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 child...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."

"Why?"

"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 thirdly....it'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.

What has Axel been working on?

When we got Axel, nobody in Serbia really thought he could do much. They knew he was smart and able to figure out some things, but there are many old ideas about people with Down syndrome in Serbia (and even in the U.S.!) so he wasn't really taught anything. Although, I do give his foster parents credit. They had Axel for 18 months also and taught  him many things like how to make a bed, do some household chores, etc.

A year ago, just before Axel's spinal fusion, he had learned to do the first step in shoe tying. But then he had surgery and was in  his halo and couldn't even see his feet, so pretty much forgot about it. This winter we (ok, his OT did it all) started the teaching process over again.

Now look what Axel can do!


 I would like to point out, do you see how his arms are starting to fill out??? Make it stop! And I must say, "Look what you're doing." at least 7,022 times per day.

Transition Planning for Teens with Disabilities

Are you the parent of a high school aged student with a disability? Do you wonder what is all the talk about "transition" or are you a parent who has a clue what is going on? I am here to tell you I am not. I have a kid turning 16 in a couple of weeks and I'm already feeling behind in the game. Having Angela as my oldest child with Down syndrome is a lot like doing the "oldest child" thing all over again. This is far different than graduating a typical learner! Friends often call me looking for input about issues they're having with school and I can usually send them in the right direction. Unfortunately when it comes to transition planning I don't have a any idea at all who to call, when to call them, or what to ask when I do!

A couple weeks ago I was invited by PACER (Parent Advocacy Center for Educational Rights) to sit on a parent panel before the State Department of Education to discuss issues related to transition planning.

When I got the email, I laughed out loud. Did you see my first paragraph where I said I don't have a clue what is going on? I replied that I didn't think I was the right person to sit on this panel. People who sit on this panel should have some idea of how the transition process goes.

"No, actually you're exactly who we want on the panel. You know how to advocate for your kids and yet you don't feel prepared for this time in your child's life. There are many other parents out there in just the same boat and you can help us understand why."

Ummm....ok. I think.

So Monday was the day. It was a very small group: Myself, three other parents, a representative from the Dept. of Ed. and a representative from PACER.

I thought it was interesting that the other three parents have kids who are on the autism spectrum. I was the only parent  representing the "other" students. Those who have cognitive impairments due to diagnosis of Down syndrome or other syndromes that affect development.

Here are some questions that were asked. I won't tell you my answers, because these are questions you need to ask yourself about your own child's IEP and transition planning meetings.

1.       What is your greatest dream for your child as they transition into adult living in the community?

2.      What is your greatest fear when you think about your child living as an adult in the community?

3.      Name your child’s greatest strength?

4.      Thinking about your child’s IEP, are there goals that address postsecondary education of training?

5.      Thinking about your child’s IEP, are there goals that address preparing for employment?

6.      Please name the outside agencies or services that have been involved in your child’s transition planning. Have they attended the IEP meetings?

7.      As a parent, do you feel like you are a valued member of the IEP team?

8.      Is your child involved in the transition planning process?

9.      Any other thoughts you would like to share about your child’s transition planning?

The discussion was very interesting, and I will say I learned some things. We also discussed things like what kind of job training is in place for our students. Interestingly all the parents stated everything seems to be centered around factory work or food service. The other parents - who's kids are older than mine - all agreed there seems to be a problem with job training in high school being individualized, with all the kids getting the same training as if ALL the students will be working at McDonalds or on an assembly line.

With three years left until Angela graduates I feel like I already feel like we're running out of time to get the necessary steps completed. I want Angela to have a job she ENJOYS, and to be living as independently as she possibly can. Angela has made it very clear she does not want to live at home, but on her own with her friends. It's my job to see to it these things happen for her.

End of the Week Update

Well, I see my 30 day blogging challenge lasted a whole 5 days. LOL I'll see if I can get it caught up this weekend. This week has just been very busy, and mentally exhausting. Axel is is learning he DOES have free will.

As you may recall, on Monday and Tuesday I went to school with Axel. Just 1/2 days each time, letting him experience the bus, the playground, lunch...and a CLASSROOM! He did fantastic those two days. He was perfect, really. But I warned the staff: "The child you see now is NOT who you will have in school tomorrow when I'm not here. Just say'in!"

On Weds he had to go all by himself. Things did not go so well. It was horrible, in fact. Even though he APPEARED very happy (laughing hysterically, really) at his own antics all day, I knew it was very stressful for him. When he came home on the bus, he was all smiles to his driver, then he turned and saw me and instantly the guilty face appeared. I took this as a GOOD sign! It means he was connecting all that had happened during the day to consequences later on. He was very solemn as he took my hand and we headed up the driveway. When we got to the house I said, "Axel, today at school was not good. (we have to choose our words carefully to make sure he understands.) Now you will need to sit." and he took his place on "the spot" for 5 minutes. When his time was up, I gave him a hug, assured him that I loved him, then told him he could go play. Later we discovered what he'd been up to while he was playing quietly in his room. This is a child who is learning that he does have free will and he can choose his own behavior. Peeing is something he has 100% control over, so he utilized his control.

Thursday I went to school and lurked in the hallways the entire day. The plan was that I be nearby so that when Axel's behavior started to escalate, I could step in right away instead of waiting until his energy level was over the top. There were only two times staff asked me to step in, and both times he was completely shocked to see me, and his eyes said, "Where the heck did YOU come from?" When I did appear, he immediately stopped what he was doing. Like I said, I only had to intervene twice. Still, Axel was stressed. How do I know? Because he wet his bed that night.

Friday was a MUCH better day. I went to school around 11:00, which is when he'd started having trouble the previous two days. Only this time he held himself together. I stayed until he came in from Recess. The day before had been difficult for staff to get him in and I had to intervene. This time he came right in, put his basketball away where it belongs, and headed for the doors. I met him as he came in, "Hi Axel! Hey, I hear you're having an amazing day! Good for you buddy!" and gave him a big hug.
Still, the day was stressful for him. And how do I know? Because this time he pooped in his bed (in his pajamas.) I'm almost certain he was still awake when he did this, but I didn't discover it right away so I have no way of knowing. It seemed to me, by his actions, that Axel was drawing a line in the sand. "This is my side and that is yours. I control what happens on my side, and you control what happens over there!"

Tonight, Saturday night. It's just the kids and I. Angela was dancing around downstairs and Axel got into the tub for a bath. I listened to him happily play in there for about 15 minutes when I went to get him out. Much to my surprise, Axel had exhibited even MORE...ahem..."control" while he was in the tub, and he was now happily dumping water over it! As soon as he saw me he started crying. Guess who spent 1/2 hour cleaning poop out of the tub? It wasn't me! Well...I did had to finish up the job.

I'm pretty sure all this behavior is tied to Axel having control over something in his life. His world has just gotten much bigger and it's a little overwhelming out in that world!

So, that's what I've been doing with my time this week. What are YOU up to this weekend?

All By Himself

Today is a BIG day for Axel! Today he spreads his wings and goes to school all by himself. I'm so excited for him!

Mom has to get that "First day by yourself" video, of course.

He couldn't believe I wasn't getting on the bus with him! Oh, the grin on his face was priceless! It said, "Oh, no Mom? I am going to have FUN! (insert evil laugh here)" As soon as he realized I wasn't coming along, he started bossing the bus driver around. Little stinker.

I wish I could say I was comfortable with his classroom placement. I'm not. I'm still trying to decide if I'm making a huge mistake by sending him. He's come SO FAR behaviorally, and after my observations in the classroom over the past two days, he will be at significant risk of loosing the ground he's gained. Yes, he'll learn how a school functions....in a grossly understaffed classroom with teachers who can't communicate with him. This is NOT the fault of the district. Axel poses some very unique challenges to the district right now, that they've never dealt with before. Axel doesn't "fit" into any of the programs (and there is a wide range of programs in our district!) The number one problem is the fact Axel's primary communication is ASL, and he's growing vocabulary every day. Except that he doesn't have a hearing loss. That one tiny piece makes the whole communication issue with school muddy. I have another post coming about this, I'm just not sure what's ok to say here, since there are some people from the district who read my blog.

Don't think I'm leaving this alone! Those of you who've been reading here for any length of time know me better than that. Axel's needs will (eventually) be met.

1st Day of School!

Yesterday was a big day for Axel! His VERY FIRST day of school. Ever. In his entire life. At 10 years old Axel got to experience what every child in the U.S. has a right to. An education.

We're easing him in though. Yesterday I rode the bus to school with him, and we only stayed at school for a couple of hours. Today we're going in later (actually leaving in a few minutes) and will have lunch at school and stay for the afternoon, then I'll ride the bus home with him.

Tomorrow he is on his own.

This will only last a few weeks, until his surgery on May 16th. We wanted him to get a taste of school, understand the routine, etc. so in the fall when school starts up again, and he HAS to go by himself (because it'll be my first day back too)  it's not a 100% brand new experience.

I have SO much to say about Axel's school placement, both good and bad, but I just don't know where to start. Right now, for me, the bad is outweighing the good. It's not the district's fault, and it's not the fault of his new teacher. It is the fact that Axel poses some very unique challenges to the classroom. Being non-verbal, AND learning to understand English, PLUS learning to sign, and NEVER having attended school before. Well. That is just a lot of stuff going on.

I'll post more about this later, but for now I'll leave you with some pictures.

Waiting for the bus.

As we were waiting for the bus, I don't think he really understood what was happening. Why were we standing at the end of the driveway? In the COLD? Finally I heard the bus and said, "Axel...what's that? Do you hear that??? Oh, it's the BUS!! For YOU!! Oh how his eyes lit up, and he hopped up and down the way he does when he's demanding something happen NOW! "Hey bus, stop HERE!!!!" As the bus pulled up his driver was waving to him, giving him thumbs up, etc. 

The driver and aid were very nice, and patient with him as we put his harness on. (he'll be in a 5 point on the bus, for everyones safety. ;-) During the ride I lost count how many times the driver asked him, "How ya doing Axel buddy?" And gave him a thumbs up in the mirror. 

Riding the bus. He loved it. He'll love it more when I'm not with him and he can be a turkey!

Helping out

Angela is 14. She's had a stroke...or two..we don't really know. Since she was about 7 months old she has shown the effects of these neurological events as weakness to her entire left side. The only time it's really noticeable to me is 1) when she's swimming. She doesn't kick her left leg or use her left are very well, and her range of motion isn't very good on that side and 2) when trying to teach her to do fine motor tasks, like zipping her coat or doing buttons and snaps.

I have tried for four years to teach her how to do these tasks. Several OT's (occupational therapists) have tried to teach her too. None of us have had any luck.

Enter Axel.

One day a couple weeks ago I spent...oh...7 minutes, and taught Axel how to zip. He was very proud of himself! Angela was a little jealous that Axel learned this skill and started trying to zip her jacket too. Gotta love what  little competition can do for a kid. She still wasn't able to do it, but the fact that she tried was nice, since getting her to try doing ANYTHING that's hard for her is like telling a fish to come hang out on shore with you. NOT HAPPENING!

This morning as we were getting ready to walk out the door, I sent Axel and Angela to get their stuff on. When I came back to the entry way, there was Axel, kneeling down in front of Angela, trying to help her zip her coat.

And he did it.

And they were BOTH very happy!

She's so quiet!

Angela is. Quiet.

Ok, "quiet" isn't the right word. "Busy", and "self amused" is better. As much as she adores Axel, Angela is pretty set in her ways, and her "way" is to come home from school each day and either watch some TV or hang out in her basement bedroom, reenacting her entire school day (or whatever she just watched on TV.) She can spend HOURS down there, coming up for air only when she's hungry. I think this is pretty typical of teenagers. (the hanging out in the room thing, not the pretend play thing.) But don't worry, I can get her to play with Axel pretty easily.

So yesterday, in the middle of the day, Angela's teacher sent an email out to all the parents about choosing electives for next year, Angela's first year at.the.high.school. She gave several choices and asked us to discuss them with our child, or if we wanted she could talk to the kids about them while they're at school. She needed our responses as soon as possible.

I was just about to send a reply, asking her talk to Angela about her preference between cooking class and a woods class, since she really likes both and the teacher needed our responses ASAP. I was just hitting "send" when I remembered....

Angela was not AT school. She was HERE at HOME, in her basement bedroom where I couldn't hear her! She had stayed home sick and was enjoying the extra time to herself in her basement lair.

I had totally forgotten my kid was here! You are welcome to nominate me for mother of the year now.

Cooking for Axel

Last night Angela was reading to Axel, and today she decided to make him lunch. She sure is loving being the big sister!

Failing as a Parent

I have failed my kid miserably, and she is only 14. Can I still fix it?

If you have HBO, have you seen the documentary Monica and David? If not, you HAVE to check it out! It's about a couple with Down syndrome who have gotten married, and are learning about living and loving together, and their family learning to let them do just that. It was fascinating for me to watch. And, I have to admit, some parts were hard for me to watch to. Like their wedding night when the hotel room door closed behind them. I told Dean, "That is where I would want to put my thumb in my mouth, my fingers in my ears, curl up in a fetal position and hum in the corner." Really, when that day comes for Angela, I'm gonna have a hard time with it.

Anyway, this movie was a slap in the face of reality for me. Monica is a bit obsessive about some things, as Angela can also be sometimes. Ok, a lot of people with DS have some...ummm...obsessive tendencies. Several times they showed Monica making her bed. As she made her bed, all I could think of was the mess Angela's bed is left in each morning and the fact that Angela is perfectly capable of making her bed, I just don't seem to have the patience for teaching her how to do it. It's not that I haven't tried, it's just that our sessions have not turned out very well. One of us always ends up irritated with the other. Oh my, Angela and I are soooo much alike!

In other segments of the movie, Monica and David are doing chores together, like taking out the trash. (It was pretty cute to see them bickering over some small detail.) But the scene reminded me of my friend Tamara's recent blog post about her son Shawen doing chores. And that is when I realized that I have failed Angela miserably.

You see, although Angela has four older brothers, she has been very much an only child since they moved out when she was 7. (well, except for the revolving door stuff with Tyler.) When she was little, and we pretty much did everything for her, and since she was the only one here, it's been pretty easy to just keep the same patterns in place.

Some things have changed. Like, she showers independently and stuff like that. But she can't make a bed. She doesn't take out the garbage, or do any kind of household tasks unless asked to, which is rarely. Occasionally she lets the dogs in or out, and we're met with a huge attitude when we do tell her to do it.

I have news for Angela.

The sh** is about to hit the fan.

There is a new brother coming, and I'm pretty sure he is NOT going to be a happy camper when he comes. He is loosing a family, and a foster sister who he is bonded to. I have no idea how independent he is, but I'm going to assume he's not at all and hope I'm pleasantly surprised.

You know how girls, when the hit the age of about 7 or so, start to mother everything? Suddenly they're very into mothering their nieces and nephews, etc. Well, Angela just started hitting that developmental stage about 6 months ago. I think that's interesting since I've been saying for awhile that cognitively she's very much 7-ish. All of a sudden here came this very 7-ish behavior! Prior to that she was really pretty rough with little ones. We're hoping we can use that "mothering" thing to our advantage when Axel comes home. Hey, it's my blog, and I can be delusional if I want.

Anyway, we've been talking to Angela about how she's going to be the "big sister" and how big sisters do things themselves because when moms have new babies, moms have to take care of the new baby. Bringing Axel home is going to be a little bit like bringing home a new baby because he's going to need lots of attention. We talk about how when she was born, she had to go to lots of doctor appointments, and her brothers had to come along. Most of Axels visits will be while she's at school but she'll be able to come along to some of them. (she was thrilled about this, because she LOVES to come to the doctor when it's my turn and not hers! LOL) Axel will need someone to tuck him in at night, and read him a story, and teach him how to be a big kid. She can help by showing him how big kids act, and do thier CHORES like a big kid. And do their HOMEWORK like a big kid, etc.

We struggle to find ways to explain all of this to Angela in ways that will be fun and exciting for her, and not make her resentful of the intruder who is about to descend upon her empire.

Spying

Thanks to modern Techonolgy, I can spy on Angela while she's at camp, and she doesn't even KNOW it! how cool is THAT! HA!

End to a busy week

So you saw last week that it was crazy around here. The craziness is *almost* done.

Friday night was Angela's birthday party with sleepover (pictures later this week), then I had to be at the ACT testing site at 8:00 AM to take the test with all the other 17 year olds in the Twin City area. (HA! Boy was THAT uncomfortable!) I finished the rest (read "suffered through it) and raced home to pick up Angela and bring her to Dean's family reunion. We hung out there for a couple of hours before going home so I could get her packed for camp and make do a couple last minute errands for camp related items.

Saturday morning found Angela and I in the car at 11:00 for the 3 1/2 hr drive to Camp Knutson for Down  Syndrome Camp. This camp was started by my friend Angie when Angela and her son Ryan were just babies! Kids are ellligable once they turn 10. What an amazing camp it is. First of all, the grounds are perfect. Then, because everyone there has Down syndrome, everyone fits in! There isn't one camper who stands out as different, and everyone is included. There is something for everyone to do. Every year there are many campers who are there for the first time (my friend Ute's daughter Sabina is there for the first time this year at 16) and some who've been there for years. There always seems to be a shortage of girls so camp administration is always happy when there are new girls coming.

When Angela and I were just 10 minutes from home we crossed the Mississippi River, like we do almost every day. She hollered, "Cross Lake!" (where camp is held.) and I'm like, "Sorry chickie, we have another 3 hours yet!" The last 1/2 hour of the drive she started asking me, "You're just dropping me off, right?" In other words, "Please don't get out of the car mom, I can do this on my own." I assured her there were forms for me to sign, and her bag was too heavy for her to carry herself. (and yeah, I packed way too much stuff for her. LOL)  Here's a couple pictures of camp.

Saying goodbye to Dean "Bye Dean, I'm going to camp. Will you miss me?"

I promise I will miss you Dean!

She took time out of her busy schedule to let me take pictures of her cabin. Here's her cubby

And her bunk (with the fakiest smile ever)

And the front of her cabin. "Are we done yet? I have basketball to play!"

On to the fun stuff! (look, her feet are off the ground! LOL)

A giant game of ring around the rosie with some of the campers while we wait for dinner

"Mom! Why are you STILL HERE????"

And so I headed to my parents to spend the night before making the 4 hour drive home this morning. I have class tonight and tomorrow, with Weds. being my only open day. Thursday my friend Jane and I will drive back up to pick up our girls, then Friday Angela has a birthday party to go to, then her dads, then Dean and I are having a......(insert gasp here)....much needed date weekend!

What a great weekend!

This past weekend was fantastic!

Friday night, in preparation for Saturday's big ride,  Dean and I detailed the bikes. Ok, I better re-state that before Dean corrects me. I washed MY bike, and Dean detailed both of ours! He wanted me to enter mine in the bike show next day, which-when he had my bike all purty look'in-I actually contemplated doing. He even did my rims and spokes, and anyone who's done that with their bike knows what a pain in the neck it is, and is saved for just a couple of times during the summer. (unless of course you have severe OCD and no kids to worry about while you're doing it.)

While Dean was detailing his bike, I got a wild notion to replace the chrome trim that runs along the inside edge of the tub. I mean, how hard could it be? Dean was running to the car parts place to see if they carried it, and as he left said, "Wow. Angela has been really quiet for a long time. What she up to?"
I wasn't worried, "She's playing Dog the Bounty Hunter in the back yard." I said, cuz that's what she was doing that last time I'd heard her stomping around (cuz she stomps when she walks) and her games last forever. Yes, it did occur to me that I should check on her RIGHT THEN, but I was very busy at the moment, so I didn't. Dean had been gone about 10 minutes when the guilt for not checking became too overwhelming. Mostly because I could hear the news headline in my head. "Child (insert terrible accident here) while mom plays messed up priorities tinkers polishes chrome."

I looked in the back yard at the climber and she wasn't there. I went in the front door and listened, and there were no sounds from Angela anywhere. I went to the basement and saw that her door was closed but her light was on. (she's obsessive about her light, so I knew she was in there. ) but she wasn't talking. Ummm if Angela isn't talking she's either eating or sleeping! I called, "Angela, are you in there?"

We're trying to teach HER to knock before entering, so I knocked on the door.

The voice said "No."

"You're not?"

"No."  (I can her rustling around.)

"Ok, but can I come in?"

"No. I need privacy."

"Well, I need to come in and get something."

I opened the door, and found out why she was so quiet. She WAS eating.

About 5 years ago I bought Angela an Easy Bake Oven. She never wanted anything to do with it, and I keep thinking I need to craigslist it or something. It's been sitting on a VERY HIGH shelf in her closet all this time.

And Angela is very short.

"I made cookies." she said, as she was trying to stuff the oven back in the box without my noticing. There was a bag of cookie mix poured all over the floor...and all over her face...and in her hair. "I see you were making cookies. Looks like you had fun. Can you do me a favor and next time, ask for some help, ok?"

I couldn't  yell at her. The toy was in HER closet, after all. If I don't want her to play with something, I guess I better not have it in her room, especially since she has finally realized the world does not stop at her eye level, but that that if she looks UP there are interesting things to behold! I glanced at the spot on the shelf where the box had been, and shuddered picturing Angela climbing up there. "Make sure you clean up the mess you made. The broom is in the kitchen."

I went back out to my bike, grinning at this very normal kid experience. Yeah, it was a couple years later than would have been typical with my other kids, but it happened, and for that I'm thrilled. Dean came back and I told him the story, and he grinned too. Angela provides us with a lot of entertainment.

Half hour later she still hadn't come outside to orbit around us while we work and she plays, which is what she usually does. I went back downstairs and found she'd made yet another discovery. (all in one day, too much for me!) Angela has a closet of full of stuff that has always been there but she has never played with. Every year I get rid of things, and get different things in hopes she will one day actually PLAY with something. I try getting them out and setting them up for her to "stumble upon", but it never works. But this day she discovered the Easy Bake Oven....and the Board Games! She had every one out, with all the pieces scattered around the floor, and when I found her she was playing "Sorry" with some invisible friends. (No, I could not see them, she was talking to them, so I knew they were there!) I left without saying anything, and she never knew I was there.

When I returned to the bikes Dean asked me what she was up to. "She's playing sorry all by herself. Poor kid."

"Oh honey," he said, "She's never alone! I bet she has 3 invisible friends with her!"

Bussing

You may remember this post where I had to choose what type of bussing angela would recieve this year, and this post where I was stressing about the regular ed pick-up spot. Well, yesterday I received Angela's bus card in the mail, and she'll be picked up right at the end of our driveway, just like she has been for the past 3 school years. Oh man, I'm so relieved!

Open House Update

We walked in the door, and into a crowd of about 1,000 excited 6th graders and their confused parents. We were handed a pack of forms (that actually came in the mail a couple weeks ago too) and we sat down at tables to fill them out. As soon as I sat down there was this ear piercing shrieking noise and alot of movement behind me. It was Angela's classmates from last year coming to say hello to her, and drag her away to meet more screeching friends and new teachers. It left a big smile on my face!

We dropped off the forms at the appropriate tables. Wrote out checks for lunch money, year book, signed up from some stuff I don't even remember, got nabbed by those at the volunteer table and signed my life away, and took school pictures (yet another check. LOL)

While in line for pictures Angela was talking to someone behind me. When I finally paid attention it was my new friend Jennifer. She had contacted me from one of the DS sites last year, and they were thinking about moving to the area, wanted to know about school districts and stuff. Then last spring when they came house hunting we got together for breakfast. Here they were, getting her older son set up for school. Her little guy with DS is a 1st grader and going to the elementary school Angela was at. It was nice to see them, and you might be seeing her here!

Then we hooked up with the lead special ed teacher who will also be Angela's speech teacher. So far I really like her. She didn't talk to me, she mostly talked to Angela in 'big kid talk". I asked her about swim team and she said they have to be in 7th grade, so one more year to work on strokes and stuff. She told me about the adaptive rec program which I didn't even know existed! Sounds like fun. Floor hockey, soccer, softball, etc. all right there after school. Cool! Angela will really enjoy this!

Tomorrow (Angela's Thoughts)

*note* Angela wrote this in a word doc. with some help with punctuation, and spelling because she wanted me to spell everything for her. I have to remind her to add words like "is" and "the" and "and".

Tomorrow is school. Not really school. Tomorrow is open house. I'm in 6th grade. It's open house.

I will bring my school supplies to school. Get my new locker. Meet my teachers. I will see all my friends. Monica and Drew and Julia. Tomorrow is open house.

First, I have a dentist appointment. I have to hold very still for the dentist. He will clean my teeth. Then its time for open house. No swimming tomorrow. No diving for me. Nope. Straight to open house. Not Tyler. Not Aaron. Not Noah. Just me at open house.

No pulling girls hair. No pushing those boys. Not nice. Nope. Only touch nice. Don't touching girls braids. Remember words please move away. Hands in my pockets is safe hands.

I'm not sleep tonight. Nope. No sleeping for me. 6th grade. Tomorrow is open house.

Snowpants

Last night, in the middle of the night, I woke up having a panic attack about snowpants. No...really....

You may remember my post about Angela taking the regular ed. bus to middle school this year. Now, Angela would have ALWAYS been able to take the reg. ed. bus, but we've never lived in the boundaries of her school, so she's always been on the special ed. bus. But, THIS year, we finally live within the boundaries, so she can take the reg. ed bus in the morning. Because she will still be on a short day this year due to her health issues (she'll be coming home at 12:00) she'll be riding the special ed bus home.

So...in the middle of the night I got to thinking about her riding that bus. I wonder where it will pick her up? There aren't any other middle school students within 2 blocks of us, and we're right on the corner where they pull into our neighborhood, so I'm hoping she'll be one of the lucky few that get picked up at her driveway.

Then I got to thinking about the cold. Angela gets VERY cold, and HELLO! It's Minnesota!! She usually goes to the bus stop with hat, mittens, scarf, boots, the whole shebang. And yes, snowpants. Sometimes she's standing down there for 5 minutes, and sometimes for 15, in the wind and cold, waiting for the bus to come.

But middle school kids don't WEAR snowpants. Or boots. And you're lucky to get a hat and gloves on them. She is going to FREEZE at the bus stop, and that's if it's at our driveway! What if she has to go down the street to catch it? That would be two blocks, and I don't trust her to walk that. I'd have to go with her, which I will, but...you know what I mean. How can I work on this whole independence thing when I'm walking her to the bus?

Ok, I have a whole month to worry about flippin snowpants.

What does this pic say to you?

Epic Journey

In a couple weeks I'll be leaving on my "Epic Journey". This trip was actually started by my friend Tink, a fellow SIS rider who has a big birthday coming up, and is kind of doing it as one of those milestones in life kind of things. We decided to make it a group venture, each of us making the trip for our own personal reasons.

My reason? There are many....

1) Because I'm a big girl, and I can.
2) Because Dean says I can.
3) Because Angela has a dad who can take his time with his daughter and I can let my mom-guard down a little bit.
4) Because I want to take a big trip, but Dean doesn't want to.
5) Because I want to do something fun with a bunch of women I've never met before, only talked to online.
6) Because, much to the frustration of some of my extended family members, I'm kind of into taking risks right now.
7) Because I want to be able to say, "I did it!" when I tell my grandkids what their crazy grandmother did when she turned 41.
8) Because I can't walk away from a challenge.
9) Because it's something none of my friends have done, and I've always had a need to be "different".
10) Because I suddenly have this strange independent streak flowing through me. Well, I think it's always been there, but I seem to act on it more in the past couple of years.
11) Because I never want to look back on my life and have to say, "I wish I didn't pass up the chance to do that."

For reasons of security (this IS a group of women traveling!) I can't post the map of our route. I want to though, so I'll post it as soon as we get back! In the meantime, if you could say a couple prayers for me. The first, and most obvious, is for my health and safety, as well as for the other women in the group.

Secondly, finances are definitely an issue at the moment. There is money that is SUPPOSED to come in, and is owed to me, but the source is unreliable. I have no way of knowing if it's coming today, next week, or a year from now. If the money doesn't come in, I'll have to cancel my trip.

Prayers for Angela who will be with her dad, in his semi. You may remember the last time she went for a week in the truck. It's been very hard for me to say yes to her going again. But her safety is not the only issue. The other is her health, which is kind of in limbo at the moment. Unfortunately her dad isn't very well...ummm...well he can't handle most of the stuff that gets thrown her way. (and omg...what if she got her period for the first time while she was with him? That is both funny and scary at the same time!)

Prayers for Dean as well. He'll have some time with his brother, and lots of time with the 3 dogs. I hope he doesn't get lonely for me, but I hope he misses me! He needs to stay safe in the fishing boat, AND on the road!

Well, that about does it I guess. Oh, if you're REALLY curious where I'll be going, look at a map, and draw a big circle ALL THE WAY AROUND Lake Superior, including up into Canada!

Check This Box

Ohhh...I hate making decisions about something that is months away! Well, I guess it depends upon what the decision is about. Like..I have no problem buying airline tickets for a vacation months in advance. Writing it on the calendar and saving the date!

The decision I have to make now is of a different sort, and can always be changed if need be. How cool is that?

For many years, every day when Angela was picked up by the Special Ed bus I walked her down the driveway and waited with her. This is called a "hand to hand transfer". Not only did I do this for the usual safety reasons related to school bus stops, but also because a) I couldn't trust Angela to stay put, staying out of the street, etc. and b) our driveway is also very steep, and in the winter time quite icy. Angela's having poor balance made the trip downhill very difficult for her. Our driveway is kind of long, so if there was a problem it would take me a minute to get there. This worked the same way when she came home, and the driver was not allowed to let her off the bus unless I was at the bus stop. I kid you not, this is worse than having a Kindergarten bus coming and going in the middle of the day, especially since Angela has shortened days! LOL

This year for 5th grade I decided she was ready for some added independence, and bumped her up to "eye to eye" transfer. That meant that Angela could walk to the bus stop herself without Mom hovering around. It also meant that when her bus brought her home I no longer had to walk down the to the end of the driveway to meet her, instead just waving from the top of the hill. However, if they didn't see me, they couldn't drop her off. They also stay at the end of the driveway until she's about 1/2 way up the drive.

According to the calendar, next year Angela is no longer a little kid and will be moving on to the middle school. Her mother is having a hard time with this transition! One of the things I'm having a hard time wit is the busing situation. Angela has been riding the special ed bus because her elementary school isn't our neighborhood school. Instead she attends on on the other side of our town. But next year is different! In the mornings Angela will ride the regular middle school bus with all the other kids. There aren't any other middle school age students in our neighborhood, so I'm hoping she can still be picked up at the end of our driveway. I don't trust her to walk up the street to a bus stop so if she has to, Mom will be walking with her. However, in the afternoons she'll still be coming home much earlier than the other students (noon vs. 2:30).

I had to fill out a form for the transportation department for the special ed bus. I had to choose between three options:

hand to hand transfer
eye to eye transfer
unaided transfer

I hadn't thought of that unaided transfer option. Thats where Angela would be dropped off and the bus would leave as soon as she steps off the bus. They don't need to verify there is an adult here, and Angela can enter the house on her own.

I think she's ready, or will be ready for that by fall. That means even if I'm not home she can come in the house (she'll just plop herself in front of the t.v. I'm sure! LOL) and means I don't have to freak out about making it home in time for the bus. Most moms get past that when their child hits first grade and heads off the full-day school. Not me, I've been doing this for 6 years now and really, I'm tired of it. So, I checked the "unaided transfer" box. I guess we'll never know for SURE if she's ready for this unless we try it, right? RIGHT?