Wednesday, October 1, 2014

Hey Down Syndrome, sometimes I still struggle with you...

A few days ago I posted on Facebook that Down Syndrome and I were once again at odds.  You see, Tera's extra chromosome and I have a love/hate relationship.  I love my daughter and so in part, I have to love her having DS as well.  It's a part of her.  But what I don't have to love is the challenges that it presents to her.  Do I think it will make her a stronger person? Yes.  Do I think she will always overcome those challenges? Yes.  Do I have to like that she has so many challenges already? No.  Do I think it will make me a better mom than I would have been otherwise? Not always.  It's hard.  It's really hard.  For her and for us.

I don't like that she is three and a half and still in the 2's room at daycare.  But she hasn't quite mastered the prerequisites for moving up yet.  I don't like that throwing objects, all sorts of objects, is still a problem that we face with her.  I don't like that she is still struggling with potty training.  I don't like that she sometimes seems to lack the ability to refrain from hitting people when frustrated.  I don't like that she is unable to communicate all her wants and needs verbally to everyone.  And I don't like that I don't have the answers to fixing these problems.

Tera had a particularly difficult week at preschool last week.  There isn't always an apparent reason when these bad weeks happen which can make dealing with the situation all the more difficult.  Of course we could chalk it all up to her still adjusting to Zoey and not being the center of attention anymore, but she's been acting pretty normal at home (normal meaning just that, not perfect but not making me pull my hair out).  We've been communicating with her teacher at preschool and her social worker and we think we might all have a plan of action to help Tera be more successful.  Because I'll be honest, when she has a bad day at school, I'm not angry with her, I'm heartbroken.  Everybody has bad days, little kids included.  They probably actually have more than adults because they struggle with trying to understand why they feel a certain way and then even if they know, how to express themselves appropriately.  Tera doesn't necessarily understand all the various feelings AND she lacks the ability to cope with them because of her communication skills.  She can't tell me (yet) that she pushed a kid because they took something from her or that they were getting too close to her.  She can't tell me that she didn't sleep well because of bad dreams and that resulted in poor decision making.  I am not saying DS is responsible for all her bad behavior, it's not, but it has hindered some of the skills and behaviors that are necessary for acting more appropriately.

What does make me feel better is that she is learning these skills.  At school they talk about different feelings and they work with her on the best ways to express those feelings.  They ask for our input on what works at home and how they can implement that in the classroom and we do the same thing.  It really does take a village with that kid.

So Down Syndrome, here we are.  I love that you have brought awareness and more love than we ever imagined to our family.  But I don't love that my daughter has to work so very, very hard for so many things that other kids, and parents, take for granted.  I love that you have made me cherish and appreciate so much more, her accomplishments.  But I don't love that it takes her so long to reach some of them no matter how hard she tries.  I know you're not going anywhere, and some days, weeks, months, and years that will be harder for me to accept than other times.  It's still hard to see Tera around other typical kids and know how she's different from them.  But it also makes me so proud to see how far she's come.

Today marks the first day of October and the beginning of Down Syndrome Awareness Month.  This is the first year since Tera has been born that I won't be in the classroom to spread awareness to my students.  But I can continue doing it through this blog and the girls' Facebook page.  I am going to say right now that I'm admitting my lack of time right now and not even going to try to promise 31 days of blogging this year, but I will try to post something every day for the rest of the month to show my love for Tera and her extra chromosome, and all the other very special people and families we know because of it as well.  So please check in daily to see what you might learn and consider sharing some of that information with the people around you.  It's a lot harder to feel scared and uncomfortable with something you know more about and that's what this month is for.

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