Signing Time" for Camden so I can do a little bit of housework. Camden loves this part of the day because he loves his videos and he will just sit there quietly mesmerized by it.  Carter on the other hand is usually running through the house being destructive and doing what boys do. I think you can already tell who keeps this mom the busiest of the two. Then it's usually lunchtime and we all three sit down and eat lunch and then I put Camden down for a nap around 1:00. At this point I would love to just lay down and take a nap myself or maybe get caught up on some reading. That would be ideal. However, I have a four year old that does not believe in naps anymore and does not even believe in quiet time either. So, I usually spend this time doing something with Carter to try and keep him entertained.

Camden then wakes up around 4:00 (yep he takes a three hour nap which is awesome) and then I usually give them a snack. After snack time I may do some therapy exercises with Camden but let's be real, that doesn't happen very often. The weather has been so nice lately that we are usually outside playing in the afternoon.

Carter is still saying "I'm hungry" and eating whatever else is left to eat. Around 6 pm it's time to fix dinner, we eat, and then we are all in the living room together either playing or watching TV. Again, during this time Carter is still running around the house being destructive and saying "mommy I'm hungry." Bath time comes next and then we get ready for bed. We read a book, we say our prayers, and we go to sleep. That's it. Sounds like an average day, huh? It may sound boring even. Not every single day is like this of course. 

Some days we go shopping.

Somedays we have playdates and hang out with friends.

Some days we just go out and do whatever!

As you can see though, a day in our life is pretty typical. Now, I don't know that I will be able to say this a year from now or 10 years from now. What I can say today without a doubt is that we are beyond blessed and are happier than we could possibly imagine!


Wednesday, March 12, 2014

15 Months

I didn't realize it's been almost 3 weeks since I've written here. I always start to and then I get easily distracted and forget to come back to it. Camden is 15 months old now and I figured it's time for a little update on development.

It is no secret that gross motor is definitely not Camden's strength. He is in no hurry to get anywhere. He is very much the observer. He will study your face when you talk to him. He will watch big brother run around and just laugh. If something is out of his reach he will try a couple of times to get it and then just give up. His therapists ask me what we could use to motivate him to move and I always say if they figure it out to please let me know! He has always been on his own time table and when he's ready to do it, he will do it. It used to get me down to see him so behind his peers. He's even behind a lot of his peers with Ds. I have learned to have a lot of patience when it comes to this kind of stuff, and it doesn't bother me as much anymore. It makes his accomplishments that much sweeter. 

One thing we have been working on for several months is getting into a sitting position on his own. I used to have to put him into sitting if he wanted to sit, but not anymore! He can now push himself up to a sitting position from laying on his belly. I really thought it would be a while longer before he did this, but he surprised us one day by doing it all on his own randomly. We were so proud of him and he was extremely proud of himself too! I know most of you have seen this video, but here he is the first day he learned how to do it. It took a while at first, but now he's a pro!

So, now the problem is crawling. We have also been working on this for a couple of months. If he is on his stomach he automatically pops up into a sitting position now within a few seconds. I'm not sure how to keep him on his hands and knees to work on crawling. Before sitting, he would get on all fours and rock back and forth. He never really moved anywhere except backwards a few times. He doesn't attempt to army crawl, or do any type of crawling yet. He is definitely behind in this department. At least I don't have to chase him around!

We are also working on standing and pulling up to stand. I don't think we are anywhere close to this skill. He will stand with support but lately he only does it for brief periods and then wants to sit down. He used to be able to stand for longer periods and he actually loved to stand, so I'm not sure why he is not wanting to do it much anymore.

Occupational therapy started coming out about a month ago and they will see Camden twice a month. She has been working on fine motor skills with him because he's been struggling with this as well. His coordination has gotten a lot better the past couple of months and that has helped with fine motor. We've been working on picking up objects and placing them in a container. I know that probably seems like a simple skill, but it takes work and practice for Camden. He can do it most of the time, but he gets bored and frustrated with this game quickly. He also does not know how to use the pincer grasp (using thumb and index finger to pick up things) so we are working on that too. I need some tips if anyone has any on how to improve this skill. 

Speech has definitely improved since Camden got tubes put in. He babbles non stop at times. He's added more sounds to his vocabulary such as da da da, na na na, la la la, ba ba ba and a few more. Most of the time his noises are either yelling or jibberish, but it's nice to hear him vocalize. We don't have many real words yet. He says "ma ma" and "bu bu" (for Carter) and that's about it. I think he tries to say milk but it's really hard to tell. When he sees milk he always makes a "meh" sound, so I'm not sure. He is not signing yet either, but we are practicing every day. I know repetition is key, but sometimes I feel like it's not working. I'm sure he'll surprise me soon! One thing is for sure, he could watch "Baby Signing Time" for hours if you let him!

He's been doing really good with the straw cup, although he pretty much refuses to hold it on his own. If he grabs it he just flings it around. If I hold it he will go to town and drink up. We are down to two bottles a day and using a cup for the rest. He's not really into feeding himself either. I believe he can do it, but he would rather hold his mouth open and have you do it. He doesn't pick up finger foods to feed himself at all. He will throw them down or feed the dog. He will hold a baby cookie or cracker and eat that, but eventually throws that down too. I don't know if it's a behavioral issue or if he simply just wants us to feed him. Grrrr...this one frustrates me.

At his 15 month appointment he weighed in at 17 lbs 12 oz and was 28 3/4 inches long. He's still a little peanut, but he's on his own curve and no one is concerned about it, so I'm not either. I have no idea where he is on growth charts because I honestly don't care. It really doesn't matter right now. All in all he's doing great and we will keep doing what we are doing!

On World Down Syndrome Day (3/21) we will be celebrating the launch of our new DSDN website! Our goal is to provide information to families and a system of connection and support in a time that may seem incredibly difficult. Many of my rockin mom friends have been working very hard on this project and we are so excited to share it with everyone! This is a resource that could be incredibly helpful to others. Please go to the DSDN Facebook page and "like" our page and feel free to share! We are so close to 2,000 likes!