Feeding Issues? Understatement!

Ben: "Mom? Can I have some chocolate chips and fruit snacks and Doritos please?

Kate: "Mom!? Can I have some peaches and some red and green peppers and some carrots for snack? Make sure you give me lots of red ones! And broccoli for dinner!" (This is not a dramatization...this was a real conversation I had with my children an hour ago).

I stare at both of my children dumbfounded and wonder where I went wrong with my son and how I could have possibly done better with my daughter. Then, I wonder why it is that I am bribing my son to eat 9 grapes (since he is 9 years old) with the aforementioned junk. At least THAT answer is fairly easy.

Benjamin has feeding issues. He isn't picky in the traditional, "my kid doesn't like veggies" sense. It goes far beyond that. Some feel it is from the lack of strength in his jaw from the CP. Some feel it is one of his autistic traits, some feel it is just behavioral. One thing that I am sure of is that it is one of the worst parenting issues I have ever had to face. 

When he was a baby, he left the hospital a month after Andrew because he had a difficult time with taking a bottle. He got the hang of it eventually, but feeding was still an hour long ordeal. I made all of their baby  food  once they transferred to solids and noticed that Ben did not like increasing textures. He tolerated some eventually and around age 1 was moving to table foods. 

Then, he got a cold. He was coughing so badly that anytime he ate anything not completely puréed, he would vomit. Being fearful of my underweight, high risk preemie losing weight, I fed him baby food and yogurt to get him through his illness. After that, he refused to eat anything with texture to it.

We began very expensive feeding therapy, which only made it worse. It made him anxious at meal times and suspicious of hiding foods in the textures he would eat. At age 3, he was eating 6-8 jars of 3rd stage baby food in a sitting and supplemented his diet with yogurt and Pediasure. There was talk of feeding tubes if he did not continue to gain weight, but I was not about to give up on him learning to eat. 

On Easter when he was 3.5, I walked in his room to see him scarfing down M&Ms from his Easter basket. I immediately went downstairs and threw away all baby food in my pantry. If he could eat candy, he could eat other things.

And so began the excruciatingly slow process of getting Benjamin to eat. I scoured the Internet for ideas and suggestions. I was very fearful of feeding therapy from our past encounters, but I did ask some therapists for some advice. 

We started with "take a bite, get a bite." If he took a bite of a new food, he would get an M&M. It was very slow going. He would often "pocket" the food in his mouth and refuse to swallow. He would cry and I would cry. Mealtime was dreaded. 

He soon learned that he liked Cheetos, graham crackers and chocolate chips. Soon after came the first real meal he ever ate...ravioli with meat sauce. That opened up a whole new world for us. We had called the ravioli "spaghetti" at first, so anything with red sauce was soon called spaghetti. He liked spaghettios, spaghetti, ravioli, and lasagna and freely ate those without any issues and eventually without bribery. We still supplemented with Pediasure daily.

He is now 9 years old and I would love to say that he eats a well balanced, completely healthy and diverse diet. While he has now expanded tremendously from his 3 year old diet of baby  food  and yogurt, mealtimes are often frustrating. His favorites are still red sauce based foods, but have expanded to include "chili a la spaghetti," "enchiladas a la spaghetti," and cheese pizza. He loves plain canned pumpkin (weird, I know) and loves when I add it to pancakes. Sandwiches are new within the last year or so and we are now able to get him to eat bites of most of our family meals without too much fighting. He loves chicken nuggets. He will voluntarily eat bananas and raisins and will eat broccoli, grapes and green beans fairly easily. His old rewards of chocolate chips, M&Ms, chips and fruit snacks are still items he wants on a regular basis. The most exciting event this year was the transition to milk instead of Pediasure. We have been working on that for about 2 years. 

It has been a long, frustrating experience. Whereas Kate just picked up her food and ate it as a toddler, we had to fight for every bite with Ben. People just plain don't understand why we were so excited the first time Ben ate a donut or a hotdog or a bite of ice-cream... Or why I cried hysterically on the day that Kate ate her first Cheerio, which happened to be the same day Ben ate his first Cheerio.

If you are dealing with feeding issues with your special needs child, know that you are not alone and that there are those of us who understand the daily struggle. It isn't easy and is extremely emotional. Other parents don't get it because they can't. Having Kate has made me realize that there is a lot that parents of typical kids take for granted and that's just the way it is. Like so many things, you have to live it to understand it. 

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.

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.

Skills:

• 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.

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!"

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.

BIIIIIIIIIIG hugs!

"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.

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. 

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.

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.

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.

Self-Help Skills=Mommy's Frustrations

Me: "Kate! Go upstairs and get dressed please!"
Kate: "Ok Mommy!"

And, off she goes. She runs up the stairs, picks out a decently well put together outfit (usually), changes her underwear, puts on her clothes and comes running downstairs to show me how beautiful she looks. Sometimes, she requires a slight tweak here or there (no you can NOT wear the bright pink shirt with that; no you may NOT wear your fairy wings and "heels" to the park; no you may not wear a sundress and sandals when it is snowing outside), but overall, she did it herself...and she is proud of that fact.

Me: "Go brush your teeth please."
Kate: "Ok Mommy."

Relatively clean teeth in about 2 minutes flat. Toothbrush put away, toothpaste not too messy, sink relatively clean.

Bliss! That is life with my 4-year old typical girl.

Kate (age 4) learning to brush her hair...on her own.

SCENE CHANGE!!!
Me: "Ben, go get dressed please"
Ben: (Silence)

Now I have to figure out 1) did he hear me? 2) is he ignoring me? 3) did he process what I asked him?

Me: "Ben, come here please. (he walks over) What did I just ask you to do?
Ben: "Ummmm... go eat please?"
Me: "Go get dressed please."

Processing issue...possible behavior/ignoring issue. Off he goes upstairs. 10 minutes pass and I don't see Ben yet.

Me: "Ben, did you get dressed?"
Ben: (while playing with a toy in the hallway on the way to his room) "Oops! I forgot."

Attention issue.... possible behavior/ignoring issue. He's not arguing or giving attitude, so I let it go. Off he runs into his room and starts going through his drawers. I leave him to it, trying to teach him to follow through with my instructions without me "babysitting" him. 10 minutes pass and he comes downstairs, mostly naked, holding clothes in his hands.

Ben: "I got my clothes! I need help putting them on!"

I look at the clothes. He has baseball pants and a sweater.... it's 100 degrees with 80% humidity outside.

Me: "Silly goose. Do you wear baseball pants everyday?"
Ben: "Nooooooooooooo."
Me: "Do you wear a sweater when it's summer?"
Ben: "Nooooooooooooo."
Me: "What kind of clothes should you get?"
Ben: "Shorts and a shirt."
Me: (dreading sending him upstairs yet again to get sidetracked) "Ok. Go on back upstairs and get the right clothes. Remember. It's hot outside."

Off he goes. He returns a few minutes later, still mostly naked, with the correct clothes in hand. At this point, almost half an hour has passed since I made the first request. My patience is running thin, but I keep telling myself that a year ago he couldn't do ANY of this on his own and that it's getting better...really it is. And, this was a big part of the decision to homeschool. He has to learn basic self-help skills and has to learn to do these things ON HIS OWN.

I quickly set out the clothes on the floor to make it easier for him to get them on. Knowing that he will quickly get distracted, I sit next to him and tell him to put on his underwear... then his shorts... then his shirt. He does it pretty much on his own. Success!

Me: "Good job getting yourself dressed!" (while I am thinking, 'Does this really have to take 35 minutes?')

SCENE CHANGE!!!
Me: "Andrew, go brush your teeth. Remember not to get water all over the bathroom and not to get toothpaste everywhere."
Andrew: "Ok!"

Off he goes. I am praying that he will just brush his teeth without destroying the bathroom, but know that the chances are not in my favor. But, I have to let him do it on his own and suffer the consequences on his own. 5 minutes later, I go in to check on him. Like normal, he is sitting on top of the sink (it's easier than standing on the step stool for him since he can climb, but can't stand). I can tell already that it's a bad toothbrushing day. Both faucets are blasting and every electric toothbrush is turned on. There is toothpaste on the sink, oozing out of its container and Andrew is filling up a cup with water to watch it overflow.

Me: (trying not to start screaming my head off) "Andrew. Turn off the water and the toothbrushes NOW."
Andrew: "Ok."
Me: "Have you even started brushing your teeth yet?"
Andrew: "Oh, oops!"
Me: (head starting to spin around, eyes wide open, nostrils flaring. I speak slowly through gritted teeth, trying to calm down) "Brush your teeth and clean up the bathroom. If you are not done with that in 5 minutes, you will be grounded for the rest of your life and have to sleep hanging upside down from your toes from the playroom tomorrow. Do you understand?"
Andrew: "Ok. Mommy."

Magically, this does the trick. He's done and the bathroom is cleaned up (sorta). Now, I KNOW that in the evening his ADHD medication is completely out of his system. I KNOW that when he is not on his medication, he has basically no impulse control because that part of his brain is not only damaged, but mostly gone. He doesn't generally leave a path of destruction behind him during the day when the medication is in full force. But, boy does it make me lose my temper to see a kid who I know is capable of doing the right thing decide to completely ignore everything and create a mess that I will probably have to clean up.

Why can't they just do it? Why can't they just get themselves dressed without having to be reminded and told 100 times? Why can't they just brush their teeth on their own?

And, then, I think about how a year ago I had to do it for them completely. A year ago, Andrew didn't have the dexterity to brush his teeth or the attention to even make it into the bathroom and on the sink without being reminded and brought in there by an adult. A year ago, Benjamin couldn't even take his shirt off on his own and could barely put it on by himself. Putting underwear on was not even something we were working on yet.

So, yeah, it's frustrating. Yes, there are times when I want to scream and think of the unfairness of it all. I know that I need to be grateful that they at least have some of these abilities, because that was not always apparent. It's just hard to remember that in the moment... when I am tired and cranky and have worked all day to teach them something only to have them not do it. I sometimes just want to give up and do it for them. But then, Andrew comes into my room one night to proudly tell me that not only did he brush his teeth on his own without me telling him, but that he put all of the stuff away too. Or Benjamin goes upstairs for bath time and gets himself completely undressed without me even telling him once. That's when I realize that it's worth it. I am helping my boys to succeed in areas that they might otherwise not succeed.... and it will get better. It just takes an extra heaping spoonful of patience in the meantime. And, it's ok that I don't always have it.

They will ALWAYS be worth it.

He did it!!

Ok... so a while back, I posted about how as a parent of special needs kids, I am fortunate enough to get to celebrate the little things that most people take for granted. This is one of those things...

Today, Benjamin wanted to play bubbles outside with his sister. Usually, that means that we get out our super duper bubble blower and they pop them, or he watches his sister blow bubbles. When he tries, he quickly gets frustrated and gives up. His motor skills make it very difficult to blow hard enough and directly enough to actually get the bubbles to form.

Today, however, he was determined. He wanted to blow bubbles. So, we worked on the dipping and wiping first and then I showed him again how to blow. He immediately did what he did before and blew incorrectly. I told him to watch my mouth closely and try it again. He did, and guess what?!???!? He blew bubbles!!!! You have no idea how excited both of us were. He did it! After years of trying and not succeeding, he finally was able to do it!! He blew bubbles over and over again with various levels of success. But, the thing is that he is finally able to do it! Hooray for Benjamin!!!

Beyond the Diagnosis

We knew from the time that the boys were a week old that they had brain bleeds and hydrocephalus. We were told that they were at high risk for Cerebral Palsy, but that many kids who have brain bleeds like theirs (the second worst type) go on to be ok. Andrew was released from the hospital and the neuro-surgeon told me that he so far was developing normally and looked pretty good. 

The first year and a half was a whirlwind. I worked sooo hard on everything developmental. We listened to classical music, we worked on our muscles everyday for hours, I created speech games to incorporate babbling, I read to them constantly (Charlotte's Web was their favorite), and we did sign language. We were visited twice a week by their therapists and teachers. When they turned a year and were cleared of their "high risk, no-immune system status," we joined a sign language class for babies to continue to work on what we had started. We also did baby gymnastics. I was determined to overcome as much as I possibly could.

The therapists we had at the time were very encouraging. The boys were developing at their adjusted age. They were ahead in some areas and on par for everything else. They didn't qualify for PT at that time because they were actually where they should have been. 

Fast forward 6 months. Andrew started showing delays in gross motor development. He could not stand up easily and had a difficult time pulling to stand. He started army crawling and could get around that way, but didn't go into the regular crawl that he was supposed to. After asking and asking, he was finally given physical therapy. The PT came in and started working with him. He quickly began to crawl and was learning to stand up. One day, my husband and I noticed something that scared us. Andrew's leg began to shake uncontrollably after being worked by the PT. I immediately thought that it was a seizure, but the PT assured us that she probably just worked him hard and his muscles were reacting. We took him to the pediatrician who told us the same, but was really kind of cryptic about what it meant.

As we went on in therapy, the PT tried on a set of AFOS that belonged to another child. Andrew had much more success standing up. We knew that we needed to get him some braces, so off to the pediatric orthopedic surgeon we went. I walked in with the mentality that I have this premature baby who is slightly delayed in his gross motor skills but on par everywhere else. The delay was "developmental" I thought.... not based on the brain damage that he had incurred and definitely not permanent. 


The orthopedic surgeon came in and listened to his medical history. He then checked Andrew's legs and feet.. pushed up on his ankles and immediately the shaking that we had noticed earlier began. He looked at me and said, "I'm sorry, but he has Cerebral Palsy. He has spastic diplegia. I will give him braces, but know that just because I give him these doesn't mean that he will immediately start walking. It will be a long road." I was devastated. I knew what cerebral palsy meant. I knew that meant that he would face a lifetime of challenges. Suddenly, my whole perception of my little boy changed. 

I went off to Disneyland because that is where I go when I need to think or be by myself. It's kind of my happy place. So, off I went with Andrew, thinking of all of the things that he will never do. I was so incredibly focused on the diagnosis. He will never talk... he will never walk... I will never be able to take him to Disneyland and have him tell me what he wants to ride... he will never read... he will be confined to a wheelchair and not do anything. I was wallowing... and completely ignoring the little boy that sat in the stroller in front of me. About half an hour into this trip, I realized that Andrew was starting to flip out in the stroller. I look down and he is signing "horse" over and over again and pointing to the carousel. He was repeatedly saying, "Mama" and then signing horse. I hadn't been paying attention, so he was throwing himself around in the stroller. It was at that moment that I realized that I am stupid to put so much emphasis on a diagnosis. Here is my one-year old who 10 seconds ago I thought would never be able to tell me what ride he wanted to go on at Disneyland and he is making it VERY clear exactly what he wants. He could already crawl and has already shown that he is one of the most stubborn children that I have ever met. 

It was that evening when I vowed that my boys would experience as many things as possible and that I would do whatever I could to allow them (and push them) to participate in things that normal kids do. I had to get over my fears of them getting hurt and allow them to use what they could do to experience life. People are amazed when they see Andrew climb an inflatable slide that is 15 feet up and are even more amazed when I just set him down and tell him to have at it. They are amazed when Andrew reads as well as he does. I have even had strangers comment to me that they are amazed that in a public restroom, I send Andrew to the sinks by himself and tell him to wash and dry his hands without me hovering and doing it for him. Independence is what I am teaching him... and also that just because he has a wheelchair and just because things are harder for him, that doesn't mean that he can't do it. 

Now, Andrew and Benjamin are turning 8. There are some definite deficits in their development. It has been tremendously difficult. There are days where I am utterly frustrated that they can't do things that are easy for other kids. But, then, I have to remind myself of all of the things they shouldn't have been able to do and are now doing. It's a fight and an uphill battle. I constantly say that I want a sense of normalcy.... then I realize that this is MY normal and that I need to embrace it. I need to let go of my expectations and see my child for their expectations. I might want them to write all of their letters, but they are just trying to figure out how to place their fingers to hold onto a pencil. Celebrate the small things because everything is a victory.


You have to look beyond the diagnosis and see the child. It's a difficult thing to do and is something that I have to remind myself of often. 

Andrew getting ready to go down the slide at the park. Age: 2

Andrew crawling on a rope bridge at California Adventure.
He doesn't let the fact that he can't walk slow him down. Age: 7

Andrew climbing up the big inflatable slide at Monkey Joes. Age: 5

LEGOS Education?? YES!

On a recent trip to our local LEGO store, there was a very knowledgeable sales person demonstrating a few sets from LEGO Education line. My first thought was, "LEGOs has an educational line?" The second thought was, "AWESOME! I have a little boy who loves LEGOs but hates a lot of traditional approaches to math."

One of the sets that was being demonstrated was the LEGO Duplo Numbers and Mosaics set. It has tiles that attach to 4 included Duplo plates and can be used for a variety of math concepts from number recognition all the way to simple division. There are also shape tiles (similar to tangrams) and design cards to work on geometry skills and visual motor skills. I just had to get this set. Even better was that it was on clearance because of overstock issues, so I got it for 50% off!

A few weeks passed and I completely forgot that I had bought the thing. Then, on one particularly infuriating morning where Ben could not stand math and was fighting me on every activity, I remembered them and decided to pull them out. Why didn't I do it sooner?!? He absolutely loves this set, and so does Kate! The only problem is that Ben also thinks that he can dictate exactly what we do during the lesson, which is an entirely different issue.

Ben insisting that he needed to put on the odd numbers.
He used the equal sign as 11 because he couldn't find more ones... BRILLIANT!
He mastered this skill 2 years ago, but hey, it's extra practice.

Since I have had them out, Ben is REALLY starting to grasp subtraction. He is now understanding that subtraction is the opposite of addition. Since it is motivating (he loves LEGOs) and pressure free (he has all of the fine motor skills necessary to be successful), he wants to do it.

Using the colored shapes to help with subtraction.
This is what we did the very first day.
He had an entirely different set of problems today without the aid of shapes.
It just happened to be the same subtraction problem in the pictures below.

Working the problem without pictures!

This is his "I did it" face. He figured it out!

Both Kate and Ben are loving making pictures using the shape tiles. They are getting their creativity flowing and thinking about the shapes needed to make a picture. This practice is especially good for Ben since he has always struggled with drawing and the visual skills needed to make a group of shapes look like something. 

Ben says this is "happy Ben" wearing a party hat.

Kate's lollipop.

Ben's train. He was excited that he made it himself.

Kate trying to figure out how to match the activity card.
This was very difficult for her to do without help, but she did do it.

The only negative to this set? My family room has looked like this almost non-stop for two days.

We get them picked up and out they get dumped again. I strive for organization and have thought about separating the numbers from the shapes...but I have a feeling that particular attempt at organization will be quickly undone and cause more frustration than necessary.

The LEGO education line has some other really neat sets that I can definitely see in our future. One of those is a robotics set. Since we are still working on the fine motor skills needed for the small LEGOs, I think we will hold off for now. However, my hubby has mentioned that he might just like them... for the boys of course...

Feed That Monkey!

I have learned over the last 7.5 years that for a child with special needs to master a skill, you have to break down that skill to its basic parts. It's been challenging learning how to do that for skills that I have long since mastered, can't remember learning, and have become second nature to me. However, that isn't how it is for my boys, which means that I must think about what my body is doing so that I can show them how to do something.

Take this new fine motor game that I found at Union County Smart Start. It's called "Feed the Monkey," and that is exactly what you do. The trick is that you need to use the over-sized tweezers to pick up the bananas and put them into the monkey's mouth. 

To give you an idea of the contrast between typical and special needs learning: Kate walked over, picked up the tweezers and immediately put all of the bananas in the monkey's mouth. No problem, not a challenge, really fun. I didn't have to show her how to do it. I didn't have to show her how to open and close the tweezers. Not so much for the boys.  Benjamin tried to pick the tweezers up and use them and he quickly threw the tweezers in frustration. Here is how I broke the skill down to increase independence and success:

1. First, I had Ben just pick up the tweezers with the correct hand position. We worked on that a few times just on its own. 

2. Then, I had him just practice opening and closing the tweezers with his fingers. I had to start with hand-over-hand help to get him to feel how to move his fingers. I did this with constant verbal cues... open, close, open, close. I also had him try those motions with his fingers without holding the tweezers so that he could see and feel what he needed to do.

3. Next, I had him try and pick up the banana while holding open the tweezers. The timing of the fine motor skill with the visual tracking of the object was really tough for him. He tried multiple times and failed. I decided to have him take the banana from my fingers so that it didn't move while he was figuring out the open and closing of the tweezers.

4. Then, he put the banana in the monkey's mouth and "fed" him. Success! It was really tough to let go of the banana without letting go of the tweezers, but after a few attempts, he did it!

5. Repeat, repeat, repeat. Someone once told me (and I don't know exactly how accurate this is, but it is what I tell myself and it seems to be mostly true) that if a typical child learns something after one attempt, it will take 100 attempts for a child with CP to learn it. Luckily, I have determined little boys. Benjamin really wanted to feed that monkey, and feed that monkey he did. 

It was a very slow start with feeding the monkey, but eventually Ben was able to feed the monkey using the tweezers without any help from me at all. We are going to continue to work on this skill because it will be helpful for learning the motions for cutting with scissors as well. I decided to not focus on scissor skills this school year, but would like to start again during the summer. So, it is time to build up those finger muscles and learn the movements necessary.

When Did THAT Happen?

I have spent many hours working with Ben on his fine motor skills this year. It has been one of the primary focuses of our homeschooling day. I have shared in blog entries the struggles and successes of trying to get Ben to not only learn how to write, but to enjoy (at least not flip out over) fine motor activities. After months of working hard, I have to say that I have MORE than succeeded with my original intention.

Yesterday, Benjamin woke up early and quickly ate his breakfast. He was incredibly excited and did all that was asked of him in the morning so that he could get to his first homeschooling activity of the day. What was it? A fine motor activity! He was going to paint the airplane that his daddy and he built together the night before (a $1 kit that he picked out at Michaels). At what point did any fine motor activity become something he looked forward to? At what point did artwork become a reward? I am astonished at how excited this kid was to start painting.

Look at that focus! Look at that grip on the paintbrush! Look at those two hands doing something different simultaneously! Look at the absence of an insane mom getting frustrated in the background!

This was not the first time that he has shown a preference for fine motor activities. Slowly, our homeschooling day has transformed. He now wants to start his morning with his writing warmups sheet. When I give him a choice of the order in which he wants to do his seat work, he always chooses his writing first.  On days where he is fighting his work, he asks me if he can do his writing and be all done. He no longer wants me to write for him when doing his math work. He wants to write on the inside of cards that he makes for people and is very proud of his work when he is done. He does his finger muscle exercises throughout the day for fun. 

The visible results of all of this hard work? If that first picture doesn't prove it to you, here is another one. 

This is Benjamin's writing warmup sheet from a few days ago. Almost every number and letter is legible and most are formed correctly. He wrote this COMPLETELY on his own.