What to tell your kid about my kid...

With Andrew starting at a new school in a month, I am starting to become nervous about how he will be treated by an entirely new set of peers. Unfortunately, most kids (and their parents) are not fully equipped to handle such close interactions with a child who has obvious special needs (like a wheelchair). Even though Andrew is fairly typical in many ways, the wheelchair automatically sets him up to be different from everyone else in the class. Sometimes, I wish I could tell people what they need to tell their kids in order to prepare them better. So, I decided to compile a list of the things that irritate me and the things that I have found really help Andrew to be accepted for who he is. Keep in mind that Andrew is only 8 and going into 2nd grade, but this is what has worked so far. It will probably change as he gets older. However, the younger the child is when they are first exposed to kids with special needs, the more accepting they will be of them in the long run.

1. Don't act like he doesn't exist and don't tell your kids to ignore him. 
• Andrew has been far more hurt by the kids who ignore him than the kids who ask him questions. He exists and so does his wheelchair. He doesn't see anything wrong with it, so don't tell your kids to not look at or talk to the kid in the wheelchair. Instead, encourage your child to go up to the kid in the wheelchair... just like you would encourage them to talk to any new child. Just recently, Andrew said hi to a little boy about his age. The little boy looked straight ahead and pretended not to hear. So, Andrew wheeled closer and said hi again. Then again. Then, he looked at me and said, "Mom, does he not speak English? He won't answer me." I just told him that the little boy might be shy and that it's ok. Eventually, Andrew will be able to make the connection between the wheelchair and new kids. But for now, he doesn't get it.
2. Don't be embarrassed by your kids' questions, and don't stop them from asking them.
• Most kids are truly curious about the wheelchair and why he needs to use it. They are also curious about his braces on his legs and his walker. They don't think that there is anything wrong with it, but they WILL if they pick up on your apprehension. If they ask Andrew why he is in a wheelchair, Andrew will answer. Most kids accept things at face value at this age and don't need an entire medical history. Andrew will simply say that was the way that God made him or that he can't walk and uses the wheelchair to get around. I can't speak for every person in a wheelchair, but it doesn't offend him or me to have people ask. 
3. Don't tell me or him that you are sad for him or that it is too bad or (yes, this happened) start crying when you see him. It's CONFUSING for a happy kid who doesn't think anything is wrong. It is part  of his life... he is ok with it.
4. Act like the wheelchair is an extension of his body. 
• Most kids Andrew's age love to help him. However, Andrew gets really irritated when someone pushes his wheelchair without asking. For him, that's how he gets from place to place. It would be as if someone was pulling you around and pushing you somewhere that you don't really want to go. It gets annoying. It's better for kids to ask the child in the wheelchair if they would like to be pushed... which most of the time Andrew says yes to. He just likes to have the respect of being asked.
5. Don't over or underestimate him.
• We have had a lot of issues with this. Some people underestimate Andrew because of the wheelchair. They give him a lot more leeway than they would a typical child. While he does need some accommodations, he should be held accountable like any other child. He can do a lot of things by himself and we are always pushing him to do more. 
• Also, don't overestimate him, thinking that he should be perfectly well behaved because of the wheelchair. There are times when he gets punished because he calls a friend a name or talks back or does something that is just par for the course with any typical kid. However, people are sometimes shocked that Andrew is capable of calling someone a name or arguing with a friend. He's a kid, not a saint...
6. Let your kid play with mine.
• One of the most heartbreaking things for me to see as a parent of a special needs child is when parents of typical kids isolate Andrew. I remember a child coming up to Andrew to talk to him and his dad said, "No! Don't talk to him. Don't play with him. Come here." The child asked why and the dad said, "He's in a wheelchair. Don't look at him."Andrew was confused. He wanted to know why he couldn't talk to that boy. He wanted to know why that dad said that. Andrew may play differently than your child, but he can still play with your child without a problem.
7. Tell your kids that children with special needs are just like them. 
• This is so incredibly important. The children who have been taught that special needs kids are just like them not only become friends with special needs kids, but advocate for them as well. I love hearing about a friend of Andrew's sticking up for him if someone teases him or answers questions for him when he meets someone new. The more that a typical child is around the special needs child, the more they realize how much they have in common. 
8. Converse with the special needs child while your kids are around.
• Kids follow your lead. If you talk to them, they will talk to them.
9. Notice the cool things about the child or his equipment and mention them to your child.
• "Those are cool lights on his wheelchair wheels!" "Wow! A RED wheelchair! It must go super fast. Your favorite color is red, I wonder if that's his too." "That silly face shirt is awesome." "Andrew's new red braces with soccer balls are really cool. You like to play soccer... I wonder if he does too."
• We have actually had kids tell us that they want a wheelchair for Christmas like Andrew's or would like to trade their scooter for his wheelchair for a few minutes. We try to make his stuff a little "cooler" and more personalized and that has really helped kids to be accepting.
10. If your child is having a difficult time seeing the similarities, encourage them to find out what the special needs kid is involved in.
• Most of the special needs kids that I know are involved in activities just like typical kids. Many of them do scouts, Bible study, adaptive sports, swim, summer camps, gymnastics, etc. Andrew is in AWANA and plays baseball and in the past has taken swim lessons, done gymnastics, played wheelchair basketball, and gone to daycamps. I love when a child hears that Andrew can now hit without a tee and is amazed. Usually, they can find something in common.
11. If your child asks you a question about him, keep it at face value for now. Eventually, they may be interested in more information, but saying, "There is nothing wrong with him and he isn't hurt. His legs work differently than yours do and he uses the wheelchair to get around. He was made like that. Sometimes, that's just the way it is."
12. Most importantly, emphasize that just because he is in a wheelchair doesn't mean that he can't be their friend. 

Andrew crawling across hay bales at the pumpkin patch school field trip.
His friends are following him and crawling just like him.

Curriculum? Or No Curriculum?? That is the question...

So it seems that most of my free time (which I have a lot more of since we are on summer break) has been spent preparing for the next school year. I have been researching curriculum choices like crazy. I have a pretty good understanding of what needs to be worked on with Ben next year and a pretty good idea of what worked and didn't work this year. I also have a pretty good idea of how I want to teach, but that doesn't mean that I have found the curriculum to answer all of what is required.  So here it goes... if you have any suggestions for me to look at, please let me know.

For reading, I started with Abeka, 1st grade at the beginning of this school year. Benjamin quickly started HATING reading time. He had always loved reading before, so I knew that I needed to change. He felt that the books were too easy and I found the books to be boring. There was no substance to them because they were phonics readers. I had chosen this program because I wanted to make sure that Ben had a good grasp on phonics and that we hadn't missed anything. I quickly learned that his phonics skills were great and that he needed something else. After 2 months, I stopped Abeka altogether. 

The rest of the year consisted of thematic units based off of science topics and random first readers that I felt to be level-appropriate. We soon figured out that Benjamin loved non-fiction and loved science, so nonfiction readers were perfect for him. There was no pre-made curriculum to go with the randomness of our units, so a lot of it was either created by me or found on the internet. There was a lack of cross-curricular consistency with his other language arts and the books we were reading, and I hated that. I also hated that he was reading mostly non-fiction. I really feel that there is a lot of value in reading actual children's literature and have vowed to include more into our school time this year. However, I LOVE thematic units and find them more fun to prepare and also more engaging for the child than random, unconnected lessons. The biggest issue I had: I was doing all of the work and preparation... and it took a lot of time that I didn't really have. After talking to my husband, we both decided that I needed to try and find something that required less creation on my part.

The good news is that my lack of a true reading curriculum didn't seem to hurt Benjamin at all. His reading skills have improved dramatically. I had him tested by a reading specialist and his scores came out as on grade-level for decoding (2.0) and close to grade-level for comprehension (1.6). Since he reads slowly, the test took 3x longer than the anticipated 30 minutes, causing him to pretty much not care by the end. The tester felt that he can probably read and comprehend even higher than that, but because of his ADHD, he had enough and lost focus. Either way, I was ecstatic to hear his reading scores. It gave me the confidence that I needed to start planning next year's reading choices and curriculum picks.

I have searched and searched and searched the internet in hopes of finding a curriculum that has actual real children's literature, planned into thematic units, already done for me, and here's the kicker... cost friendly. Sure, I can order Sonlight. It has a fantastic list of readers and is all done for me. But, it is expensive, and I have a feeling that the seatwork won't be a good fit for Benjamin's learning style. 

I can buy individual units based off of literature picks, but at $10-$20 a unit, I can see that getting expensive really quickly. But, these seem to be the best bet for me if I am not going to be creating everything myself. I just don't see me only doing 1 or 2 thematic units all year.  Sigh... why can't there just be exactly what I want to use out there for the cheap price that I want to pay?

Does anyone else have the problem of not being able to find the exact fit when it comes to curriculum? 

Fundanoodle! A new writing program for us!

When the boys were in preschool, Handwriting Without Tears was the writing program that every Occupational Therapist was talking about. It has hands-on activities that help the kids learn to build letters, catchy little songs, and lots of repetition. We bought some portions of the kit, and when I decided to homeschool, we used this as our main handwriting program.

Handwriting Without Tears, however, does have some flaws. The first, and most important, is that it requires you to use their special lined paper. It does not transition well to primary paper and makes transitioning to regular lined paper confusing.  I really noticed this with Andrew. We have been using Handwriting Without Tears since he was 4. School doesn't use Handwriting Without Tears paper, but he had learned on that.  Thus, he was never writing on the correct lines at school. The letters were always written through the lines and he didn't quite understand why this was wrong. 

Another issue with Handwriting Without Tears is that the focus for the hands-on activities is really on the capital letters. Now that Andrew has moved beyond learning those, however, he is having difficulty learning to write the lowercase ones. The workbooks do have lowercase letters in them, but the focus thus far has really been on uppercase formation.

One day, while researching handwriting programs on the internet, I stumbled upon Fundanoodle. It looked AWESOME! At that time, the kits and books seemed to only be available on Amazon. I sometimes hate buying things online without being able to hold them in my hands and look through them. Since it was a new program, there weren't any available at the used homeschooling store to see, so I decided to just go ahead with the program I was using and then look at it again for Andrew for summer writing practice and potentially for Benjamin when he finishes the Handwriting Without Tears book on which he is currently working. 

A few months ago, I was walking down the aisles of my local Target store when the boys saw these workbooks up on the shelf. They immediately said, "Mom! Wow! Look at those handwriting books! Can we get those?" (BTW... the Handwriting Without Tears books are pretty bland in comparison to the brightly colored, kid-themed ones of Fundanoodle). I immediately recognized them as the ones I had researched. Target also had the hands-on kits. I told the boys that we would get them to try over the summer. Here is what we think of it so far:

Pros:

1. You can buy them at Target. I sometimes HATE having to wait for workbooks or activities to come in the mail and hate ordering things without seeing them first. I have been disappointed more than once after receiving an item in the mail.
2. They are colorful and engaging.
3. Every page has instructions on how to form the letter at the top. This is extremely helpful for my boys who sometimes need reminders on how to make them... especially the lowercase letters.
4. There are hands-on activity kits for both upper and lowercase letters.
5. It transitions MUCH easier to primary paper. It starts with the kids making the letters in the boxes like Handwriting Without Tears, but then gradually adds the lines and takes away the boxes so that at the end of that page, the kids are writing the letter on primary lined paper. I loved Andrew's AHA moment when he exclaimed, "Oh, THAT'S how you are supposed to do it!" Handwriting Without Tears was causing a lot of confusion on letter placement for him.
6. It comes with practice paper in the back of the workbook. I have already laminated them for Andrew so that he can do daily practice with the letters. I have found that doing daily practice with all letters and then working on just one individual letter is extremely helpful. With the Handwriting Without Tears program, I had to buy the practice paper separately. It comes with the Fundanoodle program.
7. The sticks used in the hands-on part of the program are magnetic. I have said over the last few years that I really wish the Handwriting Without Tears ones were magnetic and have thought about putting magnets on those ones for that purpose. 

Cons:

1. There is only one level at this time. Handwriting Without Tears has multiple levels to take the kids from prewriting all the way through cursive. I wish this program had the same, even though the level that they have is perfect for the skill level of my kids at this time.
2. You have to buy separate workbooks for upper and lower case letters. They are both included in Handwriting Without Tears program, starting at the Kindergarten book. The cost of the Fundanoodle workbooks is less though, so it basically evens out as far as cost goes.

Here are pictures of some of the work that Andrew has done in the workbooks so far. 

The lower-case letter "i" in the workbook.
See how it transitions from boxes all the way to primary lines.

I laminated this practice sheet found in the back of the workbook.
Andrew uses his dry-erase markers on it to practice daily.
One side has lowercase letters, one side has uppercase letters.

We will definitely be making the switch from Handwriting Without Tears to Fundanoodle. The good thing is that the transition should be fairly easy. It is similar to Handwriting Without Tears in many ways, but has some improvements that make it much more appealing. My boys seem to really enjoy working in these books, which is not always the case with Handwriting Without Tears. I'm lovin' the new program!

Organizing the Schoolroom

Since summer is off and running and we are taking it easy with schoolwork, I have decided to gut and organize our schoolroom in preparation for next year. In my post at the beginning of the last school year, I showed a picture of how wonderful the school room looked. Add in two kids full time, another 4 in and out for homework and preschool work, plus the many arts and crafts that have happened throughout the year, and the school room was totaled. Toward the end of the school year, it was virtually unusable and we moved our school work to the kitchen table and various other places throughout the house. Then, we had a couple of parties here (for birthdays and the 4th of July), so that room became the "I don't know where to put it, so just put it in here" room. Needless to say, the room is a disaster. Even worse is that I knew it was disorganized and needed a whole new system so that once I had it back to where it was it would stay that way (or at least have a better shot at it).

In that room are some really awesome, inexpensive, bookcases and shelving units from Target. They are the Closetmaid brand and have held up well through the entire year of torture. I know that a lot of people buy and use the Ikea ones, and I do think they are really neat, but the ones that I purchased are cheaper and serve their purpose well. They are modular, meaning that all of the pieces go together and I can add more as I need them. The school room is very small and the walls are fairly narrow. However, I have really high ceilings on my first floor. I love that I can stack these (they come with the anchors to allow for this) to allow for more storage room.

So, I pulled out all of our readers to see what I was dealing with. They were barely organized last year. I sort of put them on shelves based on the reading level of each boy and put all of the read-alouds up higher and all of the very beginning phonics readers for Kate in the preschool stuff. Well, very quickly, the books were ripped from their shelves and strewn about. My boys love to read, so I don't want to get angry with them when they are reading, but there needs to be some sort of system that they can follow to keep things organized. I started with this...

By the way, that is just a small sampling off all of the books that we have. I have at least double that in the school room alone, not including all of the magazines, chapter books, and read-alouds. I hate to get rid of books, especially classic collections like Clifford or Arthur or Frog and Toad. 

I contemplated lots of different ways of organizing them. Either the idea was too expensive, guaranteed not to work, or I would have had to buy more bookshelves to make it happen. My goal was to not have to purchase anymore bookshelves this year.

Then, it came to me.... I should use magazine files for the books. Almost all of the books that the kids get into would fit in them and Ikea sells them for really cheap (5 cardboard ones for $2). They are perfect for organizing! I can label the boxes and put them on the bookshelves. If the kids destroy them, they destroy them... they didn't cost much anyway. Plus, I can always replace their individual ones with more durable, plastic ones if I need to. When it is reading time, I can tell them to go pick a book out of their box instead of me having to go in and try to figure out which book would be good for which child's reading level and searching through bookshelves of unorganized readers.

After an entire evening of organizing, my book pile looked like this...

Ahhhh... so much better. They are grouped, labeled, and put in a spot. Plus, each kid has their own box (only one is pictured here... the others were already on their shelf). Hopefully, that will make reading time a lot less chaotic. 

And the final product of all of this organizing:

SOOOOOOOOO much better. I still have a lot more organizing to do in this room to make it perfect for the next school year. I will update with posts as I go along. The goal is to have easier access to all of the supplies and books and to keep it better organized as the school year progresses.

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