Middle School Journey

The buildup to beginning Middle School for Colton was much worse than the actual journey itself so far. I spent months worrying about how he would handle the change from Elementary School to Middle School. No more teachers walking you through every step of your day, no more walking in lines or not talking on the deck (halls), and no more homeroom classes. For any child on the spectrum, a common personality trait is they are not too fond of change. Things that are constant for them are predictable therefore they feel safe and comfortable. For a child on the spectrum, changes in environment, rules, organization, etc. can cause overt levels of stress and anxiety. So knowing he was going to be changing classrooms, on his own, 7 times a day, had me concerned. And the idea of assemblies and pep rallies and unplanned events made me wonder if he would be sent over the edge. Secondly, I would be awoken at night sometimes with thoughts of how he may be treated by the others in Middle School. I was worried about the older kids, the 7th and 8th graders, who don't know him and don't know his quirks. I was concerned that they would tease him or bully him just for sport, which kids have done at school in the past. So with all these worries we spent the entire summer helping him prepare for the new venture. He did some social skills training and really enjoyed it, even made a few friends. We made sure he stayed in Karate and he got to take part in his first tournament and placed 2nd! But what we think has moved the needle the most in terms of curing some of his symptoms and preparing him for MS was Neurofeedback Therapy. We called in the Spring to see if we could get him in to do an evaluation and to see if we could even afford it. The waiting list was long but we got him in late June. After they did their analysis, the doctor, without even meeting Colton, was able to describe his personality just by looking at his brainwaves (SO AMAZING!). He then mapped out a strategy to give Cole some relief by calming some of the waves and training others to work correctly. Colton did 30 sessions of the mapping which cost us a fortune. We knew the cost was going to be steep & not covered by insurance and immediately canceled any plans to go on a big family vacation this year to help offset some of the cost. To help cover the rest I picked up another side job as an Ambassador for Plexus Health Supplements. I work full time along with running a Media Company on the side so I knew this was going to be rough. But luckily we have been blessed with the business doing very well from the get-go and we were able to cover the cost of all the therapies. We saw great improvement with the therapy and we still see positive things and growth weekly that catch us off guard. We've heard from some of his teachers too who had him last year, that they see a big difference. What has surprised us the most this school year so far is how easily he has adapted to all the change. The only thing that worries him is being late! Oh my word that boy stresses about being late to school, to class, to lunch, to gym, you name it! But other than that, he has been able to stay on top of his workload and even does projects and school work quickly, not liking to procrastinate. The kids are nice to him...for the most part. They don't outright bully him but there have been some issues and luckily the were taken care of quickly before it got worse. We are blessed to be able to go to a smaller school where all the teachers know all the kids and we pretty much know all the parents as well. But there will always times when he will get picked on b/c he's different. I even saw some girls in his grade teasing him the other day at PE and laughing with the other kids at him. They didn't know I was watching from my car in carpool. Sadly, Colton knows that's just how kids are and that some will treat him that way. His skin is getting thicker and he does not melt down when he gets hurt emotionally like he did when he was in elementary. When he was younger it would happen a lot and friends would say "Oh Colton is just sensitive, boys usually just let stuff roll of his back", but what they never understood was that the others were not simply teasing him like all boys do to mess with each other, they were making fun of his weakness, highlighted his weakness and then getting others to laugh at it...or would run and hide from him and make him look for them, the entire playdate/recess, knowing it upset him. He was always the one who got singled out. You moms of special needs kids know what i'm talking about. Most of these kids are bright and understand quite clearly what is happening, because it always happens to them, every day. When they are young they are not scared to voice how they feel and how unfair life is. Others judge and just call it sensitivity. But because typical kids don't ever let others know they are hurt, they get away with it. But our spectrum kids, as they get older, they learn from their peers that it's not "cool" to show that teasing hurts you, so they learn to take it and learn who they can and can not trust quickly. But all that being said, he's been VERY happy with the kids in Middle School and is getting along well! As for the diet, many folks have asked if we've stuck to it and the answer is YES YES and YES!!! This diet is what has kept Colton from ever having to take medications. Even though we were told by multiple teachers and doctors that medication would be the only way to help him, this diet keeps his head clear and allows him to focus and not live in a cloud. We are still very strict on the diet. No gluten, no chocolate, no refined sugars, no artificial sweeteners, colors or preservatives. The only hard part is that there is not much in the school lunch line that's gluten free, except for fruit and veggies (which a middle schooler could care less about). But we still make him his foods from scratch, pizza, tacos, chicken tenders (with tortilla crumbs instead of flour), sautéed fish, scrambled eggs and bacon, gf Scones from Whole Foods, potatoes, broccoli, corn, shrimp, crab and steak. That is his list of staples. Like any kids, he has his favs and will eat them every day if we let him. We eat out sometimes and some have been great and others, like Palios Pizza, he has had horrible negative effects from. I'm sure it's b/c of cross contamination. But here is a list of Gluten Free Restaurants where we have found the most success BJs Brewery I Hop Cracker Barrel Rockfish Texas Roadhouse Okada Japanesse Steakhouse & Hibachi (HIS FAVORITE). Now I've decided to start him on some new supplements from Plexus Slim. Other with kids with challenges have found relief so we are going to see how it can positively help him. We are going to give him a packet of Slim in water each day and Probio5 at night. Looking SO forward to see the results. He had his first Pink Drink today and really liked it. So i'm hopeful!

Looking toward Middle School

School is out, and has been for a few weeks for my kids. It didn't take long for them and us to fall into our lazy summer schedule. With my work hours being shortened in the summer and the kids with little to no schedule, it has allowed us all to exhale a bit and not carry the typical worries and stressors the school year brings of deadlines, grades, homework and early mornings. I'm going to revel in this current piece of mind because coming just a few short months away is what many of us with kids on the spectrum DREAD...that's right...MIDDLE SCHOOL! Gone are the days of cute holiday class parties, recess and homeroom moms, and on to organized chaos of preteen school days. To a child who thrives in structure and sameness, the idea of the freedom of Middle School scares the heck out of him. Along with that fear, the uncertainty of the way some of the older kids will react to and treat Colton already keeps me up at night. We are surrounded by amazing teachers, who are also my friends, who I know will look out for him, but it's at lunch and PE and those unobserved times that I worry. So we are working hard this summer to prepare him, from a social standpoint, how to handle any adverse situations and how to be bold enough to stand up for yourself. If I could homeschool him and keep him under my wing forever I would, but I know he NEEDS to be with others and experience life. As for his diet we have allowed him to relax a bit letting him actually eat off restaurants "Gluten Free" menus. Some are better than others meaning ACTUALLY gluten free. He's had some meals at some where within 5 minutes is starring into space and begins forgetting things. It happened last week even and it scared us. To come this far and to so quickly relapse was a huge lesson in how to manage what and when we allow him to eat at a restaurant. We even gave in and let him have a snowcone AND a real slice of pizza at the end of school. Surprisingly neither were as good as he remembered. I guess eating healthy and clean for a year and a half can remind you what "real food" tastes like. I did create a new Gluten Free Apple Crisp dessert that is now Cole's new favorite
Gluten Free Apple Crisp 2 Cups GF Flour 2 Cups GF Rolled Oats 2 Cups Coconut Palm Sugar 2 TBS Cinnamon 1 1/2 stick of butter, at room temperature One large can of canned apples Mix first 4 ingredients in a large ziplock. Then mix in butter. Close back and knead with your hands until mixture turns into consistent sized crumbles. Spread apples in the bottom of a 9x9 pan or a pie plate. To with crumble mixture. Bake 350 degrees for 45 minutes. Serve hot with vanilla ice cream.

Attempt at a Sugarless Holiday

With the holidays coming up, I, like many of us moms, find myself scrambling to try to fit in every fun family tradition, event, and party to our holidays. I've noticed that this year, though, some things have changed. I was always one to put cooking at the top of my Christmas "to do" list. As an avid cook I always loved being in the kitchen and cooking for others was pretty much my love language if you will. But as of late, I found myself not focusing on creating food for memories but trying to create new experiences that alone would serve as memories. By putting food at the top of my "to do" list for the holidays meant now having to spend hours and lots of money researching gluten free, artifical color free, refined sugar free, chocolate free YUMMY holiday desserts. Oh my word are you kidding me? Why not just take Christmas carols, the tree and lights out of the holiday while you're at it?! And when I say spending "money" to research such recipes, I mean that in terms of buying the overly priced GF ingredients, only to have my son not be able to handle the food or not like it, and lately it has been more the latter. So now I'm just trying to take some of the candy and sugar out of his holidays a bit. Even looking toward their classroom holiday parties, my poor kiddo is already dreading the party. He knows that even if I bring him in his typical "gluten free dessert" he will be looking over at the kid next to him grinning ear to ear shoving down a beautiful dark red icing cupcake with those little green sprinkles. Solution? Well, a friend told me the other day, just pull him out of school early and take him to do something fun. Simple. Brilliant. And I think that's exactly what I'm going to do, if he's up for it. But as I roll through the rest of this season, hopefully I can avoid making sugar and foods one of the centerpieces of the season and create memories that include board games, fireplaces and our family together.

The Abstract

Since our first appointment with an Applied Kineseologist, November 4th 2011, since it was first discovered the causes of Colton's ADD symptoms as being due to all those specific food sensitivities, we have worked hard to keep him on track with this diet. Our doc had told us that there would be changes we’d see quickly and changes we would see over the course of months, as his head cleared and the toxins left his body. Well lately it has been simply amazing what Colton has been able to do in school and how his clear mind is enabling him to learn at such a deeper level. Colton has always had a hard time with the “abstract”. It was as if it took too much brain power for him to answer “open ended questions” on tests at school. He would answer the multiple choice and fill in the blanks questions (if there was a word bank), because they basically would lead him to the answers. But the open ended questions…”What are your thoughts on ……or describe how this animal would find its food……”. He would just stare at the page and say “I don’t know what they are wanting me to say”, or he just simply would not answer those questions and take the lower grades. Everything was very black and white to him, either right or wrong. Anything subjective confused him as well. The idea that others could have different answers for the same questions boggled him. Well, recently we were told that 5th grade at his private school was going to be extremely challenging and that we better get ready to see his grades drop. So he had his first few tests a few weeks back and I nervous the whole day for him, knowing he was probably stressed out and confused. At the end of the day he got in the car with a huge smile and said “Mom, Mrs. Pajela announced to the whole class that I got the highest grade on the test, and the whole class clapped for me”. He was BEAMING!!! I had no idea if she was saying this to be kind or if there was truth to this. So at this point I was dying to see what the questions were like on this test and how they were worded. MUCH to my surprise, he blew me away by answering the open ended questions perfectly and even drew a full diagram of photosynthesis. He was asked to give an example of Mutualism, and he pulled out an example he had read in a book in his class. A week later he took a quiz in the same class and pulled a perfect score. I was floating. I have no other words to describe how I felt. He had broken through a huge wall of basic understanding and is finally able to really learn, not just memorize and recite, which he has always been very good at. But I was always concerned that he was not retaining the actual knowledge of the subjects he was learning about...until now. There was a time early last Fall, prior to the diet, that we were told by an educator that she didn’t think Colton would make it much further through his school, that his daydreaming and what she saw as learning disabilities were too much. She said he would never make it through the next school year where the abstract learning will increase. She also asked if I considered putting him on medication. I told her no and told her I would like to check into the new resource program our school was offering; that I felt like he would make it at this school and we could do it without medicating him. I know lots of moms get very defensive with the idea of medication is brought up. The only reason it rattled me at all was that I knew in my heart something else was wrong with my boy. I was not upset with her or frustrated, I just knew in my gut that there was more to this. I don't know why, but I just knew we could not just give up and medicate him. I know the Lord was showing me signs right and left that something more was going on here. There was even a day where a teacher asked for a meeting with me and Colton after school. She wanted me to see how he shuts down in her class and refuses to work. So I walked into the class and he was just sitting there, looking at a worksheet on the desk. I said "ok Cole, what questions do you have for her on the worksheet". He just sat there and stared at it in silence, then put his head in his hands and started crying. I was taken aback because I had no idea what caused him to break down. It was not like him to be so emotional in front of anyone outside of close family. The teacher gave me a look of "see, this is what happens". I turned to him and got down on my knees and hugged him and told him “we were going to figure this out! I know it is hard for you and something is going on in that head of yours and it is NOT your fault. You are a smart smart kiddo, we just need to figure out what going on.” I left the room with Colton knowing that I was going to do ANYTHING to prove these beliefs of him wrong; to show that Colton is a bright capeable kid and that he deserves to be at this school. And here we are now, 11 months later, and he is such a different child. Not only is he understanding his classes more but he is organizing his day and his schedule and his school work. Even today, after school he had Karate and he told me "mom, when we get home I'll do my math homework, then have a snack and take a break for a bit, then after karate i'll study for my Science test until I go to bed". Again, this may seem like a typical kid laying out his day, but this is my child who 11 months ago did put on both shoes AND tie them without multiple prompting. He also told me that he needs to spread out studying for this big Science Unit test because "I get stressed out when there is a whole bunch to study at one time". He was able to verbalize what he was feeling, understood why he felt that way, and actually had a solution to help alleviate that stress. I am just proud beyond words of this kiddo. I think any mom with a child on the Spectrum could understand what strides like this feel like. Ever since the day he hopped in the car and told me about the great test grade and the teacher who annouced it to the class, my anxiety had lessened, and my constant worry about him has eaised. Yes, he's still my quirky kiddo who has challenges making friends and interacting socially, but he's working on it and at least now knows what it feels like to succede, and to feel proud, and to feel confident. And for all this I thank the Lord for guiding me in the right direction, down the path to begin to heal my son, for giving me strength when I had none, for giving me wisdom when I needed it most, and for not leaving my side as I struggle through the ups and down of this journey.

With Summer Comes Challenges

When summer hit my husband and I talked once about Colton's diet and "should we be a little leinent over the summer?". We both quickly decided NO and began trucking through the summer. But as the days went by we realized, we of course won't give him anything we know that has gluten, chocolate, artificial anything or refined sugars in it, but maybe we could at least try out things that "SAY" on the packaging or menu that they are GF etc. So we decided to try a few restaurants and order off the GF menu or just order him meat and veggies. We had no idea how he would respond, or how long it would take to see a negative effect, but since it was early summer we decided to go ahead and give a few places a try. For starters we went to a mexican restaurant and ordered him carne asada with a side of plain rice. We got in the car on the way home and he immediately said "mom, I need to lay down now". I asked what was wrong and he said, "I don't know, I just need to lay down, I'm so tired, I can't keep my eyes open". So I had him lay back his chair and he just laid there the whole drive home. He also said his tummy didn't feel well. I knew this was b/c of the meat and came to the conclusion that it was the marinade the meat was in....Note to self: only non-marinated meat if eating out. This exact same reaction happened to him after having shrimp at Rockfish one day. We have not taken him to eat out since. Lately our challenge is that he's getting SO TIRED of eating the same foods. He's already a picky eater and each month decides he's tired of another thing he's been eating on his limited menu, argh! With school starting there are only a few things he will eat and sending snacks to school had pretty much stopped b/c he won't eat them anymore. My goal this Fall is to find at least 5 new things my boy will eat to add to the rotation. And so here I go, diving into blogs, cookbooks and FB posts on the latest and greatest Gluten Free cooking ideas. I've met a new friend a few weeks back who was given my name because our kiddos have similar struggles. Her son was just diagnosed with a yeast issue, which is causing ADD symptoms and she has been told by her doc that he needs to be on a 10 day clenese of sugars, NO SUGARS of any kind for 10 days. Her son is young, in Kindergarten, and she is really struggling wih not only the withholding of sugars but also the huge list of supplements she has been given by the doctor. I'm am praying for her that she sticks with this to heal her son and that under no circumstance does she cheat or give in. I know this is excrutiating, I know it's torture to have your son begging you and crying for the foods they like, but I just pray that she realizes the sugars are poisioning him. That it is like him begging to drink Drano and her giving it to him. I adore this new friend and hear the pain and struggle in her voice when we talk. Regardless of what his teacher says, I pray that she keeps him on this diet! I pray that the Lord give her and her husband strength to make it through these 10 days to help get that sweet boy of hers healthy.

Spring 2012

As we've been ticking through the Spring, getting more use to our "new normal" of cooking, diets, and sensitivites, I've been in awe of how my 10 year old has handled himself through the ups and downs of this roller coaster. There is a huge emotional element to eating that we don't normally think about. I guess we do when we are on a diet to loose weight, but when you are told from a professional in the medical community that you can NOT eat this or that or your brain will swell, it brings it to a whole new level. You are not able at that point to break the rules, cheat a little, or have "just a bite" of anything you are sentenced to do without. As much as I would love to see the joy on my sons face as he eats a real chocolate chip cookie or oreo cookie ice cream, I can't even consider it when the alternative is medication that may or may not work.

He's a trooper through it all, he really is. He tries to stay positive and always tries to compliment my cooking when I try a new dish. Even if he does not like it he'll say "thanks mama for making it, but maybe next time we can try something else". He's so afraid to hurt my feelings. I love this little guy! His hardest moments though are leaving a birthday party where he had to pass on the ice cream & cake, or a teacher in a fun class I signed him up for brings ice cream sandwiches for everyone to suprise them, and he has to pass. He does this with grace and maturity, but when get gets in my car at the end of the day and shuts the door, he melts down....and my heart breaks. Living a life without is not easy for any of us, and for a child who already has challenges in other areas of his life, I see him often with that look of "why me" or "why do THEY get to eat everything and feel normal". I sometimes wish God would put this sentence on me instead of my son, let me take the brundt of this wave and allow him to not have to carry the stress of it. I try my hardest to make sure he has treats in the house, that there are snacks up at school he can have during parties etc., but I'm human and still forget to cover all my bases. I'm still learning how to navigate through this foggy world of new foods, new cooking, new supplements, etc.

As for his progress, he's doing great. He's able to focus so much better, pops right out of bed in the mornings, can carry on long converstations without fading out, and has made a great friend this year at school. It was hard for him to make deep friendships before because he had challenges with the give & take of relationships because his mind was always foggy. He still struggles in math and probably always will. I think he spent so many years in a fog tuning everything out that he now has a skill to do this that he pulls out of his back pocket during math, b/c it's difficult for him to grasp. He's no where near 100% yet and his doctor has told us we still have work to do. He's like an onion and we are just peeling back the layers only to find something new he has an issue with, so we address it, peel another layer back, and find something new. But with each layer comes healing, physcially and emotionally, and as I see his healing, have deeper conversations with him than ever before, and ride along side him during this journey, I'm getting to know the most amazing boy I've ever me, and feel simply blessed.

The Culprit

Very random. We had a doc appt Monday of this week and I pleased his doc by rolling in with these tiny viles with lids each containing a different item that Colton had had, or I was hoping he could have. Dr Von Bergen was pleased b/c he has been asking me to bring items in in this manner as it makes testing easier for him. So I had about 20 items to test and what I was most curious about was all the ingredients for those darn Sugar Cookies I made over Christmas that caused all the trouble. The strangest thing was that it was White Rice Flour and Sweet Rice Flour that Cole ended up having sensitivities to. But then he tested him on just RICE and he was fine. He was even a little stumped but said there was probably some type of contamination in the processing of the flour. And when he says contamination, he means that another substance got into the flour that he has sensitivities to. So thats just a few more items to add to our growing list of no-nos. He also can't have Udi's Gluten Free White Bread or my homemade ketchup.
I also was wondering if his doctor would catch anything in his testing showing Colton was "off" this week. I noticed he was a bit distant over the weekend and we even had a lunch/event outing with a bunch of friends and all their kids and he just sat and read a book in the middle of all the kids...totally not like Colton. I knew immediately something was off but most people just chalk Colton up to being a bit different so they didnt' notice anything. I knew something was up. So as the Doc did his basic check of Colton he stopped short and said "wait, there is something off here, something effecting his brain". So he proceeded to test substance after substance on him and told me he was "stumped". Then he said "Colton, have you gone anywhere different in the past few days" and I immediately jumped in and said "THE SWIMMING POOL!....HE WENT SWIMMING FRIDAY NIGHT". His Doc grabbed a vile of chlorine and tested him and that was IT!!!! The high levels of chlorine in that pool caused him to have an imbalance of Iodine in his system. I need to do a little "GOOGLE RESEARCH" to see what that really means. But man, if its not one thing its something else. Guess I need to lock this poor kiddo in a padded room and call it a day! :)
As for school Cole is making it through. Grade wise he is doing OK with school work but admitted to me today that he knows sometimes he just "forgets" things. In him saying this I realize that he is becoming more and more aware of his shortcomings and differences. He realizes that his brain just loses thoughts, directions, etc. and it frustrates him. I so wish I could find that one supplement or cause of the forgetfullness.
He's been playing baskeball on a team with some boys from school and is happy being part of the team. He struggles a bit physically but wants so badly to perform well and just to be accepted by the other boys and to be treated like an equal, like a friend. The more the kids treat him kindly and include him, the more normal he responds. It's when others ignore him compeltely or shut him down/blow him off that he closes off and pieces of his confidence chip away. As a mother watching a child struggle socially can be harder than watching them hurt physically. I just want my boy to be happy, to be able to soak up everything life has to offer. If we can crack this shell and peel back the layers of damage he has had to endure with all these food sensitivites and imbalances, he has just got to come out more clear on the other end. At least that is what I pray for.