Wednesday, July 31, 2013

Doctor visit

Just recently, our pediatrician merged offices with a new group of doctors.  She is not available as often anymore so when we need to make impromptu visits (like today), we may often end up seeing other doctors. I wasn't happy about the change because I really love our pediatrician and the thought of not seeing her as much is disappointing.  She had been called to the hospital before Colin was born because his heart had been in distress and she was also the head neonatologist at the hospital.  Of all of the doctors that we saw and spoke with, she was always the most calm and reassuring.  Later on during numerous checkups in her office, she had told us that she didn't have much of a population of kids with Down Syndrome, but was going to do everything to make sure she was on top the guidelines and how things have changed in recent years.  She has always spent extra time talking with the kids and making sure they felt comfortable with her.  

Today was our first visit to the new office because Kailey had some suspicious bites on her arm that looked like they were infected (they weren't).  We ended up with a doctor we had never seen before.  When she came in and introduced herself, she looked at Colin, who was really excited to see her (he is so good at doctor visits and loves when they check with their instruments) and mentioned how cute he was.  She then asked "is he yours?".  Hmm, first thing that struck me as odd.  She started asking questions about Kailey while examining her.  Colin kept saying to her "I try?", meaning, can you check me too?  She kind of looked at him and just smiled so I told her what he was trying to say.  She then turned to me and asked, "is he high functioning?  he is really well behaved so he must be high functioning.".

Womp. Womp.  Seriously?  His behavior at that moment indicated that he was high functioning?  In her mind, I know she was probably complementing him but this question and statement irk me in so many ways. What if she saw him look at me, laugh and then run away on the sidewalk maze walking in to the office, would she think otherwise?  If she saw him in the waiting room refuse to pick up a book he dropped and have a mini-tantrum stomping his feet on the floor each time I asked (and then later obliging), would she think otherwise? If she saw our now daily fight (literal) with flailing, kicking feet each time we take him to the potty, would she think otherwise?  

While I gathered myself on the inside, I corrected her in my own way by saying that he is doing really well and is just like any other toddler.  It irks me because I just find it unprofessional to ask a question like that.  It irks me because she apparently thinks that behavior defines kids with special needs.  It irks me because it does.   

This journey has lots of ebbs and flows and I find lately that I feel a little overwhelmed with some of our challenges right now.  I know a lot of these anxieties stem from the fact that we are in a rather undefined summer "break" with much less rigid schedules and routines.  I feel a little "stuck" with some of the progress we had been making with Colin and start to overwhelm myself with things that still need to be done, goals reached, skills acquired, words to be said, and accomplishments on the potty. 

While I never want to see the summer come to a close (we still have a month!), I will be happy to see some of those more formal routines again because I feel as though we see the most progress with them.  

Saturday, July 27, 2013

Colin's Quirks

I have been wanting to do a post on this for a long time, but I've never quite been able to capture Colin while he is in the act of one his quirks.  It's one of those things that he's done for a long time but it slightly changes as he gets older.  If you would have asked Chris or I through the years, we would tell you that Colin definitely has some sensory "issues", but they don't affect him in the same way that they do others. For example, when it comes to Colin's feeding issues, we know that there are certain textures he doesn't like, but this is not the sole reason for his feeding issues.  More specifically, an example is the fact he doesn't like crunchy foods but has no problem putting sand in his mouth and crunching on that.  Like most kids, he doesn't like loud noises in certain situations but absolutely loves being at sporting events (particularly basketball games which are indoors) and loved the Fresh Beat Band Concert (dark AND loud).  

Through the years we have done some research and attended conferences where people have spoken about kids with Down Syndrome "seeking out" sensations.  We notice that Colin's "quirks" or sensory seeking behaviors mostly come when he is more tired.  His number one main quirk is that he loves the feeling of different materials on his fingers, particularly eye lashes.  You know you are "in" with Colin if he tries to rub your eye lashes.  When he is tired or falling asleep when sitting with you, he will try and rub your eye lashes to help him fall asleep (this is much harder to capture in a picture). His other quirk that is along the same lines is playing with small strings, pieces of fabric, small pieces of fuzz, etc.  He has lots of socks with holes in them because he will often take his shoes off in the car when tired and pull at the little fuzz/strings at the toe ends of the socks.  In the pictures below, I caught him shortly after being woken from a nap playing with pieces of string on one of our blankets.  The blanket is not holding up so well lately as he is pulling at different strings on it.  

The second and third pictures show the "look" he gets on his face the best when he is in this "zone", meaning, he is tired and "seeking sensations".  If you watch him closely while he playing with the different textures, you would notice that he likes it to touch the pads of his fingers a certain way.  It's often pretty delicately in the ways he touches it so I am often curious what it feels like to him that he likes so much.  His other quirk that I spoke about awhile back on the blog is his "dangling" which we learned about at a informational session we attended on behaviors in kids with Down Syndrome.  Dangling is basically a sensory/time filling activity where he will take a doll (particularly his Mickey dolls) and just literally hang them, dance them, move them in front of him for periods of time depending on how tired he is.  

These little things he does really mean nothing, other than I find them interesting!  They're just Colin's little quirks...we all have them!

Thursday, July 25, 2013

A Common Stereotype

Watching Colin's interactions with others change over the past few years has gotten me thinking about some of the common stereotypes with those who have Down Syndrome.  Most people assume that because Colin has Down Syndrome (or really anyone with DS), he is going to be more likely to give hugs and kisses or to be touchy feel-y with those he comes across.  

One thing I have always loved about Colin is how loving he is at his very young age. However, he is at a developmental stage where he doesn't choose or seek out anyone and everyone to give hugs and kisses to. Even for Chris and I, he is not always so forthcoming with his kisses and he will stand there in this pose pointing at us saying "no kiss!" if he's not in the mood.  When asked to say hello or goodbye to people by giving hugs and/or kisses he will often oblige, but it really depends on what HE wants to do in that moment. There are lots of times in public, he is more drawn to certain types of people and will ask for hugs from complete strangers.  It's often funny/awkward to watch because people aren't always sure on how to handle this (particularly men).  To be honest, Chris and I don't necessarily always want Colin hugging random strangers that we don't know so we have been pushing him to shake hands to say hello more often (particularly with men).  

Snuggling Mommy post-tonsilectomy

One special quality about Colin though is his ability to recognize when someone isn't themselves, sad, unhappy, etc..  He is one of the most loving little people I've ever met.  Just yesterday, I had my tonsils taken out and when I got home, I hugged both of them and then went to lie down in bed.  Colin had a really hard time with being told he couldn't come in my room and get in bed with me.  He kept being drawn back to me, would sneak in the room and shut the door until someone came and found him.  Eventually I felt well enough to lie on the couch and that seemed to help him.  He even came to snuggle with me a few times (how could I say no to that!).  

They entertained themselves b/y digging through the coat closet the other day.  
I am thankful for the special kind of love we get from Colin but also grateful that all stereotypes don't necessarily apply.  While I wish sometimes he would be more forthcoming to friends and family (if he doesn't seem to be in the mood), I am glad he isn't always willing to dish it out to everyone and anyone without getting to know them first.

...and just something fun.  Colin's vocabulary is definitely improving and he is speaking in short phrases.  However, when he watches himself, he just starts talking even if you don't know what he's saying.  I particularly love the facial expressions.

Monday, July 22, 2013

Outer Banks Vacation

Our recent vacation to the Outer Banks in North Carolina was the first time we did anything for an extended period of time away from home with both kids.  

We have done lots of little weekends away, but this was the first time we did something like this with friends and away for a week.  We had heard that it is often difficult to drive over the bridge at certain times on Saturdays, so we decided to stay down in Portsmouth, Virginia the day before our vacation was starting. We checked into a hotel, did some swimming in the pool, and then headed out for dinner in town.  We had a really nice view from our room of the water we were staying on.  

The kids actually did a really nice job staying in the hotel and with all of the travel on the first day.  

We caught a later dinner, which helped immensely with bedtime.  

On Saturday morning, we got up, had breakfast and then headed out for our first family vacation.  

We stayed in Nags Head with 3 other families in a really nice big house in a location that was perfect for access to the beach.  The house also had an inground pool and a hot tub, so those were nice perks as well.  There were 16 people staying in the house with a handful of kids ranging in age from 1 to 21.  We had a really great time and everyone was a lot of fun to spend time with.  We did a lot of things together, but also went off and did things on our own as well.  It was really nice for Chris and I to be able socialize every night and have the kids in bed by a decent time.  

We spent a lot of time at the beach but often mostly just in the mornings because the afternoon seemed to get more windy and kick up the sand more.  

On one of the days, Kailey decided that she had enough and was going home (just as we were about to pack up anyway).  She got her shoes on and started walking up the beach to leave.  We let her go thinking she wouldn't go too far, and then realized she was really on her way out.  

One thing that I found fun about being on a trip like this is that usually someone started some activity or hanging out somewhere and then everyone else kind of followed and congregated as well.  We did a lot of playing outside before or after dinner.  Our house was in a nice location so that we could give the kids a little bit of freedom without worrying because we had a good amount of distance before the road and even then, it was a little side road before the major road.  

There was a little aquarium nearby, so on one of the overcast mornings, we took a ride over to check it out.  '

Most afternoons, we ended up hanging out in the pool because of the windy beach.  It was fun because the kids could be independent with their vests and swimmies and LOVED jumping into the pool.  It was a nice little location to have.  

We attempted a "jumping in the pool" family picture which had some funny ones to go with it in the process!

On our last day of the week, it wasn't a nice day so we took a ride to a lighthouse nearby.  Both kids needed the nap so we didn't get much by way of a family picture, but it was pretty neat to see.  

It's never easy traveling far with two young kids and being away from home for a long period of time. However, we had a really fun time and the kids were as good as they could possibly be.  The best part about it is that we were making fun family memories...