Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Saturday, January 12, 2008

Tough, Emontional Days

First of all, I want to thank everyone for their comments and support regarding the situation with the assault at school. I know that some things are going to come back at us (actually, they already have). The County Attorney's comment about "maybe it's time someone teaches her this isn't ok." is not the only one we've heard.

I wish lots of things for Angela. One of the things I wish is that she "only" had Down Syndrome. If she only had Down Syndrome life would be a bit easier. But that is not the card she (and we) were dealt. Instead she has a brain injury on top of a cognitive disability, which results in some pretty aggressive behavior, with zero impulse control. These things don't happen often, but they do happen. If it weren't for the additional problems we would not be where we are today. We would not have the day to day struggles that we have with her, she would have friends.

If you're reading this, and your child goes to school with my child, I want you to think about something. Please know I'm not asking you to pity Angela. I'm asking you to think about what her life is like from HER eyes. Do you know that Angela has not been invited to a single birthday party in TWO YEARS? Do you know she has NEVER ONCE been invited to an overnight by anyone other than one other child who is also disabled? Do you know that every Monday morning she goes to school and hears the other girls talking about the fun times they've had with sleep-overs during the weekend, and wonders why she's never been invited? Do you know she's has never once been invited to a birthday party by one of her regular ed. peers? Imagine what it feels like to be her. If I were here, I'd be angry and screaming for attention too. Instead she comes home and creates an entire school's worth of invisible imaginary friends, who just happen to be named after all the people in her class. Why? BECAUSE SHE'S LONELY! Imagine being so lonely at 11 years old that you have to create imaginary friends.

Don't get me wrong, I understand that she's the "forgotten one" when it comes to her mainstream peers. She's not in the classroom enough for her to be on the top of the invite list. Every week I hear from parents who tell me "My daughter comes home and talks about Angela all the time. She just ADORES her." while in the back of my mind I'm screaming "SO INVITE HER TO A DAMN BIRTHDAY PARTY!!!! BE A REAL FRIEND!!!!"

And at the same time there is another voice in my head that says, "Why would they want to invite her? They don't know what she's like outside of the classroom. All they remember is the time a year ago when Angela pulled their daughter's hair. They don't hear about the hugs Angela gives their sons and daughters every day. They don't know how Angela idolizes their children. They don't know Angela!!!"

So, tonight I'm crying for my daughter. I just want for her what every mother wants for their daughter, and I can't give it to her. I can't make it happen. I can't protect her from the world, and I can't change what she has. This is something I cannot fix. I think it's the worst feeling I've ever had as a mother.


Mommy to those Special Ks said...

Leah, I'm so sorry things are so hard for Angela, it truly isn't fair. Have you thought about maybe inviting some of the other kids in her class over to your house? I don't know how Angela would do with that, but I was just thinking maybe the other parents are a little worried that they can't handle her? (Not that that is right, I'm just thinking out loud.) Next time a parent tells you their child adores Angela maybe you could ask them over for a playdate or something. You may have already tried this, so feel free to just ignore me. I just feel so bad for her! If we lived closer we'd come over and play! Hang in there.

Leah said...

Thanks Renee. Actually, last summer for her birthday, and then two other times I invited them here, in hopes that there would at least be a reciprocal invite. Their kids seemed to have fun here, and everything was fine, but it never went further than that. This week Angela invited two different friends over for tonight, but neither wanted to come. Like you said, I know she doesn't get invited because the other parents probably feel like they can't handle her. See? That's why I want to take this all away, so she doesn't have to experience this. I think it's a very cruel joke for God to play on her.

Kathie Brinkman said...

I'm sorry too. I can't say anything other than--you're right. It hurts, it sucks and it's not fair. Angela is blessed to have you as a mom. Lots of moms would have walked away from her or sunk themselves into alcoholism or drug abuse to escape the pain and frustration. You haven't done that. We love and care about you and Angela.

Anonymous said...

I am sorry it is so hard for you, but most importantly, for Angela. you really think she understands what she is missing, or is it just your feelings...knowing what she is missing? When your other children were her age, did they invite over children with cognitive delays? I know it is hard, and I have no answers, but I don't think it is really fair to be disappointed with the other parents. Plus, don't you think if she did have a good friend who was so called "normal", that would cause even more issues? I mean, then she would find out how much she is really being left out. When her friends are going on dates, getting drivers licenses, etc., won't she hurt more not doing those things? I don't know...I would probably just want to hide away and protect her forever. I really think you are an awesome mom...

Leah said...

To Anonymous: When my boys were in Kindergarten through 8th grade we lived in a tiny little town in rural Minnesota. There were no cognitively disabled students in our district. They were sent off to a neighboring district..including Angela. Later I open enrolled the older kids to a different district and yes..they did bring home students who had disabilities. My kids were comfortable with differently abled peers. Once they got into high school, I have no idea who most of their friends were. By then our family was in turmoil in just about every department.

Umm Angela does have "good friends" who are typical. At least at school. They include her in everything AT SCHOOL. That's my point..they DON'T include her outside of school. So are they really "friends?" or more like "groupies?" Sometimes the kid with the disability becomes the classroom mascot in a way. I've seen it many times with the students I've worked with over the years. I'm not sure why you'd think Angela won't go on dates. Apparently you don't read the news, and see all the fantastic stories of the students with Down Syndrome voted Homecoming King/Queen. Or their wedding photos. Or know those who drive. (I personally know several adults with Down Syndrome who drive.) I'll have to post more of that stuff to my blog, because clearly you (and probably others) have some misconceptions about Down Syndrome.

kaysdee said...

I haven't been in this game for as long as you, but I share some of the same feelings. As you know, Jack doesn't "just" have DS and life is hard for him. He knows he can't walk, he wants to, but he can't. He sees other kids doing things and he is very frustrated. He can't eat, he stares at things we're eating, but won't/can't try it. He has major outbursts every time we try to go out anywhere, it is hard! I feel like a failure as a mother sometimes, for me, for him, for our other kids. You saw him in my video, if that was my Jack for even half the time, life would be EASY, even if he still couldn't walk or talk. The behaviour is the hardest part for me. Those days when you question everything are tough. But, we make it to the next day, we get the payback in a smile or a laugh and that keeps us going. You are a wonderful mother, I've learnt so much from you.