Monday, October 8, 2012

31 for 21 : Sensory issues????


 I have been told before that my blog makes it all seem so easy, and asked if I ever have hard times.  Um, yeah.  The truth is that most of the time life with Ella, life with Down syndrome, is just that...it's our life.  It doesn't seem particularly hard to me, it just is what it is.  In fact, for the most part, Ella really is easy.  She does great at school, she does great at home.  Sure we have extra therapies and doctor appointments, and yes I have a lot of worries and anxieties about Ella but that is just way our life is.  So, I thought today I would take the opportunity to write about some of my frustrations especially because they are fresh in my mind!

 I have had two not so fun experiences with Ella in the past couple of days. On Friday I was so excited to go on Ella's first Kindergarten field trip with her. We went to Carver Farms to pick pumpkins. Several Kindergarten classes came, and there were lots of parents in attendance too. The parents were not allowed to ride the bus so we all drove out there on our own. I told Ella that I would be meeting her, and she was excited as I dropped her off at school. About 25 minutes later Ella comes off the bus and gives me a dirty look. Ok. I give her a little space, walk behind her and her group. Anytime I try to talk to her she snaps at me. So glad I came. Then we head to the corn maze, which she was terrified of last year. This year she walks through it like a champ, at the end starts yelling "Mommy I did it!!!!!" Phew, she does love me. That was really short lived.

Next on the agenda is the hay ride out to the pumpkin patch. she starts being mean to me again while we wait in line. The owners ask if some of the parents and teachers will walk because there isn't enough room...I quickly volunteer to walk, ha! Ella sits next to her para and looks happy.


 I meet her at the pumpkin patch. She gets off the hay ride and I can tell that she is very irritated. "Mommy the hay bugging me." So I say, in the sweetest voice I can muster "Oh let me help you get it off." I brush off all of the hay that I can see and we head to the pumpkin patch. She did let me help her pick the pumpkins, well she picked them and I got to grab the prickly stem and break them free, because she wouldn't touch them. But she was pretty nice about it.


 Then came time for the hay ride back. "Mommy you ride with me PLEASE???" Awwww. So nice. "Of course I will ride with you!" We get on the hay and get situated and within 30 seconds of sitting down Ella starts freaking out. I mean FREAKING OUT. "I sit your lap!!!" she yells at me. So I pick her up and set her in my lap, but apparently the damage had already been done. The hay had touched her. She whimpered about the hay the whole ride back. When it was time to stand up I took the time to pick every piece I could see off of her, that wasn't good enough. She would not come down the stairs off of the wagon, she was just standing on the step pouting, I could tell she was on the verge of tears. Her class had all lined up for a group picture and her teachers were calling her over "come on Ella we need you for our picture," "hey Ella don't you want to be in the picture with your class?" Everyone was staring at us. Finally I picked her up and said "come on baby, your friends want you in the picture." And she lost it. When I set her down she starts frantically digging at her butt, hand down her pants screaming "I HATE HAY, hay in my butt. I HATE it hay." Over and over and over while pulling her pants away from her butt. I pull her pants back and look and there is no hay. There is no hay on her pants, in her pants, or in her panties. Everyone still staring, parents, teachers, kids, para's. Ugh. I try to keep my cool and not scream at them all to stop looking at us, or yell "yep she has Down syndrome and yep she's freaking out." I know no one was being mean, it's just my own insecurities. I mean, Ella is the only child in that entire school, morning or afternoon, that has Down syndrome. For a lot of these parents it is their first encounter with someone with Down syndrome. It would be nice if Ella could impress them, though I know that's not her job. But you know what I mean? Anyhow, I was seriously on the verge of tears. Finally I just picked her up and carried her over to her class and stood her there.

Fast forward to Sunday. Ella is invited to the birthday party of a little girl that she was in Girl Scouts with last year. The party is at Chuck E Cheese. I know what is going to happen there. I know Ella will be a nightmare. I KNOW she gets overstimulated there and that I leave exhausted and sad every time I go there. And yet, I think hmmmm, well Ella is 6 now, maybe just maybe she has chilled out. HA HA HA. Ella is all excited to go to the party. She signs the birthday card, she picks out a skirt to wear. She is excited. I swear the second we walk in to Chuck E Cheese she turns on me. Why is that exactly? She starts running away from me. I have a quick pep talk with myself, you are gonna keep your cool and you are going to be patient with her. So I tell her that we have to go put her present on the table and get tokens. Finally she comes with me, we get her tokens and she takes off on me again. I catch up to her, ask her if I can hold her tokens so that she can use her hands to play a game, and tell her to pick which one she wants to do first. She yells something at me hits the cup of tokens (which then spills everywhere) and when I bend to pick them up she takes off again. Let me tell you, it's times like this when I wish with all of my heart that I could be a parent that just lets her child run wild with no supervision. I wish I could let Ella go push kids out of line and get in front of them, I wish I could just let her go steal tickets from games while kids are still playing, I wish I didn't care if she stole someone elses ball from the skee ball machine, I wish I could let her climb up in the tunnel thing and get stuck and cry and just not hear her because I am busy not caring. But I can't. It's not me. I like Ella to follow rules. I like her to be nice. I like her to be safe. And I care WAY to much what people think of her, I think, because she has Down syndrome. Needless to say the rest of the party wasn't any better. I sat, like a nice mommy, and covered her ears for her when she freaked because the kids were screaming/singing all the Chuck E Cheese birthday songs too loud. I went up and saved her after she busted away from me and climbed on the stage and stood terrified behind the mechanical Chuck E Cheese because it started moving. I was even nice enough to give her a time out, which really does sometimes help, and had her sit in a booth with me for a couple of minutes. Finally when the party was over I dragged her out crying because she didn't want to leave. Again, I felt like crying.

Doesn't she look thrilled?


Part of me gets mad because, dammit, I just want her to behave. But mostly I get mad at myself. Why do I let it get to me so much? Why do I take it so personally? Why do I care what other people think of Ella? WHY oh WHY do I even subject me or her to situations where I know she will act like this? I was talking to my mom on the phone after the party and she said "well did Ella even have fun?" I don't know. So I ask her hey Ella did you have fun at the party today? "Yeah" she says. I ask her "what was your favorite part? Ella says "you, mommy." Melt my heart. Frankily I think the kid is a butt kisser, lol, she knows I wasn't happy with her. But honestly what happens to that child's brain when we go places? Is it a sensory thing? I think the being scared/bothered by loud noises definitely is...right? I know she is overstimulated...right? What am I supposed to do about it? Will it ever get any better? Why is Ella able to function so well at school? And quite frankly she behaves awesome at home. I know she excels when she has routine and she knows what is expected of her, I know this. I try to talk things over with her before they happen, give her brain time to get used to the idea of something "different" that is about to happen. Another interesting thing though is that she does awesome on vacation too...and of course while on vacation her schedule is completely off, and yet she does really well. I really really wish that I could get inside her head, be her for a day, and understand how everything works for her. Is she really having fun when she is in that state? Because if she is then it may be worth it. Maybe. I did order her some headphones to help with the noise stuff....parades, sporting events, fireworks, movie previews, anything that she sits holding her ears at. Hopefully they will help!

11 comments:

Becca said...

Ah, I could totally have written this myself. So, so, so like Samantha, the same. exact. thing. I never know what her triggers are, when she's going to be easy and awesome, when she's going to completely go off on her own tangent. I also wonder what happens to her brain in those situations. You've got BIG sympathetic hugs from me here...

Lori said...

And another BIG sympathetic hug from me. Anna's behavior is so unpredictable and it is driving me nuts. And, I have to say that I am jealous that Ella is well-behaved at school, because Anna is not -- and talk about adding unwanted stress. =(
Anyway -- you are doing great with Ella -- and it shows! She does Down syndrome proud! =)

Cate said...

oh man. Yeah. I recognize this. I will stop myself from writing a very very long comment.

Tami Leitz said...

Great post, great questions. I wish I knew what was going on in Claire's head on the mornings like today she wakes up "don't want to go to school today!" how is today different then yesterday when you couldn't wait to get to school??? I'm just reading this now but I think it's kind of funny that today my post was about all the places I kick myself after I take Claire too. Why do I keep doing this to myself and to her? I think you are so brave to keep trying. It is hard to put yourself and your girl out there all the time. You are a great Mommy!

RK said...

I'm exploring some more official sensory evaluations this week. Though Braska's issues look a little different than you're describing, we also see the unpredictable behavior sometimes. She can be a total peach for 3 weeks in a row at school and then one day be a total terror. Since she's the only kid with a disability in her little private elementary school, I also find myself with way too much of the "why can't you be a good representative?" thing.

Bottom line, sensory stuff is SO hard. To know if it's a cause and to what extent. And some I think is just the age, whether chronological or developmental... I wonder if some of the issues here aren't just pure bad attitude. Where did my super sweet, very compliant little girl go?!?

RK said...

BTW... I mean OUR issues with B are bad attitude... not Ella's!! :o)

Anonymous said...

You are not alone! I can so relate to this. My daughter Kate is 5 1/2 and also is the only child in the entire elementary school with Ds. The only other child with Ds is a senior in high school now, so I too am trying hard to have Kate make a good impression of what Down syndrome is all about, and myself too :) Our daughters have alot in common, very similar in their actions, habits, and naughtiness!

Kimberly said...

I feel your frustrations! And while they aren't always all consuming sometimes I find acknowledging to myself that sometimes this is hard helps me move on and figure out what I need to.
So glad that you took the time to write out your thoughts!

Kimberly said...
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Kimberly said...
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Sweet Pea's Mommy said...

I hope you don't mind, but I linked to this post on my blog. It fit so well with what I was writing and I finally caught up with your blog this past weekend so it was perfect timing! Thank you for sharing!!!!