Homeschooling With Sam!!

I didn't go into homeschooling because it is something I always wanted to do...it wasn't my passion. Sam had medical issues and immune system issues that made attending school very difficult. So after much pushing Ellen Doman, our NACD evaluator finally convinced me I could do it. First hurdle completed.

But then came the hurdle of Sam and I working together. This was more of a wall than a hurdle...and it was a really big wall. Sam is a great guy if you let him do what he wants to do and what he likes to do. Academics were not on Sam's top 20 list of things to do. Sam's inherent personality is pleasant but when asked to do something his response is simply "NO". Now let's take a "NO" boy and add in a mother that is not passionate about homeschooling and things can get ugly quickly.

I was comfortable going through the areas of Sam's NACD program that had to do with movement and I even quickly embraced flashcards...mainly because Sam liked them. But the academics presented so many difficulties for both Sam and I.

When I started homeschooling Sam was non-verbal. I found it really hard to continue to talk to, show, demonstrate things to a child that couldn't tell me if he understood any part of what I was saying. I had to rely on Sam's eyes, did he have that "I'm with you" look or was he somewhere far away. I had to rely on Sam's actions, was he moving toward me or away from me. Often times Sam would just move away. But that movement was communication...what you're doing doesn't interest me.

Another issue for me was when I thought about schooling I tended to refer to my public schooling experience. So I tried to create that in my home. Big mistake!!! Sam has never liked worksheets, he never has liked to sit at a table (unless he is eating) which now as I reflect back could have been an early indication of his hip issues. He is a hands on, make it fun and interesting type of guy. Oh yeah, and remember my auditory channel doesn't work all that well so I'm pretty much a visual kind of guy.

But as much as I failed in my early years of homeschooling...it really wasn't failure...because I was learning how to work with Sam. He was showing me what was going to work and what wasn't going to work.

Now add in Sam's hearing issues and the puzzle of working with Sam becomes even more complicated. Sam didn't respond to questions appropriately. Hmmm let me refer back to my school days. Teacher asks question, student responds inappropriately...teacher assumes the student doesn't know the answer. That would normally be the case...but then along comes Sam. Sam's auditory processing has been a struggle, add a hearing issue and the struggle becomes more intense. For the first 6 years of Sam's life, before he got his hearing aid, he attempted to guess at what people were saying. He maybe picked up on the last couple of words in a sentence but often his ability to hear and then understand was pretty much hit n miss. Now along with the hearing issue which affected his receptive speech abilities, Sam also struggled with expressive speech. Sam often knows an answer but can't pull out the right word or any word for that matter. I figured this out when NACD asked me to use word banks with stories and suddenly by glancing at the words Sam's ability to answer correctly went up significantly.

Now add in Sam's health and physical issues and Sam quickly becomes a very interesting child to educate. But if you have followed my blog you already know...I'm not one to back away from a challenge. We recently went to our NACD evaluation and I was thrilled that Sam's auditory processing was at a five but I also knew that it meant Ellen would check his dominance. I have always felt that Sam was cross dominant like his brother Ben since he exhibited many of the same struggles in reading and writing. Sam and Ellen quickly confirmed my suspicions. Yee Ha, another challenge. My signature for my email previously read, Sue Mayer, Mom to Sam (10) with Down syndrome, Brain Injury, Apraxia, Dysphagia, Respiratory/Immune Issues, Bi-Lateral Conductive Hearing Loss and now Hip Dysplasia & Perthes or as I like to say "Yada, Yada, Yada". It was my way of saying that Sam's labels do not define who Sam is...but I just couldn't add another one, so instead I changed my signature to Sue Mayer, Mom to Sam (10) who is genuine, unique and perfectly "Sam". I like that better.

My homeschooling over the years has become scheduled but not rigid. I changed out paper for white boards and magnets until Sam showed me he was ready for paper again. I have dealt with behavior issues, including complete non-compliance, hiding program items, tears, temper tantrums, choosing time out and an intentional lack of focus. I have struggled with my own demons of procrastination, lack of interest, lack of energy...just plain lacking. I am guilty of trying to find the perfect curriculum only to find that Sam will lead the pace, Sam will determine the interest and the curriculum that works for him will have to be tailored to him. I have tried the approach of "it's my way or the highway"...Sam quickly chose the highway.

And all along Sam was trying to tell me, show me, demonstrate to me that I needed to follow his lead...I needed to listen to him...I needed to understand him. If you would have asked me two years ago how Sam is doing with math, I would have told you it is non-existent and there is not enough medication in the world for me to tackle that subject with him. I bought the coolest manipulatives in the world and watched him hide them, shove them down a hole to the basement, feed them to the dog and throw them in the garbage. Sam hated numbers, he didn't want to count, he didn't want to recognize that a number was a quantity...he drew a line in the sand and dared me each and every day to cross it. But I just kept crossing that line. I tried new things, I tried old things, I used videos, sand, chalk, clay, magnets but each and every day we counted something, we tried something and gradually the light came on and Sam began to embrace this math concept. It's still slow but we are making progress...we didn't give up.

It isn't until I have a day like I did a couple of weeks ago that I finally realize the progress we have made. My love for and interaction with NACD often shows me the superstar kids. The ones that began speaking in full sentences when they were toddlers, the boys and girls that are having complete conversations by the time they are 7, the boys that are playing in Little League and competing on teams with their peers. I am happy for each of them but at the same time my heart still hurts for Sam.

And then he surprises me. The other week Sam and I were both sick. Now in the past Sam would have been happy to lay in bed and watch TV all day, he would have complained...no he would have staged a revolt if I suggested we do any program. But this time, Sam felt better before I did and as I lay in bed trying to get rid of a fever Sam pulled my blanket down and said "Mom, come here...come here now!" I just wanted to curl up in a little ball with my warm blankets around me and sleep but I've never been able to ignore Sam. We walked into our parlor where Sam now sleeps and I thought we were going to snuggle and watch a movie but Sam had different plans. Sam handed me his handwriting sheets and his DVD and said "Mom, Sam make better B's". You could have knocked me over with a feather. I put in the DVD and Sam said "Thank you Mom, Bye now". I walked out of the room thinking "Who was that child", maybe my fever is high enough that I'm hallucinating. I crawled back in bed only to be awakened a few moments later by Sam with more letters he felt he needed to work on. When he was done with his letters he called me again asking for his BrainPop movies. I was now sure my fever was getting the best of me. After his movie Sam was back in my room, pulling on my covers and demanding me to go with him. I shuffled through the front room and kitchen and followed him into the laundry room. Sam said, "Mom, Sam fold". As I got the clothes out of the dryer Sam laid out his Flip N Fold on the living room floor. I piled the laundry next to him and he told me to "Go bed, Mom". I was happy to comply.

A short time later Sam was back and wanting to do his words on PowerPoint. I began to say out loud "Who are you and what have you done with my child?" When he showed up with his math notebook I was sure my child had been abducted by aliens. At noon Sam plopped his gluten free bread and the peanut butter and jelly on to my bed. He came within inches of my face and said "Mom, sandwich please". I dragged myself out of bed yet again, shuffled to the kitchen and began to make his lunch. Sam suddenly whistled and said "Mom, listen", I said "Okay, I'm listening". Sam said "cow, dog, horse", "now you say". I began to chuckle, my little man, my dear, sweet, precious little man was now giving me sequences. I replied "cow, dog, horse". Sam smiled and said "Good job". I handed him his lunch, he smiled, said his prayer and then yelled "Everyone eating!" I walked back to my room, crawled into bed, folded my hands and thanked God for showing me just how far we have come.

"The difficulties you meet will resolve themselves as you advance. Proceed, and light will dawn, and shine with increasing clearness on your path."
Jim Rohn

A Day in the Life...Continued

I'm often asked what a "Day in the Life" looks like for Sam and I. Sam is currently homeschooled due to respiratory and immune system issues. Soooooo....I was not one of those parents that had dreamed and inspired to homeschool my children, to be honest I went into it kicking and screaming. But the good news is that I am happy that I did and I like; even love many things about homeschooling which I will try to show here. I currently have one child in public school, one in private school and one homeschooled with some extra curricular in school activities.

I'm also asked many questions about supplements, the SCD diet and our NACD program. I'll see if I can hit on those too. Now, before I get started please understand that this will be a long post. I've never been a person who is short on words but hopefully I'll answer some questions and give some ideas along the way. Also keep in mind, that this is one day and that doesn't mean that this is what every day looks like. Some parts remain the same, some change due to outside therapies, sometimes I have to go to work and sometimes Sam is not feeling well which means we snuggle and he sleeps a lot.

My day usually begins at about 5:45 a.m. when my husband, Jeff gets up for work. I wake up Ben, our now 15 year old (Happy Birthday, Ben) and he eats breakfast. We do any last minute studying and he gets on the bus at about 6:45. Then it's time to get Danielle up, fed and on the bus by 7:35. Usually Sam is waking up by about this time. Now here is one of my favorite parts of homeschooling at least in regards to Sam. I let Sam wake up on his own, he's really not the kind of guy that likes to get woken up...honestly the attitude is much more cheerful when he decides it is time to get moving. I also think it is important to let him get extra sleep if he has not been feeling well. Sam wakes up and gives me my morning hug and kiss....wouldn't trade that for anything. We turn on and put on his bone conduction hearing aid hat. Sam drinks his first dose of vitamins which includes Brain Link, coconut kefir milk, distilled water and a little splash of orange juice. He will normally watch a little bit of television while I prepare his program stuff, feed the dog and take him outside, clean anything leftover in the kitchen and prepare Sam's breakfast. Sam's meals are usually based on the concept of protein, fruit and vegetable. I try to stay away from processed foods but do use some gluten free products occasionally. Sam is on a version of the Specific Carbohydrate Diet because of his immune/respiratory issues, his build up of yeast from antibiotic use and to help heal his digestive tract. I say a version, because we have added some foods back into Sam's daily diet based on his ability to tolerate them. For breakfast today Sam is having a banana, some raw green beans and carrots, a small bowl of gluten free rice cereal with goat milk and 2 minimally processed nitrate free turkey sticks. We pray before each meal and usually touch on a Bible lesson at this point. When Sam has finished breakfast he has a cup of applesauce with his 2nd set of vitamins which includes, CoQ10, Vitamin C, & D for his immune system, Prevacid for reflux, grapefruit seed extract, garlic & an enzyme for his digestive tract, gingko biloba & 3 Speak supplement capsules. Sam is very good at swallowing his supplements with apple sauce because he has learned his food tastes way better when Mom doesn't have to hide supplements in it.

Sam goes up to his room to get dressed and the TV is turned off. He and I usually touch on the calendar and talk a little about the weather outside. Because of Sam's apraxia, I sometimes script his speech for him. So for example, I say "Sam, how does the weather look today", I will then write on his board "It's cloudy, maybe it will snow", he reads this and I act as if he has said it and respond. "That would be great, we could take a walk in the snow". Always, always trying to help him pull out and use his speech appropriately.

We then start our NACD program. Now I'm going to warn you that our NACD program this round is a bit lengthy and we are in the process of figuring out what will work and not work into our day. Also keep in mind that this program is individualized to Sam's needs as are all NACD programs. When I started NACD with Sam everything was centered around play and he often didn't realize that he was working on his program he just thought we were playing. But Sam's processing has come up and a more scheduled day is necessary to help him meet his new goals. Don't get me wrong we still play a lot but we also have some structured time to help move his skills along. My NACD coach suggested I put my program activities on little sticky notes that I can move from one side of the table to the other as I complete parts of program. I like this because it allows me to quickly look at what needs to be done and to easily put physical aspects in between to break up some of the academic work.

Yep, that's a lotta sticky notes. We usually start with something physical to get us up and moving so I decided to do the deep pressure to Sam's legs and feet and then jump on the little trampoline. We are still working on getting Sam to jump, he will jump into a pool but not really just jump on a floor. Then we move over to the computer, one of Sam's favorite things. We start by working on the 1000 most commonly used words in the English language, inputting about 15 new per week and reviewing the old. To help keep Sam's attention I put pictures of his family in between and we talk about the picture...always working on that speech.

Also on this same PowerPoint presentation are his dot cards to help him identify amounts at a glance and his addition flashcards. We are currently working on inputting so I show him the dot card, tell him the amount and move to the next one. I love using PowerPoint because I never have to worry about misplacing my cards and I can make changes as needed. We tend to go through new words twice and the review words once. But this process is repeated a second time later in the day. After this we run over to the punching bag, roll our big spongy dice, read the number and punch the bag that many times.

Then it is back to the computer to work on some reading. One of our fellow NACD families had scanned in some of the stories from a Level 3 reader and added some great pictures so we read those onscreen. Sam is still not comfortable reading the Level 3 readers from the books, I think the amount of text on a page and the size of the text makes it difficult for him to track and he becomes tired and frustrated. But when the text is onscreen you can enlarge it, show one line at a time and highlight the words as you go. Sometimes with Sam it's not his inability to do something it's figuring out how to make it work for him. After reading we usually move on to Zoodles.com or Webber HearBuilder Following Directions. He loves both of these because he is playing games and doesn't seem to realize the important areas we are working on. After 10 to 15 minutes it is time to get some exercise and play WII tennis, great for hand/eye coordination. I still need to assist Sam hand over hand but each time we play he begins to participate more and more. We are also working on bowling and baseball.

Then it is on to some speech activities. I place sticky notes on 4 items in one room, Sam has to locate them and then we talk about what the item is, who's it is, where it is and what it is used for. If Sam has difficulty answering we use our scripting again to help him along. We move on to some trigeminal stimulation and facial stimulation to wake up those muscles in the face. Then sitting in front of a mirror we practice moving both the left and right side of our mouth with a little, OOOO & EEEEE work. Because of Sam's brain injury the right side of his body is a little weaker than the left
side so we work on toning up both sides. We then move on to some oral motor exercises, he watches me move my tongue up behind my front teeth, then down behind my lower front teeth, putting my tongue into my cheeks, puckering, smiling and a few others and he trys those activities himself. We then work on our functional words and phrases with a lot of emphasis on proper articulation. This can get boring for Sam so sometimes I add my own funny faces to the oral motor part or I ask him to repeat the words into the tape recorder or to Dad on the phone or to his dog Buddy. Buddy will normally reward him with a big old wet kiss. We usually break into something physical again like a WII game, trampoline, punching bag or practicing connecting Buddy's leash and taking him for a walk around the circle.

We then return for a math computer game, one of my current favorites is Reader Rabbit Preschool through 1st Grade. Math is not one of Sam's favorite areas so we are still working on the basics. This computer game has a lot of fun activities that if I tried with Sam on paper or with manipulative's he would fight me but he will work on the different areas in this game. Again this was another area that we had to figure out what was going to work with Sam. Please don't get the idea that everyday is a smooth running operation because it's not but each day we get a little bit better at figuring out how to work together and still make it kinda fun. We also have a math game called Stomp that requires Sam to step or stomp on the button which causes the numbers to fly off and then he has to listen and replace the numbers in the right order. We have not moved to the higher functions of that game yet.

We introduce 20 new receptive language cards to Sam a week. I love printing off the free flash cards from the ESL (English as a second language) websites. Due to Sam's hearing issues he has not always picked up on the words people use around him. He needs to have new words introduced to him with good articulation and a visual or picture. When I went to a deaf and hard of hearing conference they emphasized the need to introduce common items found in a child's everyday environment in a way that they can understand. For some children it is through sign, others may need to read the word and for Sam the picture and written word seems to be the best approach. We are basically working to expand his understanding of his environment and to expand his speech. Sam understands what a table is but now we are working on coffee table, corner table, kitchen table, night stand...more advanced receptive language. Just think about the speech you use everyday, couch, sofa, love seat, chaise, davenport...all talking about the same thing but Sam needs to be introduced to each of them and realize they are different ways of talking about the same thing.

We do a lot of written directions with Sam. Here is an example of a list he reads through himself and then performs each step while we get ready for lunch. When he has completed a step we check it off, which is one of Sam's favorite parts. Sam's comprehension when reading a book is not as good as his comprehension when he is reading and doing his written instructions. I'm hoping that as we continue to work on things like written instructions, read and do, treasure hunt he will begin to improve his book comprehension. It just demonstrates that Sam's comprehension needs to be tested in other ways, ways that make sense and work for him.

An area Sam loves is fun unit studies. I've shown what those have looked like before on my blog when we were studying about animals. The idea behind a fun unit study is to take something your child is interested in and learn everything you can about it. Dive into it, explore it, enjoy it. It has always been interesting to me how we tend to work in so many different areas of learning (math, geography, social studies...) just by learning more about something Sam is already interested in. This is definately another one of the areas I love about homeschooling!!!

An area we work on each day is auditory and sequential processing. I can't stress this activity enough. Why??? Because here are the areas auditory and sequential processing help with:

Academics (students with strong processing skills demonstrate high academic skills)
Emotional maturation
Communication and language
Comprehension
Learning
Self-efficacy
Concentration
Attention span
Creativity
Decision-making
Alertness
Problem solving
Reasoning (correlates high, .8 to .9 with working memory)
Multi-tasking

Sam is currently at a 5 in processing, meaning I can name 5 things with a second in between, I then put 7 picture cards out and he has to choose those 5 things in the order that I gave them. Please find out more and check your own processing for free on NACD's The Project Website, http://www.nacdtheproject.com/. As you test your own processing you can learn how to do visual and auditory sequencing with your child.

As you may have noticed this does not cover all the sticky notes you saw, some of the activities are repeated numerous times and some of the sticky notes are reminders of behavior modifications such as redirecting all sensory play or enforcing time out for non compliance. This is the structure we try to work on. Some days Sam has therapies which alter/move and in some cases eliminate different portions of program, some days we have wonderful compliance and some days not so good compliance. When Sam is ill we slow down or don't do any program. And some days life happens and we don't get much done but by organizing and having a plan we have something to work toward each day. The sticky notes are more for me than Sam...I need a schedule, I'm too easily distracted. I also need to set short term goals to help me work into and maintain our homeschool program. The underlying structure keeps me motivated and organized, Sam's mood, interests and motivation determine the day to day.

By lunchtime the majority of our program that we are going to complete that day is done. Sam will eat a lunch of nitrate free hot dogs or some type of healthy protein, sugar free ketchup, cucumbers, dip and an orange and he will take his last set of vitamins which consists of one more Speak capsule, zinc and Longvida Curcumin. Snacks are usually turkey sticks, fresh vegetables with dip, fruit smoothie, fresh vegetable juice, Organic Coconut Bliss Ice Cream, popcorn, fruit, organic blue chips... The afternoon is spent running errands, reading a book together, house chores (Sam likes to take out the garbage, empty the dishwasher, fold clothes, gather the laundry and he works on cleaning up his toys with a little encouragement), going to the library or some field trip, sometimes we just watch some TV or take a walk. Sam will now be attending a gym class twice a week in the afternoon at the public school. I try to have everything done with Sam by the time Ben returns home so I can focus my attention on working with him and getting Danielle to whatever practice or game she may need to go to.

Soooo, this is a glimpse of a "day in the life" for Sam and I. Although we have structure we also have a lot of flexibility on what we are studying or how, games can change, fun unit studies change and it is that ability to change, to try something different when something doesn't seem to be working that I and Sam most love about homeschooling. We have no set procedure, I was not taught to teach in any particular manner and in that lies the beauty of homeschooling and why Sam and I enjoying homeschooling. I spend time watching and learning from Sam how he learns, what works for him and I don't give up. He and I are in this together, in good times and bad, crabby days and happy days but always, always moving forward.