Tuesday, December 31, 2013

Health at the holidays

In the past few weeks I've been contemplating something that I think a lot of people wonder about.  Every year I hear and see how many people get sick around the holidays and this year was no different.  As I scrolled through my feed on Facebook it was one post after another about various illnesses hitting families and how much it sucks to be sick around the holidays.  My family was no different.  We had a series of unfortunate events plague us as well and it's made me think: do the holidays really seem to bring about more sickness, or is it, in my case, inevitable when I have such high expectations for the holiday season?

It's not that I have high expectations of myself or others at this time of year, I guess I just feel like I expect everything to be so perfect and wonderful and when something happens to threaten that, it hits me harder than it normally would.  I don't even feel bad for myself, I truly am upset for those loved ones whose holiday is not as spectacular as I would have hoped it to be for them.  I am incredibly grateful to our family and friends who are always there for us and I always just want them to have a holiday that they deserve.

Basically I guess I wonder do we make unfortunate circumstances even worse at the holidays because we have a heightened sense of wanting everything to be perfect? I can't answer that for everyone of course, but I think that may be partially true.  On the other hand, because everyone drives themselves so crazy at this time of year trying to make everything so perfect, they often wear themselves down and sometimes illness almost seems inevitable.

Unfortunately this year, in my family, it wasn't only illness that affected us.  But starting around Thanksgiving things just started happening and while I don't feel the whole holiday season was bad, some events took their toll on the holiday spirit.  I also feel like it made the closeness of my family and friends all that more special and in the true spirit of the holidays, that is what it is all about.

So I sit here on this last afternoon of 2013, with a mind busy pondering all aspects of my life.  Grateful for what I have, appreciative of what we've been able to enjoy as a family, ready to welcome in the new year with good friends; but also very conscious of some of the lower times this past year has brought.  I'm not dwelling on them, but I am conscious of them.  The temperature outside is brutal, the snow is falling, and I'm thankful for my warm home, mostly healthy daughter, incredibly supportive husband, and the food and company we're going to enjoy tonight.

Happy New Year to all, I appreciate the time you've taken to read what I've written in the past year and I hope I can continue to earn your time and support in the coming year.


Thursday, December 26, 2013

One of the best gifts I've received...

So here I am the day after Christmas and I'm sitting down for almost the first time all day.  It was a great Christmas lessened only by the fact that we weren't able to share our traditional Christmas morning breakfast and gift exchange with my brother-in-law and sister-in-law who was was sick.  

Each year Tom and I try and set a limit on what we should spend on each other and this year we decided it shouldn't be much.  Tom already had an idea in mind and he said it wasn't going to cost much so I knew it was going to be something meaningful.  He has this knack for outdoing me almost every Christmas, usually by finding something extraordinarily sentimental and thoughtful and this year did not disappoint.  

When I decided to try this little blogging adventure Tom was worried that I was once again taking on something else that I would feel compelled to do even when I didn't have time and that it would become something else that would stress me out instead of being something I enjoyed.  I promised him that since it was all mine, I would only do it when I had time or when I really wanted to.  And except for the month of October for the past three years when I've tried to do the 31 for 21 Challenge, I have kept my promise.  

I think he was still a little skeptical at the beginning, but as more people commented on how much they enjoyed reading it, he began to realize that it was pretty important to me and that other people were actually following me and telling me how much they looked forward to my posts.  And so for my gift this year, he put together all my posts from the first year of my blog, along with pictures, and made it into a book.  The book was amazing, but he of course had to go one step further and write an incredibly sweet and tear-jerking message in the front that means almost as much to me as the whole book does.  I still haven't even had time to sit down and read through it all, but I know that reading those early posts will be both comical and emotional.  Those were the early days of Tera's diagnosis and I was still coping (am still coping sometimes) and trying to figure out how our life was going to unfold now that we had this new element to deal with.  

I hope that when I can finally finish going through it I can remember some of things I was trying to learn along the way.  I still struggle with being able to let things go although some life events have helped push me along the right path recently.  I don't take enough time for myself, I don't allow myself the luxury of relaxing enough, and I still worry about things that aren't always important.  The holidays are usually a perfect example, but I have to say with a few exceptions, I didn't do nearly as much as I have in the past and again, with a few exceptions, I was okay with it.  

I still have over a week left of my winter break and though I did work around the house today, Tom and I were able to work out together, get coffee together, and do some shopping together that we don't often get to do (we dropped Tera off at daycare).  And so my focus for the remainder of my break is to do what I want, enjoy my time off, still get some things done, and try and regain my perspective.  I'm not really one for New Year's resolutions, but I'm perfectly fine with a little reflection on what has worked and what hasn't and using that to recenter myself so that I can be a better wife, mom, teacher, and just a better me.  One that I can enjoy.  




Thursday, December 5, 2013

The Christmas Spirit

I'm sitting here at home alone in my living room; Tom worked a little late and is picking up Tera to take her to speech.  I have a cup of tea, our Christmas tree is on and looks beautiful, I have Christmas music playing, and I feel pretty at peace right now.  These past two weeks have been beyond words, but that's for a later post.  I have been in desperate need of peace and while I could be on the elliptical right now, I feel like this is much better for both my physical and mental health.

I absolutely love Christmas.  I can't wait to get our tree up and ever since I was a kid I've loved every minute it was lit up.  I remember when I was little being able to see our tree lights up from my bedroom and even as an adult I find it so magical.  There is something about the little lights illuminating all the ornaments that almost all have sentimental value.  We don't have one of those themed trees where everything is the same color and the ornaments are just that: decorations.  We both have ornaments from when we were kids that were given to us as gifts.  We have ornaments that we have bought together, we have Star Wars ornaments, M&M ornaments, German Shepherd and Siberian Husky ornaments, little white kitty ornaments, Scooby Doo ornaments, teacher ornaments, we have the paw prints of both Jaina and Feyla as ornaments, and other various whimsical ornaments that we enjoy.  I even have a fairly large chicken ornament that my grandma gave me that makes me laugh every time I put it on and that this year Tera dictated be placed at the top of the tree.

I love coming home in the dark just so I can see our outside lights all turned on.  I smile each time I see the effort that Tom has put into making our outside look as perfect as it can even though I hate that we don't really have an entryway to decorate.  I love our village that I have built up since Tom and I have been on our own.  Of course, not your traditional village, but the Department 56 North Pole village with all its silliness and fun.

I prefer pictures from her first Christmas because last year
she had a black eye :)
 Now that we have Tera things have had to be adjusted slightly.  Since my sweet girl is nothing if not curious, we've tried to find a balance between keeping our favorite pieces out and not having to say "no" every two seconds when she is awake.  This year I had her "help" set up the village but we didn't put any of the very small removable parts on the buildings.  I also had her "help" decorate the tree by having her put the few non-breakable ornaments on her level.  The rest of the tree is decorated to just above 34" from the floor plus whatever her arm length is.  I set up a separate tree for Tera's ornaments downstairs just like my sister and I had when we were growing up and she likes that.

One of my favorite pictures of Tera with her AC
As soon as I'm done with this I'll do some online Christmas shopping which some may say doesn't have the same feel as actually going out to pick gifts.  But I say if I can shop from the peace and quiet of my house surrounded by my tree and my own Christmas music, I've embraced the Christmas spirit plenty.

I love trying to pick out gifts that people will truly enjoy and I have to say, having Tera around has definitely made Christmas more fun.  Tom and I haven't gone too crazy for her because she gets so much from everyone else and because she doesn't know any better yet.  But it's fun for us to find little things that fit her current loves and now that she really does have interests, it's even more fun to watch her open things on Christmas morning.  I've spent some time looking for ways to start new traditions and I'm looking forward to the years when she will appreciate them.  I have so many fond memories of Christmases with both sides of my family and I just want Tera to have things she loves about Christmas (besides presents).

Now this little elf needs to get to work on making some of these Christmas miracles happen...
  

Friday, November 22, 2013

Remembering the early days...

Things have been a little crazy around the Theodore house these past two weeks (what else is new).  We've had what seems like an endless number of doctor and therapy appointments and I am so relieved it's a short week at work followed by one of my favorite holiday weekends.  In the midst of all this craziness, for some reason I've been paying more attention to the digital frames we have around our house.  Right after Tera was born I ordered one for our living room and the very first pictures I loaded on it were the ones from her first week.  I didn't have a memory card at the time so I loaded them directly onto the frame itself and every once in a while, the frame seems to revert to its internal memory instead of the card and it gets stuck on a loop of those very early pictures of Tera.

Sometimes when those early pictures cycle through I don't think twice about them except of course to notice how little she once was.  But other times, like recently, those pictures take me right back to those early days and I feel like I am experiencing all of the emotions all over again. I'm sure many people in our same situation want to forget about many of the details of those first days and weeks.  But I don't ever want to forget any part of it.

 I still relive the doctor delivering the news to us and while I don't care for remembering the pain I felt at the time, it was all a part of what has become one of the best things in our life.  I don't want to forget any of it.  I want to remember the joy of holding her for the first time, the excitement of everyone who came to see her, and even the closeness that Tom and I felt during that time.  It sounds strange, but I want to remember those people that I was there to tell (Tom took care of so much of delivering the news to visitors after the first day).  I want to remember all of the emails and Facebook posts congratulating us and telling us how beautiful she was and offering help of varying kinds, but above all else, offering unconditional love for our new daughter.  I want to remember bringing select family members and friends into the NICU to hold her and see her.  I want to remember having to move all the cords and wires just to hold her close to me.

I want to remember the smell of her and how warm her little body was as I held her, I want to remember the day we walked into the NICU together and the nurse telling us that Tera had pulled out her own NG tube (for feeding) and that they had decided to trust our little newborn and not put it back in so we could see how she would do on her own.  I want to remember the day we arrived to finally take her home and Tom being amazed that he could actually walk around with her because she wasn't hooked up to anything.

I want to remember getting her in the car and sitting in the back seat with her while Tom drove us to pick up lunch and then head home.  I want to remember that it was snowing and that Tom kept asking me if she was okay and that he wished he could see her too.  I want to remember getting home and finally feeling like we could start our life as a family.  I want to remember the early visitors; those family members that had been dying to hold her without wires and just see her so they would know she was home and okay.

But there are other things from the first weeks and months that I want to remember too.  I want to remember feeling unusually calm during the first few weeks.  I think I was too preoccupied with her diagnosis to really worry about anything else and of all the things I've worried about in life and the things I've questioned about myself, taking care of Tera was not one of those things.  I just wanted to hold her, feel her, smell her, kiss her, and snuggle her.

I want to remember the way that Tom took care of Tera and I.  He forced me to drink enough water, take my pain medication, help me keep track of when Tera ate, when I pumped, and when those things had to take place next.  I want to remember that I could not have loved him any more during that time if I tried.

There are some good and some bad things I always want to remember.  I want to remember them both so that when more bad things happen I can remember the good times, and so that when the good times are happening, I remember to appreciate them that much more.

Saturday, November 16, 2013

The Bat Cave

I love my little family.  My husband and my daughter amaze me on an almost daily basis; for very different reasons obviously, but they both do.
Let me start with my husband.  A few months back, I casually suggested that letting Tera and her friends use our crawl space as a play area could be kind of cool. To clarify, our crawlspace is not your average crawlspace.  For one, it covers the entire area of our living room and kitchen so it's pretty big.  Also, the owners before us put in plywood flooring and lighting throughout the whole area so it's actually kind of nice.  Anyway, Tom took that idea and let his imagination run and has now started construction on what will be Tera's very own Bat Cave.  The area is about 35 square feet, has it's own floor, drywall to separate it from the rest of the space down there, will have it's own lighting, and currently has a 31" Batman figure taking up residence in an "alcove" on the back wall.  And it's not done yet.  He is planning on mounting our old laptops on the walls; various knobs, buttons, and "controls"; hooks with her own capes hanging on them, vinyl decals with Batman logos, and possibly a Batman bean bag chair.  

What I find really entertaining is that he keeps stopping along the way and asking me if he's crazy for doing all this.  Crazy? Maybe a little, but it's also one of the coolest things a dad can do for his kid (and it's even funnier when it's for a daughter).  He's already spent hours working on this project, and it's something he's really excited about.  

I love that he's excited about it, I love that he's doing it for Tera, and I love that she's already excited about it too.  Among the words in her limited vocabulary is an approximation for Batman.  This afternoon when she woke up from her nap, Tom had finally gotten the area to a point of her being able to go in safely.  Since we first showed her the space this afternoon, she has asked repeatedly to go see "Batman" (who she loves to give kisses and hugs to).  

And that is just one of the many, many reasons why I love my husband and one of the many reasons why he is such an amazing dad.  

Now, Tera amazes me all the time with what she is able to do and how she affects people.  She is quite a magnet for people and I won't lie when I say I constantly question if it's because she has Down Syndrome.  For the most part, I don't really care why people are drawn to her or how it is she can make a string of strangers smile at her while she waves to them.  She can work a room and leave people talking about that little girl that never stopped moving and waving.  And if they happen to tell someone else that they had the incredible opportunity to interact with an adorable little girl who happens to have Down Syndrome, why should that bother me? I have watched people walk through a store without cracking a smile once; until Tera reaches out and waves enthusiastically and maybe even blows a kiss to them and then watch as they all of a sudden break out in a smile.  I have referred to her as a DS ambassador at many different events, and I hope that I can continue to see that as a positive thing.

I'm still working on my feelings about various topics relating to DS.  I'm still getting used to people identifying Tera as having DS.  I still don't know if it bothers me that people can see it, or if I know that because she's so damn adorable people can't help but look at her.  On good days I'm positive about it, and on bad days I remind myself that it doesn't matter what anyone else thinks.  And everyday, I know that she's one of the few kids anywhere that will have her own Bat Cave very soon.    

Friday, November 8, 2013

A big warm welcome back to our old friend pnuemonia...

Well, Tera made it seven months without the dreaded "p" word, but as the saying goes, all good things must come to an end.  I had actually hoped to share a much more positive post earlier in the week, but as typically happens when pneumonia hits, it wears down the whole family.  Tom and I spent most nights this week prepping for the types of nights we've had before when she's had pneumonia.  We keep the thermometer near, a bowl for throwing up, her humidifier is going, and then we try and go to bed early in case we're up half the night or end up having to take her to the hospital.

I have to say, this one took us completely by surprise.  She just coughed for the first time this past Sunday morning.  There was no cold or sinus infection preceding it this time.  She coughed a few times on Sunday and ran a fever for most of the day.  Monday she threw up twice, also ran a fever, didn't have a huge appetite, but was otherwise fine.  Tuesday she stayed with my in laws since she still had a fever on Monday, but was fine for most of Tuesday.  Tuesday night she started running a fever again so she stayed with them on Wednesday.  That's when it went downhill.  She threw up twice at home Wednesday morning, three more times at my in laws, and was completely lethargic all day.  She ate basically nothing all day.  So Wednesday afternoon I took her in to the doctor where I got the very unexpected diagnosis of bilateral pneumonia.

We ended up taking her in that evening for the chest x-ray to get that out of the way, filled her prescription, and headed home.  Thursday morning I stayed home with her and Tom came home at noon so I could go back to work for parent-teacher conferences.  Then when I got home at 9:15 pm, he got on a call until 11:30 and then came to bed.  This morning I got up and left before they were even awake and Tom stayed with her and worked from home.  Then I came home, we got dinner, and now he's leaving for hockey. I'm exhausted just thinking about it.  But on the plus side, she's slept better at night than she usually does when she's this sick.   Tom had said she was finally eating some normal food again today and despite the fact that she put up a huge fight to take a nap, was actually fairly normal.  Then of course we get to 6:30 pm tonight and her fever goes back up to 100.5 and she throws up again.

Plus sides? I don't have to take her swimming in the really cold pool tomorrow morning, she's been super snuggly all week, and she's not in the hospital.

I'm completely exhausted from being at work until 8:30 last night and from all the events this week, but tonight is also one of the few nights I have to just do what I want.  I'm not going to grade anything, I'm not paying bills.  I just want to write my post, turn on some reruns, and browse Pinterest.  Is that too much to ask? It might be...

Before she got sick :)

Wednesday, October 30, 2013

Day 30- An interview with my husband

If there's one thing Tera loves more than almost anything else in her world, it's her dad. "Dada" was her first word and she has been Daddy's girl for quite a while now.  They get to roughhouse together all the time, they are silly together, he teaches her all about the Star Wars characters he has bestowed upon her, and she just absolutely adores him.

I couldn't wait to see Tom as a dad.  I knew he would be great and when we found out we were having a girl, I was even more excited.  I have not been disappointed once.  When I see them together I feel like everything is right with the world.  When I hear her sweet voice say "Dada", I can just hear her love for him.  

When we received Tera's diagnosis, Tom was just as upset as I was.  We were both completely blindsided by it and all the health implications that came along with it.  We were new parents trying to deal with this huge shock and despite how supportive every one of our family and friends were, it couldn't compare to what we as parents felt; we had only each other to confide our fears and concerns.  It was something that I feel cemented our relationship even further and has proved to us once again that we really can handle anything.

I've been saving this post for the end of the month because I thought it would be a really great way to cap it off.  I'm going to interview Tom and use his responses as the rest of this post.  It may end up taking more than one night, but I want it to be meaningful so here goes.  This will be my last official post for Down Syndrome Awareness Month.  Tomorrow we have a fun filled evening with the Stanley Cup planned so I am going to take the night off from anything else.  So here goes:

What's the one thing you've learned since Tera was born?
How to change a shitty diaper.  

How much success do you still feel about winning the naming of Tera?
In the end I always get what I want.

What still scares you about Down Syndrome?
The future.  The inevitable, the time when someone says something offensive to her or treats her differently because of it.  

What's something that Tera has done that has surprised you?
On any given week, it's the small things.  Tonight she was able to scoop out the last little bit of applesauce from a bowl, the first time she signed, and when she took her first steps.

What kind of things do you envision the two of you doing together?
Watching hockey, movies, cooking together, and I'm sure at some point I'll end up with make-up on my face since I've already had bows in my hair.

What do you worry about her not being able to do?
Driving a car always lingers, living on her own, will she have the ability to do sports or athletics in some fashion, will she be able to skate?

What do you worry about her struggling with?
The educational side of things.

What do you worry about the most?
Mostly just the future.  The possible heart surgery.  I'm not really worried about her medically other than that.  More what to expect in the distant future.
How has she changed how you look at things?
I try to slow down and understand where people are coming from now.  Is someone behind me rushing to get somewhere because it's more important than where I'm trying to get?  I try to assume more that people have good reasons for the way they act.  

What are the best memories you have so far as a dad?
ComiCons and her excitement when we come home.

What are things you did with your parents that you want to do with Tera?
Take an interest in what she's interested in.  My parents did things that I liked doing, even if it wasn't necessarily what interested them.  They always took an interest in my interests.  

What are your goals as a parent?
Give her the tools she needs to succeed and be happy.

If you could go back to the the day Tera was born and tell yourself anything, what would it be?
I wouldn't change anything or want to know anything different.

What advice would you give to other new parents facing a birth diagnosis?
The good times outweigh the shitty times.

What do you love most about Tera?
Her personality.









Tuesday, October 29, 2013

Day 29 of Down Syndrome Awareness Month!

Tera has no shortage of aunts who are wanting and willing to shower her with attention and kisses. Tonight I'd like to share my sister Lindsay's thoughts on Tera.

What has Tera taught me.... Well that is a very long list.  She has taught me how to love unconditionally, how one little smile can make me and everyone else I show her picture to smile (no matter how bad of a day they are having), that I thought I had strength when Tera, Melissa and Tom have more strength than they give themselves credit for, how amazing it is to be her aunt, how a little girl who has only been on this planet for a little over 2 1/2 years can change an entire family and soooo many people that she has never met.  I have also learned I have an amazing family and extended family (we are going to go with extended).  I love being able to FaceTime with her and see her new signs, animal noises and now words!  She works so hard and I am so proud of her and even though I don't get to see her as often as I would like I love getting my kisses over the phone.  



Sunday, October 27, 2013

Day 27 of Down Syndrome Awareness Month!

Sunday night, we meet again.  I have to say my anxiety on Sundays has been less lately, but my not wanting to leave that sweet little face that is sleeping (for now) upstairs is just as bad.  She is such a silly kid and even when she's being a pain in the butt, I still don't want to leave her.  She has become such a little person in the past few months, she's just not a baby anymore.  Even her therapists have commented on how much older she seems.

We've been working on speech so much for the past year that it's hard to believe how much progress she's been making.  She currently has about five to seven words and a few more are emerging.  She picks up new signs in less than a day and it blows my mind every time she does it.  And what she understands is even more incredible.  I've been trying in the last several months to overestimate what she comprehends and speak to her as if she does understand everything I'm saying and it's been amazing to watch her respond appropriately.  There are of course plenty of times when she just doesn't want to listen, like any other toddler, but most of the time if we structure a direction or series of directions carefully and repeatedly, she will do what we ask.

The key with Tera really has been using "then" statements when giving directions.  If we want her to get ready for bed, for example, we tell her to go upstairs, then we can brush teeth, then we can feed the fish.  Usually by the second or third time (sometimes fourth or fifth) she walks herself upstairs to get ready.  We can also use it to redirect her when she's doing something we don't want her to.  Over the summer I really noticed that she understood this when we were walking through a pet store and we were letting her walk by herself instead of sitting in the cart.  She kept darting off and I told her if she didn't hold my hand, she had to go back in the cart.  After repeating it one time, she took my hand we and we made it through the rest of the store.

This is when I can't imagine not having her therapists to brainstorm with us.  This idea came  from both her developmental therapist and her speech therapist and it has helped us tremendously with routines and transitions.  Now we'll just have to check with them on any ideas they might have for getting to her to sleep through the night consistently...


Friday, October 25, 2013

Day 25 of Down Syndrome Awareness Month!

Once again we are faced with an inexplicable Tera dilemma.  Only this one isn't new.  And it may not even be something we can do anything about.  But I'm tired.

Tera was a great sleeper when she was an infant.  We chalked it up to the fact that we had enough to deal with after her birth, the very least we could get was a kid who slept well.  And she did.  Until she was about a year and a half.  That summer after her first birthday I was up with her sometimes four times in a night and it was least once a night most nights.  Since then she has gone in phases.  Obviously when she's sick it's worse, but quite regularly we're faced with sleep problems when she's seemingly perfectly healthy.

Here's what tends to happen.  A few times a night (some nights are better, some nights are worse) she'll start whining in her sleep.  This could last anywhere from a few seconds, to twenty or thirty minutes.  Sometimes she'll just fall back asleep (although she never really seems to be completely awake), and sometimes I have to get up with her.  Sometimes I can just reposition her and recover her and she's back out.  Sometimes, like last Thursday and then again last night, she has a more difficult time getting back to sleep.

We can't really connect it to anything.  Sometimes it's just whining for a while, sometimes that whining turns into full out crying.  Sometimes she'll fall back asleep on her own, sometimes I have to get up and comfort her.  I really have no idea what might be causing this, but there are weeks where I might not get a full night's sleep the whole week.

The other somewhat confusing thing she has going on lately is how long it takes her to fall asleep some nights.  This past Sunday night and Monday night I sat next to her bed and watched her completely flip over and flip positions for over fifteen minutes straight before she even got close to falling asleep.  Then of course I had to try and sneak out of her room without setting off our wood floors at which point I occasionally had to start all over.  It almost seems to be an input thing for her, but I've tried her weighted blanket and that doesn't always help.

As I type this, she's been in bed for an hour and I've already had to go up to her room once and rocked her just so she would go back to sleep.  And in a few seconds here, I'll probably be going back up again.  I don't know what else to do to help her and I'm not even sure who to ask about it.  I don't have any other toddlers myself to compare her to so I don't know how much of this is normal, but couldn't we maybe catch that same break we got when she was an infant?

I know I'm tired and slightly concerned that something is preventing her from being able to sleep comfortably.  And right now, despite the fact that I would really like to take this time that I have to myself (while she intermittently sleeps and Tom plays hockey) and do something I want, like flip through the stack of catalogs sitting next to me, I should be practical and and give in to my urge and just go to bed.  That way at least I can catch some sleep on the front end of the night and try and survive yet another night.


Thursday, October 24, 2013

Day 24 of Down Syndrome Awareness Month!

Being a mom.  It's not always easy, it's not always fun, but it is incredibly rewarding and full of love.  I know many, many moms out there that are really great.  I have many moms in my life that I admire incredibly.  But in my eyes, my mom tops them all.  If you ask her, she says that my sisters and I give her too much credit, but she deserves every bit of it.  I owe my mom a lot (life would be a big one I guess), but for all the things she has done for me, what I'm most grateful for is her inspiring me to be a mom.  Life hasn't always been easy for any of us, but through it all I've always known I was loved and would be taken care of.  To this day, as soon as something goes wrong or when Tera is sick, I call my mom.  I don't even necessarily want her to do anything, I just need to hear her voice and wait for her to tell me it will all be okay; even when we don't know if it really will be.

And in addition to being a great mom, she is also a great Nani to Tera.  Tonight I would like to share my mom's perspective on Tera.

In so many ways I see her as just as a typical little 2 1/2 year old. She's curious, likes to test what she can get away with without being scolded and extremely energetic. I love her silliness, how hard she works to accomplish what she wants to do and how much she understands even if she can't communicate back to you with talking.  Tera picks up signing quickly, she learned how to sign Nani in just a few minutes.  I love watching her play and seeing that little brain working. She remembers what we do together when she stays at my house; dumping recycling on the floor and putting it back repeatedly or putting it on my head. Playing catch and her laughing at me when she throws it in another direction. Opening up her toy tunnel and each of us crawling in on each end.

I find her amazing and can't wait to see how she continues to learn and show us her endless capabilities.  Of course I am her Nani and pretty much anything she does is pretty exceptional!


Wednesday, October 23, 2013

Day 23 of Down Syndrome Awareness Month!

So I swear I'm not getting lazy, but unfortunately things like bill paying, grading, and sleep have gotten in the way of some of my posts these last few days.  I'm hoping I can include some special posts in the next week or so to wrap up this month.

I always try to make sure I share how proud I am of our family and friends and how amazingly supportive they have always been of her and Tom and I.  When people comment and say they don't know how we handle everything with Tera, I usually tell them we do what we have to do.  I have read many accounts of parents of kids with DS whose families are either not near, or not supportive.  Sometimes the families don't understand DS and aren't willing to learn, sometimes they just don't feel comfortable with people in different situations, some people just feel pity and they don't know how hold a normal conversation without "feeling bad" for them.  Whatever the reason, I can honestly say I don't know of a single person in our entire extended family or group of friends that has come across that way.  We do what we have to do, but I really can't imagine doing it without our incredible support system.  And for that reason I wanted to include just a few of them in some posts.  I want everyone to understand just what a difference a support system can make to parents in a stressful situation.

Some of the special posts I'd like to share are from our family members.  When asked what they have learned from Tera and how she has changed the way they act or live, Tom's parents responded with:

Our little kukla has taught us that being a grandparent is a wonderful thing. She has filled our hearts with love and pride with everything she has been able to accomplish with her determination. She has also made us be more aware of the challenges some people have in life. I believe that knowledge has made us better people.


Monday, October 21, 2013

Day 21 of Down Syndrome Awareness Month!

One of the hardest parts of being a parent, for me, is knowing when to admit I'm too tired to so something. I need to be able to say, tonight, I'm just going to relax. 

Tera is a lot of work and a lot of worry. Some nights, just getting her to fall asleep and stay asleep is a project. Tonight I am exhausted. I'm going to watch Bones, and go to sleep. 




Sunday, October 20, 2013

Day 20 of Down Syndrome Awareness Month!

Many months ago I started reading a book for parents of kids with Down Syndrome ( see lesson #18 from yesterday's post). One of the best things I got from the parts I was able it get through was whatever your child is interested in at that time, nurture and feed that interest. 

The author has a 24 year old son with DS and when he was young he was interested in instruments. She bought him books, they went places, and they learned everything they could about instruments. To this day he can name almost any instrument he hears and can tell anyone everything about it. 

She suggested starting young and since reading that we have tried to help Tera develop the interests that she seems to have. 

I really do love that she has things SHE truly loves.  And most people who know her, can attest to these loves.  

She loves babies.  Baby dolls, babies she sees in stores, and, of course, her babies (aka her cousins Riley and Kaelynn).  We have bought her several different kinds of dolls to have at home, and she has at least one at each grandma's house.  She can and will play with these for sometimes close to an hour.  She covers them and uncovers them with blankets, she carries them around the house, she feeds them, and yesterday she held a bottle under the water dispenser of our refrigerator and tried to fill it with water.  Our latest goal has been to try and find one that she can dress and undress to try and help her with her fine motor skills.  I added a bunch of things to her Christmas list today that included baby accessories like bottles, diapers, a playpen, a high chair, and changes of clothes.

She loves animals.  Pretty much every animal but her favorites are cats, elephants, giraffes, and sheep.  She knows a ton of sounds and/or signs for animals and they were in fact some of her very first intentional sounds.  We have puzzles with animals, books with animals, stuffed animals, we take her to petting zoos, the actual zoo, we watch TV shows and movies with animals, she has a jungle with animals that make sounds, apps that are all about animals, and when we're in the car and she's whiny or we're trying to keep her awake, we practice all her animal sounds.  


She loves books.  And I give a lot of that credit to her first daycare teacher who spent hours reading to her.  We of course try and pick books that include some of her interests, but she also has an aunt who is a first grade teacher and who has phenomenal taste in books.  I'm not sure how many times we've read Pete the Cat and the Skippyjohn Jones, but at least those entertain me as well.  

And lately we've been able to introduce our own likes to her.  Tom has taken out many of his old Star Wars toys for her to play with and she in fact has an AT-AT in her room that she loves and gives kisses to (in addition to the Wampa rug in the middle of her room that she lays on every chance she gets).  It helps that her whole room is decorated in Star Wars, she's getting a new Star Wars comforter hand-made by Yia Yia for her big girl bed, that for two of her three Halloween's so far she will have been Star Wars characters, and I just found a whole bunch of new ideas for other things in her room. For Mother's Day Tom bought me the original Scooby Doo series (which I love) on DVD and after getting tired of Sesame Street one week over the summer, I put one in.  That's pretty much all she wants to watch now.  She made up her own sign for Scooby Doo, she has my old Scooby Doo stuffed animals, and she picked Scooby Doo over Batman for her new orthotics design.  But speaking of Batman, she does love that too.  She thinks she is in fact Batman due to the number of t-shirts and pajamas she owns with that on them, and when she sees the Batman symbol anywhere, she points to herself (again, she thinks she is Batman).  She also has her own motorized Batmobile and had a Batman themed 2nd birthday party complete with Batman dress.

We actually find it kind of fun to entertain her interests because, like I said, many of them are ours as well.  It is so amazing to watch her reaction when she sees something in a store or out in public that interests her because then we know it's really her interest.  And it gives us things we can do as a family.  Of all the strategies I've been told about and read about, this is one that is definitely easier to incorporate because all we have to do is buy stuff for our sweet girl.  And that has never been a problem for us or anyone else in the family.




Saturday, October 19, 2013

Day 19 of Down Syndrome Awareness Month!

I felt like I was on kind of a roll last night with my list of things I've learned as a parent so here's a continuation of that list.

13.)  Clutter doesn't mean the same thing it used to. I never intended on decorating my living room in Ikea storage units and a Sesame Street kitchen, but somehow it's working. 

14.)  I will never stop thinking I'm hearing a crying kid when I'm in the shower. Unless she's not home. 

15.) I may never finish an adult book in less than 3-6 months again. 

16.) I don't need a reason to buy my kid new clothes or toys. If I want to, I'm going to. 

17.) Down Syndrome is not as scary as I thought it would be. It presents new challenges, many celebrations, a new appreciation for different, and a pride I never imagined for Tera's accomplishments. 

18.) People are only looking at her longer in public because her face is insanely beautiful and she's usually
waving at them. 

19.) We can do this. 

20.) I can do a ridiculous number of things with only one hand.

21.)  We can relive our childhoods through Tera.  She doesn't know that some of the things she's playing with are, in some cases, over twenty years old.

22.) Patience has never been as important as it has been since Tera was born.  Patience with her, with myself, in waiting for her to meet milestones, in dealing with doctors, in conversations with other people about how things will eventually get better or easier, with people who say things because they just don't know any better, with behaviors and stages that last longer than in typical kids, and just with life in general.

I think that's a good place to stop for now.  I will probably pick this up again at some point in the future, but I believe this is a pretty comprehensive list so far.  Now I have some picture sorting to do :)

Friday, October 18, 2013

Day 18 of Down Syndrome Awareness Month!

I have been awake since a little after 2am this morning and am running on less than four hours of sleep.  Due to some circumstances beyond my control last night, I was unable to post.  And due to my severe lack of sleep last night, my vision is blurry, and I may not be able to form coherent thoughts.  But I would like to list some of the things that I have learned as a parent in the last two and a half years.  These are in no particular order other than in the order in which they popped into my head.

1.)  I can fit in a toddler bed.  I can't sleep in it, but I can lay in it.

2.)  I have super sonic hearing.  This is actually a combination of being a teacher and a mom.  I developed my teacher ears over the past 11 years and can pretty much hear anything that is being said in my classroom.   As a mom it means I can detect changes in breathing, tiny little foot steps, and the never-ending change in positions all night long.

3.)  I can sing the same song about 100 times if it means less crying, whining, or falling asleep at an inopportune time on the part of my child.

4.)  Somebody else's poop, pee, and vomit are not as disgusting as they used to be (as long as they in fact belong to my child.  And as a side note, I've developed the ridiculous reflex of putting my hand out to catch vomit, even when it will do little to no good

5.) I can function at work on very little sleep, lots of stress, and constant worry.

6.)  I have developed the most irrational fears that occur at the most inconvenient of times. For example: my child, though sleeping quite soundly, must be freezing to the point of harming herself because she has kicked off her blankets once again.  And she must be covered again even though I know she will do it again.

7.)  That life will not necessarily get easier, it will just present different challenges.

8.)  Kids will pick up bad habits much more quickly than good habits, and they will learn both from their  parents.

9.)  Just when you think things can't get worse, they do.  And when you think things will never get any better, they do.

10.)  I will never stop being amazed by the fact that Tom and I created such a perfect being and that I am in fact a mom (which Tom pointed out is official since I have tried to sleep in our two year old's bed).

11.)  I will always, on some level, worry that the television she is watching is not educational enough.

12.)  That while I would love to continue this list, and may continue in the next few days, I'm falling asleep as I type and so that would probably be a sign to go to sleep.


Wednesday, October 16, 2013

Day 16 of Down Syndrome Awareness Month!

Since it is the middle of October, I suppose it's time to start planning for Christmas.  I'm only half joking.  Every year I have these grand plans of starting things early so I'm not running around last minute picking things up, but really that's just a dream.  Mostly what I try to start doing early is getting Tera's list ready for everybody.  Up until a few months ago, Tera was the only grandchild and niece on either side of her family (she now has three month old twin cousins) and so she was spoiled rotten everywhere she went.  I don't honestly think that will change much and so I need to start giving everyone ideas.

I have mixed feelings on the types of items I put on her "list".  On the one hand, I want her to be a kid and just enjoy some toys without them having to have a specific purpose or therapeutic value.  On the other hand, if she's going to get more than she knows what to do with, it might as well be things that will benefit her in some way.  And so I start researching.  

The really nice part is that both of our families are very good at providing that perfect combination.  She gets some silly things that all kids get, and she gets a lot of things that our families know will help in areas she's working on.  Many of the "therapeutic" toys are ones that lots of kids have, they just serve a specific purpose for Tera and other kids with developmental and physical delays.  

If you know of a child that falls into these categories, some of the things we've found to be helpful are:
-Dolls/babies for pretend play
-Puzzles (we started with ones that have the big pegs on them, then the smaller pegs, and now she's working on ones where she has to match the shape of the piece to the correct place on the puzzle, but without a corresponding picture on the puzzle)
-Always books, but specifically ones with textures, singles words on a page with a picture 
-Shape sorters
-Musical instruments (she currently has an accordion, two guitars, a keyboard, drums, and this awesome toy where you put various instruments on a platform and it plays a song using whatever instruments on the platform)
-Kitchen sets for pretend play
-Anything that forces them to reach, especially when they are younger
-Blocks and cups or anything that can be stacked
-Balls
-The folding tunnels for crawling 
-Toys that link together or Velcro food for muscle development and fine motor skills
-Things that play music
-Bubbles
-Coloring books and crayons
-Easel

I could go on, but those are the big ones.  I think it's important for any child to have some purposeful play in their routine.  And don't get me wrong , there is definitely a need to just let them be creative and silly as well.  
We've recently decided to get Tera a Barbie-like doll (we're a little too weird for just a Barbie though so she got a Monster High doll and a Barbie outfit) to help her practice her fine motor skills in dressing and undressing the doll.  I will probably add some new, more challenging puzzles to her list, there are always new books that she would enjoy, and we'll probably indulge her love of animals in some way.  

It's not necessarily less fun to shop for Tera this way, really it makes us feel better that at least most of the crap that fills up our house is useful.  




Tuesday, October 15, 2013

Day 15 of Down Syndrome Awareness Month!

As much as I would like each post that I write to be straight from the heart, maybe a little funny, and maybe a little heart-warming, the point of my posting (almost) every day in October is to raise awareness about Down Syndrome.  

Today I am going to share a few things about the preferred language surrounding DS.  I have made it very clear that I'm not affected much by the language of other people, but there are families and individuals out there that are.  And maybe someday Tera will be affected by the language of other people too and so for everybody else, I want to share a guide of preferred language from the NDSS.  If you feel so inclined to share something from this month with others about DS awareness, I just ask that you consider including this guide.  People with DS are just that: people first.  

So here it is and I promise I will return tomorrow with something more creative.

USE THIS LANGUAGE WHEN REFERRING TO DOWN SYNDROME AND PEOPLE WHO HAVE DOWN SYNDROME:

  • People with Down syndrome should always be referred to as people first. Instead of "a Down syndrome child," it should be "a child with Down syndrome." Also avoid "Down's child" and describing the condition as "Down's," as in, "He has Down's."

  • Down syndrome is a condition or a syndrome, not a disease.

  • People "have" Down syndrome, they do not "suffer from" it and are not "afflicted by" it.

  • Down vs. Down's - NDSS uses the preferred spelling, Down syndrome, rather than Down's syndrome. While Down syndrome is listed in many dictionaries with both popular spellings (with or without an apostrophe s), the preferred usage in the United States is Down syndrome. This is because an "apostrophe s" connotes ownership or possession. Down syndrome is named for the English physician John Langdon Down, who characterized the condition, but did not have it. The AP Stylebook recommends using "Down syndrome," as well.

  • While it is still clinically acceptable to say "mental retardation," you should use the more socially acceptable "intellectual disability" or "cognitive disability." NDSS strongly condemns the use of the word "retarded" in any derogatory context. Using this word is hurtful and suggests that people with disabilities are not competent.

- See more at: http://www.ndss.org/Down-Syndrome/Preferred-Language-Guide/#sthash.vkS3Jf4f.dpuf


Monday, October 14, 2013

Day 14 of Down Syndrome Awareness Month!

If our house is any indication, the apocalypse is coming.  The locusts have arrived and it's only a matter of time before the rest of the signs are evident.  Except in our case the locusts have come in the form of carpenter ants.  We had the issue last weekend, they were gone for a few days, and since Thursday they have been making a comeback.  Today we hit critical mass.

Here's why our marriage seems to work (I think).  First of all, my husband deserves a lot of credit.  It cannot be easy being married to me.  I'm not high maintenance, or demanding, or whiny (in my opinion), but I'm a bit of a nut job.  I lose my shit regularly and he has become a professional at dealing with my fallout.  He is always there to reassure me that life will go on if the floors aren't vacuumed (I'm still not convinced) and always ready to take on one of the items on my never-ending to-do list to help me out.  This morning was a perfect example.  I won't go into details, but I was overwhelmed.  Again.  We talked through it, took Tera to get her pictures taken, got coffee, went to Target and bought things we didn't need, and came home to deal with the rest of our day.

Enter the ants.  And the rest of my example of why we're still married after having been married for nine years and together for fifteen years.  Typically only one of us loses it at a time.  I had my time this morning, and this afternoon as the killing of the bugs seemed a futile endeavor, I calmly stepped in and got us an appointment for someone new.  That's not to say I didn't want to scream a little every time I walked into my bathroom and looked in the shower to see the equivalent of some kind of B-movie horror flick, but I didn't.  I calmly turned the water as hot as it would go and took pleasure in burning them down the drain.

When we were in high school I remember quite vividly getting a call from Tom's mom asking me to come over.  He had dropped his car off for some work and when he got it back he realized a part of his pride and joy stereo system was missing.  He had already kicked a dent in his car and nobody could calm him down.  I don't even remember what I said to him, but for whatever reason, I was what worked.  And today, while I sometimes feel like that skill may have worn off, I realize it's really more that our problems are more serious now than they were back then and so for both of us, a reality check can be a little more difficult than it used to be.

The nice part is that when I'm talking to him and reminding him that we've been through worse, and that we'll get through this too, and at least Tera isn't sick, that it's helping to remind me of those same things.  It's easy to lose sight of the fact that we've dealt with things like this before and we're still standing.  We might have a few more battle wounds now, but we're still alive, still together, and still relatively intact.

I'm writing this post outside on a beautiful fall afternoon.  My favorite time of the year.  I don't want to regret not having enjoyed this time despite the chaos that is going on in my house just a few feet from where I sit.  I plan on trying to make cookies with Tera this afternoon, I'm not going to do the work that I brought home with me because I have bigger problems to contend with.  Tonight we'll have leftovers from an amazing dinner that Tom made on Saturday, maybe have a fire, and then go to bed and deal with the rest of the week tomorrow.

I may not be so calm in my dealings later, but for right now my head is in a good place.  I wish I had more opportunities to do this, but I will enjoy this one and for once, try not to think about the thousand other things I normally do.  Except that I think I will have to go inside for that because this beautiful fall day is making my hands and feet cold.


Sunday, October 13, 2013

Day 13 of Down Syndrome Awareness Month!

Last night Tom and I went to bed by around 9pm.  He had played hockey the night before, and I hadn't slept well so when his mom and our friends left after dinner, we decided bed would be a great idea.  While Tera hasn't tried to get out of her bed this week since switching from her crib, she has spent most nights whining for up to 20 or 30 minutes at a time three to four times a night.  I'm not sure if the bed is related this this happening, but either way, I don't think I've slept a full night this week.

People and TV shows, and movies, and books talk about how little sleep you get when babies are newborns.  Tera was great as a newborn, but since she turned one, it's been downhill.  Sometimes it's when she's sick, but lately I have no explanation for why I'm getting up two to three times a night with her.  So when we have an opportunity to just go to bed, like last night, we try and take advantage of it.  Unfortunately last night was another one of those nights so going to bed early only somewhat helped.

Then tonight bedtime took close to an hour.  It's no wonder I'm constantly trying to figure out why I have no time.  It would be one thing if I was at least getting quality time with her, but most of that time is spent just sitting in her room waiting for her to go to sleep and then trying to sneak back across the room without waking her up with the creaking floors in her room.

The last few days I've had really great ideas for posts, but then by the time I sit down to write them, I'm completely exhausted.

Tera does have some sensory sensitivity that I always try to be aware of.  We use a weighted blanket to help her fall asleep since she moves around so much, but inevitably that ends up thrown off and sometimes she doesn't want it on at all.  She doesn't like blankets covering her feet, but she always has cold feet in the mornings when she gets up.  She's somewhat of a restless sleeper so she moves around constantly.  When she was a baby I always thought we were so lucky to have such a good sleeper, but now I think it's more of an anomaly when she doesn't wake up at least once.  The unfortunate part is that it's like this when she's healthy.  When she's sick I expect at least three wake up's a night.

I know there are probably essential oils out there, or some other holistic approach,  that can probably help with this, but I need to be able to research them and that's where the problem starts.

Today was a fabulous day.  I already have a special breakfast planned for Tera and I in the morning and Tom has the day off with us so we can spend an extra day as a family.  And maybe tonight will be the night that she finally feels comfortable in her bed and doesn't wake up until 7am.  Or maybe I just shouldn't stay up too late tonight...


Friday, October 11, 2013

Day 11 of Down Syndrome Awareness Month!

Unfortunately due to some computer issues last night I was unable to write a Day 10 post for this month, but it was out of my control and this has been a long week, so a break wasn't an altogether bad thing.

What I was doing last night while I was waiting for my computer to start working, was filling out the beginnings of the paperwork for Tera's transition to Early Childhood in February.  For those of you who are unfamiliar with the system, kids with physical and/or developmental delays are eligible to receive therapy services from birth to age three on a sliding fee scale with the rest of the cost covered by the state; this is called Early Intervention.  Tera currently receives occupational therapy once a week, speech once a week, developmental therapy once a week, and physical therapy twice a month.  Early Intervention has also covered the cost of her orthotics.  Each state and county vary in how much they provide and what hoops you have to jump through to get services.

We have been lucky because we haven't had to fight for anything for Tera.  We were also lucky that even though she still had to be evaluated when she was about three months old, she automatically qualified for the services because of her diagnosis.  Every six months we meet with her coordinator and her therapists at our house to either write her goals for the year or to discuss how she's progressing and whether the goals need to be rewritten or replaced.  I have read many, many posts from other moms who dread these meetings.  They either have coordinators or therapists who aren't supportive of their child or they get discouraged at their child's progress.  Once again, we've been lucky.  That's not to say that Tera has always met her goals when we meet, but we are very fortunate to have therapists who have always been very positive about her progress and who really highlight all her successes in the prior six month period.

At her last meeting in August, we started the process of discussing how the transition process would go for us and Tera in the next six months.  At the age of three, kids transition out of Early Intervention and in some cases, they move into an Early Childhood program.  This is what Tera will be doing.  We have already attended one conference on this and the options ahead of us can be overwhelming.  There are other possibilities for preschools or preschool-like programs for kids with special needs that vary in the ratio of kids with special needs to typical kids or sometimes in the types of services they will receive.  

One of the things we learned at the conference we attended is that as much as possible, you want your child to be in a least restrictive environment.  Basically that means with as much time spent with typical peers as possible.  We also learned that Early Childhood is actually the most restrictive environment.  I was really concerned about this until I realized that Tera is with typical peers the entire rest of her day, and has been since she was six months old.  I'm not as concerned about that anymore.

The part that worries me is that I won't know what to fight for, for her.  We were told Early Childhood follows Early Intervention and I never really questioned it.  There have been times when I have underestimated what Tera was capable of and I'm scared that I won't know that I should push for more (or less in some cases).  There are so many options out there for her and I just want to make sure that she gets enough of what she needs, but not so much that she can't show everybody what she's really capable of.  I would love to see her in a typical classroom when she actually starts school, but I can't even begin to express how worried I would be about her getting teased or not being able to keep up.  On the other hand, as I said, she's really only ever been with typical kids so I would hate to see her separated from everyone else her age because she may be delayed.  Clearly some of these concerns are more about a few years from now, but the fact remains that we are all getting ready for her to move on to the next step.

This Tuesday Tom and I will meet with the transition coordinator from SEDOL (Special Education District of Lake County) and I will bring the seven page packet that I filled out for Tera.  My understanding is that they will explain how the rest of the process will go, we'll schedule her evaluations to determine her need/eligibility for services (OT, PT, and ST), and we can ask any questions about the next few months.  I struggled on some parts of the paperwork for this meeting because I feel like Tera is capable of more than she shows sometimes.  Some parts were also tricky because I felt like what they were asking is common with many two year-olds; DS or not. I know when we're talking face to face we'll be able to articulate a little better what she can do and what she's still working on.

Until then I'm looking forward to a fun weekend with an extra day off to spend with my little family, and lots of silliness with my girl.  Tomorrow morning we have Tera's swim class so we'll see if I can get her to replicate what she's been working on in the bathtub...


 

Wednesday, October 9, 2013

Day 9 of Down Syndrome Awareness Month!

I'm tired tonight and not feeling particularly creative.  This is more as the result of being a working parent than being the working parent of a child with special needs.  Many times our lives really are more like any other parents'.  We make the daily decisions about what she should eat and drink, fight with her about brushing her teeth, worry about her future, love her, kiss her, and act completely ridiculous with her.

If there's one thing I've learned about being the parent of a child with special needs it's to try and forget that they have special needs sometimes.  In the end we just want for her what most parents want for their kids and that's for her to be happy, responsible, caring, and loved.

That's it for me tonight, I need to be able to get some sleep.  My beautiful special girl woke up three times last night.  And that has nothing to do with her chromosomes.  I don't think...











Tuesday, October 8, 2013

Day 8 of Down Syndrome Awareness Month!

Today I'd like to focus on Tera's speech.  From the minute I started researching Down Syndrome after Tera was born the key word seemed to be "delays".  I've heard some real horror stories from parents who were told not to expect anything from their children with Down Syndrome (yes, even in recent years and by actual medical professionals), but we have been fortunate enough to not be included in that group.  I guess when I think back on it, we weren't really told much one way or another.  At doctor visits we were mostly asked what she was able to do and it was left at that.  Once she was evaluated for Early Intervention services, all the therapists we had were always very positive.  But we are in an information age where almost everything you want to know is at your finger tips.  This can be both encouraging and reassuring, and discouraging and scary all at the same time.

The fact is that most kids with Down Syndrome experience some type of delay; whether it's physical or developmental or both.  When I first started reading posts from other moms two of the most common delays were in walking and talking.  Tera was delayed in walking, but not by much, even by typical standards.  Speech on the other hand has been a bit slower.  We've watched as kids around her and us have started having actual conversations with sentences and everything.  

Tera said "dada" at maybe around 18 months and started actually knowing that it meant Tom by the time she was two (maybe earlier).  Then she really started doing well with animal sounds and a little while later started working on "mama".  Originally it always came out as "baba", but then she would walk around the house this summer calling "mama" over and over again until you asked her to say "mama" and she would immediately say "baba".  After one particularly successful speech session, she started actually saying "mama" all the time and it's the most beautiful sound I've ever heard.  One of the advantages to having a child with delays is that when they are able to accomplish something, it is so incredibly rewarding.  I waited a long time to hear "mama" and even when she's calling it over and over again, or whining it, I still love to hear it every time.  

When we knew that her speech would mostly likely be delayed, we starting signing with her.  It took a lot of practice and making sure we incorporated the same few words every chance we could, but then one day while at Dairy Queen Tera wanted more ice cream and signed "more".  It was her first official sign and she's just taken off since then.  Her other early signs included "all done", "milk", "water", "please", and "eat".  We then started adding in animal signs and have made the choice to only add new ones as they become necessary and are ones that we can use regularly enough for her to pick them up.  These days she can learn a new sign in about a day if it's one that she can practice and use frequently.  

We've recently started having family members come up with their own signs for themselves so she has a way of "saying" their names.  Her signing is one of the things we're most proud of her for.  She has impressed many people with her ability and I have to admit, we are guilty of having her perform for strangers every once in a while.  Tera is currently two and a half and has as a part of her vocabulary the following:

She can say "Dada", "Mama", "YiaYia", "Papou", "cheese", and "ball" and is working on and close to "more", "juice", and according to her speech therapist today, "help".  

She does many animal noises including dog, elephant, giraffe, pig, fish, cow, lion/tiger, sheep, monkey and probably some others I'm forgetting.

She has some other sounds as well, like "choo choo"; I know there are more, but at 9:00 at night I can't think of them.  

She has signs for Uncle Mike, Aunt Cathy, her best friend Harper, and Nani and I would say close to if not more than 40 other signs.  

Each week she learns more signs and gets closer and closer to saying new words.  She is very vocal and is constantly trying to say new things with everyone's encouragement.  Her effort makes me more proud than I can possibly express and I can't wait to hear each new word that comes out.  But "mama" is still my favorite :)




Monday, October 7, 2013

Day 7 of Down Syndrome Awareness Month!

Whenever the topic of Tera's diagnosis at birth comes up, I say the same thing;  I wouldn't change not knowing before she was born.  I know that the unknown would have made me crazy and would have resulted in a very stressful pregnancy and it wouldn't have changed anything about her.

When I was pregnant I did all the research and tried to pick out the most responsible items for our registry.  I didn't pick anything outrageous, I didn't go over the top in the number of things we picked, and I tried to borrow things when possible.  I also tried not to open certain things until I was sure we were going to use them and I returned them if we didn't and bought other things we did (like diapers).  Our crib was $100 and it easily converts to a toddler bed (as we found out on Saturday) and was highly rated for safety and quality. We bought a $200 car seat, but a $15 monitor.  I'm still happy with both.

The reason I mention all this is because we were at Babies R Us on Saturday trying to find a rail for Tera's bed and I felt so nostalgic for all that stuff.  As we walked around I thought back on my numerous trips there to add things to our registry and the excitement at receiving all the beautiful new things.

I have read numerous posts in my DS groups from expecting moms of babies with DS who are wondering what they should register for.  Most of the time the other moms tell them to pick out all of the same things they would for any baby, and to enjoy it and I would probably say the same thing.  There aren't many things I can think of that I bought or received before Tera was born, that changed because of her diagnosis.  I think we exchanged some bottles because she needed the slow flow type, but I'm pretty sure many parents make changes to their bottle choice for many reasons.  We bought some extra burp cloths because she leaked everywhere when she drank a bottle, but so do other kids.  We had to buy some actual infant clothes because we never thought she would be only 6 lbs and we certainly didn't anticipate the slow growth, but it just made clothes last longer on her.

One of the hardest parts of a DS diagnosis, is letting go of some (not all) of the preconceived ideas about how life would be.  I don't think that changes for the parents who find out during pregnancy compared to those who find out at birth.  And I don't necessarily think that one is any easier than the other.  What I do know is that had I known before Tera was born, I would have overwhelmed myself with the "what-ifs" and I can't imagine I would have ever thought about how great our lives would still be.  There was no way to predict how determined she would be, or that she would walk only a few months behind schedule.  I wouldn't have thought she would change so many lives, be so incredibly inspirational, and that I could ever feel as proud as I do of her.  She is amazing; and despite the fact that most parents feel that way about their kids, I don't know that I would have believed how amazing she would be, if someone had told me she would have DS.  But here is she is, amazing me in new ways every day.



  

Sunday, October 6, 2013

Day 6 of Down Syndrome Awareness Month!

It's Sunday night and I need some time to mentally decompress so this will be short.

I'm still adjusting to the fact that Tera is a big girl now.  She's working on potty training, she walks down the stairs by herself, she feeds herself, and now she is in a bed instead of a crib.

I won't say it bothers me, I'm just saying I'm adjusting to it.  I feel like so many of the typical toddler milestones or challenges that parents face have been a surprise to us.  We didn't try and start potty training; she was doing it at school and just signed that she was ready at home.  She didn't start trying to climb out of her crib, she just did it and forced our hand at having to transition her.

I suppose in some ways it's easier this way.  We don't have a long drawn out process to go through to get her do the things that toddlers do.  But it's also taking us a little off guard at every turn.  I told my mom today when she called to ask how her first night in a big girl bed went, this kid has been nothing but surprises from the minute she was born.  In good and bad ways.

In the grand scheme of things, she's surpassing expectations.  Maybe not our expectations because I usually expect Tera to do more than  what's typical for kids with DS.  But that's also part of the problem; people expect that kids with DS will do everything slower and maybe not as well as typical kids. But you know what? They can do anything they want.  They will amaze you in ways you never thought possible.  They will challenge your expectations.  They will challenge your beliefs.  They will challenge you in general.  They will defy the norm and then keep going.  They are amazing people that oftentimes are not given the credit they deserve.

I'm here to tell you, DO NOT underestimate them.  Challenge them, believe in them, love them, respect them, and honor them because they deserve every bit of it.  

Down Syndrome Fact:
All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.