Teagan’s Two and a Half Year Assessment

We did Teag’s six month assessment a little early this time around, in preparation for baby.  Her whole crew came out to our house – six people from the school district!  Her PT Melanie and her intern, OT Nicole, ST Jacque, teacher Kristin and service coordinator Dedra.  Plus Joel and myself.  TT is always happy to have an audience.

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The whole crew!

At the end of 2013 I was pretty frustrated, feeling like our progress had plateaued – but 2014 has been very exciting.  We are super pumped about the goals we have for the next six months!

Communication
T’s progress in this area has been growing a lot over the last six weeks.  Between signing and noises, she is able to tell us what she wants quite a bit – not as much as most 2 and-almost-a-half year olds, but her progress is a good sign.  She understands a ton, and knows signs for milk, go, up, down, open, help, more, on, all done, drink, eat and me/mine.  She understands a lot, follows directions, and answers simple questions – if you want to know what the sheep, cow, lion, snake or monkey says, Teagan is your gal!  No help on the fox though.  Or bobcat, sorry Grandpa Lorin.  She’ll also put an “mmm” sound with the milk or more sign, makes a p sound when she sees a puppy, and a “ba ba” for baby or bubbles.  Our next step here is completing words – so bay-bee for baby instead of ba ba – and  word combinations.  We’re getting a bit of this already; this morning I got a “ma ba” out of her for more bubbles, and at daycare she will do the signs for me and down when she wants to go downstairs.  Our measureable goal for 6 months is for her to say 5 different words (the actual word, not just part of it) and to use 75 words or signs daily.

We’ve also found a new, private speech therapist to use.  Her name is Amy and she comes to our house – she is very assertive, and makes Teagan work, which I love.  We’ve only had two sessions with her, and we’re super excited to see where we are by the end of the summer!  So for now, we have stopped working with Children’s.

Occupational
We’re continuing to work on eating.  It has gotten better, but meal time is still probably the most stressful part of the day.  She’s doing stellar with the sippy cup, now our goal is to get her to use an open cup or a straw.  She’s doing relatively well with a fork and can pierce some foods – although it would work better if she would look at her food, instead of us, when trying to do this ;-).  Our six month goals here are for her to feed herself 2/3 of meal – which she does, if you consider how little she actually cares to eat (according to Grandma Ann, she gets that from her daddy).  Also to pierce 5 pieces of food in a row, and to use open or straw cup to drink 2 ounces of liquid at least twice a day.

T is also doing a LOT of drawing now, which Nicole is really excited about.  She’ll imitate vertical and horizontal lines, as well as dots, which is good for pre-writing skills.

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Teagie at her coloring table

Physical
T gets around pretty well – she is a pro at going up and down the stairs, as long as she can use the bars on the railing.  Our next steps here are doing the stars facing forward, vs. sideways as she does it now, and jumping.  She’ll start preschool when she is three, so we want her to be all set to move around independently there.  Also, she is working on catching a ball – she’s made some great progress here, thanks to her buddy Levi at daycare 🙂  Maybe he can teach her mom to catch a ball as well.

Cognition
We’ve been working a lot on play/learning toys – shapes in sorters, puzzles, stacking, identifying pictures.  Kirstin would like to see her expand her problem solving skills.  Our six month goals are for her to be able to seperate toys during pick-up time, and bringing things she needs help with to us.  She does this a bit – especially when she gets into the cupboard and finds a package of mini-muffins.  We also want to see her identifying up to three different pictures of people, animals or objects in books and pictures.

Otherwise, life in the Petersen household has been spent watching Cyclone basketball, moving Teagan to her new room, and preparing for baby sister!

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Big girl room!

Teagan is doing swim lessons, which she continues to love, with Daddy this time around.

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Can’t wait to see where we are come the next six month assessment, especially now that we are working with the new speech therapist.  And can’t wait to see what TT thinks of being a big sister!!!

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Book vs. Movie: Harry Potter and the Sorcerer’s Stone

I’ve never met a movie I like more than the book.  When it comes to Harry, I love them both – but there are a lot of details left out if you only see the movie.  Here are some, from Harry Potter and the Sorcerer’s Stone.
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The movie starts out with Dumbledore on the Dursley’s street.  In the book, we actually get a glimpse at Vernon Dursley as he goes through his morning routine, getting to work, yelling at people, etc. before any of the magic stuff happens.
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And when it comes to Dumbledore, he’s a lot goofier in the books than in the movies.  Wears purple robes and high-heeled boots.  Makes everyone sing the Hogwarts school song, but to their own tune, and says thinks like “I haven’t blushed so much since Madam Pomfrey told me she liked my new earmuffs,” and that he has a scar on his knee that is a perfect map of the London underground.  What??
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In the book and movie, Hagrid shows up carrying baby Harry on a flying motorcycle.  In the book, he says that he borrowed the bike from young Sirius Black…who isn’t mentioned again until (and then is, of course, a main character in) book number 3.  Genius.  Hagrid, in the book, is far larger than he is in the movie – “twice as tall as a normal man, and five times as wide”.  And he knows how to spell in the books (vs. “Happee Birthdae Harry” on the cake in the movie).
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In the book, Dudley’s friend Piers goes to the zoo with the Dursley’s for Dudley’s birthday.  Harry isn’t supposed to go, but his babysitter, Ms. Figg falls and breaks her leg (another character who becomes key in later books – book 5, for her).
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In the book, once letters from Hogwarts start coming to Harry addressed to the cupboard under the stairs, the Dursley’s move him into Dudley’s 2nd bedroom.  The letters also show up in crazy places – for example, inside eggs Petunia brings home from the grocery.
In the movie Hagrid tells Harry he’s not allowed to do magic, and that is all that is said.  In the book, he elaborates – Hagrid was thrown out of Hogwarts and had his wand snapped in half (which Harry figures, is now a part of the umbrella he always carries).  Of course, we find out why he was thrown out in book 2.
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In the movie, Hagrid takes Harry to the train station straight from shopping at Diagon Alley.  In the book, he goes back to the Dursley’s for a month (after all, his birthday is July 31, and there is still a month of summer left).  The Dursley’s get a good laugh as they leave Harry at the train station, completely lost as to where platform 9 and 3/4 is.In the book, Harry has his first run-in with Malfoy when getting fitted for robes at Madam Malkin’s.  It is then that Draco gives Harry his first clue that he doesn’t want to be in Slytherin.  Harry and Ron have their first face-off with Malfoy, Crabbe and Goyle on the train.  In the movie, he doesn’t meet them till they’re at Hogwarts.
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In the book, Quirrell is the one who clues Harry into the reason Snape dislikes him so – that Snape and his father were enemies in school.  If you’ve only watched the moive, you wouldn’t have any idea why Snape hates Harry.
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The discovery of Nicholas Flamel…in the movie, all of a sudden Hermione has a book, and says “Of course!  Nicholas Flamel…blah blah blah.”  Of course?  What?  There is no explanation of how she knows all of a sudden!  In the book, Harry first reads Flamel’s name on Dumbledore’s chocolate frog card, but then he can’t remember where he’s read it.  It’s not until they’re eating chocolate frogs again after Christmas that it comes back to him, and they realize, since Flamel is 600 and some years old, they need to look in old books, vs. the modern ones they had been perusing.
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In the movie, we meet Norbert when he hatches and never see him again.  Hagrid mentions that Dumbledore sends Norbert to Romania.  In the book, he wrecks havoc on Hagrid’s cabin as he gets bigger, and the three finally convince Hagrid to let Ron’s brother Charlie’s friends take him to Romania.  Harry and Hermione sneak the dragon to the top of a Hogwarts tower for the friends to pick him up, and this is when they, and Malfoy, get caught and sent to detention with Hagrid.  Ron is in the hospital wing when this happens in the book, and never gets in trouble or goes into the dark forest – however, Neville does.
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In the movie, Harry, Hermione and Ron only have to get past Fluffy, through the room with the flying keys, and the chess game before Harry gets to the final room with Quirrell.  In the book, there are two more challenges – a troll, which has already been knocked out when the three get to him, and a set of potions by Snape, along with a riddle that they must figure out in order to know which to drink to go on.  Harry and Hermione (well really, Hermione) figure this out; Ron is laying passed out on the chess board.
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In the book, Dumbledore tells Harry “Fear of a name only increases fear of the thing itself.”  These words are spoken by Hermione in the second movie, and not at all in the first.  In the movie, Voldemort is the one who tells Harry “There is only power, and those too weak to seek it.”  In the book, it is Quirrell.

From Stress to Serenity (kind of??)

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A few weekends ago, I heard a life coach named Dorit Atar talk about handling stress when dealing with a difficult situation, such as caring for and loving a child with special needs.  Below is my interpretation of what she spoke about (with some personal nuggets thrown in) – I know her thoughts and advice hit home with me, and I’m guessing they will for most any parent.

Don’t stress over something you have no control over
We feel the most stress when faced with a situation in life that we weren’t prepared for or didn’t ever expect.  Feelings of self doubt come hand in hand with this, and we often feel that we don’t have “what it takes.”  I remember this all too well – the day after I found out about Teagan’s diagnosis, I lay in bed with her and cried (me, not her) for hours, and all I could think, was “how in the hell am I going to deal with this.”  For weeks, I couldn’t imagine how I would ever be happy again.  But as Dorit says, we all possess resiliency.  And it’s true – because I am happy.  Life is what you make of it.

Determine what you can control and what you can’t
We experience stress when demand outweighs our perceived resources (skills, knowledge, etc.)  Aside from skills and knowledge, I’ll add people you know you can count on to that list of resources.  Not having family near at a time like this is a real bummer.  So rely on who you can – for us, it was the school district, a neurologist we really liked, and friends who lent a supportive ear.  Ask questions until you at least feel like you know what steps to take in the short term.

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Take care of yourself
This was a big point of Dorit’s – in fact, the title of her presentation was “Self Care.”  In her words, self care is a NECESSITY, not an indulgence, and must be viewed as an essential aspect of daily life.  Without caring for yourself, you will not be able to effectively care for others.  So get that massage, or go have that drink with a friend – and no guilting yourself!  “You need to refill your tank so that you can continue giving: serve others form the overflow, NOT from an empty vessel.”  The benefits of being good to yourself are numerous – health, happiness, better relationships, confidence, and the ability to set an example for your children of how they should treat themselves.  Don’t abandon activities you used to like – alter them to make them fit.  Laugh.  My mantra when I’m feeling down in the dumps: This is a life changer, not a life ruiner.

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Keep yourself mentally in check
Speaking of guilt, a lot of this can come from the reaction you have when you find out your child’s situation isn’t one you ever would have expected.  But guess what?  It’s okay to be sad.  It doesn’t mean you love your child any less.  You aren’t super human, and will need to cope.  Practice mindfulness and live in the moment as much as you can, without dwelling on the past or worrying about the future.  A therapist or life-coach can be really helpful here.

Nurture your relationships
With your spouse, with your family, friends, etc.  Invest in the relationships that make you happy, and kick to the curb any that don’t (PLEASE everyone, everywhere, do this).  This goes for those involved in your child’s care as well – we’ve switched neurologists, speech therapists, and two occupational therapists because we weren’t satisfied with the work we were doing with them.  Find the people who you feel are best for you and your family.  Create healthy boundaries with people in your life – if people talk to you in a way you don’t like, there is nothing wrong with asking them to change that.  The people who step up to support you may surprise you – life is busy, and those you may expect to always be around might not have time, but then someone you never would have dreamed of may be one of your most enthusiastic cheerleaders.  When I first started this blog, I received supportive messages from people I hadn’t spoken to since I graduated high school (15 years ago now – YIKES!), and had people who I hadn’t even guessed would read offer me ideas for resources, which was amazing.  Don’t be afraid to lean on your support system – as a very wise, very skinny coworker I used to have once told me, “People love to help.” And don’t forget to say thank you now and then.

Take care of yourself physically
Get your body moving – do yoga.  Run.  Dance.  Whatever trips your trigger and gets your butt off the couch.  In the immortal words of Elle Woods, “Exercise gives you endorphins. Endorphins make you happy. ”  Up your fruit and veggie intake, and don’t overindulge in fat, carbs or caffeine.  Get proper rest and take time to RELAX.

Spiritual self care
This is a tough one for me, as I’ve been disgruntled with the man upstairs for some time now.  But this isn’t necessarily religion, as much as it is an acceptance that there are certain things beyond your control.  Meditate, or pray, or if it’s right for you, find comfort in a community church, synagogue, etc.  And be thankful.  Gratitude is the building block of happiness.  As much as I hate the hand my girl has been dealt (supposedly this feeling will go away at some point), I am so thankful for her, and grateful to her for the joy she brings to my life.  The love I have for her is indescribable, as I’m sure most parents understand.  I am thankful for her progress.  I am thankful for those who have helped us and been there for us along the way.  These things are enough to make me happy.  On the good days, that is all there is too it – and on the bad days, I will choose happy, and hopefully someday, it won’t be a necessary choice to make anymore.

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Forgiving When People Don’t Understand

Yesterday Joel and I spent the morning with the most wonderful group of people at the annual Children’s Hospital’s and Clinics of Minnesota Rare Genetics Parents Meeting. Speakers ranged from behavioral specialists to meditation/yoga instructors to parents like us. I learned so many great lessons that I hope to write about in the next week or two – but I have to start with this one.

My friend Heidi, who I served with on the planning committee, brought us this lesson. She was telling the story of her son Liam, a middle school aged boy with a genetic difference. Back in the day when his diagnosis was new, she was talking to a family member who happened to have a very intelligent son – a “gifted” son. This family member told her, completely serious, something along the lines of “having a son who is gifted is just as much of a burden as having a son with a disability.”

Right. Are your diamond shoes hurting your feet as well?

It was in response to that story that someone told her the words I am still hanging on to from yesterday…

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I’ve experienced a very similar situation, so I have to imagine other parents have as well. When I was first sharing the news of Teagan’s diagnosis, a man I respect very highly and really just straight up like, said to me “My kids are going to grow up and leave me, and that terrifies me.  You get to keep her a little longer.” I think dumbfounded would be the word to describe me at that moment – I don’t think I even responded, as the words were just rattling around in my brain, which was unable to be really sure about what was just said.  If only I could show how badly I hope Teagan can live independently someday. I pray that she WANTS to.

Another common situation that makes it clear how hard this is to understand – there are lots of people who say things like “God doesn’t give you more than you can handle” “God only gives special needs children to special parents” or similar sentiments.  As I wrote about here, I roll my eyes internally and move on. Do I think God chose to give me a child with a disability to teach some sort of lesson? No. I don’t think God is an asshole (although admittedly, I really don’t understand why he didn’t prevent it and why, since supposedly “He can,” he doesn’t fix it now). But she’s here and she’s wonderful, and should we do some inspiring while we’ve got the chance?  Hell yes.

The examples above are perfect times to repeat those words to myself – in both cases, people care. They are being sweet and supportive. I know that I am the exception, not the rule, and that without being in the situation there is no way to know how a parent like me feels. Three years ago, I very well might have said the same things – in fact I remember saying to a close friend who was dealing with infertility that it was probably God’s way of having them help a baby who really needed beautiful hearts like theirs through adoption. This person told me later that people say things like that all the time and “It doesn’t help.”  I get it now.

The next example is a little harder to swallow – when people use the word retarded.  When we first got this diagnosis I noticed it All. The. Time. You have no idea how much this can sting when someone you love is actually diagnosed with cognitive delay (the term more used today – thankfully – in place of mental retardation). I don’t think people realize it when they say it – I think of it very similar to the way I used to use the term “gay” in the late 90s. If someone had an idea I didn’t like, I might respond with “That’s gay.” Did I actually mean that idea preferred to have romantic relationships with ideas of the same sex vs. the opposite? Of course not. I had nothing against gay people at all, it was just something I said for emphasis…and it was ignorant. Luckily, thanks to an evolving society, the term isn’t really used that way anymore (at least, around here it isn’t). I’m hoping to see this happen to the r-word as well. The difference is, when people use “retarded” they do mean less smart than the average person, and that is very hurtful.

If you happen to use this word around me, and seconds later realize what you’ve said and wish you can take it back (I feel like I can actually see people internally freak out when this happens), don’t worry. I won’t be mad at you – well maybe I will, but it won’t last long. On the other hand, if you ever catch yourself before using the r-word, imagine me cheering for you and giving you a hug, or a “good job” smack on the ass – your pick. Intentionally offensive or not, this word should go away in general.  Someday, someone is going to use this word in a way that pisses me off. And then I’m going to have to, kindly but firmly, tell them to STFU.

Now we can’t all walk around afraid to speak all the time – I have stories of times I’ve been horribly tactless myself (and more than one friend who loves to remind me of these times). I’m just saying we should all think about our words and actions.

There is this dude with Down Syndrome who I see at the coffee shop below my office almost every morning. He buys his hot chocolate, pulls out his laptop, and does whatever he does. I’ve had to stop myself from trying to buy his drink for him because it makes me happy to see someone with a chromosomal difference grown and out and about on their own – something that the case studies say hasn’t happened with anyone with my daughter’s diagnosis (…yet).  He might appreciate it – because hey, free hot chocolate – but he also might find it offensive.  He’s a grown man out doing his thing like any other guy in that coffee shop.

I so appreciate the flexibility our family is allowed for therapy appointments we need, but other than that, I don’t expect or want us to be treated differently.  I haven’t quite worked out in my mind how to draw that line – are even blog posts like this counterintuitive to that desire?  I don’t know.  I hope not, because I love writing rockinglion and I love hearing what everyone thinks in response, but it does make me wonder.  Maybe I’ll think more about that someday…for now, I’ll forgive myself for not understanding.

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