Archive for September, 2011

Accessible with Grandpa’s Help!

Friday, September 30th, 2011

So Laelia was taking a nap after a ROUGH (I’m talking crying, hitting and biting) day of PT last Thursday. I was sitting on the couch contemplating how I was a bad mother while eating ice cream when I hear Laelia call out, “I don’t want a nap!!!” Okay, she was completely out cold when I carried her limp form into the house just twenty or so minutes earlier. So I did was any good mother would do, I hid I went and checked on her. Well I eventually checked on her. By the time I got to her door she was quiet again. Thinking she had gone back to sleep (and that there was a  God!) I went back into the living room to hang out with my dad and Christina. Well moments later I heard what sounded like a door opening. Sure enough that little Turkey was sitting in the hallway outside of her room with a big “I did it!” grin on her face.

And the world of napping changed forever.

Dad had installed the door apparatus while we were at OT/PT and hadn’t even shown her  how to use it! She got right off her bed and figured it out on her own. Stinker.

So now I have a child on the move!

Ask and the door will be opened unto you. Her new door knob and chain!


Let there be light! Her new light pull chain.

And lastly the video demonstration. Enjoy. :)

 


 

 

Pulling her pants up!

Friday, September 30th, 2011

I promise I have permission from Laelia to post this. ;) This is what we’ve been working on in OT for the past three months. Really since her last occupational thearpist in the South MTU. So after much hard work I give you PANTS!!!

 

Have you ever seen such a beautiful sight?

Thursday, September 29th, 2011

We won!

Isn’t it beautiful?

So yellow and pretty!

I started squealing when I saw it rounding the corner.

“IT’S THE BUS!!!”

Neighbors must think I’m nuts.

So I have to say that starting a war with the school system is like banging your head against a wall over and over and over adn veovl anleiafl kaslierjaoj. Yeah like that.  Sometimes you just get a headache. But this time we won! We got our school bus! And, yes, my daughter takes up two seats on the bus: one for her gait trainer and one for herself. Guess what percentage of seats that is. Give up? Two freakin’ thirds.  That’s right, the two seats they  didn’t want her to take up were finally wasted on her. She arrived home in the bus with ONE OTHER CHILD. *bang bang bang*

Apparently she tells me there were a whopping TWO other children on the bus in the morning.

So, UGH. I mean YAY! But also UGH. I was hoping I could fights some righteous battle that would usher in a smoother road for other parents in my situation and make everyone involved see the light of day. But in reality, in the San Diego Unified School District’s reality, you just fight every time they tell you  no. Then you wait for almost two weeks while you sacrifice your work hours  and sanity until they realize that you won’t just disappear. Well, according to the bus guy, parents do just disappear. It happens. They don’t want to fight. Or they feel they can’t without losing services or being treated badly.  And I don’t blame them. I know of one other family who were denied  bus service  so they  drive their kid to school everyday. They know it’s not right (it’s illegal), but they do it because they love the school and are thankful for it. And we are too. We love Head Start, the program and the people in our school, and we are so thankful for it. But I still fight these battles. Because I love pain. Bring it.

And why is information sharing  so ridiculously hard for SDUSD?   I just recently learned that “Fred”  was really “Willie.” So I took out the  references to Fred in the last two blog posts and changed them to Willie.  My daughter was even calling  him Fred! How did we get Fred’s business card??? Anyway, we got the royal run-around and ended up speaking to five people total in the transportation department. Even when I finally reached the main guy who made decisions, HE EVEN TRIED TO HAND ME OFF TO SOMEONE!

And let me just say that we would not have even gotten as far as we did without our SEEC coordinator, Sue. She ended up calling everyone I did, multiple times. And she at one point yelled, “No, we need to solve this now! Do you want the mom to lose her job?  Do you want to drag this out?!” Or something along those lines. She showed up at our front door at 7:00 a.m. with three other  professionals on Wednesday to spend 40 minutes figuring out what bus Laelia would be on and how the bus driver would work things out.

I’m so glad it  finally worked out. But I’ll admit it, I’m mad.

But  Laelia is so happy. She’s riding the bus with her friends. She feels like a legitimate part of the school system. She feels like she belongs. And we all love her bus drivers. But as for the “system”…

Screw you bus people.

Bus service update

Monday, September 26th, 2011

Charles here, the husband you read so much about on this blog. I just talked to Alexis about her experiences with  Willie today. Apparently, the reason he gave for possibly continuing to deny our daughter bus service is that the bus driver would have to be trained to assemble and disassemble Laelia’s KidWalk, and not just that bus driver but any other driver who might ever drive that route. Which is odd to me, because there’s no reason the bus driver should ever have to assemble or disassemble the KidWalk.

Assuming the bus service is going to transport the KidWalk in pieces, which is what was discussed today, here’s what happens every day: the bus shows up to our house. Laelia’s in a carseat and the KidWalk is in pieces. The bus transports Laelia, the carseat, and the KidWalk pieces to school, where an aide meets her, assembles the KidWalk, and loads her into it. Alexis explained this to Willie, who replied, “But what if the aide isn’t there?”

Well, bus folks, I hope you’re not suggesting that you need to learn to assemble a KidWalk so you can turn my 3-year-old daughter loose in a school parking lot, even if she is almost 4. If no school officials meet Laelia at the bus, you have bigger problems to worry about.

So frustrating. But with any luck we’ll get a favorable ruling from the bus people and won’t have to pursue this any further.

SDUSD’s special needs bus requires you to be less special

Monday, September 26th, 2011

I’m so incredibly upset right now that I’m either going to take a nap or blog. And lying down with my eyes wide open as I literally hear my heartbeat in my eardrums is not working, so here I am a’ bloggin’.

Where to begin? Last Monday, September 19th, Laelia had her first day of school. Laelia waited at the curb on an unusually foggy morning for over an hour. The school bus never came.

After my husband made some phone calls a guy finally came, only no bus. He was  Willie with Safety and Training with San Diego Unified School District’s  Transportation Department,  and he was there to see if we qualified for bus service since he heard we’d be using a new chair (by that he meant gait trainer which is a walker with a seat in it) that he was unfamiliar with.

Keep in mind that the fact we’d be using a Kid Walk, including describing what that was, was revealed in  Laelia’s IEP three months ago. We had no idea no bus was coming or that we’d need to qualify for this. In fact we knew the transportation department was difficult (for lack of a better word), and had made sure three weeks earlier that we were set up with special needs bus service for a gait trainer.

Of course we did know that we would have to break down the Kid Walk for the bus driver. But we were still excepting a bus driver (in an actual bus) and not some sort of inspection.

Charley was totally caught off guard. In that one quick assessment we were denied because Laelia’s gait trainer breaks apart but  does not collapse. And using a different special needs bus that  transports equipment without breaking it down wouldn’t work because it would mean she would take up two spots: one for her seat and one to hold the gait trainer. And in this economy you don’t take up two spots.

In other words, San Diego Unified School District’s transportation policy is that the special needs bus only transports kids who can walk and therefore  don’t need equipment or kids who have nonfunctional legs  and therefore have equipment with seats they can ride in. Kids that are special, but are not too special. Kids that take up one seat and don’t need equipment that needs to be stored elsewhere. Although walkers and gait trainers should qualify under the law (ADA)  for transportation, that is not the reality. And I can assume that any medical equipment that comes out when technology advances that is in the best interest of these kids will almost likely be denied for transportation service based on this experience. Goody.

For the last week we have had no bus service. Our contract hours with the school (Head Start) are 8:00 to 12:00. To say  it’s a hardship to hold down a job and get our kid to and from  school  at those times is an understatement, especially when I commute twenty minutes to work one way.  We have been talking a lot with our SEEC coordinator, Sue, who  then met with her supervisor, Lori,  to discuss it.  In the meantime I contacted Kim, the bus scheduling person,  and she finally gave me Sergio’s number. Sergio is the one in charge, and is Willie’s boss. He agreed to send  Willie out again to my home to see the Kid Walk, but made no promises. Sergio also  told me I could always leave her durable medical equipment at home.

I respectfully told him that he could leave his kids’ legs at home when they went to school too.

I think I may have used the word “ridiculous” five too many times in that conversation. Oh well.

Today I met with  Willie again to take another look at the Kid Walk. Steve, a rep  from National Seating, also arrived to make sure the Kid Walk was in good working order and  to explain how to break it down  since his company distributes it. Steve showed  Willie how it worked.  Willie asked about the locking pin and if it was a problem, I started to explain that we thought it was a problem, but that Steve had just showed me how to use it (before we had not be using it at all), but  Willie interrupted and said, “It’s a problem? Yes or no.” Ugh. Mostly though he was pleasant enough. But he did mention other kids were denied bus service based on equipment issues and that their parents had to bring the equipment and  children  to school themselves.  Whoa! That’s not legal is it?

My hope was  to explain in a rational manner  that  denying  a child  transportation based on her special needs qualifies as  discrimination based on disability. If she qualifies for bus service in every way except for her disability then policies need to change. And if they deny her  again I  will be forced to fight this legally. I think I communicated that.  Willie wanted me to see it from his perspective. I can understand his perspective, but I could never agree that denying my daughter bus service  would be in the best interests of my daughter or the community. (I started to cry. Ugh.)

He said we’d know tonight or tomorrow what their decision is.

I feel like I’m fighting a system of apathy.

The idea of a legal battle makes me sick. But hearing about other kids being denied service because of their equipment makes me feel sick too. Just having to fight this at all makes no sense to me.  It’s just illegal.  And this is an emotional hardship on our entire family when something like this happens. This is not the first time that we’ve been denied some service through SDUSD because of Laelia’s special needs. This is not the first time we’ve heard loud and clear, “We don’t want you.”

And Laelia’s self confidence just gets chipped away when this crap happens.  I sat down with my daughter on the front step of our home after they left and we talked about how much everyone wanted her to be able to ride with the other kids. “I want to ride the bus!” Laelia said, “But it doesn’t want me.” I told her that  Willie and Steve came over to our house just to try to work out bus service for her because she was so neat. (Okay maybe this is fibbing a bit. The transportation people are actually the problem, but since  Willie has a first name that she knows, then in Laelia world  he’s  one of her  friends, and it would be hard to explain that he’s not on her side.) She said that made her happy and she wants to ride with her friends again.

Then she asked if they’d let her drive the bus. :)

Five videos of standing and walking and just being a kid.

Saturday, September 24th, 2011

Here are a few videos we’ve taken in the last few weeks. Laelia is getting a lot stronger as you will see! She gets up on her knees and behind her caster cart all by herself to knee walk! She’s taking more steps with her knee immobilizers! She’s standing in her KAFOs (knee braces)! And she’s just super adorable in general. :)

(PS: These videos will not show up if you are signed up for  the posts to be emailed to you. You must jump on Laelia’s actual website to view them. You can also try going directly to YouTube to view them, especially if you are using your phone.  My user name  on YouTube is recordsky. Enjoy!)

 

 

 

 

 

The last four weeks in pictures

Saturday, September 24th, 2011

 

Standing therapy while being pushed around. :)

“I’m Daddy.” (Chocolate mouth.)

Swimming!

“These stairs have water on them! That’s silly!”

They’re all sleeping… sure they are. :)

Tent (before)

Tent (after)

Princess dress for church.

Reading Fancy Nancy while wearing a Fancy Nancy dress.

She called herself Super LadyBug!

“We’re robots!”

“We. Are. Robots.”

Waiting for the school bus on the first day of school.

Waiting for over an hour. (It never came.) Squishing ants.

First day of KAFOs. It was pathetisad.

Ugly boy shoe.

Beautiful Dora shoe with room for KAFOs!

I tore out the tongues and the lining/insoles.  Now they  fit great!

More standing practice.

Crazy girl. :)

Walking Party! Quack!

Sunday, September 11th, 2011

Laelia’s walking party will be October 1st from 3:00 p.m. – 6:00 p.m. here in San Diego. Email Alexis for directions. My email is recordsky (at) gmail (dot) com.

The theme of the party is QUACKS! If you want,  bring a rubber duck as a present for Laelia who has  quite the buoyant  birdy  collection going. And if you want to go all out, bring five rubber ducks to represent the five big-shot pediatric orthopedic doctors who told us Laelia would never walk, and implied we should give up on her. Or as I like to call them: Quack #1, Quack #2, Quack #3, Quack #4 and Super Quack #5 (who we had to board a plane and pay out of pocket to see).

Now I have to say that  Quack #1 helped our daughter’s limbs (after our wonderful and pushy OT got involved),  and Laelia has a small crush on Quack #2 (because he’s cute), and of course Quack #5′s support staff gave us great ideas for PT, but that does not change the fact that no matter how great you guys are, NEVER TELL PARENTS THAT THEIR KIDS WILL NEVER ______. Got that little duckies? Great. You’re also invited to our party. I wouldn’t wear name tags though…   <3

This party is dedicated to our friends and family who prayed that  their loving God would spoil us for no reason,  and who provided babysitting, emails and encouragement along the way. You guys included Laelia in activities, treated her like any other kid  and didn’t coddle her. I appreciate you so much. You deserve every good thing in the world, starting with  chocolate cake.  :)

This party is also dedicated to  the members of AMCSI who encouraged us not to give up  after  visiting Quack #5 (because we were at that point), the inventers of the Kid Walk,  the wonderful staff at Shriners Hospital for Children in Philadelphia and especially to Laelia’s doctor, Harold van Bosse, who performed the long-named surgery that got her on her feet.

Please RSVP since apparently  I’m inviting the entire Internet and need a head count for cake.

Because there will be cake.

Because when you walk for the first time in your life, let’s just say  chocolate cake is a given. ;)

Hope you can make it!

 

Sincerely,

 

 

One Proud Mama

 

PS: In case you missed it, there will be chocolate cake. Laelia made me “tell them again because maybe they don’t remember.” :)