The Things Teagan Taught Us

When I wrote about the cookies, my friend Becky commented on how Teagan has opened her and her family’s eyes and hearts.  It got me thinking about everything I’ve learned being a special needs parent that I wouldn’t have otherwise.  I could talk all day about these lessons – but thought it would be more fun to hear from people with differing levels of association with special needs families.  So I did some asking around – here are a few of my favorites.

The question: what has having someone with special needs in your life opened your eyes to or made you realize that you hadn’t before?

“It has made me grateful for the little things; things you would just expect a child to do can really be milestones.”                   – Maryellyn, Grandma

“Before I knew Teagan, I naively thought of a special needs child being completely different from a typical child, and I think a lot of people think that way.  I’ve realized she has a very similar personality, likes/dislikes, attitude, etc. as my own kids.  ”                                      – Morgan, neighbor

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“I’ve learned that parents of kids with special needs still like to talk about every day kid stuff.…when to switch beds, potty training trials, how to overcome picky eating, etc.  In other words, kids with special needs are, well, kids.”                                                                            – Laura, friend

“I’m not that important.  Sometimes at the grocery store the baggers are men and women with special needs.  I used to get frustrated having to wait for them to bag my groceries. But you know what?  My life is not so busy or important that I can’t take that time to chat with them or ask them how they are doing.  Maybe it will make the people who love them so happy that someone took the time to say hi.  Maybe it will make their day.  It actually makes mine.”                                                  – Tracie, friend

“I appreciate life so much more and see that people with disabilities can really be angels on this earth showing us the true meaning of life, if we let them! Acceptance, love, community,strength and faith…  these things matter!  Not whether you buy a house, it’s size, your car, your job, your weight, your looks.  If you can see past all that, you can know real love, experience true friendships, the simple joys in life.  We should look to those who accept their challenges head on, or are different than everyone else, as inspiration to be more like them!!”                – Lisa, friend

“I want to help and have so many questions, but sometimes the biggest help I can be is to be a friend and not ask them.  Because sometimes the parents need a break from it.”           – DeAnn, a friend who is also an educator

“So many kids with special needs are incredibly happy and at the end of the day, they want to love and be loved, the same way all people do.  We get lost in material items or even accomplishments sometimes, thinking “If I just had that one thing…” or “If I could just do this…I’d be happy…” But I think my time with kids with varying learning needs has taught me that they love and want to be loved just like anyone else and can be extremely happy.”                 – Amy, friend, cousin by marriage, also an educator

“In the past I was ignorant in the use of words.  Not realizing that they can be hurtful when used incorrectly.  Also, I now give special needs teachers and families so much respect for the work and care that they give; I see how much work is involved in each goal and accomplishment.”  – Jason, neighbor

“Kids don’t make the rigid judgements we do.  There are children of varying skill levels in my daughter Maddy’s class.  I’ve tried to encourage her to be accepting, and even more so to appreciate the things that come naturally to her.”                                                                                  – Becky, friend

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“I’ve learned not to place limits on anyone. I have an Uncle who has special needs. Troy can be sneaky to get some things he wants – obviously not always a good thing – but it taught me he is a lot smarter than we sometimes give him credit for. I’ve also learned to SMILE. I don’t know what it is, but when Troy smiles big, everyone smiles! I’m not sure if it is because he is a pure soul or that he exudes so much happiness when he smiles.”                                                                        – Tiff, neighbor

And the one I’ll leave on comes from Uncle Jeff (my brother).  He said “I have to admit, I never really thought there’d be someone in my family with special needs so it was something I never really thought about, but then it happened.”  Word.  One of the biggest lessons I’ve learned is that it (whatever “it” is) CAN happen to you.  So be kind.  Shove it all in there – your heart has room.

He also said “I love my little Teags very much”  – I agree with him on that point too 🙂

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Special Needs Parenting: Explaining My Child to Yours

So that one time, when it took me a whole year to respond to a question…

A good friend asked me this question last October.  When she asked, I was really excited to give a profound, eloquent answer.  An answer that would open peoples’ minds.  An answer that would make lives better for kids with special needs.

Problem was, I didn’t have one.  Because it’s a really tough question.

“What do you want me to tell my child about yours?”

Oy.  How do you explain to children that everyone is different, and some are even more different?  How do you illustrate empathy?  How do you teach that just because something is unfamiliar to you, it doesn’t mean it’s scary or something to make fun of – a concept some adults have trouble accepting?

After a lot of thought, I’ve boiled it down to something I think kids can understand.  It’s a subject everyone likes, and as it’s December 7th, it’s timely:

Cookies.

Cookies, and the recipes used to make these wonderful treats.

Cookies

There are recipes for all different kinds of cookies.  Sugar cookies, chocolate chip cookies, some with M&Ms, some that taste like gingerbread.  Cookies with hershey’s kisses, cookies with sprinkles, and even cookies that have frosting.  Raisin cookies, giant cookies, cookies in sandwich form.  Heck, some cookies even look like a brownie!  There are more cookies and cookie recipes than you could possibly list – but at the end of the meal, when you get right down to it, they are all still cookies.

People are kind of like cookies.  We are all different, and we are all made from a recipe that tells us what we will be – except instead of “chocolate with coconut,” our recipe calls for brown hair and blue eyes.  Or maybe an ingredient that is a little more extreme – like not growing as tall as everyone else.  Or not being able to learn as fast, or being able to talk the way everyone else does.   It all goes back to the recipe.  We don’t know why some recipes have ingredients that aren’t the same as others, but that’s okay – while I love me some oatmeal raisin, what a boring world it would be if that was the only cookie there was.

Now here is the part I can’t equate to cookies…teaching children to accept those who are different.  Some children are more nurturing than others – I’ve seen it.  They are perhaps more willing to be patient, or even enjoy being the special helper.  And some kids are just busy being kids, and that’s fine too.  But what I hope everyone teaches their children, is that everyone wants to be included, and everyone wants to be accepted.

That is a subject for another day.  Hmmm, I’m thinking…maybe something about pies.

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Special Needs Parenting: And Harry Potter

Having a child with special needs opens your eyes to a lot of things you might not have noticed otherwise.  This post is about different types of people I’ve been lucky enough to cross paths with – some I never would have known, and some whom were there all along – equated to Harry Potter characters (because, why not?).

Mrs. Weasley
Mrs. Weasley is a WORRIER.  She is forever concerned about your mental state, your safety, and if you’re eating enough.  At times it can be a bit overbearing – there is a chance when you told a Mrs. Weasley about your child’s diagnosis, she cried more than you did.  But it all comes from a place of love.  Mrs. Weasley will ALWAYS be there for you.

Molly Weasley

Sirius Black
This person is a blast from the past, someone you never had any idea would be a part of your life again.  And then suddenly, although you haven’t spoken since high school, they are popping up through the fireplace (okay, maybe on Facebook) to tell you how much they are rooting for your family.  And WOW does it feel good to know they are in your corner.
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Hermione
The researcher.  No time for moping about, there is work to do!  This is the friend who is sending you information on everything they can find on your child’s condition, therapies and resources.  When you’re so overwhelmed you’re not sure what to do next, rely on your Hermiones.
Hermionie
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Gilderoy Lockhart (before we realized he’s awful)
Ah, Gilderoy Lockhart, always smiling and never quite grasping the seriousness of the situation.  The friend who keeps saying “but she’ll be okay, right?” Gilderoy Lockharts aren’t too bad to have around – sometimes they make you feel that a rare chromosomal diagnosis is no harder to deal with than a cage full of cornish pixies!
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Dumbledore
I’ve run into a lot of wise people over the last three years, but the wisest of the wise I hereby dub Dumbledores.  Always there with a calm demeanor and steady advice when you’ve been entered into a tournament you are far too inexperienced to play in.  The therapists and doctors who make you want to crawl onto their laps and cry like a baby because they are actually helping you when it seems like no one could…but you won’t, because you’re far too tough for that.
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Cornelius Fudge
Striving to be a Dumbledore, the Cornelius Fudges are the professionals whose leadership never seems to be right for you.  They have good intentions, but at the end of the day, the ministry has to let them go (the ministry = you).
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George Weasley
The George Weasleys of the world are obviously the jokers! People who are able to make you laugh about this crazy situation.  An example of my George Weasley – one day I was throwing myself a pity party, talking with two friends about how much harder it was for me to be a parent than for the majority of my peers.  George Weasley said to me, with a completely straight face, “I’m pretty sure I have a more difficult life than you.”  I stared at her, incredulous…and then she burst out laughing.  And I did too.  Not all people could have gotten away with a joke like that, but with a George Weasley, somehow it’s okay.
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The Grey Lady
This is one of the sadder characters on our list.  Grey ladies are ghosts.  They’re almost impossible to find.  When you get your diagnosis, somewhere in the back of your mind exists this list of people who you think you will rely on.  Grey Ladies are on this list, and then poof, they are gone faster than a ghost through a Hogwarts wall.  Don’t let Grey Ladies get you down, they exist in all walks of life. This just happens to be the one you are on.
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Ron Weasley
Your steady.  The one who knows when to listen to you vent, when to talk parenting with you, and when all you need is someone to sit calmly by you in a train compartment while you eat your feelings.  Treat your Rons to a chocolate frog every now and then – even though they’d never ask for one.
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Cedric Diggory (before his untimely demise)
Cedric Diggorys are a little bit older, a little bit more experienced, and a LOT bit amazing.  Cedric Diggorys are other special needs parents.  People whose children are in their teens, who are smart and inspiring, and you aspire to be like them – because you are sure they can do anything.
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The Mirror of Erised
Granted this is not a person, but it applies.  You could spend your life thinking about what could have been.  And miss the wonderful things in the life you have.  As THE Dumbledore says “It does not do to dwell on dreams, and forget to live.”
dwell
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That was fun!  Anyone I missed?  Now…how can I make a post combining special needs parenting and all ten seasons of FRIENDS (I kid, I kid…or do I???).
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Mrs. Weasley gif courtesy of http://gifhuntmaker.tumblr.com/post/129169627289/julie-walters-on-harry-potter
Dumbledore gif courtesy of http://lifeandliesofanawkwardfangirl.tumblr.com/post/128535300135/a-few-of-my-favorite-dumbledore-quotes

Special Needs Parenting: How I Feel When You Brag About Your Kids

I recently asked friends and blog readers if they’d be comfortable sharing some questions they had for someone in my situation, but might be a bit uncomfortable asking.  The question that was by far the most asked, comes from a very kind place – and actually wasn’t one I had expected:

“When I talk about the successes of my (typically developing) child, do you wish I’d stop?  Does it get to be too much?”

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My girls with the kiddos of some of my besties.

To put it very simply: no.

I might get a little jealous sometimes. There is no denying that. But I would be far sadder to find out that you weren’t sharing the joys of raising littles with be because you were worried about making me feel that my family wasn’t up to par.  I too am very proud of my daughter(s) and like to brag about their achievements. And besides, I love your kids.

Okay, maybe I don’t even know your kids – but if you are a friend of mine, I immediately care about them and want them to do well by association. If you aren’t a friend of mine, I still care about and want your child to be successful, because children are awesome. Children are sweet and innocent until the rest of the world gets a hold of them. Children are a product of the environment we create for them.  Not to get all Whitney Houston on you, but children are the future.  We live in a world where people do a lot of really awful things to each other, and the only way to escape this is to raise human beings who are kinder and wiser than ourselves.

This question is tough, because the answer might be very different based on the child, on the parent, on the family’s position along the journey toward acceptance.  It even arises among those in the special needs community – I have been in meetings with other parents before, to look across the table and realize I’m venting about my daughter’s slow speech progress to someone who has never heard their child utter a single word.  We all have different struggles.  My advice is to know your audience – if they aren’t the open book type, pay attention to their reactions and it will probably be pretty clear whether or not they want to hear more.  If they are a close friend, just ask – I can only speak for myself.

So please keep sharing stories of your child’s successes with me – I want to hear how they are saying full sentences at one and a half and how they were potty trained in one weekend. I hope your child loves to learn.  I hope your child is caring.  I hope your child is happy and considerate and open minded and accepting of other people.  And I hope they are so smart that they change the world.  Who knows – maybe they’ll even figure out a cure for trisomies.

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Fun at the park with friends.

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What are the Uncomfortable Questions?

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I have a neighbor who thinks everyone is on this earth for a specific reason. While I’m not sure I agree, I do appreciate her outlook  – and that she was willing to tell me what my reason was 😉 My blog. 

It used to be a lot easier for me to write. My emotions were totally out of check, and writing gave me a way to deal with them. I’m thankful I don’t feel as lost as I used to, and want to use RockingLion as a platform for broader conversations about living with special needs (although I’m sure there will still be the occasional emotion-riden post ;-)). Why do I want to do this? Because people are afraid of things they don’t understand. So if I talk about my family’s special condition, how our life is a little different, then maybe people will understand a little bit more. Maybe they won’t be afraid. Maybe the next time they’re at the playground and see a child who is a little bit different, they’ll think “I bet that kid is like Teagan – I bet they like to play and make new friends.”

Okay, so to get to the point: I’d like to know what people want to know about. What are the questions you have but are uncomfortable asking. I’d love it if you’re willing to share!! Comment, or send me a private message via fb if that feels more comfortable. I’ve never been insulted by a question – assumptions, yes, but never a question.

In my attempt to get reenergized about blogging, I’ve asked a few of my besties the question I just asked you. A few examples they’ve given, that I’m excited to write about at some point:

  • When I talk about the successes of my typically developing child, do you wish I’d stop?  Does it get to be too much?
  • How do you want me to talk to my child about yours?
  • Do you like people asking about how therapy is going and where she is on her disabilities?

Have any to add? If so, I’d love to hear from you!

Elphaba, Attitude and a Glass of Water.

“Something has changed within me…something is not the same.”

Okay okay, enough Elphaba – we’re not here to to quote musicals (although that sounds like a fun blog post, amiright?!?).  I have been feeling a change lately.  I’m sure it will be ever evolving, and that I will experience changes like this in good and bad ways for the rest of my life – but just for now, at this minute, I’m pretty happy about it.

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The change is about anger.  When I guest posted on DivineintheDaily.com for the “Special Mamas” series about being mother to a child with a rare genetic disability, my post was riddled with anger and doubt.  I’m not sure if writing that piece was a turning point, or if it is just coincidence, but lately I’ve been seeing glimmers of light through The Shadow that has lain over me since Teagan’s diagnosis.  It is becoming clearer that way I feel about the struggles our family faces is something I have some what of a choice in.  I can’t change her chromosomes, but I can change the attitude I approach the situation with.

I know my life will continue to be an emotional roller coaster, but I’m going to enjoy being at one of the peaks for a while.  When I mentioned these thoughts to my friend Sherry, who has a jr. high aged son with a different rare genetic disability, she shared the story below with me.  If you’re been struggling with anger, frustration, something you can let go of, you might appreciate it too.

A psychologist walked around a room while teaching stress management to an audience. As she raised a glass of water, everyone expected they’d be asked the “half empty or half full” question. Instead, with a smile on her face, she inquired: “How heavy is this glass of water?”

Answers called out ranged from 8 oz. to 20 oz.

She replied, “The absolute weight doesn’t matter. It depends on how long I hold it. If I hold it for a minute, it’s not a problem. If I hold it for an hour, I’ll have an ache in my arm. If I hold it for a day, my arm will feel numb and paralyzed. In each case, the weight of the glass doesn’t change, but the longer I hold it, the heavier it becomes.”

She continued, “The stresses and worries in life are like that glass of water. Think about them for a while and nothing happens. Think about them a bit longer and they begin to hurt. And if you think about them all day long, you will feel paralyzed – incapable of doing anything.”

Remember to put the glass down.

(original source unknown)

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An Act of Go…oogle

Every now and then, I’ll get a notification from WordPress that someone has commented on my blog.  Most of the time, it is a comment on one breakfast recipe I posted like two years ago (everyone likes it, except for one lady who told me it was a waste of time and money – oops) or else this one on wine and cheese, thanks to Pinterest.  But the comment I want to talk about today was different.

It was from a man named Ruslan who lives in Russia.  His newborn baby daughter had been diagnosed Trisomy 12p, and he was trying to find information.  I’ve mentioned the rarity of Teagan’s diagnosis before, and the lack of easily accessible information – those of you well versed in SEO will know that for my itty bitty blog to show up in search results, there must REALLY not be anything out there.

Anyway – in his comment, Ruslan stated his situation and asked if I would please email him, as he and his wife had been unable to find much information or guidance in Russia.  Surprisingly, although I was thrilled to get his comment, I was nervous about writing back.  I long to bond with other parents in my situation, but now that the opportunity was staring me in the face, I kind of froze.  What do I tell him?  How do I portray the difficult road that is our life, coupled with the joy Teagan brings me every single day?  How do I offer him support from this far away, and when I know nothing about available resources?  What if I can’t help him?

When I did email him back, we shared the stories of our daughters and other children.  We lamented living in places where it snows in April.  Thankfully his English is better than my Russian 😉  My heart went out to him when he mentioned that he and his wife felt they were on their own because they couldn’t find many resources or anyone who could educate them:

“The geneticist whom we approached for consultation couldn’t even give us a hint about this syndrome. He said in his career we were the only family with such syndrome in Russia. And this guy is a super experienced geneticist in one of the best clinics in Russia. I guess we’ll need to be on our own now.”
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I remember all too well those first, super difficult days, when no one will give you a straight answer about what is to be.  And when you feel so alone because your teeny tiny baby has some crazy condition called Trisomy 12p and WHAT the hell is that?!  Hard to believe I was first asking myself those questions two and a half years ago.  Feels so far away, yet somehow like only yesterday.

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Different countries, similar weather patterns??
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Teagan and Ruslan’s daughter have some similarities rooted in their trisomies, and some differences.  They both had a hard time sleeping (even more than what you’d expect from a new baby) and eating, as well as low muscle tone, which leads to issues with basically anything muscle related – delayed rolling, crawling, walking, etc.; this is also the reason for Teagan’s two lazy eye surgeries.  So far Ruslan’s daughter is seizure free – join me in crossing your fingers for them!  They had some success with a massage based therapy, which we heard of back when we were first diagnosed but didn’t try.  They are still in the early phases of tests and scans and discovering what all has been affected.  Luckily, one thing is for sure – they both have parents who are working hard to give them the best life possible.

I told him about Teagan’s history.  How we tried to make up for the low tone with muscle strength through physical therapy.  About epilepsy and organ tests and all the progress she has made.  And mostly, I tried to be supportive – I tried to be the friend I wished I had when I was new to this situation.

When I asked Ruslan if I could share this story on my blog, he pegged my thoughts exactly:

“I don’t mind if you write about us on your blog.  I think people who might have faced similar problems should know that they are not alone in this world and that there are a lot of other stories of real people who are lucky to overcome the challenges you and us have faced.”

Word my friend.  Two and a half years after our diagnosis, our family has finally found a friend who knows how we feel.  They are on the other side of the world and speak a different language.  All it took, was an act of Google.

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Will There Be “Enough”?

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We all know Minnesota winter can get looooong (and it’s only January).  Last Saturday, my daughter and I met a friend and her daughters at the play place at the local mall for something fun to do out of the house.  I’m pretty much always aware of the differences between my little love and other children – probably more so than I should be, a fault on my part – and Saturday was no exception.

As we entered the play place, my daughter took it slow.  She needs some time to process a new environment, even though she’s been there before.  It was loud.  It was colorful.  There were many small bodies hurling themselves up ramps and down slides.  I brace myself for the scream that comes when she is uncomfortable, and unable to communicate that feeling.

As she warms up, I encourage her to go play, wanting her to get into the chasing games with other children.  Or to go down a slide without coaxing from me.  It takes my girlfriend and I half an hour to have a maybe 20 sentence conversation, because I am constantly bombarded with “Mama”s and a little hand outstretched to take me where she wants to go, because at three years old, she still can’t tell me.  

Seeing children of a similar age side by side with her increases my anxiety.  On my good days, she has a disability and that’s just the way it is.  On the bad days, I get lost in a tizzy of worries I’ve worried 100 times before.  Today, it’s the mall related version.  And about the days when peers are the ones who matter, and her family’s love, attention, and company isn’t enough to make her feel complete.

What happens when she wants to walk around the mall alone, without being in arms reach of Mom’s hand?  Will she be independent enough to do so?

What happens if she wants to be a regular teenager, at the mall with girlfriends, like I so enjoyed doing?  Will there be friends to get ice cream with, giggle obnoxiously with, just feel RIGHT with…will she find these companions, a group in which she fits?

What happens when she wants to go shopping for a dress to wear to look pretty for a boy at a dance?  Is this even in the developmental cards for her, and if it is, will a boy who makes sense for her exist?  Will she ever know the nervous excitement of finding out that someone special likes her back?

Raw.  Always.

There is so much to worry about.  So much beyond my control.  So many things I want for her, so many pieces to fit into her own personal puzzle of a life fully lived.  There is no question that her pieces will be different than your typical puzzle, and that is fine…but will there ever be enough?

She snaps me out of my spiral with an enthusiastic “Mama! Mama! Mama!” and a tug at my arm.  She drags me across the play place, excited to show me the G (her favorite letter) in the “NO PARKING” sign on the back of the “highway” slide.  She has the G.  She has Mama.  And she is so happy.

Today, I am enough.

Today, at least for today, I am enough.

I’ll cherish that for just a little while longer.

Teagan’s Progress – 2014 Wrap Up

Turkey
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.

Al
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!

Triso-wha???

I don’t spend a lot of time talking about my daughter’s diagnosis, although I guarantee you there isn’t a day “Trisomy 12p” doesn’t enter my mind.  But I’ve gotten a few questions lately, so I thought I’d do some educating on this craziness…plus, I just felt like it 😉  I need to write about her progress soon, she’s up to so much these days – but for now, incase you’re interested, here is a refresher on Trisomy 12p.

What is Teagan’s actual diagnosis?

Trisomy 12p, the mosaic version.

What does that mean?

Trisomy – extra chromosome material
12 – the 12th chromosome
p – the p leg
Mosaic – only some of her cells are affected, not all.

So basically, the p leg of her 12th chromosome is duplicated, and the extra leg is flipped upside-down, in some of her cells.  It looks like this:

Chromosome

That extra little bloop at the top isn’t supposed to be there.  

Good to know if this whole digital marketing thing doesn’t work out, I can probably find work illustrating for the science field.

Did Teagan get this from you or Joel?

No.  While this is genetic, it is not hereditary.  Lots of genetic things are hereditary, and trisomies can be.  But in the case where a error in genetic code is passed down from the mother or father, all cells would be affected – so the child would not have the mosaic version.  Teagan’s trisomy happened sometime after fertilization.  While we knew, since she has the mosaic version, that it was not inherited from Joel or I, we both were tested when we decided we wanted to have another child. As expected, we were both clear.

So how did it happen?

Sometime when the little ball of cells that is now Teagan was developing, an error was made in one of the cells.  This isn’t that unusual, from what I’ve learned; usually these erroneous cells are disposed of naturally by the body.  But this one stuck around and began multiplying like the rest of the cells that make her her.  According to a blood test done by T’s neurologist, the amount of incorrect cells (approximately 72%) indicate that this happened around gestation week 2.  Before I even knew I was pregnant.

Why haven’t I heard of this before?

This condition is SUPER rare.  Think of how many people you know with Down Syndrome, a far more common genetic condition – I’m guessing not very many.  Down Syndrome, which is Trisomy 21, happens in approximately one in every 700 births.  Trisomy 12 happens in approximately one in every 50,000 pregnancies, and most of those pregnancies end in miscarriage.  But my steel-trap uterus decided that that wasn’t going to happen – heck, it didn’t even want to give her up at 42 weeks #cutheroutPLEASE.

(Actually, my doc said it was probably communication gone wrong between baby and my body due to the genetic difference that didn’t put me into labor.  But I prefer to think of my uterus as a steel trap.)

So what does it MEAN?

Global delays.  Teagan is behind developmentally across the board – some areas more than others.  The one that is most noticeable is that she can’t talk like a typically developing 3 year old can.  If you want to read more about the diagnosis, you can check this out http://tinyurl.com/kgyqmmf but it will probably just scare you.  There isn’t a lot of research because it is so rare.  And that’s okay – I don’t want to put any limits on her.  When I first read the Unique report after getting her diagnosis, I was TERRIFIED.  But she walks.  She (kind of) talks.  There is no doubt in my mind that she will be able to go to the bathroom like a big girl in the near future – who knows what she will achieve.

From a health prospective?

Teagan has low muscle tone and epilepsy, which are both common with this diagnosis.  Her seizures were super quick – so quick we didn’t realize what they were for a long time.  We started her on Kepra, which I believe is the most common med for kiddos with seizures – but it didn’t work, and it made her hella cranky.  She’s now on Depakote (Valproic Acid), and we haven’t seen a seizure since June 2013.  Her neurologist said at her last checkup that if we go 6 more months without one, we can look at decreasing or even stopping medication.  That would be awesome – I think it would make her eat more and fall down less, as decreased appetite and dizziness are common side effects of the meds.  And it’s always nice not to have to drug your kid.

How has this changed you?

It’s made me a less carefree person.  It’s made me bitter.  It’s made me question God.  It’s made me scared for the future – what will happen when I can’t take care of her anymore?  What will I do when she comes home from school upset because someone called her that nasty word?  It’s made me realize how little control I have over anything.  It’s made me envious of parents with “normal” lives – not because I’m dissatisfied with my child, but because I know they don’t have the extra work and anxiety that I do.  It’s made me more sensitive.  It’s made me appreciate my husband in ways I’m sure I never would have otherwise.  It’s made me more grateful – for both my children, and for all the progress Teagan has made.  It’s made me more aware of what is important in life; I don’t care how much money I make if my daughter can’t tell me she’s thirsty.

If Teagan could process all of this, what would you want her to know?

That her, her sister and their daddy mean everything to me.  That I’m so incredibly proud of her.  That any frustration I feel at this situation is at the unfairness of it all, and not for a single second at her.  That she is the hardest worker I’ve ever known.  That when I think about how she dances, how she plugs her nose what someone says “stinky,” or how she says “BaByyyye” with incredible enthusiasm, it makes me smile every time.  That there are times I watch her play and am overwhelmed with how much I love her.  And that whatever her path in life ends up being, her father and I will be right beside her, and eventually behind her, every step of the way ❤

“You and me together, can do anything, baby.” – Dave Matthews