See Christian and Lola's ISR video!

Thursday, March 27, 2014

Am I the only one who thinks IEP meetings aren't terrible?

We attended our annual IEP meeting Tuesday.

Am I the only one that doesn't think they're terrible, horrible, stressful meetings? Maybe it's my nature. I don't know. Maybe I would feel differently if I was going to meet up with a bunch of neurologists and doctors every year. That would be seriously depressing.

But IEPs? They're actually not bad. In fact, they're borderline enjoyable.

I think this is true because first, and most importantly, I truly believe his team at school - his teacher, therapists, administrators, his SPED teacher and his aid - all care about Christian a lot and they all want to see him succeed and thrive. Going into the meeting knowing this helps.

I always to to bake. Or at least bring something (like this last time because I completely forgot about the meeting). I learned this from my friend, Jenny. And from one of Christian's early interventionists. She had mentioned that a mom brought something to the EIP meeting and it set the tone for a more positive meeting and she always remembered it. Sugar neutralizes everything. I've been doing it ever since and, at the very least, everyone is excited to see you. How can they argue with someone who just brought them cookies?

Our IEP meetings aren't terrible. This may sound, indeed, terrible but I think it's because nobody really knows what to expect from Christian. Not even me. This time last year I would have put money on Christian learning to communicate and give us yes answers with his eyes. I thought this was the way we were going.


Christian had other plans and so did his voice. He actually started intentionally looking at and away from things and using his...VOICE. Who would have thought he'd use his voice to communicate anything other than crying? This kid. The one who didn't make a peep for six weeks after his accident. And then did nothing but cry for two years afterward. And now he makes sounds when we ask him if he wants something. And it's pretty damn consistent.

So everyone pretty much expects nothing from Christian, which may seem bad, but it's really because nobody knows what to expect. Especially looking at him. I'm sure if you read this blog you've seen pictures of him. He doesn't look like he can do much. But he's got you fooled, people.

Back to the IEP, because nobody really knows what to expect from Christian, everyone is always very pleased with his progress. He has grown leaps and bounds this year. When he's evaluated for goals he is rated from 0-5. For example, he has made a choice using his switch 3 out of 5 times. And it's measured every quarter for consistency. What his team is discovering is it's not whether Christian can do what is asked. It's about time. He just needs extra time.

And his kindergarten teacher reported that everyone loves Christian. All the kids want to read with him, choose him as a partner, sit with him, and I had to bite my lip so I didn't cry like a baby. That's what I want for him. Love and acceptance.

So we made some goals for next year. And I think we might try the...b...b...bu...bus. I'm not sure I'm ready for it but he is. He already rides the bus to and from field trips. It's me who needs therapy for this.

I'm just so pleased with his team. His SPED teacher is amazing and fights for what we want and makes sure it is written in the IEP. And his aid? Don't even get me started on his aid. She speaks Christian.

She sent me these pictures from her phone.

He's in excellent hands. I'm sure of it.

Wednesday, March 26, 2014

Still not sorry.

It was Spring break last week so we stopped for Gelato and headed off to the park. I like this park because it was refurbished so it was more special needs friendly. There is a set of swings that are made over-sized with extra support just for kids like Christian. There is even a sign on these swings that explicitly says that the swings are meant for children with special needs.

We've been to this park before. There are usually two swings available but this time there was just one. Literally one. Well, actually none. There was one swing occupied by five able-bodied kids and one swing was missing.

We sat down on a blanket with Christian and watched all those kids climbing all over that swing. I was fine waiting until they were done and just hanging out while Lola and my friend's children played. We watched the kids get rough and one girl fell off and got caught under the swing, started crying, and ran off. The ring leader, a girl of about eleven, kept on swinging the rest of the kids in that one swing higher and higher. Then she got on the swing and stood up on it with the other kids in it at the same time.

Seeing as how the other swing was completely missing, probably because of the same type of activity, and seeing as how I had just seen a little girl fall off and get hurt, I yelled over at the girl to stop standing on that swing and that's not how that swing should be used.

She got down but kept rough housing with the swing, pushing three other kids on the swing at the same time higher and higher. We had been waiting for them to finish with the one swing meant for kids with special needs. There was another regular swing set in the park, by the way.

I finally just got up and walked over to the ring leader and said, "Okay, you need play on this swing appropriately. This swing is meant for children with special needs and there is a regular swing set you can go over there and use. I've already seen you stand on this swing and I saw the other little girl fall off and get caught because of how you were playing on it. So if you're not going to use this swing correctly, you need to get off." Or something like that.

She nodded her head "okay" and then left. I went to sit down and another blanket of moms that had been watching this ring leader and all the kids swinging mouthed to me, "Thank you!" I gave them a thumbs up.

See, I wasn't just the crazy lady at the park. There were other moms looking along and thinking this ring leader had to be stopped.

I picked up Christian and walked over to the swing. We got to swing! He smiled in one position, cried in another, and almost fell asleep in the final position we tried.

Then came the summer camp kids. A kid with a green shirt about eight or nine years old ran up to our swing. He positioned himself closely on the side, almost in front of our swing so that we might hit him.

And this is what happened:

Kid: "Hey! Can I swing on that swing?!"

Me: "When we're done swinging."

Kid: "What's WRONG with  him?!"

This is the part I usually do one of two things. I either explain that Christian is different, he has a brain injury, etc. Or I ignore it. And I bury it somewhere inside or cry about it later.

But instead I chose a new route.

Me: "Nothing is WRONG with him. He has special needs. Now, back up."

He ran off to play elsewhere.

And I didn't feel bad about it at all. In fact, I felt like I was standing up for my kid, who surely can hear what other kids say about him.

I felt so NOT SORRY for what I did that I announced it. To Facebook. In a triumphant roar, I told our story, like I've done so many times before.

And you know what? Someone had a problem with it. I think I was accused of complaining and basically being unkind to a child who was just a wittle baby of eight or nine years old who didn't understand and that I should have taken the time to simply explain to him why Christian is different. There were harsh judgements made about how parents of children with special needs should act from someone who has zero children with special needs.

So this lady obviously DOES NOT know me. If she knew me she'd know that I educate people about Christian on a daily basis. A DAILY BASIS. And sometimes it is too hard to respond to the hurtful words of others so I just ignore it and feel bad about it later. This time? I stood up. I wasn't as patient as I should have been. I'm human. But guess what. It's not my job to teach all the time. I'll teach nineteen times. The twentieth time I'm tired.

But you know what else? My friends, my loved ones...they know me. They spoke for me when I couldn't and didn't know any of the commentary about my post was actually happening. They know I rarely, if ever, complain about our lives. They know that we educate, we connect, we try and support other parents - parents of all types of children. They know me. They know I'm not perfect. These are my people. And they roared for me.

Out of all this I realized three things:

1. Never, ever make judgments about how parents who have children with special needs should act IF YOU DON'T HAVE A CHILD WITH SPECIAL NEEDS.

2. We have a bad ass support system.

3. I'm still not sorry.

Thursday, February 27, 2014

Moving {On}

So we moved.

When moving commences things are unearthed from the dark corners of the closet. You repeat phrases like, "How did we accumulate so much stuff?" and then you pack it up and move all that accumulated stuff to the next house's dark cornered closets. Or am I the only one?

I was pulling stuff out of dark cornered closets and out from under dressers where I'd shoved old memories I didn't know what to do with. The whole process of moving makes you revisit things and decide whether you'd like to keep them as part of your life or toss it and move on. It's tiring, it's lengthy, it always takes longer than you think, but when you're purged and moved into somewhere nice and clean and new it feels good. That's when growth happens.

We never quite unpacked in the last house. We were there less than a year. Let me tell you the story of this house.

Our good friends owned the last house we ended up renting. They bought it to rent out when Christian was just a baby, pre-accident, and when we weren't looking for anything to rent. Manny did some work on the house to get it ready to rent out and I went over there a few times and thought it was a cool house. It had a pool outside and fruit trees, it was tri-level like my aunt's house in Colorado, which I loved. But, again, we weren't looking to rent at the time so it wasn't something I spent too much time thinking about.

Then a few years later, post-accident, when we were looking to rent we asked if the house was available. It wasn't. I think we might have asked every year after that. It still wasn't.

Then last year it was available. Just like that. So we moved into it right away.

But it has stairs.

So? We aren't letting stairs get in the way. We'll just carry Christian up and down those stairs. No big deal! He's not that heavy, anyway.

But the pool? Aren't you scared?

No way! We aren't letting this scare us out of having fun with our kids! Christian loves the water! Now he can have some pool therapy and Lola can practice her swimming skills. We'll have parties in the back yard like before. We'll put up a fence, we'll put an alarm on the door so it sounds an alarm every time it opens and closes. We'll nail the doggy door shut. It'll be fine!

So we did all that. We carried Christian up and down the stairs to his room every day. We secured the pool area. It was on lock down. And, yeah, there was a doggy door that stared me in the face every day. But it had a very symbolic bolt through the latch so it would never be opened. We didn't have as many pool parties as we had long ago, pre-accident. In fact, no matter how big and bad and tough I thought I was when it came to having a pool, no matter how brave I tried to be telling myself I wasn't going to let it stop us from living our life, it didn't stop the ominous feeling I had when I looked at that pool. It didn't erase the imagery. It didn't give me warm, fuzzy feelings.

We tried it. We tried to go back. It wasn't just with the house but with a few other things that came up over the last year where I think we tried to do things like we used to. We thought for sure we could go back and it would be fine. But sometimes you can't go back. It doesn't make sense and it no longer works. We're a different family. And it will be that way forever. The rental became a symbol of a whole lot of trying to go back and be that "normal," fun family we used to be despite wheelchairs and therapies. It was a house with stairs that I wanted us to live in long ago but it didn't work. And sometimes when you try to go back, it just doesn't work. You find out that stairs are absolutely ridiculous with a wheelchair and pools just might always be ominous.

When we found out we were finally in a position to buy, it was momentous. We decided immediately we wanted no stairs and no pool. When we finally packed up it hit me that this felt just so right. Like I mentioned at the beginning, we never really fully unpacked when we moved into the rental. So packing up, although it wasn't the funnest thing, it was easier. Because we never belonged there.

Looking back over the past year I realized we had so many tests and circumstances where we tried to go back and we were proven time and again that we didn't belong in the past. We are different. Forever and ever we are different. And you know what? That's totally okay. Moving on from all the things I thought I wanted, moving on from the fear, moving on from things that don't work or things that don't make sense, it all feels very cathartic. And maybe we're not the old "normal," fun family. We're now different and fun. Definitely still fun.

Where we are now? This is home. It's where we fit.

Friday, February 21, 2014

An Update at Long Last!

I can't believe it has been so long since my last blog post. After I lost the domain name for my other blog at Momma Candy, I had to step away from blogging for a second. Not only that but the beginning of this year was like shooting a cannon ball out of a cannon. Non stop!

And we moved!

Yes, again. Yes, it's been less than a year. There are many reasons we moved again but the main one was that we used to rent and now we own! The last house we were in had stairs and levels and more stairs. So we quickly found out that living in a house with stairs was absolutely ridiculous. Know how many stairs the new house has? Zero.

Christian also has his own room now. No more sharing with sister, as if either of them cared. I can't wait to share pictures of everything. But right now we're still putting things up on the walls and clearing out the last few boxes. This is home and we love it.

Christian is doing okay. The insurance he has enrolled him in a clinic that we'd heard of that other children with special needs attended. I've heard of these centralized programs where you go visit for the whole day and you're seen by several different doctors in the same day. Kind of like a one stop shop. When we first got out of the hospital I just started making appointments. I didn't wait around for anything. This created our own network of doctors we handpicked and a scheduled with appointments I scheduled when we needed them - neurology, orthopedics, pediatrician, additional therapies. But I always wished for a place that was a little more inclusive, where other children with special needs attended, with specialists, maybe a physiatrist. This is the place! They also hold wheelchair clinics and a CP clinic that might be helpful.

However, I'm already seeing the downside. They make all my appointments. I forget them all and I don't get upset about it because, frankly, I hate appointments. I feel like I've lost a little control and that bothers me. I purposely shelter us a little so that we can do our own thing. He's a little boy and we're a family. Not a medical patient and a science experiment.

My first impression of this clinic was - Wow! It really was built for children like Christian. And there were other children like Christian there. So this is where they had all been hiding out! It's what I had envisioned and seen from friends in big cities with their children.

On the other hand, I felt a little like we were under observation. Of course, that first appointment is a getting-to-know-you appointment. But we spoke with a new pediatrician (not sure why, I have no intention of changing ours), we spoke with a nutritionist who was whispered to behind a closed door that we were doing the blended diet. Luckily, she seemed supportive. But suggestive. Have you tried this? Have you tried that? We're good. Thanks.

We also talked to a social worker, which is routine for the first appointment, I guess, but it felt weird.

So I'm giving this clinic, centralized, one stop shop thing a go. We'll see how it turns out.

Christian has been doing well in school, working on communication, and he's super tight with his fabulous aid and teacher who would move mountains for him.

I am, however, concerned about his seizures. For some reason they've become stronger and he has even lost his breath a few times. That's kind of a deal breaker for me. The only thing is that it's paired with congestion and phlegm that don't seem to be tied to any kind of sickness. Probably just allergies. So I'm wondering if I should wait to see if it passes or call the neuro tomorrow. I think I'm going to finally call. This isn't passing and I have no idea why. I'm afraid he's going to tell us we need another EEG. For what? To find out he's having seizures? We already know that. Do we increase meds? Great. Whatever it is we have to figure out something. There are seizures we can live with and these aren't those.

Other than that, Christian is plugging along. He didn't get to go to school for Valentines Day because of the seizures and congestion but we did put together our annual 3E Love Valentines and dropped them off for his class. When he came back to school he had a backpack of Valentines and candy!

It's warm here now and we're experiencing some beautiful weather here in Arizona. But back when it was cold Christian could really rock a beanie. Dude.

Christian also got an award at the beginning of the year and we love celebrating this. Sister is so proud.

Despite all the seizure nonsense, we can still be thankful that Christian is doing okay in most other ways. He is still "talking," he still smiles, and he is so loved. 

I've got more to write about like more about our move, what Christian got for Christmas (and my annual gift guide for children with special needs), and some other things on my mind. Promise it won't be another month until I update. See you soon!

Wednesday, January 1, 2014

Take Care of Each Other

We were invited to a birthday party a few months ago of a little boy close to Christian's age. It was at a park.

Christian is getting bigger and not looking like a baby so much so we get a lot of stares. We have a safe little bubble, our family, his school, of people who know him and love him. But when we step outside of the bubble it's glaringly apparent that Christian is different. Those who stare the longest and even make comments or look terrified are usually kids, mostly boys, that are pre-teen, around the ages of 8-10.

So you can imagine why I might have felt a little anxiety about going to a a park...full of kids. This feeling isn't like me. I'm usually brave. But I've started to feel small in these situations. I really shouldn't. Kids get stared at all the time for all sorts of reasons. But when it's your kid - your baby - it's different. It's a knife in your chest.

But I'm not one to let any situation hold us back, even if it makes us uncomfortable. I faced it head on with a little prayer to God to get me through the ordeal and take care of us.

I know it seems like I was making a bigger deal out of it than it should have been but sometimes things hit and you don't know why or when. They're sensitivities that you don't even know exist until you're faced with it head on and it makes you question any and all healing of your own psyche that has taken place thus far. Grief is never truly over. Anyone who has grieved over something will tell you that.

Take, for instance, tonight. I put all of the Christmas decorations away and that always causes such introspection and thought about where we were last year, where we'll be next time we pull all these ornaments out again. But tonight I had to put away all the little Baby Christian ornaments. The one of him on a rocking horse that says, "Baby's First Christmas." The photo of him on his first visit with Santa. Little goodbyes. Of course, any mother gets sad reminiscing about her babies' firsts but this is different. It cuts different.

Anyway, I'm on a tangent.

Back to the park. We went to the party. I was my happy and merry self so as to make sure nobody was uncomfortable or sad for this child who was clearly disabled. There were so many kids there. So many. It was a park on a Saturday, go figure.

And just when I thought this whole shindig would be okay, no harm done, one of those damn kids had to say something. Not from the party. Those kids were fine. It was a random kid, a boy, around ten. He was talking to his mom and she was talking to him about Christian because her younger son took an interest in befriending him. She quietly asked her older son if he knew why Christian was the way he was (as if she knew), and he said, "Yeah! That's what happens when kids get sick and die."

His mom was embarrassed and tried to correct him in hushed tones and they were a little too far away from me to correct. That, or maybe I just wasn't feeling all that brave.

I swallowed it and headed toward the swings with Christian. They were swings adapted for special needs and another mom was there with her daughter. When she saw us coming she told her able bodied daughter to get off the swing so Christian could get on but she lingered nearby. I scooped up Christian and went to go sit with him on my lap since there wasn't much support in the swing for him. It would be quite the maneuver trying to sit down into a moving swing with him in my arms. I started to back up and out of the corner of my eye saw the lingering mom move quickly over to our intended swing, reach out an arm, and stabilize the swing so I could carefully sit down without falling on my ass. I thanked her and she looked me in the eyes, smiled, and said, "You're welcome."

We swung. We flew. He smiled and the rest of the park kind of faded for a bit.

The rest of the party was fine, uneventful even. We made it through in one piece and the world didn't end. My little prayer was answered, we were taken care of.

In this New Year look around you. Does someone need comforting? Is there a friend that needs you to listen for a little while? Can you do something for someone else just to be nice? Are you kind? Even online? I heard this somewhere else but if you aren't kind on the internet, you are not kind.

Is there someone that needs you to open their door? Maybe there's someone who needs you to hold her swing so she can swing with her son.

In 2014 take care of each other.
Wednesday, December 18, 2013

Updates, the Dentist, and an Early Christmas Present

I haven't updated in so long!

In this case no news is good news. Christian is doing great. Aside from a few short-lived kid colds, he's had no major sicknesses and I couldn't be happier. No throwing up, no nothing!

We had a great Thanksgiving and that holiday is one that reminds me how thankful I am for a blended diet. Everything we ate for Thanksgiving, Christian got to have in his blend. It's such a blessing to be able to share these traditions with him in our own way.

But, wait, Christian didn't just get to experience having a Thanksgiving turkey, mashed potatoes and cranberry sauce through his tube, he got to taste them, too! On Thanksgiving he actually got to have some sweet potato, mashed potatoes and gravy, whipped cream, and ice cream (his favorite). He wasn't crazy about the mashed potatoes, which didn't surprise me because he likes things with a lot of flavor. But he liked the sweet potato and, of course, the ice cream. He didn't just taste it either, he ate a good bit of it, too! He's doing so well with taking things by mouth. Food has definitely become a motivator to get him to vocalize and make some choices.

We've also started to work with his speech therapist at school on a new communication system that will teach Christian how to respond consistently using a "Pods" system. We'll be working that out and beginning that next year. I know he has things to say we just have to figure them out! He's not the one with the problem, it's us!

Yesterday we went to the dentist and he did great! No cavities or decay. That brushing at least three times a day with the Frazier Water Protocol is definitely paying off. But now Christian is toothless! He lost his four bottom teeth (and his adult teeth are right under the surface) and now his two big top teeth are gone. My theory is that his gums had been swollen and taking over his teeth for a while. When we increased the brushing, his gums stopped swelling and released the hold on his teeth a little and out came his teeth!

Other things we learned at the dentist:

Wheelchairs make the best dental exam chairs.

We also asked about a palate expander. Because Christian doesn't use his mouth to eat regularly, his mouth and palate did not form correctly and the roof of his mouth is really high and narrows toward the airway. This malformation could cause problems down the line with his breathing as he gets older. So a palate expander will hopefully open that narrow area up more, allowing more air flow as he grows. We have no breathing or apnea issues NOW, we're just planning for the future. We have a consult with an orthodontist next week.

Because Christian had a dentist appointment I decided that afterwards would be a mom and Christian date. So we skipped school and headed off to the mall for some Christmas shopping! Part of one of Christian's Christmas presents was to go to Build A Bear and design his own bear. We all know Build A Bear has a ton of accessories for the bears but a few months ago I found out they have little wheelchairs!!!

So you can guess what will be under the tree for Christian, right?

It was a fun experience, though. I went early in the day so we were the only ones there. The staff paid lots of attention to us and spoke to Christian directly, calling him by name, and saying, "Bye, Christian!" as he left. Those things are important. Christian got to pick his bear by feeling them and looking at them and he made definite choices using his little smiles, his active hands, and his voice. And then you know the part where you have to step on the pedal to make the stuffing go? Well, we just rolled over it to make it go!

Sometimes I never know how these experiences will go. Will he respond? Will he like it? Will it be a bust? But this experience turned out better than I expected. He actually did make choices and look at the animals and it's going to be a great Christmas present for him!

So that's what we've been up to! I have a few more updates and thoughts on my mind to come but as far as Christian goes, he's doing great!

Friday, November 8, 2013

The Best Halloween Ever

Hello, Everyone!

I wanted to update about Halloween! It was probably the best Halloween we've ever had.

We decided that Christian would be Jake and Lola would be Izzy. It worked out because Lola loves Jake and the Neverland Pirates and Christian often watches the show with her. I also wanted them to match because it's only so long that Lola will want to match with her brother.

So I bought the costumes at Target and then it was on to building Christian's other costume. His wheelchair costume!

Jake and Izzy needed a pirate ship.

Daddy constructed a ship out of cardboard that fit directly on to the wheelchair. Then Mommy decorated it and constructed the mast out of a sheet of felt and blue streamers.

Then it was time for Christian's school parade! Everyone was high-fiving all of the parade participants but when it was time for Christian to come around, they all stopped and cheered. I could hear kids saying, "That's awesome!" and "That's the winner!"

There was no contest but it was hard not to cry all over the place watching them cheer for him. One little boy even said, "Oh, man! I wish I was in a wheelchair!"

Later that night we went trick or treating and all the kids from school recognized Christian's pirate ship. We kept hearing kids yell, "Christian!" in the dark. They'd come over and say hello. Parents said hello and commented about what a cool costume he had. And cars even pulled over to check Christian's costume out. An Escalade rolled down its window and the man yelled out, "That's tight!"

It was amazing. So much acceptance over something so small as a Halloween costume. All of it was so worth it. Just some cardboard, Duck tape, felt, streamers, and hot glue bridged the gap and bought Christian a bunch of new friends. Even retelling the story can choke me up.

We can never move schools. These are his friends. They all know him and want to help. We are so blessed.

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