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!"

Tuesday, June 05, 2012

When Life Hurts

Its the last week of school and time for end of the year celebrations. Asher graduated from Kindergarten

I cried, but not because he finished kindergarten, since be'll be doing it again next year. These 8 weeks he's been in school were more of a practice run than anything else.

Axel, growing like a weed, finished his first full year in school and is doing amazingly well. He has surpassed everyone's expectations for this year both in language and academic learning. Clearly the decision to put in him in the full-immersion ASL program for deaf students - even though he has normal hearing - was absolutely the right decision.

I cried after his IEP meeting but not for the reasons you'd expect.

Angela had her Freshman choir concert. Its kind of like a little celebration having finished their Freshman year and  moving on to become Sophomores.

I cried, but not because she finished her freshman year and is growing up.

I hate to make what should be a happy, joy-filled post depressing, but it is these very life events that have hurt this mother's heart.

What hurt is Asher's graduation. Although he loves music, especially the hand motions the accompany children's songs, he stood on the risers and banged a ball on his tongue and cheek or sucked on his tongue, completely lost in his own world. I know he's capable of participating with the other kids because he did the exact same songs a couple weeks ago for Grandparent's day. It wasn't that he's not ready yet, it's that he wasn't able to participate on this particular day. He stood out as "different". Yes, other parents commented, "He was so cute!" Really? It didn't feel "cute" to me. I guess maybe my problem was I know the other parents don't know Asher's history, so they really have no idea what a big deal it was for him to be standing up there. In my headed I wanted to stand up, look at them all and say, "Let me tell you about Asher..." But, why should it matter to me? Why should I care what they think? Why couldn't I see just that??? How far he's come....After their performance there was cake. I had to feed him like I would a toddler. It was fun in that he's never had cake before (at least not in the U.S. and cake in Serbia is very different.) and yet there were many eyes upon us. I could feel the pity. Several people said to me, "You're a saint." No I'm not, or I wouldn't be crying because my chosen child...stood out as different today.

Why the tears for Axel? He's doing amazing! Truly he has come so far! My tears are because I see him wanting to be like the other kids. I see him trying to strike up a conversation with them in his own private language. I have no idea if he realizes nobody can understand him. He doesn't seem to. I think in his mind he's speaking our language, much like a person who's had a stroke leaving their thought processes intact but their ability to put it to speech is damaged. This is how Axel seems to function. My heart hurts for Axel who wants nothing more than to be like everyone else.

Then there is Angela; funny, spirited, life of the party. Ready for anything and eager to perform. The night before the performance she told me, "Mr. C. (choir director) said no dancing on the risers. Not safe." I thought nothing of it when it should have raised red flags.

When the notice came she needed to be in a spring dress, I cringed. Angela and dresses don't mix. On the way to her performance she was sitting the front seat with her legs spread wide. "Angela, you're wearing a dress. You need to keep your knees together."


"Because you don't want people looking up your dress at your underwear."

"Oh!" she said, as she snapped her knees together. She made a conscious effort to keep them there the rest of the 2 mile drive. It was hard work those 3 minutes. This time the red flags went up, particularly the one that tempted me to turn around and go home.

The girls entered the stage, taking their place on the risers. You can see in the picture above that Angela stands at the very back. By far the shortest person in the choir and yet she's in back. It's for a couple different reasons. The first is because she can see her director well from there. The second is she likes it there, and's so she can't be heard since she's away from the microphones. Angela has a significant hearing loss and really she cannot sing. Don't tell her that though, because she LOVES to sing. Even though she's in back, Dean and I have no trouble picking out her voice from the rest. Angela doesn't really sing what the other girls are singing either, instead making up the words to suit her own needs. Standing on the risers, seeing that her mouth is doing something different than all the others makes it very obvious where that off-key voice is coming from.

About half way through the first song, Angela must have remembered what I'd said about her knees. Apparently in the car I wasn't clear enough in my explanation. I should have told her, "When you sit, put your knees together." I should have added, "But when you're on the risers stand the way you're used to."  Angela has terrible balance. She had spotted us in the audience by that point and that's when she remembered. She suddenly snapped her feet together. Angela can't balance with her feet together. She started tipping and wobbling all over the place and I was sure she was going to topple into the girls on the riser below. I mouthed "STOP!" several times and she finally put  her feet where they should be while I breathed a sigh of relief.

But we weren't done....second song....It is my guess this is when her choir director told her not to dance. I know because Angela was dancing away on that top riser. When your kid is in 2nd grade and they're the only one dancing it is cute. When your child is in high school and the only one dancing on the risers it isn't cute anymore. At least not to me.

When the young ladies had completed their performance they made their way off the risers. Angela's choir director is always mindful of the fact Angela is not able to get off them easily and always offers  her a very gentlemanly hand. Somewhere, sometime, someone, has told Angela to lift her skirt "daintily" as she steps down steps. Ummmm there is nothing "dainty" about Angela, nor does she know how high is "too high" for a skirt. She was very close to "too high".

I was glad when the performance was done and Angela was safely in her seat.

There were end of the year awards given. Angela told me for two weeks prior that she would be getting an award, but I knew better. This is the time when Angela will always be left out where school is concerned. She will never be recognized for her beautiful voice. She will never be recognized for her academic performance. She will never  have a lead in a play or be voted most popular.

Afterward many people made a point of telling her what a wonderful job she'd done and how lovely she looked. They were genuine in their praise. I just wanted to go home and be done with the whole thing.

I didn't write all this for sympathy or pity. I wrote it because sometimes, I - as a parent of kids with special needs - don't like it when my kids are glaringly different. We advocate for our children to be included, we advocate for their educational rights, we advocate...advocate...advocate...for them to be treated like everyone else. We advocate for normalcy. But sometimes. Sometimes there is no way around the differences and sometimes those difference hurt.

Tomorrow is another day. I will pick myself up, take a deep breath and get on with loving my kids. I will teach them to be all THEY want to be. Because in all these events, my kids were happy. THEY were enjoying themselves, and THAT is what is most important of all.


Kathie Brinkman said...

True that.

Imogen said...

Hugs, Leah. And those hugs are not out of pity or some sort of feeble platitudes - those are sincere hugs, from one mother to another x x

Hevel Cohen said...

While none of my children have an intelectual disability, I can relate to this post, and I am afraid, come Monday, I'll post something similar. :( Or maybe just a link to your post.

Happy birthday to Angela!

Keryn said...

(I came here from MWOP. Just so you know what brand of stalker I am.)

Thank you for writing this, and putting it out there. I appreciate your honesty, and your writing.

We don't have to be perfect. We just have to try to remember what you said in your last paragraph.

Scarehaircare said...

*Nodding head in understanding.* Btw - I started buying leggins and bike shorts to go under all the The Love Magnets dresses for that reason. We talk about modesty every. single. day. but it sometimes doesn't appear to sink in.

I Just Love You said...

totally understand. rachel is only 2.5 but when we are out in public and she's taking a toy and hitting herself in the face with it...what do you say to that? more alike than different? sometimes i really hate that saying.

Anonymous said...

hugs to you mama... I appreciate your honesty in this post, as difficult as it is to read (and probably more so for you to write). abby turns two this coming week but 16 will be here in the blink of an eye and when it does, i will remember that you've been here before. xoxo