Tuesday, November 27, 2012

Mobito Go!!!

Andrew recently outgrew the small big wheel style tricycle that he has had since he was a preschooler. He was very sad that he could no longer use his bike since it is something that he enjoys doing tremendously. We know that he cannot use a regular bike because of lack of balance and lack of the ability to catch himself. It just plain isn't safe. Plus, he has to have his feet strapped in so that he can pedal. Special needs bikes are RIDICULOUSLY expensive and he is too small for the adaptive kits that you can buy online. So, the search for the perfect "bike" was on.

After researching like crazy, talking to other parents, and discussing it with his PT, we decided on the Mobito tricycle. It is a low to the ground tricycle and comes in a variety of colors and sizes. It is meant for typical kids and looks super cool, which is something that is very important for my self-conscience 8-year old. It EVEN has flame stickers on it (it's the little things that count).

The huge box was delivered to our house and our son was incredibly excited as he waited for Daddy to get home from work to put it together. Assembly was fairly smooth and took about an hour or so, even with Andrew "helping." We put Andrew on it, strapped his feet in, and away he went!

Andrew LOVES his new bike. It is easy enough for him to pedal with his reduced leg strength and is easy for him to turn and stop. The turning radius is wide, so there has been some learning that he has had to do. He does occasionally get stuck because he forgets that he can't pedal backward like he could on his other tricycle (it is like a traditional bike that coasts when the pedals are stopped or pushed backward). Most excitingly is that he can finally ride a bike around, including riding in the street (under supervision of course) and up the sidewalks in our neighborhood.

We have had the bike for about 2 months now and Andrew is still in love with it. He works with his PT on it and also rides it fairly regularly with me. Where he used to get stuck on even the smallest incline, he can now ride up large hills and driveways. Where he used to only be able to go up about 5 houses away from our house (up a fairly steep hill), he just yesterday rode .6 miles to the entrance of our community. He is working hard at it and loves that he has a way to get further distances. He is also working out those legs and gaining some much needed muscle.

I had looked at other tricycles that are similar in style to this one, but I have read that they are all much harder to pedal and control. Also, they are only slightly cheaper and are a lot more cheaply made. This one is easy to pedal and I can tell it will last a long time. It has real bike tires on it (the back ones are 12 inch, the front is 16 inch) that can be inflated and even replaced if need be. It isn't cheap, but it is a whole lot cheaper than the special needs trikes we had been looking at.

Overall, this is a great bike for a special needs child who has reduced strength or balance issues. It still requires them to do the pedaling and navigation on their own, so it would not be good for a child who is not capable of doing that. There is no parent handle. Luckily, we no longer really need that, but the first couple of weeks I was wishing that it had every time that he got stuck. Now, he rarely gets stuck and rarely needs help, so it is no longer an issue.

Tuesday, November 13, 2012

Teaching Kids To Be Thankful #1: Thanksgiving Thankful Garland

The countdown to Thanksgiving has begun!

Also, the countdown to Christmas has begun. My kids are constantly saying, "Mommy, I want this for Christmas. I want THAT for Christmas. Look at this! I want it!" I want, I want, I want is all that I am hearing lately. I have tried, with limited success, over the last few years to teach my kids to be grateful for the toys that they have. We have talked about how lucky they are to have so many nice things when so many kids go without. We have had the kids go through their toys and donate the ones they don't want or ones that they think someone else would enjoy. We regularly sponsor kids through the YMCA or through our church for Christmas and pick out gifts for those children. Yet, they still don't seem to really understand what it means to be grateful for the things they have.

Like most things with my boys, this skill is going to have to be explicitly taught to them. Since Thanksgiving is a day set aside for giving thanks for things you have, I figured it was the perfect opportunity to discuss all of the things they have and come up with a list of things they are grateful for. Besides giving thanks only for the material things, I want them to understand that they also need to be grateful for the non-material.

Thanksgiving Thankful Garland:

I bought the thin foam leaves used for this garland in the dollar section at Target (go figure). It really turned out so cute! We hung it in the school room for a constant reminder of all of the things that we are thankful for.
  1. Brainstorm about the things for which you are thankful. Benjamin had a really hard time coming up with things that were not toys at first. So, I decided to write down things that I am grateful for as an example. I allowed him to write ONE sentence about his toys, but the rest had to be something different.
  2. Write the things that you are thankful for on the leaves. Since the space was small and neither Ben or Kate have the fine motor skills to write legibly quite yet, I decided to do the writing while they dictated to me. I then put their name on it so we remembered who was thankful for what. 
  3. Punch a hole in all of the leaves. Since they are thin foam, they are easier to punch holes in than regular paper. The hold puncher slices right through the foam, but it is sturdier than paper.
  4. String them together with yarn. I wrapped the "lacing" end with tape to make it easier to get through the hole. Make sure the leaves are all facing the same direction so that the writing is visible. Variation: use it for patterning by color. I thought about this after it was half-strung, so I just let it go.
  5. Hang it up! We have ours in the school room right now, but my original plan was to hang it in the kitchen so that we could discuss it during meal times. 

Ben attempting to punch holes.
Lacing the leaves onto the string.
Ben finds this very difficult, but was able to do a couple of them.
Closeup of the leaves before hanging.
The finished project!
My favorite: Ben was thankful for vacations.
I like it because it was completely his own idea.
This was super easy, inexpensive and is probably my favorite of all the activities that we have done so far this school year.

  • Fine motor skills: using one hand to hold and the other to punch holes; using one hand to hold while the other laces the string through; punching holes with the hole puncher (similar to using scissors).
  • Verbal skills: putting thoughts into words/sentences;
  • Differentiating between material/non-material things.

Monday, November 12, 2012

Great Special Needs Gift Ideas!

Looking for a game for your special need kid that will help with a skill that you are working on? A friend (and Occupational therapist) has a blog where she has listed some great ideas for gifts. She has some for visual discrimination and some for auditory processing. I think many of these are going to be big hits with my kids and only I will know that we are working on some very important skills. They are  "typical" kids games, not games made specifically for special needs kids, which is extremely important for my self-conscience 8 year olds. Check them out!!

Embrace Your Chaos: 101 Ways to Play (#25): Toys and Games to Build Auditory Processing Skills

Embrace Your Chaos: A Few of My Favorite Things….Holiday Gift Ideas

101 Ways to Play: #23 Toys and Games to Build Visual Perceptual Skills

Honestly, I cannot say enough positive things about this OT. She was great with my boys in the short time that they saw her and she always came up with such creative ideas for them. Follow her blog... it's amazing and I can't tell you how many ideas I have gotten from it.

I will also be compiling a list of toys that I have found to be very useful with teaching my boys new skills as they have grown up. Check back soon for part 2 of "Great Special Needs Gift Ideas!"

Thursday, November 8, 2012

Halloween Party Recap

We have been super busy here. My mom came into town (which was awesome) and we tried to fit in all of our pre-Halloween activities into her one-week long visit. Then, in anticipation of company coming to visit for Thanksgiving, my hubby and I decided to paint our entire downstairs. He has a new paint sprayer that he has been itching to try out. Every single room in my downstairs was in complete chaos and my computer was shoved (unplugged) into a corner for 4 days. It was worth it and the new color is spectacular, but boy was it a lot of work. So, better late than never... the Halloween party recap!

The kids decided that they wanted to have a Halloween party this year. We kept it simple and served cupcakes, potato chips and juice boxes for the kids. We had a veggie tray and lemonade for the adults. The vast majority of the decorations were created by the kids or bought super cheap at Walmart. We played a few games and had the kids free play in the playroom upstairs, ending the party 2 hours after it started. We had a total of 18 kids there in their costumes and everyone seemed to have a lot of fun.

My kids in their costumes.

Waiting anxiously for their guests to arrive.
Even I dressed up...sorta.

The cupcake table.
Decorations from Walmart, cupcake stuff from Target.

  • Pumpkin Decorating
    • I found foam face stickers at Target and Michaels for really cheap. Each kid had a "pie" pumpkin that I bought at the local grocery store for between $1 and $2 a piece (we cleaned out 2 grocery stores by buying 20 pumpkins). I also put sharpies on the table for the kids to use. This was definitely a favorite.

Before the chaos. Kate helped set up the pumpkin decorating tables.
Kate and her cute pumpkin.
Andrew and his creepy pumpkin.

  • Pin the nose on the pumpkin.
    • Once again, thank-you Target dollar section! The game was only $1 and included the blindfold. I made more noses since I had more kids than the 5 triangles that it came with. I put numbers on each one and had the kids remember what their number was. 

  • Pass the Pumpkin
    • Think "hot potato" only with a small plastic pumpkin and fun Halloween music.
  • Monster Mash
    • Freeze dance to Halloween music, including "Monster Mash." The kids had a blast with this one! 
I think that we might just make this an annual event. The trick will be for me to figure out non-scary Halloween games that are age-appropriate for the kids that are there. The ages of the kids in attendance ranged from 4 to 10. One of the 10 year olds found some of the games to be embarrassing (like the Monster Mash), but overall, everyone seemed to enjoy the selection.

Kate designed the goody bags out of brown lunch bags and a printout of a ghost (http://www.pinatas.com/Halloween_Party_Crafts_s/713.htm). She cut out and glued on each one... all 20 of them! She even "wrote" a note for each person and put them in. I was pretty impressed by her dedication. The goody bags were simple. Each child got an eyeball bouncy ball and a Halloween temporary tattoo, both purchased in the Halloween section at Target. I then made ghost lollipops using tissue paper and rubber bands. I found some styrofoam in a package that arrived a couple of days before the party and stuck the lollipops in as a decoration. The kids each got to pick their favorite one before leaving. 

Super simple and super fun! I really like how everything turned out and it was great to see the ideas that my kids have come to life. 

Wednesday, October 31, 2012

Little Miss Katie... growing up with special siblings

Kate belongs to a very exclusive club of being a sibling to special needs kids. The normal older brother/younger sister relationship has been altered.

I receive questions from lots of typical and special needs parents about the relationship between the boys and Kate. There are also a lot of misconceptions about our reasons for having another child after having special needs kids. I literally get asked these questions by complete strangers while walking through the grocery store. Here are the most common ones and my responses to them.

"How do you handle the fact that your daughter will pass up the boys in skills? Don't your boys get jealous or feel bad about themselves?"
  • My answer to this is that we make a big deal about everything that each one of the kids does. If Andrew stands independently, we cheer... even if he is 8 years old. If Kate learns to skip, we cheer. If Benjamin writes his name clearly, he gets a high five. If Kate writes her name clearly, she gets a high five. We treat each child's needs and achievements as their own. There is rarely comparison between the kids regarding their developmental skills. I try really hard not to say, "Your four-year old sister can do this, why can't you?" just like I wouldn't expect Kate to do something that her 8-year old brothers can. This type of environment has allowed our kids to respect and understand each other's differences and become cheerleaders for each other. It always amazes me to see Kate tell Benjamin that he is doing a good job when he does something new when she knows perfectly well how to do it (like getting dressed independently). They also help each other with things that are difficult for the other child. Benjamin can often be found getting Andrew a drink of water since Andrew can't stand to reach it on his own; or, Kate holds Benjamin's hand when we are in a distracting place so that he doesn't wander; or, Andrew helps Benjamin read words that are just a little too difficult for him. They work together and help each other with the things that they each struggle with. I am not saying that in the future there won't be things that my boys are frustrated with or that they won't get angry that Kate can so easily do these things. We just haven't reached that point yet.

"Doesn't Kate get jealous about all of the attention that your boys get?"
  • Yes. Just like the boys get jealous of the attention that Kate gets. I try really really hard to make sure that each kid gets the attention that they need and that nobody gets more than another. It is a completely impossible task, but I try my hardest. Sometimes, Andrew demands attention because we are working on a new skill. Sometimes, Benjamin demands attention because of homeschooling. Sometimes, Kate demands attention because, well, she is a 4 year old little girl. All kids want and need individual attention from Mommy. It isn't fair to Kate for the boys to get more attention and it isn't fair to the boys for Kate to get more attention. Yes, the boys have needs, but so does Kate. If I notice that one of my kids is acting up more than normal, I look at the amount of INDIVIDUAL attention that they have received lately. More often than not, that child is behaving badly because their needs haven't been met. I will often ask, "Do you need some special Mommy (or Daddy) time?" Usually, their answer is yes and usually their behavior improves. But really, anyone with more than one child has to balance the same thing. My boys' needs just adds an interesting (and difficult) twist to it.
Kate and Mommy on a special trip to Five Guys and the fountains.
"Did you have Kate so that she can take care of the boys in the future?"
  • Nope. If she wants to, great. If not, great. I hope that she will make sure that they are well taken care of because she loves them for who they are and truly cares about them. However, I did not have my child so that I can plan out the rest of her life. She may want to be a research marine biologist (like I wanted to be) or a traveling salesperson (who knows) or a Broadway performer. I am not going to hold her back for the benefit of her brothers. We will make sure that things are taken care of for them if they cannot take care of themselves. At this point, we don't know what the future holds for our boys. They are amazing and are achieving new things everyday. They might have to take care of her, for all I know, and my hope is that the sibling love between them will be enough that they want to help one another out.
Kate helping to lead the boys through the corn maze.
They got lost, by the way. Andrew found our way out.
"Your hands are so full with the boys. Why did you decide to have another child?"
  • I have always wanted a lot of kids. I also wanted to experience a normal pregnancy and a typically developing child. The timing of Kate's pregnancy was God's timing, and it has been fantastic to have her as an addition to our family. And really, who cares whether or not my hands are full. Some people feel overwhelmed with one child and some people don't. There are times that I feel flustered or overwhelmed. But, there are also times that I am completely joyful and fulfilled.
Ben reading the nursery rhyme book to Kate.

"Don't you think that the boys will hurt Kate's development?"
  • Yes and no. Kate was a very early talker. It was probably in part due to the fact that I had a more than the average training in speech development because of my boys. However, she was a very late walker. The reason for this was that Andrew was crawling and that all of the toys were accessible for him. Plus, she did what she saw older kids do. I used to say that Kate could pretend to have special needs better than any other kid I knew. She loved to copy the things that the boys would do, even if they were completely "abnormal" special needs behaviors. Just recently, she told me, "Mommy, when I get really excited, I need to shake my hands and shake my head and squeak, just like the boys." These are all behaviors that are atypical and that we are working on.  So, she may pick up some undesirable things and may not be the first child in her age group to walk, but everything will come to her like it does any typical child. However, she is developing into an extremely caring, understanding individual. She is constantly watching out for her brothers and has no fear or apprehension around kids with special needs. She is compassionate. These are attributes that every parent wishes for their kids, but she has the benefit of being able to put into practice regularly at a very young age. 
Kate was cold in the grocery store,
so Andrew put his arms around her to keep her warm.

What I want people to understand is that siblings of special needs kids are just kids who have been exposed to a world that most children are not. There are going to be issues along the way, but overall, I feel that this exposure will make her into a very compassionate adult. 

Kate and Ben helping each other rake up leaves.

Thursday, October 25, 2012

Legos Education (part 2)

For the boys' birthday, we got them another set from the Legos education line.  This one is a construction set that is a precursor to their more advanced robotics lines. We purchased it on 50% off clearance at the same time as the math set with an understanding that it was what the boys were getting for their birthday. All I have to say is WOW these sets are AWESOME and if I see anymore of these things on clearance, I am definitely going to pick them up.

We broke open this set the day after their birthday when we had nothing else really planned for the day. All three kids spent 3 hours playing with these. They built things, took them apart and built new things. There were enough for 2 kids easily, but with 3, there were some fights over certain parts.

The great thing is that they screw together so that they don't come apart easily. It works on their fine motor skills and makes it super easy for them to build what they want. My boys really love trucks. Andrew was able to build an excavator and put tracks on them, just like he always wanted to with regular Legos, but was unable to with his fine motor limitations. This set comes with idea cards if you want your kids to use them, but my kids preferred to just build on their own.

Anyway, here are their Lego creations.

Not sure what this is supposed to be.
She is my "creative" child.

It's a rescue helicopter!!

It's a tracked giant excavator!!

Oh... and if you are curious about how big the box is, this should give you an idea. It's big enough for a small 8 year old to fit in... sorta. 

Wednesday, October 24, 2012

Show The World The Amazing You

I am attempting to ignore the fact that my children are awake one morning and am cozily wrapped up to my chin in blankets. Then, the inevitable happens. Little feet come running down the hallway and into my room. Being the mom, I can already tell by the sound that it is Ben coming to visit. He comes up to my face and looks at me with a big grin. I peek through one eye and smile back.

"Buenos dias Mom!" he yells.

"Good morning, Ben. I'm tired."

He climbs up on my bed, crawling over me in the process and burrows himself in the blankets next to me.

Sighing, he says, "My feet are cold. I have an idea! I'll walk on your back! That will make them warmer!"

Quickly, he pulls the covers back, climbs on and proceeds to walk up and down on my back in an attempt to warm his feet. I am laughing too hard to mind the freezing cold toes. He's laughing too. He knows that he is being silly.

"Goof ball! Get off my back. Your toes are COLD!" I squirm, trying to make him lose his balance and fall on the bed. He holds on though and I am quite impressed at how much his balance seems to be improving lately.

"Mom! I'm now going to show you a MAGIC TRICK!" He stands up tall on my back and pretends that he is losing his balance. "Whoa! Whoa!! Whoa!!!" He jumps off my back onto the bed and then yells, "Ta da!! That's a great magic trick, huh?"

"Very nice Ben." I try to sound truly pleased. I pull the covers back on and try to convince him to cuddle for just a few more minutes. He obliges, somewhat, and crawls in next to me. However, as I close my eyes and try to drift back to sleep, I feel his eyes peering at me. I am guessing that I will be up very soon.

About a minute passes. Then I hear a whisper, "Mom? Are you awake?" Getting louder and closer to my face, "Mom?? MOOOOO-OOOOM. Wake up mom! I'm getting HUNGRY!"

Ben is silly. Ben is imaginitive. Ben is stubborn. Ben is smart. Ben loves to play. Ben is cuddly. Ben is loyal. Ben is musical. Ben is curious.
Ben being silly with his sister.
Ben gets super excited when he sees someone he knows. He loves to pick Andrew up from school and looks through the glass doors excitedly until he sees him. When Andrew gets wheeled out, he immediately says, "Hi Andrew!" and gives him a big hug.

Just about every day, Ben assigns us all imaginary character names that we are supposed to go by. Today, I happen to be Princess Jasmine. Yesterday, I was Pirate Princess. (I see a trend). If I forget that he is Abu, he stops me and says, "No, mom. I'm not Benjamin. I'm Abu."

Ben loves to play with his sister's dollhouse (don't tell him I told you). He also loves to bring his beloved trucks into the action. There is often a character falling off a roof that needs to be taken to the hospital or a fire that needs to be put out. Sometimes, there is even some construction that needs to be done. And, he LOVES to play tea party with Kate. Of course, he adds a little boy action with pretend vomiting or someone pretend choking who needs an ambulance.

Ben pretending that one dinosaur is eating another.
"The carnivore EATS the herbivore!!"
Just this morning, Ben put on a gigantic pink witch hat and walked around yelling, "BOO!" at everyone he saw. "I'm a SCARY witch! BOO!!!"

If Ben likes you, he will give you a big hug. It's not one of those "sure, I'll oblige this crazy lady and give her a half hug" type hugs. It's a full body, leaning, squeeze with a smile on his face. He truly loves to hug.

Ben plays the piano. He can name any note played without him looking at the keys. He can play just about anything by ear and can move songs from key to key on his own. He "composes" regularly and has about 3 songs that he has made up on his own. They aren't "Twinkle Twinkle" type songs either. They have chords and span the entire piano in length. He likes the way chords sound. Each song goes with a mood he is in. When I asked him what one of the more melancholy songs was about, he immediately said, "It's about how I am afraid of the dark." Not really expecting an answer at all from him, I stood there dumbfounded.

Ben asks questions about things that he doesn't understand. He notices that the clouds turn pink during a sunset. He sees the trail behind the jet flying through the sky. He can tell you what every rescue truck does and what it is called. He has a mental list of all of the Lego City sets and the category that they fit into. He loves to learn new vocabulary words and immediately puts them into his regular speech. He knows where at least 4 states are on a U.S. map and where a few countries and continents are on a world map. He can read to his sister the book Curious George. He knows about 50 spanish words.

Ben talking to Daddy about the Mickey ferris wheel.
He noticed it lights up at night.
So, why is it that nobody sees this child?

When we go in public, Ben changes. He becomes quiet and withdrawn. He will say hi if he knows you, but if he doesn't, he will only say hi when prompted. Even if he does know you, he is sometimes so distracted that he won't get beyond the greeting part of the conversation.

I never really understood that other people didn't see the real Ben until I saw a copy of a report that his neurologist sent to his pediatrician. In it were the words, "No spontaneous speech. Parroting." My heart dropped as I stared at those words. No spontaneous speech? Surely they can't be talking about Ben. Sure, he's definitely speech delayed and his vocabulary is small. Sure, he talks about the same things a lot. But, NO spontaneous speech?

Then I thought about the meeting with the neurologist. We walked in and Ben ignored her completely. She said, "Hi Ben!" and he ignored her. So I said, "Ben, she said hi. What do you need to say." He replied with, "Hi." and then proceeded to do whatever it was he was doing. I am not even sure he said another word during the appointment. I explained to the neurologist all about Ben, but I am pretty sure she thought I was exaggerating. After all, she saw a little boy who went off into the examining room and played with whatever he could find without hardly any interaction from the other people in the room. I get it. She didn't see Ben.... at least not the Ben that I know.

It saddens me that very few people get to meet this funny, silly little boy. It saddens me that people automatically judge him and don't try to get to know him. But, I get it.

So, for now, we are working on him being himself wherever he is. I am trying to push him slightly out of his comfort zone and interact more often outside of the house. We have him in social skills training and work on it every day. Eventually, I hope that he will be able to do these things without my direction. My ultimate goal and prayer for him is that he can gain enough social skills and confidence to show the world how amazing he is.

Tuesday, October 16, 2012

Parent-Teacher Conferences In Perspective

Most parents (or at least I) have the dream of walking into a parent-teacher conference and hearing that our child is a pleasure to have in class, a student leader, perfectly well-behaved, and succeeding in all academic areas. Who needs the "needs improvement" or "unacceptable" columns on a report card? Certainly not my perfect child.

Then, reality hits. Not every child is perfect. When it is a special needs child that you are dealing with, that perspective drastically changes. I know that Andrew struggles in certain areas. His ADHD makes it difficult for him to pay attention and his delayed social skills makes it difficult to work cooperatively in groups. He has horrible impulse control and is extremely stubborn. He is very good at reading, but he hates math and is frustrated that he doesn't get the answers right all of the time.  It is really a struggle for him to learn the math skills needed to succeed. He has fine motor issues related to his Cerebral Palsy, making writing extremely difficult and time consuming. With him, I am not looking for perfection. I am looking for "almost there."

Andrew spent preschool, Kindergarten, and his first year of first grade in the special needs classroom at our local elementary school. We all knew that there was a lot of potential there, but he had some behavioral, fine motor, and self-help issues to overcome. By the end of his first year of first grade, his teachers and we decided that it was time for him to try a typical classroom. He was going to repeat first grade with the same teacher he had for inclusion the year before and be on a resource plan. And you know what? He did great! We had areas that still needed to be improved upon, but he blossomed around typical peers and regular ed curriculum.

Now, Andrew is in a typical second grade classroom with a whole new set of peers and a whole new set of professionals. We had to change schools since he no longer needed the special needs services that they provided at his previous school. I was extremely nervous with this change, but knew that it had to be done. Once again, Andrew put my fears to rest.

The first six weeks of school flew by. I just had my first parent-teacher conference with his new teacher (well, his first REAL, scheduled conference. We confer through email all of the time.). Andrew is doing great! He is working well in groups and is at grade-level for most of his academic subjects. He still needs to work in math (go figure), but is approaching grade level in writing! This is a kid who literally could not write all of his letters at the beginning of last school year. He is now writing paragraphs (although not completely legible) on his own with his classmates. Handwriting is still an issue, but they are also working on typing. He had a few "needs improvements" in behavioral issues like paying attention, but we knew that was an issue. He is even following the school rules on a regular basis. Overall, I am extremely pleased.

So, my child might not be the perfect kid who sits with his hands folded, eagerly awaiting the next academic subject to come his way, but he is his version of perfect. He is succeeding when it wasn't always clear if he would be able to. He is learning to be around typical peers and the typical peers are learning to be around him. He is making lots of friends and is being accepted for who he is. That is my new dream for him.

Monday, October 15, 2012


"No! I am NOT doing schoolwork! I don't like school! I am NOT going to do it! No! I want to play trucks instead! I am NOT doing it!"

That is what I heard this morning when I told Benjamin that it was time to start his schoolwork. It is a rainy, cloudy, icky day today and nobody (including me) really wanted to do school. But, with his surgery a couple of weeks ago and a day off last week since Andrew was out of school, I really felt that we needed to do work instead of skipping it.

After a struggle, I got him to go to the schoolroom, but he continued with the, "I don't WANT to do school. I am NOT going to do school! Hmph!" He sat down and then told me very sternly, "I don't LIKE school!"

Days like this can be tricky. Sometimes, I can talk him out of it quickly and get him onto doing his work without many issues. Other days, it turns into a full blown battle where I get frustrated and he gets nothing out of it.

"Finish quickly and then you can play the whole rest of the day!"

"No! I don't LIKE school!"

"Yes, you do like school. Remember all of the fun things you do when we do school? You can choose which activity you want to do first. How 'bout vocabulary?"

"No! I'm not doing it! I don't LIKE vocabulary."

"Ben, you have been telling me that vocabulary is your favorite. Don't you want to learn your new words for the week?"


Today was not going to be one of those 'talk him out of it days.' Fine, I'll change my tactics... maybe some bribery? Maybe a sensory activity?

"Do you want to do science outside and go stomp in some puddles?"

"Nuh-huh! I don't LIKE science! No school!"

Unfortunately, I am not a big pushover like he sometimes likes to pretend that I am, so I was not giving up that easily.

"Ok... fine. You don't like school."

Silence from the offspring. He is kind of confused by the lack of argument from me.

"Why don't you tell me what it is you don't like about school. We could write about it in your writing journal."

"Ok!! Why I don't like school..."

So we wrote about why he doesn't like school. First, we brainstormed all of the things he doesn't like and all of the things that he does. We also talked about things that he would do if he didn't have to do school. We wrote the final draft in his story book. I dictated what he said, but purposefully left out one word per sentence for him to fill in using stamps. He had to figure out how to spell those words. He also illustrated it and read it back to me to make sure that I didn't forget anything. Plus, he had to complete our calendar that he refused to do during calendar time so that we could put the date at the top of the paper.

Ben's essay and picture of him playing with his firetruck.

Once we were done with him getting to vent to me why he doesn't like school and see his words show up on paper, he happily completed the rest of his schoolwork in record time. 

"I LOVE vocabulary! It's my favorite!"

So, here is his essay:

Why I Don't Like School

I don't like school because school is too hard for me. I want to buy legos and Geotrax and trucks instead. I don't like to do vocabulary and writing and social studies. I like math and reading. If I were not in school, I would play. Instead of school, I would eat ice cream.

Thursday, October 4, 2012

Fair Time 2012!

I love the fair and always have. The Los Angeles County fair in California is phenomenal and I luckily got to grow up less than 10 minutes away from it. The fairs near us in North Carolina are not nearly as nice or large, but they are still great educational day trips for the kids... plus they are loads of fun.

The last two years, the kids have watched the wood spinners at the fair and have received wooden tops for their patience. The kids love that they can take home a personalized (they picked the colors) souvenir that was made just for them. Plus, the tops are great for teaching them fine motor skills. It takes a lot of coordination to get those things to spin.

We always visit the petting zoo and feed the animals. Ever want to know what a baby alpaca looks like (The owner said it's a recently shorn alpaca)? I didn't know I did until I had no clue what this animal was...

We all feed the animals together and learn about sheep, goats, llamas...

... and whatever these things are. I think they are called Zebus??

We teach kids how to graffiti on walls....

and learn independence while riding rides BY THEMSELVES!!! This is HUGE for my boys who previously had to ride them with one of us.

Overall, it was a fun-filled day with lots of family time.

Wednesday, October 3, 2012

Disney Vacations with Special Kids

We are a Disney family. When I say that we are a Disney family, I REALLY mean that we are a Disney family.

Disneyland was my high school hangout. My high school was about 15 minutes from the park and all of my friends and I were annual passholders. We spent countless hours at Disneyland over the course of those 4 years. In college, still as an annual passholder, it became my sanctuary when dorm life was too crazy. I spent hours studying there and enjoying the people watching and ambiance.

My husband and I actually MET at Disneyland and both worked at Disneyland at the end of college and during our first year of marriage. Our honeymoom was on the Disneycruise and included our first trip to Disneyworld in Florida. We immediately fell in love with both Disneycruise and Disneyworld.

Hubby and I working at Disneyland, 2002ish.

When the boys were younger, I spent many days taking them to Disneyland. I was known to give into my 2 1/2 year olds' request to eat dinner at Disneyland and then drive the 40 minutes to do so. Benjamin even took his very first steps at Disneyland, at 2 1/2, in the building in which his daddy and I both worked. After we received the boys' diagnosis of Cerebral Palsy, the only place that I wanted to go was Disneyland. I needed to be some place that I could think, and that is what the park was for me.

The boys on one of their very first rides.

The boys' very first Disneycruise.

As the boys have gotten older, the dynamic of the trips has changed. They are no longer infants and toddlers, but 8 year old children with special needs. Plus, we now have a daughter. We have since moved from California to North Carolina. The trips can't happen as often because of the distance (it takes 9 hours to drive to Disneyworld) and the cost involved with such a trip.

Luckily, during our honeymoon trip, we decided to buy into Disney Vacation Club. We already knew that we loved Disney vacations and we also knew that we wanted our kids to enjoy them in the future. We didn't have kids yet, having just gotten married, so we decided to go ahead and do it. Since then, we have taken 5 more Disney Cruises and been to Disney World 4 more times. Our house is close enough to drive to Disney World in a day and Vacation Club covers the cost of the rooms. Thus, we go far more often than the average family.

That being said, traveling with any kids can be tough. However, it can be especially tough for kids with special needs. Disney, with its commitment to customer service, makes it as easy as possible.

Tips for Disney World or Disneyland vacations for special kids:

Disneyland 2012. Checking out the new Cars Land.
  1. Upon arriving at the park, head to City Hall (or Guest Services) and request a guest assistance pass. This pass will allow your special needs child and a certain amount of family members to have "back door" access to SOME rides and attractions at the parks. Some ride queues have been modified for wheelchair access through the regular line, so the pass will not work there. However, a good portion of the rides have a separate entrance and it will generally have a shorter line. Remember though that the shorter line is NOT a guarantee. They can only load so many from that line at a time and it will occasionally be longer than the regular line.
  2. Rent a wheelchair or stroller for your special needs kid who can walk, but may not have the stamina to walk the whole park. Otherwise, you may end up carrying that kid. We actually prefer to bring our own stroller to Disney World for help with navigating the trams and buses at the park. There are lots of buses and transfers and you cannot take the park strollers onto the buses with you. We like to bring an umbrella stroller with us so that we also don't have to carry sleeping kids back to the hotel room at the end of the night. Sometimes, the rooms are not that close to the bus stops. Disneyland is a lot closer together, so renting may be a feasible option there if your special needs child can easily walk from the parks to the rooms.
  3. Be aware of the height of your child who uses a wheelchair. Most of the larger rides have height requirements. These are important for the child's safety and the cast members have to be strict in following the rules. Andrew cannot stand up for the height measurements, but has no problem with upper body control and can safely ride the faster rides. It was very helpful to be able to say, "He's 48 inches" on a 40 inch ride. Also, use common sense on a ride. If your child does have issues with upper body or head control, don't put them on a roller coaster.
  4. It is a VERY overstimulating environment, especially if you have not been there before. There are sights, smells, noises, music, people, fireworks, screaming, cheering, costumed characters. Remember that your special needs child will probably have a difficult time dealing with these things at first. We have had a few times where our kids have melted down after a stimulating experience (roller coaster, scary show, etc). It happens.

Kate's first ride at Disneyland. She still loves the carousel.

Tips for a Disney Cruise vacation:

Disneycruise 2012. On our way to Castaway Cay.
  1. When filling out the paperwork for the cruise, make sure that you get the special needs form if your child has specific medical needs during the cruise. They need to know about oxygen tanks and other medical equipment and they also need a waiver from your doctor saying that your child is fit to travel on the ship with minimal access to medical care. We have not needed this with our sons, but they will not allow passage with medical equipment if the form is not filled out.
  2. Every person on the ship has to have a life vest in the case of an emergency. They put them in your rooms based on the ages of the people registered per room. With our boys, they are extremely small for their age. Make sure they have the proper life vest for their WEIGHT, not their age. 
  3. Make sure you know the procedures for people with disabilities in case of emergencies. During the drill, they will allow people with disabilities to use the elevators, but know what staircase you need to go to during an actual emergency. They will have crew members stationed there to help.
  4. If dealing with a wheelchair or walker, try to request a room that is accessible. In general, staterooms are VERY small. The walkways are small, the doorways are small, the bathrooms are small. Andrew is able to get out of his wheelchair and crawl around the room, otherwise a standard stateroom would be impossible for us. His small child's wheelchair BARELY fits through a standard stateroom door and the bathrooms in a standard room require a step up. We only had an accessible room once and it was fantastic for the wheelchair.
  5. Childcare WILL accommodate special needs children, depending on their needs. In general, children need to be 3 and potty trained to attend the labs or clubs. They state that they cannot accommodate children who need one-on-one attention and that for their safety, that they need to be able to function within their ratio limits. However, I have seen children in there that have many more needs than my sons and they have taken great care of them and try to include them when they can. There was a child who needed to be bottle fed and was not able to move around on her own on our last cruise. I often saw the crew members sitting with her and playing with her. Talk to the cruise line directly to see what they are able to accommodate. I know for a fact that they will not change diapers in the older kids' areas and children who have major medical needs cannot be accommodated since the workers are not properly trained for that.
  6. When registering your child for the childcare areas, make sure that you list ANY information about their needs that you need to. For instance, one of my sons has an obsession with hand dryers. I put in his notes about it and they were able to monitor the situation. My other son tends to go off by himself when overstimulated. They were able to get him involved. The crew members want to know about the kids and want them to have fun.
  7. They give you phones that work on Castaway Cay and on the ship when you drop your kids off. That way, they can text you or call you to let you know of a potential issue or if the child needs to be picked up. However, the phone does NOT work in other ports of call. 
  8. Kids have to be fully potty trained to use the swimming pools. No exceptions. The ships do have splash areas for non-potty trained children however.
  9. Childcare on Castaway Cay (Disney's island) is available. They have one sand wheelchair in the childcare area for special needs kids. It is very sandy, so a regular wheelchair will not work. However, if your child is mobile, then they can still have a fantastic time. Andrew crawled the entire time he was in there and had a blast.
  10. Sand wheelchairs, strollers, and wagons are limitedly available on the island. We have had slim pickings the few times we went onto the island later in the day instead of first thing in the morning. However, they are available in two different locations on the island.
  11. Be aware that many of the ports of call are not wheelchair or stroller friendly. We found this out the hard way. The laws are not the same as they are in the United States with regards to people with disabilities. Sidewalks don't have to have ramps for wheelchairs and a lot of the stores are accessible up a few stairs instead of with ramps. However, Castaway Cay is fully accessible, except for the sandy areas which are accessible with the sand wheelchairs.
  12. The crew members are fantastic with making special needs children feel welcome and important. My boys absolutely love going on Disney cruises. They tell me often that those are their favorite vacations.
Andrew in the Kids' Club on the Disney Wonder, 2010.

Ben in the splash area on the Disney Wonder, 2010
The most important thing is to have fun and experience new things! My kids absolutely love any Disney vacation. 

Pure happiness. Andrew having fun in front of the castle.

Monday, October 1, 2012

Wheelchair Costume Ideas

October is here, which means it's time for fall activities and getting ready for Halloween. I wanted to share some awesome costumes that my talented and handy husband made for our son to incorporate his wheelchair and fire engine that he made for my other son, Benjamin since he really wanted one for Halloween to ride in. They were the hit of our neighborhood!

2010: Bulldozer complete with "tracks." He could navigate it himself.

Had a "working" scoop.

2011: Andrew as Wall-E. The eyes glowed and he could move the arms.
The trash chute also opened for him to get his candy.

Ben's fire engine. Kate and Ben were pushed around in it all night long.