Teagan’s Progress: ’15/’16 School Year Round Up

I don’t do these posts too much anymore, partly for Teagie’s privacy, and partly because I feel that a better use of this blog is to give insight into what it is like to be a part of a special needs family.  I want to introduce this world to family, friends, everyone, so that this part of life isn’t something that should make anyone uncomfortable.  But as it’s the end of the school year, it seemed like a good time for an update.

Teagan had a very happy year at Arbor Lakes.  She was in a class of six children with a variety of special needs.  Along with her teacher, Ms. Katie, there were two classroom assistants, and then a physical, occupational, and speech therapist that she worked – all of whom were wonderful.

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Her last progress report, which happens every six months, wasn’t that great.  And I’m not even mad – yes Teagan has her own strengths and challenges, but I’m glad her teachers give it to me straight, and that they are holding her to high expectations.  The most reoccurring problem is that Teagan looks to adults for guidance and approval – at this age, we’d like to see her more interested in engaging with her peers, as well as participating in activities on her own, without seeking adult approval.  One of her goals was to play or participate in one activity on her own for five minutes…we’re still working on this one.  She is easily distracted by other students or the classroom around her.

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She also still requires a lot of prompts and enthusiasm from adults to complete tasks.  If she doesn’t want to do something, she give an enthusiastic “NO,” or knocks the materials on the ground, or acts silly and tries to avoid whomever is trying to get her to complete the activity.  Sigh.  This is something we will continue to work on.

One area we are very pleased with is her speech.  Between school, private therapy with our speech pathologist LeeAnn, and her little sister becoming a talker (and WOW is Alice a talker), Teagan is being pushed and making great progress.  She LOVES going to see LeeAnn, and asks almost every day if we’re going to “Lee-Ahnns, af-ta nap.”

We work on a whole host of different things with LeeAnn, from new words to specific sounds to how to drink out of a cup (this is difficult because of Teagan’s low tone – she compensates by wrapping her tongue around a straw or cup).  LeeAnn comments regularly on how pleased she is to see Teagan doing something new every week, and is very happy about the increase in her Mean Length of Utterance.  What is that?  Oh, let me show you what I’ve learned!  😉  It’s basically the number of words, with extra points for things like making a world plural or changing tenses.  “I like dog” would have a MLU of 3.  “I like dogs” would have an MLU of 4.  Last week, Teagan said to me “Alice all done in the bath,” which is a really long sentence for her!  Her words come out slowly, and not pronounced perfectly, but I’m so glad she is gradually becoming more able to share the thoughts going on in her head.

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Working hard with LeeAnn

We will miss the teachers and therapists from this past year very much, as well as a wonderful little friend Teagan made at school.  Her name is Molly, she has down syndrome, and Teagan talked about her EVERY day.  Molly was sick the last day of school and I’m so bummed I didn’t get a picture of the two of them together, they were the cutest little pair.  Luckily, Molly lives pretty close to us, so her mom and I will make sure to get the two buddies together.

Next year Teagan will start her third year of preschool, and…drum roll please…BE IN A REGULAR CLASSROOM!!  Three days a week, she will be in a class with typically developing children, and one day a week she will be in a small special needs class.  The teachers from this year and Joel and I went back on forth on this a few times.  Because Teagan is timid, we didn’t want her to be left by the wayside in a regular class…but we are eager for her to learn from other children, plus this will make kindergarten less of a shock.  So it is something we are going to monitor closely once the school year starts to make sure it is the best situation for her and she is getting the most out of school that she can – but I’m excited to give it a try!

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Fun in the neighborhood

As for now, Team Petersen plans to enjoy the summer.  We have a few of our regular summer trips planned – up north to Breezy point, down south to Iowa for family and friends – as well as lots of neighborhood fun.  We are lucky to have families with two year old twins, a three and a five year old, and a one and a half year old, all in our backyard  – never a dull moment around here!

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Teagan’s Progress – 2014 Wrap Up

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My little turkey with her turkey.

I can’t believe the whirlwind 2014 has been – in a good way.  I used to do a way better job at keeping this blog updated :-/  I’ve blogged a lot less lately, for a couple reasons:

1. Two kiddos!  Baby Alice joined us in April, and oh how that little girl has stolen a chunk of my heart.

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Doesn’t she look like a little angel?  😉

2. I work part time now.  While this is AWESOME in that I get two extra days a week with my girlies, it also means I often use the after bedtime hours I used to blog during to do my half a day per week from home work.

3. I need it less.  I think this is a really good thing.  Blogging was definitely a means of coping for me – writing down how T is doing and how I’m feeling was a great emotional release.  There are definitely still extreme moments of anger, but I find myself feeling more peaceful these days than I used to.  That is a subject for another day.

Anyway!

School girl!

Teagan is a big three year old now!!  Once she turned three (literally two days after she turned three) she started going to school two half-days a week.  There are four children in her class, who also have some reason to be in this early program, but due to rules about privacy the teacher couldn’t tell me why (I asked, so nosey!!).  

This was a big change for us; I was so nervous about my little one meeting lots of new strangers and being somewhere I wasn’t familiar with so often.  Because Teagan was the last in her age group to start, we basically had pick of what was leftover as far as classes to be placed in.  We had tense conversations with Kristin, Teagan’s 0-3 special education teacher, met with one teacher at one school, didn’t feel good about it (although the teacher was lovely), had some tense phone calls, had our para neighbor share her thoughts on the best fit for T, met with another teacher, OT, and ST at another school in our district, and finally felt comfortable having her start there. I had to apologize to Kristin for having an attitude, and she told me “Don’t ever apologize for advocating for your child.”  Maybe I’ll just try to be less bitchy about it next time ;-).

Before T started, she had to have all kinds of assessments done – new OTs and STs came out to the house to try and gauge where she fell in terms of development.  This was incredibly frustrating.  The ST came at 3pm, which was right after Teagan’s nap, plus T didn’t know her, so she was basically non-responsive.  When we went to our first meeting at the school, the woman leading the meeting stressed that Teagan was behind…yes, we were aware.  My guess is that a lot of times parents are in denial and don’t want to believe that their child needs help, so they have to be very firm about it – but for parents who have known for a long time that we are not in a regular situation, and who have asked for extra help vs. refusing to accept it, it was fairly irritating.

Luckily, the build up was far worse than the actual event – T is doing great in school!  When I pick her up, either her teacher or the ST who is in the classroom gives me a little glimpse into her day – that she loved climbing in the gym, or making animal sounds, or having circle time.  Teagan actually sits for 20 whole minutes during circle time while they read books, sing songs, etc., which is amazing.  In her backpack each week, we get a sheet telling us what they are covering…and LOTS of art projects.  

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One of my favorite art projects – it’s supposed to be a Christmas ornament, but instead of looking Dickens-ish, she looks like she belongs with the Demon Barber of Fleet Street.  Hilarious.

One day I showed up for pick-up about 15 minutes early, so I sat in waiting area in the hallway.  Teagan’s class came walking along, headed back to the classroom from the gym, (luckily she didn’t see me) and she was holding one of the therapists hands with the HUGEST smile on her face.  It made me so happy to know that she was enjoying school as much as her teachers told me she was.

A sad thing that happened is T’s private ST retired.  She wants to spend more time with her own kids, work on her blog, and explore a few other endeavors, which I can’t blame her for…but she was a REALLY good ST.  I had no idea how much went into teaching someone to talk when it doesn’t just happen naturally.  An example: we are working on Teagan saying “wee.”  So we get her to say “oooo” and then “eeee.”  Never would have thought of that (you just tried it, didn’t you??).  Her communication has made progress, but is still DRASTICALLY behind.  She understands a lot, can say a little, and can communicate some stuff that probably no one but me, Joel, and maybe daycare would understand.  She calls her blankie “B” and does the sign for blanket, which makes sense.  She also calls a clock “Bah!” which not so much…but I’m telling you, she means clock every time.

Now that I’ve written all this, there is a lot milling around in my mind that is left to be said, thought about, written about.  My fears around acceptance for Teagan among her peers as she gets older.  Making sure she has her niche and doesn’t feel like an outsider.  The relationship between her and her sister – Alice’s favorite activity is whatever Teagan happens to be doing at the moment, which Teagan isn’t exactly fond of ;-).  Realizing, now that I am seeing what happens with a typically developing child, just how much work we’ve done.  The previously mentioned increasing moments where my heart is at peace (PLEASE let this continue).  And of course, the progress Teagan will continue to make – here’s to great things in 2015!

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!!!

Teagan’s Progress – Happy 2014

“Joel feels that we will see a path similar to what we’ve seen in other therapy areas…very slow progress, and then all of a sudden a super quick uptick.”

These are words from my cranky last post about Teagan’s therapies – guess I should listen to that man more often!  After a frustratingly slow couple of months, 2014 is looking pretty amazing!

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NYE at Mark and Laura’s.  T was not excited about the glasses.

Actually, the first exciting thing happened at the end of 2013.  When my parents came to visit for Christmas they brought their cat, which Teagan loves…and calls “Ditty.”  ??!!  So yeah, she won’t call me Mama, but she knows kitty.  That child.  😉  We also switched her to a toddler bed, which has been…entertaining.  And mostly successful.

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New toddler bed…and the first night

The second exciting thing…the sippy cup.  YES YES YES!  Finally!  It’s like one day she just decided, hey, I’m going to drink out of this now, and hasn’t looked back!  It’s been two weeks since that wonderful Friday, and now she’s only having bottles at nap or bedtime.  Hopefully in another week or two she’ll have kicked them to the curb altogether!  I tell you, that day she decided to use the sippy cup, there weren’t happier parents than Joel and I.  Today when I printed T’s workout sheet for the week, I deleted the sippy cup line – felt soooooooo gooooooooood!!  Continuing the subject of meals, she’s also been attempting to stab food with her fork, rather than have us put the food on the fork and hand it to her – she’s been successful a handful of times!

The third exciting thing is speech therapy.  I have been kicked out of the room at Children’s therapy (apparently I am a distraction ;-), but Melissa tells me her sound mimicking is getting much better.  Joel and T had school district speech therapy with Jackie on Thursday morning, and it was awesome…

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Translation: the letters and ahh, etc. are sound mimicking.  Roly Poly and Row Row are songs with actions – so that is action mimicking.  Mimicking is so important because that is how kids learn to say things, by repeating what they hear from others – normally they just do it, but in T’s case, we have to teach her to do it.  And the tube is something we got paperwork mailed to us in, that she likes to hold up to her mouth and make sounds into – it’s disgusting, but you take what you can get.  Another song she loves is Head, Shoulders, Knees and Toes – she taps her head until we start singing.  I’m pretty sure I sang this song more today than the cumulative of the rest of the world combined.

And lastly, we’ve seen some progress with her fine motor skills.  She is putting some large puzzle pieces in their spot, and shapes in her cookie-jar shape sorter.  She’s even coloring a tiny bit.  She is far behind, I’m not kidding myself – but after working on these things for so long, it’s nice to finally see some action.

Other than that, we had fun Christmas celebrations with both sides of the family…

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Opening some pink bibs from (of course) Grandpa Petersen

…and T and I started swimming lessons again – she could not wait to get back into the water.  She is so happy at swimming lessons that it’s almost counter-productive.  Every time I hold her out in front of me to show her something, monkey cheeks for example, she kicks her legs and flails her arms and laughs, and it’s so funny that it makes me laugh.  We might not be the best students – but I’m fairly certain we are having the most fun.  During play time, we play with her baby doll a lot; less than three months for her to get ready for her little sis!

Joel and I are feeling pretty good overall right now.  Of course I have no basis for comparison.  I know T’s behind, but I’m not all that familiar with 2 year olds other than her, so by how much isn’t obvious to me.  I’m trying not to compare – she is making progress, and for that, I am grateful.  Until next month!

November: Speech Therapy and a _____ Colored Balloon

First things first: Teagan would like everyone to know she’s going to have a little…

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SISTER! Thanks to Teag’s godmother Molly for the fab pictures (which I obviously haven’t purchased yet).   We are so excited!  My doc had us get a level two ultrasound (we opted out of the extra testing, but she didn’t give me much choice on this ;-)) and baby girl looks great!  I find it a tad bit amusing that my husband, who can grow a beard in a day, is very passionate about sports, and likes his truck and red meat cooked to a lesser temperate than I would consider edible is going to have two darling daughters.  So precious :-).

We’ve been in speech therapy for a month and a half now.  We do this once a week at Children’s, and twice a month with the school district.  Speech therapy looks a lot like playing – sometimes I have no idea what they’re going for, but Teagan really seems to enjoy it, so what the heck ;-).

We practice making noises – she’s got D and M down, and is getting better at T, V, and H.  We’re struggling with B…not as in she can’t make B’s, she can – she just doesn’t do it when you ask her to.

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Melissa and Teagan making noises in the mirror so she can see her mouth’s shape for different sounds.

At Children’s we also work a lot on baby sign language.  She’s pretty consistent with more (actually, it’s a more/again hybrid, but we’ll take it), go, up, and all done.  Working on sign doesn’t mean we’ve given up on talking – it’s just a step while she’s working on communicating with her voice.  Now that she’s learned more, for example, we work on making an “mmmm” sound when she makes the sign.

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When Teagan makes the sign for “go” she gets to go down the slide.

Jackie, our school district therapist, has given us some fun, homemade tools to work with.  We use these faces to make different animal noises.  Ideally, we’d hold up the animals and make sounds, then give to Teagan and she’d make them.  Right now, she just gets a big kick out of holding them up for Joel and I to make the sounds.

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A favorite of Teag’s is her songbook.  We’ve been able to tell for a long time how much she likes music.  This book has small pictures that depict a dozen or so different songs, and a velcro strip on the front.

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We put two pics on the front and she picks the one she wants and hands it to us.  This helps her with recognition and making choices.

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“Sing ‘Bingo’ please Mommy!”

So we sing a lot around our house.  Row Row Row Your Boat is her favorite.

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Slightly fuzzy picture of us “merrily merrily merrily-ing.”

Progress feels…slow.  At times, non-existent.  But we’ve been trying to teach her the more sign for like a year, and that she’s gotten four signs in about a month tells me something must be working.  Melissa sees progress because even though she doesn’t always make the sound you want her to, she usually tries (for example – we say B, she says D), and at this age, often times the biggest challenge in speech therapy is the kiddos not trying at all, or not even paying attention.  Joel feels that we will see a path similar to what we’ve seen in other therapy areas…very slow progress, and then all of a sudden a super quick uptick.  This happened with crawling, walking, and feeding herself.  I will try and be as optimistic as my husband :-).

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October Round-Up: The Good, The Bad, and The Ugly

October was an eventful month for us.  The 4th was our 5th wedding anniversary, as well as the one year anniversary of Teagan’s diagnosis.  The 21st was her 2nd birthday, which meant lots of family visiting, lots of friends and lots of fun.  Plus we had Teag’s six month assessment, began speech therapy, and life was just all around frantic – which has inspired me to separate this month’s update by The Good, The Bad, and The Ugly.

The Good
Teag’s school district PT, OT, teacher, case worker, and (new addition) speech therapist joined us early in the month to go over her six month goals and set new ones.  Overall this was a very good meeting – Teagan had achieved or made great progress in all of her goals. Here they are:
  • Feed herself at least half of a meal 2 out of 3 meals per day – check.  Next: using utensils (in the couple weeks since her assessment, she’s already done great at this).
  • Play with toys involving fine motor skills (place rings on ring stacker, coins in toy treasure chest, push buttons) – check.  Next: shapes into shape sorters.
  • Get around home and daycare with independent walking skills.  BIG CHECK.  She is all over the place.  Next: jumping, getting up and down stairs on her own without crawling.
  • Advance in receptive and expressive skills – definitely a check for receptive – we can say “go ring the bell,” and she will walk across the room to her little scooter and ring the bell that is on the handle.  We can also hand her something and say “take this to mom/dad” and she knows exactly what to do.  So she isn’t saying a lot, but I am 100% confident her understanding is growing.  Next – talking, or at least trying to talk more.
Also in the good category was Teag’s b-day party.  Lots of quality time with the grandparents, and fun with friends and halloween costumes.
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 Present time!
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Teagan and Mia playing with her new kitchen from Grandma and Grandpa!
 
Trick or treating was fun too – once Daddy convinced her to wear the hat part of her costume.
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Daddy modeling the spider hat
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Trick or treat!
 
The Bad
Given all I’ve written above, I feel a bit ungrateful for having this section.  But there are definitely things that are still incredibly frustrating – if you’re a regular reader of my updates, I apologize for being repetitive, but the STUPID SIPPY CUP.  AAAHHHHHHH!  She just wants nothing to do with it.  And she’ll walk around drinking her bottle, tipping it up toward the sky…if only I could make her understand, if she’d just use a sippy cup she’d still be able to see where she is going.  I really think she could use a sippy cup, I think she’s just stubborn.  She must get that from Joel.  Can we just all decide it’s not weird to see a 5 year old with a bottle?  😉
 
Also, I’m not sure how much progress we are making in speech therapy.  It’s been a month…but Melissa, her ST through Children’s told me with the little ones it takes some time to make progress and she isn’t worried about it yet.  So I will try to be patient.
 
The Ugly
My mind has been in a dark place this month.  I try not to put on a “poor me” attitude – my life is better because Teagan is in it, and I know how much she loves us, so what do I really have to complain about – but sometimes I get so overwhelmed.  Speech therapy (while I’m incredibly glad we’ve started it) just adds another list of exercises we need to do, and there are not enough hours in the day.  This pregnancy has been a bit rougher than my first one and I’ve had a lot less energy – so when it comes to Teag’s bedtime and we haven’t done X number of exercises, I feel incredibly guilty, and then I stress out about when we are going to do them that week.  There is so much to do and I’m so tired.  And it is never going to let up – there will always be another thing to work on…and I don’t mean like “it would be nice if my daughter is good at this skill,” more like “I hope my daughter and I will be able to have a conversation someday.”  You know what makes me really sad?   Ads for Montessori schools.  And I don’t even think I would have sent Teag to one!  Every one I see or hear is a reminder to me that I’d love to be doing things to give her an edge, and instead I’m fighting tooth and nail to not let her fall any further behind.  A fight that I’m not always winning.  Then I see dirty dishes in the sink and it’s almost enough to send me into fits, and if it happens to be a stressful week at work, forget about it.
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So how do I attempt to pull myself out of this funk?  A checklist of exercises, so I can see how much we do over seven days.  Relying on Joel to lead when I feel like I’m on the verge of a mental breakdown.  Scheduling things that make me happy – playdates, family holidays, nights with friends for Joel and I.  And talking to my friends.  Teag’s God-mother Molly recently said to me “All that love you have for Teagan is a lot of pressure.”  Damn that girl is smart.  I’ve also found a great resource in space’s VP of HR, who has recommended I visit a life coach – no I don’t want to spend an hour a week talking to a therapist about my feelings, but she said she might be helpful in helping me prioritize, be in the moment, and take care of myself.  I think I’ll at least have a chat with her – it would be awesome to be at therapy and not stressing about being late to work, or to be at work and not having an anxiety attack about what time dinner will be on the table that night.  I’d also like to ease up on the mommy guilt – on top of everything I’ve just described, I feel guilty about being stressed because it’s not good for the baby I’m carrying right now.  Oy.  I’m sure lots of parents have similar feelings.
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I sometimes hear kind comments from people who care, about how strong I am.  What I normally say is “I don’t have a choice” – which isn’t true.  I do have a choice.  The alternative would be to remain in my beat down, defeated state, or to ease up on the work we do with Teagan, which would lead to a lag in her progress.  Which is not an option.
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I will end with a few therapeutic words from Florence + The Machine.  These lyrics are from a song I listened to a lot when I was still very angry about Teagan’s diagnosis, and that still brings a tear to my eye when I scream-sing it on the way to work 🙂
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And I’m damned if I do and I’m damned if I don’t
So here’s to drinks in the dark at the end of my road
And I’m ready to suffer, I’m ready to hope
It’s a shot in the dark aimed right at my throat
‘Cause looking for heaven found the devil in me
Looking for heaven found the devil in me
Well what the hell I’m gonna let it happen to me, yeah
 –
Shake it out shake it out, shake it out shake it out, ooh whoa
Shake it out shake it out, shake it out shake it out, ooh whoa
And it’s hard to dance with a devil on your back so SHAKE HIM OFF! oh whoa
                                                                            – Shake It Out

Teagie’s Progress – Summer Round Up

Who’s a slacker?  This girl!  I can’t believe I haven’t blogged in a month and a half.  A few people have asked, where are the round ups?  Thanks for asking, it’s so nice to know people care!!  Life has been busy lately and by the end of the day when Teagie goes to bed and I used to write, I’m pretty pooped.  But my motivation is renewed, I hope to be back at it!

Last time I wrote, I told you how Teagan was starting to really enjoy swim lessons.  By the last few classes, she would laugh when we got to the pool, she was so excited.  When testing day came, another teacher came over to watch Teagan do her backfloats and zooms under the water (Teagan generally hates the former, loves the latter).  After she was done, the two teachers put their heads together and chatted for a moment, and then said “Okay, we’d like to recommend Teagan take Back Float Baby 2 next time.”  My exact words were “Are you sure?!” I was so surprised!  I knew she had been doing LOADS better than the first few weeks of class, but lots of kids take the classes multiple times, which is what I had been expecting.  So proud of her!  My little Teagie fish!

Teagie has mastered everything in her everyday objects bag – we are now establishing words in groups of threes according to different parts of the day.
Meal times: cup, fork, spoon.
When changing clothes, pants, shirt, socks.
Playing with her toys: dino, ball, book.
While her receptive communication is making great progress – the list of words we know she understands is close to 20 (and I’m sure it’s more than this, but it’s hard to test everything) – she doesn’t say a lot.  Her consonant sounds are back (WOOHOO!) so now we’re embarking on speech therapy!!  We have her 6 month check with the school district in October, so we will figure out the mix of speech to her other therapies there, and we are on the waiting list for speech therapy at Children’s.

Physical therapy is going well, except Teagie still can’t get up from the ground unless she pulls herself up on the furniture – so she can’t be in the middle of the floor and stand up without something to push off of.  Melanie (PT) said she’s be only two or three months behind in PT if it weren’t for that one piece, so Joel and Teag have been working pretty hard on that.  And at Children’s we work on stairs and an up/down obstacle course a LOT, building up those baby quads.

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Teagan and April at Children’s therapy.  

For occupational, we continue to work on sippy cup…we are relying on the bottle less, which is awesome.  We also practice small switches, so turning her toys on and off, and light switches, as well as drawing.  I bought some wedge crayons, so that has been fun – possibly more so for me than her ;-).

Behaviorally, Teagan is starting to test us more.  She will inch herself toward something she isn’t supposed to get into, for example, the dog water bowl, stop when we say “No,”…wait a few seconds and try again, all the while with this impish grin on her face.  It’s so cute I struggle not to laugh while disciplining her – Joel has suggested we dress her up as Gilly from SNL for Halloween.  Michelle said she decided to push one of her friends at daycare this week – terrible twos??

We had a lot of fun as summer came to an end.  My dad and newly retired mom (woohoo!) came to visit for a long weekend, Teag loves to play with her grandparents.  We also spent a weekend at Breezy Point with our great friends Mark and Laura and their kiddos Gavin and Mia.

Teagan loves her friends at daycare, and gets lots of time with our friends’ kids as well.  I am fearful of what will happen as she grows older, if/when differences between her and other children become more noticeable.  I always want her to have a group of friends and not feel isolated – or I at least want to combat that feeling as much as possible.  So Joel and I are going to make sure she has lots to be involved in – sure, to help her make progress, but also just as a normal kiddo.

October is a big month in the Petersen house hold – our 5 year wedding anniversary, the one year anniversary of Teagan’s diagnosis, and her 2nd birthday (the first two both on October 4th, coincidentally).  When I think back to the way I felt a year ago, it was horrible…so confused, defeated, and unsure of where to turn – completely lost.  The love and support we have received from our parents and friends has been invaluable, as was talking with the professionals.  Talking with other parents in similar situations, who know how we felt, was maybe the best for clearing the dark clouds out of my heart and relieving some of that isolated feeling.  So, I am working with a woman named Janice, one of the wonderful genetics counselors at Children’s, to establish a Genetics Family Group.  We’re just getting things off the ground, and are looking at a variety of events – therapeutic for the parents (both pre-diagnosed and brand new), educational, play-dates for the kiddos, and hopefully some just for fun, social events for the parents as well.  We’re just getting moving – but I’m really excited about this!!

OH – almost forgot – we had an eye doctor appointment this past week, and contrary to my fears a few months ago, the doc says her eyes look great!  No redo surgery anytime soon – guess I can add that to the list of things I “knew” would go wrong ;-).

Teagie – June/July Round Up

Hello friends!  I didn’t post at the end of June, because I didn’t feel like there was a lot to say…but July’s been gangbuster!

Communication

The list of words Teagan understands is getting longer by the day.  Clap, wave, stomp, night-night, dance-dance, ear (thanks Grandma and Grandpa!), foot, splash, shake, book, ball, shoe.  I may be forgetting some – we keep a list on the fridge so I can give her teacher a report when she comes to visit.  On the downside of communication, the number of sounds T makes has gone down – she’s really resorted back to only Ds and Ns, and has picked up this LOUD scream that definitely happens most when I’m around but not looking directly at her, even if I’m holding her.  Kristin told me to keep an eye on it, but not worry too much yet, because it isn’t uncommon for kids to stop talking when they are fine-tuning their motor skills.  I’m still nervous.

But anyway – it’s awesome that she is understanding so much.  I’m going to post a video of her demonstrating her new moves (especially dance-dance – so cute) at some point, but it’s tough, because once the phone comes out, she has a one track mind.  So fun to play with mommy’s phone!

Eating

The eating…are you guys ready for this…it’s gotten better!  OH PRAISE THE LORD IT HAS GOTTEN BETTER!!  It’s so nice to drive home from work and not dread the dinner that is coming up.  She feeds herself some foods fabulously – more than just pancakes ;-).  Peanut butter and jelly or toasted turkey and cheese, oatmeal, cream of wheat, puffs, yogurt melts, scrambled eggs, hamburger, cookies.  We still have to feed her veggies – but she doesn’t spit them out, so I’ll take it.  She likes broccoli with cheese, and this mashed cauliflower recipe I found on Pinterest http://pinterest.com/pin/16255248626382085/     (which I love to – although admittedly, there is more butter and salt involved when I feed it to myself).  And she definitely has a thing for muffins – just like her mama!

Fun!

We have been doing a lot of fun things this summer, starting with swim lessons at Foss.  If we were still in the first three weeks, this would be in a section titled “Trying to Pull Mommy’s Hair Out” vs. Fun.  Teagan would scream and cling to me like a vice – luckily, the teacher is very patient and continually encouraged me not to give up and that eventually she would love it.  Teagan usually loves water, so I had a theory that it was the situation (it’s loud, it’s a weird temperature, lots of strangers around) not the water that was bugging her.  I called Julie, who is on maternity leave until her twins can drive (HA!  Julie, if you’re reading, I tease because I miss you – although we love Kristin too!  Can I have both please? ;-)) who said lots of kiddos – different needs or not – have trouble with new stimuli, and need some time to adjust to them.  Most people think “oh, she’s one, she’ll grow out of it,” which I suppose is true – but giving them some time to adjust or offering them extra security (a blanket or favorite toy, squeezing them extra tight when entering new situations) can help.  So last time, we went to swim lessons 15 minutes early, and just sat on the benches in the pool room watching the class before us.  Class was a BREEZE!  She smiled and laughed, she gave the teacher high-five, she was excited to go under water.  At the end of class, I still had all my hair and my swimsuit was where it was supposed to be.  Teacher and the patient mother who shares class with us gave Teag a round of applause.  Success.  We did our swim lesson routine with Maddy (Becky’s daughter) at Lisa, Joe, and Addie’s pool the day after that – lots of smiles and fun!

We had a visit from my very best friends who I met in college in June, Molly and Tracie – time with these girls is good for my soul.  And Teag had fun too!  We both finally got to meet Tracie’s sweet baby girl Hope.

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Teag reading books with her God-Mother

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Fun on the trampoline with Tracie and Hope

We spent the 4th of July weekend in Iowa with Joel’s parents, as well as Aunt Jaime, Uncle Jeff, and Teag’s cousins (THREE of them now).  We took Teagan to her first parade – she liked the horses and tractors, not a huge fan of sirens.  We went to Joel’s hometown reunion, which included a street dance – there are few things more fun than a small town Iowa street dance.

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Waiting for the parade!

When we’re not busy driving to Iowa (2 times in 3 weeks…and one more to go for my 15 yr reunion – ish) we are playing at the pool, boating with friends, and having general summer fun.  I hope by the end of summer, she is making lots of sounds again, and using her sippy cup.  We shall see!

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Boating with Scott and Levi

Teag’s Progress – May Round-Up

This month was filled with ups and downs.  Well I guess only one down, which was pretty big…but sandwiched between two BIG ups, so we’ll try and focus on that.

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Teagan looking cute on the deck

Up number one…we’ve figured out a drug to stop her seizures!!  I haven’t seen one in at least three weeks now.  We started her on Kepra just after Christmas, which I believe is pretty regularly the first drug they try on kiddos with epilepsy because it is often successful and has the fewest side effects (common ones for seizure meds are tired, cranky, loss of appetite, loss of balance).  The Kepra didn’t cause any side effects…it also didn’t work :-(.  She had fewer seizures, and her doc thought they were less intense – but they only lasted a split second anyway (thank goodness), so I really didn’t see much of a difference.  We got as high as 4 ml twice a day before deciding this wasn’t going to cut it, so we started on Depakote.  For a while, we were on 8 ml of Kepra a day and 5 ml of Depakote, and the seizures stopped – and Teag was CRABBY.  If it was possible for the eating to get any worse, it did, she had NO interest in food.  Screaming every night at dinner.  So, we took the Depakote down by a ml a day and…finally…thankfully…she was happy again AND we still haven’t seen a seizure.  We’re now weening off the Kepra – down to 5 ml a day, with 4 of Depakote.  By the end of June, we’ll be done with Kepra all together, and my baby’s body will no longer be a chemistry experiment 🙂

Up number two…we had our six month appointment with her geneticist, Dr. Mendelsohn, who is one of the best in the field from what we hear.  She was THRILLED with Teagan’s progress, couldn’t believe that she was only 18 months.  This up is kind of bitter-sweet – I get so excited when doctors, therapists, etc. are so impressed with Teagan…then I feel bad, because if they are that impressed with her progress, that means there are lots of other children who are dragging their expectations down.  Such an unfair world :-(.  We went to the zoo last weekend, and as we were leaving there was a 12 or so year old special needs child having a meltdown.  I felt for the child, as well as for the two women trying to calm her down…I wanted to tell everyone around her to stop staring and give them their space.  I suppose these are the type of feels Joel and I will have now that we didn’t have before.

On that depressing note, the downer…Teagan’s eye has started drifting again :-(.  It looked great for a week or two after surgery, and then one morning I was giving her her before daycare milk in her high chair, and noticed the drift was back.  I was hoping it was just because she had recently woken up and was very tired, since the doc said when she was tired or sick we might still notice it…but it hasn’t gone away.  There are times her eyes look great, but Joel and I both feel that she is probably going to need the surgery again.  Such a bummer, my poor girl.  Her doc says the healing process is 3 months, but I just can’t believe we would still see drifting this often :-(.  That makes us very sad, good thing we have…

Up number three – WALKING!  OMG, so fun and exciting.  The most steps we’ve counted so far is 13.  She’s been taking 3-5 for two weeks or so now, and I was itching to announce it to the world via Facebook…after she walked half way across the living room to her babysitter (Miss Tippy!!) last Saturday night I decided that was good enough, and I could call my girl a walker.  So happy about this.  It is so fun to watch her gain confidence and even take pauses in her steps and change directions.  She holds her arms up in the air (for balance I assume), Joel and I say she’s pretending to be a zombie.  I wonder if she likes turtles.

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Zombie walking Teagan

Sessions with her therapists/teacher have been great – we’re working on a lot of words now.  We have a bag of everyday items that we go over twice a day – cup, spoon, shoe, book, etc.  She LOVES books…my parents babysat her while Joel and I went to our friends Lauren and Rusty’s wedding, and my mom got a kick out of her always taking the book you were trying to read to her and pretending to read it herself (she flips through the pages while babbling).  As far as OT goes, her six month meal goal is to feed herself half of every meal, which would be AMAZING.  She did a great job tonight…hopefully we’re finally on to something!  Kristin (her teacher) commented last Friday on how she seems much more “with it” – I’m not sure if this is due to the decrease in meds, or just because…but I’ll take it!  She is so sweet and happy.  My favorite time of day is walking up the stairs when I get home from work, because when she sees me, she is so happy she starts laughing.  Or maybe she thinks I’m funny looking ;-).  So in love with my girl ❤

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Petting the goats – she LOVED them – at the MN Zoo