Pretend Play!

Over the past couple months, we have been trying to get Jacob used to the idea of pretend play. He has always preferred "concrete" forms of play that are specific activities with little to no imagination needed. This has been one of my biggest concerns with him since it is a behavior that is typical in children with Autism.

What started out as complete meltdowns in trying to get him to do something other than puzzles, books and blocks gradually turned into a distant interest. He would sit and watch as Austin and I, or whoever else was there, would play with dolls, pretend food, or cars. This was exciting on its own, because before he wanted nothing to do with it! Even if he was looking at us like we were crazy, at least he was watching.

Over the last several years, my cousin Katey has been a wonderful friend and teacher for Jacob. She is passionate about helping him and has spent the last two summers home from college as his habilitation provider. She worked with him a lot on pretend play, and I truly feel that she has helped him progress tremendously. In the last month, Jacob has started to ask to play with his "house" and has even done some pretend food play on his own. Everything he acts out has been something that we have shown him to do, but it's a start!

I'm writing about this today because I feel like we have made a leap in progress again. He asked to play with his house again and I brought it down for us while Madison napped. This is a Playmobil Summer House, which is great for him because there are so many pieces and he can put it all together, but not so great for Madi, who likes to put everything in her mouth. So we only get it out while she's napping or out with daddy.

Jacob got the people out and labeled them all for me, "Boy, dirl (girl), boy, dirl." Then he set up the table and beds as he usually does. He likes to set up the table but doesn't bother with any of the house's many other pieces unless we ask him to. I asked him if he thought the boy should take a bath and he told me, "Lay down!" This is a new phrase for him and he's been saying it a lot, so that's good. Then, he put all the dolls in their beds and said, "Boy, dirl, nigh nigh!"

Jacob playing with his "House"

Later in the day, long after we had put away the house, Jacob kept saying, "Bed, bed, bed!" to me. I wasn't paying him much attention because I was brushing my hair, but he kept saying it. I finally looked around and was about ready to ask him if he wanted to take a nap. What I saw when I turned around was that he had taken a pillow and put it in a laundry basket, which he was laying down in. I was so happy to see that! I asked him if he was pretending to be in a bed and with a big goofy smile on his face he said, "Yeah!"

I know that seems insignificant compared to other children his age that are talking up a storm and coming up with wacky stories all over the place, but for us this is a huge deal! He is self-initiating in pretend play, which hasn't happened hardly at all. I was proud of him for just repeating what we did when we played with the house, but I have never ever pretended to make a bed with a laundry basket. That was completely his idea. It's a big step developmentally for him, and I am a proud momma!

Why Can't I Be a Super Hero?

I am having one of "those" days. The type where I constantly worry about my children and find 12390948320.8 ways to blame myself for everything that has already or might possibly go wrong. I spent a good portion of today making myself feel inadequate as a parent.

Most of these feelings, as usual, have stemmed from something concerning Jacob's developmental delays. Sure, I put on a good face and talk the talk with all his doctors, therapist, and anyone else who might ask- but the truth is I am not okay. I tear myself to pieces on a daily basis pouring over what I might have done wrong and obsess over what I might be doing wrong in this very moment.

Looking at it objectively, I know that Jacob has come a very long way and has made some huge progress. I am more proud of him than words can say. He is my little boy and I love him with all of my heart and more. I am doing every thing I can think of to help him catch up. Unfortunately, that doesn't stop the feeling that I should be doing more. That doesn't stop the guilt I feel daily. I have had many people tell me that these things just happen and I didn't do anything wrong, but on days like this it is hard for me to believe them. Did I eat or drink something I shouldn't have while pregnant? Did I talk to him enough as a baby? Why didn't I notice anything sooner? I try so hard to be the best mommy in the world, but I feel like I am coming up short.

My heart hurts when someone points out how far behind he is. My heart hurts when I see kids much younger than him doing and saying way more than he has. My heart hurts because I don't know why he has to have a more difficult time. My heart hurts because I can't fix it for him.

I know that there are other parents out there that feel this way too. In fact, I'm sure that every parent has had  similar thoughts at one time or another. I also know that many children have it far worse than Jacob, and I do count my blessings for that. Normally, I can battle these feelings and work on being more optimistic. I strive to be a positive person every day, but I can't deny that these thoughts occur in my head. I know that I have to be the one to change these thoughts. No one else can do it for me. I'm still working on that. Hopefully one day I will have the answer for myself, but that day is not today.

My heart goes out to parents everywhere that are doing the best they can. I hope you know you are doing an awesome job. If you aren't so sure, please take the time to remind yourself that it is true. As much as we want to be super heroes for our children, we can only be what we are. Lucky for us, what we are is an amazing gift and we have a lot of power to make a better world for our children. Now I just need to remember to tell myself that once in a while.

Masquerade! Paper Faces on Parade!

I am having so much fun with this wedding planning. Sure, it's a lot of stress and a lot of money, but it's going to be worth it. Not to mention, I feel like it's one on-going DIY craft, and I am having a blast!

I've been scrambling with the "kinda-short-but-reasonable" timeline I've given myself, and have managed to peg down rentals, a photographer, and I have started to sort out the DJ. We are going to see someone this Friday night who is interested, and apparently loves themed parties. While I'm trying to keep organized, I will admit that sometimes I get frazzled with feeling like there is SO MUCH to do.

When that happens, I make masks! Since we are having a masquerade, I am having masks be our favors. (Let's face it, I don't think everyone is going to bring one to match their outfit, although I would be over the moon if that happened). It's a huge project, especially since every one of them is unique, but it's fun and it's keeping my hands/mind busy when I start to feel frantic.

After the kids are in bed each night, I can usually be found at the kitchen table, glue gun in hand and surrounded by fabric, glitter, and feathers of all sorts. Here are some pictures I want to share-


28 down... a lot more to go! Hopefully I will get them done in time. I'm thinking I might need to have a mask making/movie party.

And this one is my favorite so far- I call it "The Owl."

Thanks for looking!

Summer Update

It's been a few weeks since I've posted and a lot has happened! The family trip to Disneyland went as well as expected. Jacob was crazy with excitement when he met Mickey Mouse, and Madison especially loved the dancing and singing that happens in the "It's a Small World" ride.

The trip was excellent, and my children behaved well, although they were exhausted. I will say that Madi had enough of the stroller before our two days in the park were up, but she was a trooper. It is definitely a different experience, enjoying the park as a parent. I have always been a fan of Disneyland, and have been to the park with my parents as a child, and also as an adult. Last time I went, it was just Austin and me, which was great because we were able to do whatever we wanted without worrying about the agendas of various group members. I have always been a thrill seeker and lover of the "big kid rides," but this trip I found myself getting excited about the little stuff and the shows. I was more interested in seeing how my children reacted to their surroundings than having fun myself. Needless to say, they did not disappoint and I had a blast!

I downloaded the Disneyland app on our iPad before the trip to help give Jacob an idea of what we were going to do. It was a great tool for helping to prepare him and I'm so glad I did. (The app was free, for anyone who is interested). He still looks at it almost every day, and he calls out certain places he remembered and liked. This has been a great activity for recalling memories with Jacob.

Another great thing from our trip: Since we have been home, Winnie the Pooh has been loved in our house as much as The Rodent (Mickey Mouse), and for that I am thankful.
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I have some other exciting news! In the past month, Austin and I have finally set a date for our wedding (you know, the one that was supposed to happen and then Madison happened instead. ;)

We will be married this October in a Masquerade Ball wedding inspired by the Phantom of the Opera. I am so excited- this theme encompasses the geekyness in my soul. It's going to be a small backyard wedding, and I'm attempting to DIY for almost everything, so it has kept me very busy! (Which in turn has kept me from posting).

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The kids have been busy too. Madison is seven months old now, and she is crawling all over and cruising the furniture. She is an incredibly busy lady who is difficult to direct. She's also started getting some solids,  and she is OBSESSED! Every time she sees someone eating something she has to crawl over and open her mouth as wide as she can. It's cute and very funny.

I am slightly concerned because she doesn't seem too interested in making a lot of closed mouth/syllable type sounds. She babbles all the time, but it's mostly open mouth sounds. I'm trying not to be too paranoid, but given Jacob's delays, it's proving difficult.

Jacob is doing well. He's started spontaneously using some sentences to make requests, and his vocabulary is growing every day. Unfortunately, he's also adopted a nasty temper, which has been very trying on my patience. Any time he hears something he doesn't want to, such as the word "no" or a redirection when he is misbehaving, he puts his hands over his ears and screeches a most horrible banshee screech. I'm still trying to figure out what to do with that one. It's really hard to reason with a child who can't hear what you are saying because he screams every time you try to talk to him. I'll let you know if I crack this code in the near future. Any suggestions are always appreciated.

I finally got Jacob in to see the developmental pediatrician that we have been waiting to see for some time now, so we are on the road to finally determining a diagnosis for him. Hearing problems were ruled out by the Audiologist, and he no longer has tubes in his ears. I'm pleased to hear that he can hear fine, but I can't help but mourning the news a bit because it means his delays are developmental and there is another cause somewhere. Some people might judge me for that, but it's just how I feel. It's hard for me to cope with the knowledge that my baby might struggle socially and with communication for his whole life.

Anyway, we are going to do some bloodwork to rule out genetic disorders like Fragile X, and if nothing is found he will go through extensive testing for Autism.

No matter what, I love the little guy and putting a label on him is not going to change that. The only reason I want answers is so we can find out if there is anything else I can be doing to help him.

Thanks for reading this update! Hopefully it won't be too long before I post again.

Special According to Who?

There have been many aspects of my life that I think have helped me to be a more open-minded person. The influence of having an older brother with Down syndrome is probably the most significant of these. From a very young age, I was taught that diversity is to be embraced and loved, not feared. I was taught that differences should be celebrated instead of compared. Above all else, I learned that people often reject what they do not understand. Many of these were very hurtful lessons to learn and they usually stemmed from my lack of understanding regarding why someone looked at/treated/spoke about my brother in a certain way.

I still remember the day I noticed Danny was different than everyone else and I remember asking my mom about it. In that moment, I think she said the best thing she could have possibly said. She explained to me that he had some challenges that other people don't have to deal with, but that he had some gifts that were special as well. She told me this was the same for everyone, although it's not usually something you can tell just by looking. I truly believe that was a life changing moment for me.

My whole childhood and into our adult lives, people (including my own parents) have commented on the way I treat my brother. The most common report I received when were were little was that we behaved like regular siblings. More often than not, this was said with surprise. Yes, it came as a surprise to people that I fought with him, played with him, and otherwise ignored his disability all together. Some people even scolded me for it, while others commended me. To this day, this still baffles me.

As a child, I was definitely less sensitive to the reality that Danny needs more patience than I was willing to give- but that's a common way for children to treat each other. As an adult, I still treat him the way I do everyone else, although I like to think I'm a little more tuned in to the patience he needs with understanding certain concepts, as well as accommodations for medical needs. People are still surprised by this, which continues to surprise me even more.

 More than once, my treatment of my brother has been interpreted as "mean" because I failed to give him special attention in a situation where he did not need it. For example, at one of my son's birthday parties, I was asked why I didn't get a gift bag for him. My answer was simple, the gift bags were for the children, and he is an adult. If I singled out any other adult to give a gift bag, would that not be viewed as condescending to that person? I absolutely think so.

This has made me very passionate about the idea of equality. I think a lot of people misinterpret equality as special treatment for people who are disadvantaged. That is not equality at all! Equality, by definition, means the state or quality of being equal; correspondence inquantity, degree, value, rank, or ability (Dictionary.com). Obviously, we need to take into consideration that ALL humans, by nature, are different. Therefore, we are all only treated equally to some extent. There are varying levels, especially when an individual's abilities are taken into account. 

I think people who try too hard to be empathetic, or accepting, end up doing the exact opposite by providing too much special attention. In my eyes, this is condescending. Ostracizing or glorifying someone, you are providing the same result by making him or her stand out in one direction or the other.


Do I love my brother and want the best for him? Absolutely. Do I think my brother is special? You bet I do! But I find special qualities in all of my loved ones, and I hardly think his Down syndrome defines him. He is so much more than a person with a disability, and people who are too caught up in trying so hard to "be fair" or "accept" him are not seeing him for himself. 


I'm not going to like it if you tell me Danny is "cute" when he is being stubborn. He's 26 years old. If you are going to use the word "cute" to describe him, you better be telling me that you think he is attractive; not talking about him as if he were a toddler. 


Danny is stubborn as a mule, and frustratingly so at times. He is also an artist, a music and movie buff, a ladies man, and he has a wonderful sense of humor. He is loyal to his family, and can be sensitive as well. Bottom line, he is a person. I will continue to treat him as fairly as possible, and I hope others can do the same- for everyone. I will be the first to admit that I am not perfect, but I have good intentions. Humans are judgmental creatures. Everyone deals with it personally, and maybe we can do each other a favor by trying to find that balance between doing too little and too much to help each other out. 

Over-Sharing on Facebook

I see a lot of negativity in the social media world aimed at people who share pictures and stories about their children on a regular basis. Although it has not ever been directed at me personally to my knowledge, it sometimes makes me feel self-conscious about the updates I share. Then I take a step back and remind myself that I have no reason to feel that way.

I have an eclectic group of friends on Facebook that have many different interests, some of which I couldn't care less about (Such as sports or who they are currently fighting via text message). I do, however, care about my friends and want to hear about their lives. That's why I have subscribed to their updates. I think it is only right to assume that people feel the same about me if they have chosen to be "friends" with me.

This article, which I read this evening, made a very good point. Everyone tends to over-share, whether it is about their children or not. I have a couple different thoughts about this. For one, I think that people are less inhibited by the face to face social barriers that stop us from saying too much in person. You can't see anyone's reaction, so there is less embarrassment if the reaction is negative. But mostly, I think people are craving reassurance, connection, and validation from each other.

However, I do not think that sharing pictures of your children on a daily basis, or letting me know how you feel about the football game you are watching is too much information. There is a limit, of course- I'm not interested in seeing graphic pictures of what your son ate after it came out the other end, nor do I want an every-20-second play by play of the game I have no interest in. Am I going to "un-friend" you because of it? No, but I'll probably hide that particular post. Honestly, the only thing that really gets to me on Facebook is negativity. Too many "The World Hates Me" posts will probably get you axed from my newsfeed.

I have three major reasons why I share regular updates about my children on Facebook. My number one reason is that I am proud of my children! I love them, and I want to share their accomplishments with my friends. Also important to me is the fact that I have many friends and family members who live far away and are not able to see us as much as they want to. These people enjoy my updates and it is a great way to share despite the distance. My third reason is simply the fact that I am home with my children all day, and if I didn't talk about them, I'd have nothing to talk about!

I'm not going to apologize for my updates and pictures of my children, nor will I discontinue posting them if someone decides to get their panties in a wad over it. I genuinely like seeing what my friends are up to via Facebook, and I assume they enjoy seeing what we're doing. If that's not the case, then I imagine it's a lot easier to click the "Hide Updates" button than it is to complain about it.

My Housekeeping Schedule

In hopes that I will pull myself out of the rut I've fallen into this past week, and continue with my upkeep on the house, I've decided to jot down my notes on cleaning here.

This is the schedule I've been following (okay, trying to follow) since we moved into our current apartment. It's a 2 bedroom, 1 bath-which is very manageable compared to our 3 bed 3 bath townhouse that I couldn't ever come close to keeping clean. Don't bother asking why we needed three bathrooms. I don't know know what made me do it, and I'll tell you that I am so much happier with only one toilet to clean!

Okay, so here it is:

Daily Items:
1-2 loads of laundry, washed and put away

Tidy up- this means toys, games, books, and pretty much anything else that gets used throughout the day. I'm doing my best to put everything away as soon as it is no longer needed, with the exception of toys. I'll leave them out a bit because I don't want the kids to feel like they aren't allowed to play. Playing is messy, that's all there is to it, so I clean up toys after lunch and right before bed.

Dishes- Unload the dishwasher first thing in the morning, load throughout the day and run at night (provided it is full enough to run)

Clean up after meals-wiping counters, rinsing dishes, etc.

Monday:
Kitchen- This is the day I mop, clean the fridge, microwave, and toaster oven. In short, I get all the pieces that get missed during the quick clean up throughout the week.

Tuesday:
Bathroom- I wipe the surfaces with sanitation wipes daily, but this is the day I clean the inside of the toilet bowl, scrub the bath and shower, and sweep/mop the floor. I also check for any supplies we are running low on and add them to the shopping list.

Wednesday:
Master Bedroom- The first thing I do here is de-clutter (by that I mean I remove all the toys and nonsense that shouldn't be in there at all). I vacuum, dust, and wash the bedding.

Thursday:
Kids' Room: Same deal as my bedroom, except it involves more toy maintenance and restocking of diapers/wipes, etc.

Friday:
Living Room: Vacuum, dust, reorganize bookshelf, wipe Arcadia doors, de-clutter paper and unneeded junk. This takes the least amount of time compared with the other rooms, so I take this day to finish any lingering laundry.

So there it is! Hopefully this helps me reorganize my thoughts, and I can get on with keeping my family organized.