Monday, November 5, 2012

Confessions of a reformed Pasta Mom...............our journey to better nutrition and a GFCF diet

       This post is about my family's journey to better nutrition and GFCF eating, the diet plan we are following is not a miracle cure-all, nor does it work for everyone, it doesn't even work the same for those it does work for. We have seen changes in our son, know people that have seen change in their children after going GFCF, but, we also know people whom the changes have done nothing for. My son's diet and the supplements he takes are recommended and  followed closely by his pediatrician and I strongly urge others that are thinking of making the same kinds of changes to seek the advice of a qualified professional.
     When I was younger, before I got married, I dreamed of being many things when I grew up. How thrilling would it be to be a secret agent and save the world, how cool to be a famous singer/model/actress and live a rich and glamorous life and own houses everywhere, how amazing would it be to travel the world as an archaeologist discovering the mysteries of the ancient world ! Of course list most girls my dreams changed often, with the exception of a few that stayed true my whole life. In addition to all the cool things I wanted to be or wanted to do with my life, I wanted also to be 3 things and these three never wavered, I wanted to be a nurse, a teacher, and most of all a wife and mother. I went to nursing school during my junior and senior year of high school and took my nursing boards at 17 and passed, I became a nurse, wife and mother followed not too long after.
     Growing up I always said I wanted to be June Cleaver, my best friend said I should be Donna Reed, she was cooler, I had wonderful ideas about cooking fantastic healthy meals and delicious snacks for my family. Well scrubbed, happy, perfectly behaved children would troop off to school each morning having had a good homemade breakfast, their lunchboxes packed to overflowing with well prepared home cooked meals, I would have yummy snacks waiting when they arrived home from school, I would greet them with a baby on each hip and a blissful smile on my perfectly made up face. We would play and do homework and when Dad arrived home we would say grace and enjoy a healthy well put together meal, and then do the dishes together before we spent the evening doing any assortment of happy family activities before each child was read to and tucked in each night.
     At 19, I got married, almost exactly a year later, at 20, I became a mom, shortly thereafter reality set in. Three and a half years later baby number 2 came along and boy oh boy did reality set in. I could do many of the things I had dreamed of doing for my young family, just not at the same time........or on the same day. I was floundering and having trouble keeping everything together. I decided that spending time with my children, making their growing up years as special and as memorable as possible was more important to me than taking the time to cook, bake, and otherwise make good from scratch meals. Sure I still cooked, baked, made breakfast and packed lunches, but now I sought out the easiest, most convenient prepackaged, boxed, bagged or ready made foods I could find. The less time I had to take cooking, the more time I could spend raising my children. I thought that by finding the healthiest boxed ect. foods I could find that it would be fine, they would still be healthy and happy kids, and they were and still are to a degree.
     Fast forward 15 years to the birth of my youngest son, I still felt the diet choices we made were good ones, and they were, there was healthy cereals in the pantry, canned fruits, fresh fruit, the occasional vegetables with dinner, and there was PASTA, lots and lots of pasta. Pasta in every way shape and form, boxes of it filled our pantry, plain pasta, pasta side dishes, meat helper meals with pasta, frozen pasta, and yes some canned pasta meals too. At least 6 nights out of 7 we were having some type of pasta as our or with our dinner. There was bread too, lots of it. Sprinkle cheese and ranch dressinh, there was soooooo much sprinkle cheese and ranch dressing we could have supported a small nation on the stuff ! Not only was this type of food easy, but it was cheap too and with this new little baby, born with special needs and more needs on the horizon, cheap was good and pasta was easy. Easy enough that the older kids could even cook it on their own if I was dealing with baby brother. We were all happy, and well fed.
     Fast forward again another 4 1/2 years to late last winter. My two oldest were now teens and Jacob had just been diagnosed with CP, ADHD (we saw it coming) and SPD (this we knew already but now it was on paper), we were also told that "on paper he was clearly on the spectrum, but was too friendly". This visit in itself is another post yet unwritten but the gist of the conversation was, "Your son has this ADHD diagnosis and clearly MUST be put on meds ASAP"! At the time my husband and I were not ready to take such a serious step with our 4 year old. It has nothing to do with being against meds all together, it has more to do with using them as a last resort not as a first step.
     Immediately following this appointment we sought out a more "natural" pediatrician, explained to him what we had been told and what we were looking for, which was a more natural way to treat Jacob's ADHD and other issues. He recommended some supplements and that we change Jacob's diet to a GFCF, artificial dye free, as few prepackaged foods as we could manage, fresh healthy preservative free foods was what we should seek out as often as possible. This was a huge blow to this pasta loving mommy, what could I feed my little boy if I couldn't give him lots of milk and prepackaged pasta meals????
      I made a halfhearted effort for a few months with no real results, I was still giving him the same things just less of them and I finally wrote the new diet off completely and went back to our regular diet for another 2 months. After all, it was hard, change is hard. It cost extra money and took what seemed like a ton of extra time to research products and read labels while out at the store. By the end of that 2 months I actually felt like things had gotten significantly worse, Jacob, I felt was out of control. At the time he still saw a speech therapist 3 days a week, a physical therapist 2 days a week and was suppose to be seeing an OT 3 days a week too. Every time one of the therapists would leave our house I would cry, Jacob was mean, rude, uncooperative, and down right defiant. He had moments where he would be okay, but for the most part he spent the whole session telling them to leave, that he hated them and that they were fired. He spent a lot of time telling us and anyone else that crossed his path the same thing. He regularly fought everything we did, most times it seem he just enjoyed being difficult and obstinate. He didn't want to play alone, we had to be with him, yet he wouldn't actually engage us in play, he just wanted us as bystanders. Jacob also began stimming, which was completely new to us, at first I actually thought he was trying to hit me, but after a while I realized what he was actually doing.
     Jacob's behavior was just over the top, by the end of the day I had nothing left, I was physically and emotionally spent, yet I still had the rest of my family to take care of. I finally got to the point where I seriously starting considering the offered medication route and placing him into full time public school as soon as the school year began, which was a huge thing because my husband and I had already decided that the school's full day full special ed class was absolutely NOT the place for him. We had already decided that we would home school Jacob, and here I was ready to throw that all away. I was ready to give up, throw in the towel and push my problem to meds and a bunch of strangers at a school. Why? Because it was hard and I wanted to give up darn it! I was ready to give up on my sweet curly haired gummie bear, I was tired and I WAS GOING TO GIVE UP. (Even writing this makes me feel terrible)
     I don't remember the exact second or even what triggered it, but I looked at that sweet little boy and felt this feeling, heard this quiet voice inside my heart and it whispered to me. "You are his Mommy, he depends on you, loves you wholeheartedly, thinks you are a super hero, you are his entire world, and at 5 years old, that means so much, and if you, his Mommy, give up on him, who won't? If even his very own super hero Mommy gives up on him, who in his life won't? If you can't stick with it through thick and thin, the good and the bad, then who will?"  Wow............that quiet voice sure was powerful and in that moment I knew......I was going to do this, I could do this and I didn't have to do it alone and I hadn't been alone thus far.
     Right then and there, like the flipping of a switch, everything changed. I was determined to do everything I could to help Jacob, to help me, to help my whole family. My husband was still skeptical about the diet change and didn't understand why it would matter if we just cheated here and there. To this day, now a couple of months later, he still feels it would be okay to cheat, but even feeling like that he has been absolutely on board and supportive the whole way.
     We cleaned out the pantry, the fridge, cabinets of all the snacks that Jacob can no longer have. We bought a few cookbooks and some other printed materials that help with the shopping. We replaced all staples such as flour and oatmeal. Milk was replaced with vanilla almond milk and as a treat chocolate almond milk, we have organic 100% juice, we also encourage lots of water and Jacob has also come to love hot tea with honey. There was no gradual weaning, it was a total change, cold turkey. I actually think it was harder for us, thinking he was being deprived of things most kids have, than it was for him, he made the switch without batting an eye. Jacob is the only one of us that is fully GFCF and dye free, but the rest of us have changed a lot about the way we eat. During the 2 months since we had made the change our oldest son has gone away to college and our daughter has become a vegetarian, and aside from a few things, like milk, bread for sandwiches and our now VERY RARE pasta dinners, we all follow the same diet. (ok, we do sneak the occasional cookie, but Jacob has some very yummy snacks of his own too) Meals at our house now include lots of vegetables instead of mountains of pasta, I haven't bought ranch dressing or boxed mac and cheese in almost 2 months. I make homemade soup stock, cook lean meats, chop lots of veggies, cook all kinds of yummy meals, and love finding new recipes that we can try.
     All of Jacob's symptoms have not magically gone away but, he hasn't fired anyone in almost 2 months, and he doesn't say he hates us near as much as he did a few months ago. Jacob has also begun to play on his own for short periods of time and seeks us out to actually play with him rather than watch. We have even noticed that he has started to enjoy and interact with our 2 large dogs, where up until 2 months ago he wanted nothing at all to do with them, if they even came near him he would become very upset, now he pets them and talks to them all the time. Our days at home are smoother, calmer, he still has ADHD, SPD and Jacob's doctor's have recently added the diagnosis of Aspergers to the rest, but the journey is not as hard now, at the end of the day, I look forward to tomorrows.
     Jacob is very aware of his dietary changes and delights in informing people regularly of them.
     As an added perk, I have learned that I love to cook real food for my family, and that it doesn't take nearly as much time away from memory making as I thought it did all those years ago (this makes my inner June Cleaver very happy).

Tuesday, October 30, 2012

CP, ADHD, SPD, and Aspergers Oh My!.........or A Bowl Full of Alphabet Soup and What Do I Do Now?

I'm not really sure where to start this post...............Hmmmm it's not easy to lay it all out there for others to read but I will. Sometimes,  the sound of Rob's chainsaw snoring keeps me up I lay awake at night with nothing but the soft sound of night to keep me company, I question this journey I am on and where it will take me. I start to feel sad or even angry, why was it me that was chosen for this, how am I suppose to make this journey and guide this sweet little boy to the amazing man I know he has the potential to be?? What if I can't do it? What if I am an utter failure? What if I'm not strong enough, not smart enough, not whatever enough? What if, what if, what if?? Sometimes I even wonder if we have read too much into things. Questions roll around and gnaw at the very core of me. My faith is strong.......doubt can be beyond strong and so sometimes........I AM AFRAID.
     So here I sit, I sit, a big old bowl of diagnosis alphabet soup sitting in front of me, steaming hot and just waiting for me to dive right in and wade through what it all means. What it means for everyday life, the right here right now, what needs to be done and how do we do it? What goals do we set and how do we achieve them?  What it means for the future, where is Jacob headed and what things can we do to guide him on his way.
     Most recently Jacob was diagnosed with Aspergers, I won't say I was surprised, I saw it coming, I was surprised that it didn't come sooner actually. Back in January we filled out a huge stack of paperwork and test kinds of things, saw a local developmental pediatrician and got hit over the head with a lot. (I won't go into her attitude or awful bedside manner right now) She looked over everything, asked a few questions, took some notes and handed us more letters to add to our soup. What she said was, Jacob was, on paper clearly on the spectrum, but he was "too friendly" so no, he has ADHD, sensory processing disorder,  low muscle tone, and mild hemaplagic cerebral palsy. These things I already knew, had know for a while, even if it hadn't been officially on his medical records. I will leave the details of this specific visit for another post, because trust me, it deserves its own post, its a doozy. About a month ago Jacob went for his annual check up with his regular doctor, we had been noticing some other spectrum type issues going on and mentioned them to her, she wholeheartedly agreed that looking over the previous paperwork and knowing Jacob as she does, that he is, friendly or not, on the spectrum. Again, nothing we didn't already see coming, but I still felt deep sadness, grief and fear. That bowl of soup got even deeper.
     What am I suppose to do now?? Just what I have been doing all along, I pick myself up, dust myself off, push that sadness off to the side, get myself together, make a plan, research, think, and get on with the journey. If I don't, if I just give up and be sad or mad or whatever, then what?? I'm Mommy, Jacob's Mommy, I signed up for this journey, sight unseen and I can and will stick with it, the whole way. Come the good, bad, ugly, hard, snuggly, or whatever lies in-between, I lean into my faith, trust myself and do it. I don't quit, no matter how hard the bad days are, I DON'T GIVE UP, not on myself and not on Jacob. I am his mommy and if I give up on him then who won't give up on him? So I plan, not alone of course, my husband and I plan and make decisions and take each day as it comes, and we have grown closer in the process.
     We have had to make so many decisions recently in regards to Jacob and there are more in our future, but for now, we are in a happy place, and feel good about the direction things are going. This past September while many other 4 and 5 year olds were boarding big yellow school buses and heading off to kindergarten, Jacob kept his jammies on late, didn't rush through breakfast, and spent long late summer afternoons soaking up sunshine at the park, digging with trucks in our yard, and meeting other kids that were doing the same thing. We have also spent alot of time reading, doing art work, talking about communities and maps and the whole wide world, doing math while jumping on our mini-tramp, and doing therapies like OT, PT, and speech all on our own, we walked away from the school completely (again, story best saved for its very own post), and everyday as we see our little boy growing, learning, and thriving we know without a doubt, we did the right thing.

A New Start..........Again

     This post has been a long time coming........just over a year and a half. Too long. It has been a long road, getting here has not been easy, nor has it left much spare time for keeping a blog. It's time, I think, I need to write, to put into words what rattles around in my brain, haunts my dreams. So yet again, here I go, hopefully this time I will stick with it, instead of holding it all inside. So here's to a new start...................again.