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.

Wednesday, March 16, 2011

Mommy's New Mantra

     I'm not really sure if it's an extreme case of "we've really just had enough of winter and need some spring" or what, but the last several weeks seem to have been tougher than most. It seems to me that this has been the winter that just wouldn't end, the snow, so deep on our yard that Jacob couldn't even safely go out to play in it, no seriously, I thought I would loose him or that he would be completely swallowed by it the few times I tried to get him playing in it.
     We can commence with the rejoicing now, an end is finally in sight and spring is coming, I promise !
Being stuck in the house most of the winter is not fun for most people, now try doing it to a child that to a child who is sensory seeking and super active. There is only so much "heavy work" and input you can find to give a 3 year old inside of the house before said three year old starts to become bored, destructive, disobedient, and down right hard to be around.  To say that Jacob has become demanding is putting it mildly, to say the he has really become fresh is also putting it mildly. When Jacob wants my attention and I ask him to wait for just a minute, he starts to demand it by acting out, crashing into me, pulling on on me, making sure he is directly in my way no matter what I'm doing, he yells or screams so loud that your are forced to turn your attention to him immediately because you cannot hear what it was you were originally doing anyway. If he asks you for something and you ask him to wait he will act as though he never heard you and continue to ask the question until you feel like your ear drums will explode. Because his older siblings do not particularly enjoy his company he acts out toward them by screaming at them, crashing into them or even at times hitting them, which really is just a vicious cycle of him acting out, them wanting even less to do with him.......and round and round it goes. I have tried just about everything I can think of to gain control of the situation without losing my mind completely. I have yelled back, employed the patience of a saint, put on time out, sat with on time in, taken away things and ignored, all to no real working solution so far. Even after doing therapy with an OT for several months now, things have gotten worse not better.
     I continue to hold onto spring and some major outdoor sensory input filling hours and my last best hope.  In the mean time I have had to sit down and do some major thinking about the best way to approach this situation before it further spirals out of control. In thinking and researching on line I have worked out some new techniques that I am hoping will work. The first thing I am trying is visual cuing, a daily picture schedule, a big red stop sign, an "If......Then" picture board, and more sign language so that he can visually "hear" the word while I sign it and say it. I will get a large timer so that he can see elapsed time if he is waiting for something. Rewarding positive behavior with things he enjoys, like playing games together or extra quiet reading time with mommy. 
     Added to these new, more visual tools, I have given myself a new "Mommy Mantra" to follow and say to myself when things start to get out of control.
         1. Have patience mommy, he is just a sweet little boy with special needs and right now his need is you,
             his mommy.
         2. Understand mommy, because he is too young to understand his own special needs.
         3. Teach him mommy, use this opportunity to teach him the right way to handle situations.
         4. Believe mommy, believe in yourself, never second guess your ability to be a good parent,
             believe in him, he will overcome every tough spot life puts in his way, he just needs someone who
             will never stop believing in him.
         5. Love him mommy, unconditionally, the same way he loves you.

I guess if I needed to add a number 6 it would have to be: Dirt and mud is our friend mommy, puddles are a dream come true, and rain is just wet. It all comes out in the wash so if "Mud Day" seems best, even if its the fourth day in a row, it's ok, at the end of the day it will just be a ring around the tub and some water down the drain.

Wednesday, February 23, 2011

Walking Shoes

     I have been thinking recently how very far we've come. How far Jacob has come, how he's grown. I wrote something almost 2 and a half years ago, when Jacob finally started walking on his own and I thought I'd reprint it, for fun I guess. Jacob had just gotten, worn, and walked in his very first pair of shoes and I couldn't believe we'd made it that far. So here it is.

October 4, 2008
   Jacob got his first pair of walking shoes yesterday. To most this may not seem like such a big deal, but to us, it is so much more than just a pair of shoes. It's the ability itself to walk. It's how two weeks ago our sweet 14 month old was still just cruising and had only been bearing weight on his legs for 2 months. Those first unbalanced, unsupported steps will forever be etched in my mind. Countless doctors appointments, 2 major surgeries, casts, bandages, sponge baths, braces, and now shoes. Two fat little feet, scared but perfect anyway ready to take on the world. Walking today but running tomorrow. What a long road we've taken to get to this place, it took more motherly strength than I thought I possessed and a little baby boy who was so determined right from the start that it gave me the strength that I needed to face it all. These shoes mean so much.

A diagnosis , or the beginnings of one at least

     This week, along with regular therapy we finally took Jacob to see a developmental pediatrician. This was not your run of the mill, rush in, "ya, ya, ya", rush you out the door because we have others to see, kind of appointment. We sat for nearly 3 hours and shared every detail about Jacob, from birth through now. I feel like we should invite her to holidays at our house now that she knows so much about us !
    So, three hours and much talking and checking later, we have a diagnosis or the beginnings of one at least. Here it goes, Dyspraxia, Sensory Processing Disorder (sensory seeking), Hypotonia and if he has Cerebral Palsy it is very mild. Because Jacob is still only 3 and not yet in school or a school setting she does not want to say that he also has ADHD but it is definitely a diagnosis he will be getting at school age, unless of course he changes into a completely different child between now and then. From what I have been reading lately most doctors do not feel comfortable saying ADHD when it comes to preschoolers, I understand this and will wait it out and see what happens over the next few years. The doctor also would like to run some blood tests and would like us to go see another orthopedist for a second opinion on his corrected clubfeet, his left foot does have a significant curve to it. The left side of his body has always been the weak side so, this may not be a relapse of the clubfoot, but possibly a stronger sign of CP.
     We talked about several strategies to deal with Jacobs needs and, in the coming weeks I will be slowly implementing changes that will hopefully lead to a happier, easier to live with preschooler and an overall more smoothly running household.  I have my doubts about the household in general because none of use have ever been close to normal and why change now right?
    Al in all, a good day. I am happy that we have a solid diagnosis, from here we can work to make sure that Jacob has everything he needs to excel at life.

Friday, February 4, 2011

Starting fresh......Life with Jacob part 2

     After a visit and long talk with our Pediatrician at Jacob's 3 year old well child check we finally started putting the last three years worth of pieces of the puzzle together. Now that much of the attention was off of his now mostly corrected feet, we were all able to look past them and really see in a big picture all the little things we had just pushed aside over the last three years.
     The first few months of his life Jacob had these crazy muscle spasms in one leg, it was like every so often the leg would go totally crazy and jerk and shake, at the time I chalked this up to an immature nervous system. I tried to breast feed but we just couldn't get it to work, he couldn't latch and choked and  I  finally gave up completely at 3 months, I was supplementing right from the beginning  anyway just to make sure he was getting what he needed. Even with a bottle he choked and his sucking was never smooth, it was choppy and "chokey", I tried different bottles, different nipples but nothing helped, it wasn't until he was 8 or 9 months the he managed to take a bottle well. One of Jacob's eyes teared constantly (my daughter had this in both eyes as a toddler so I didn't really think anything of it). When Jacob finally began to smile at a couple months old, only one side came up, the other side just stayed there (the same side that the eye teared). Jacob cannot pucker and is just now learning how to O his mouth but can smile almost normally. He favored one side of his body over the other, even his Early Intervention PT noticed this and commented on it several times. When he bothered to chew food he chewed most things on one side, he was also a "stuffer", he stuffed as much as he could into his mouth and eventually it went down, a huge choking problem that scared me terribly. When he stuck his tongue out it never came out straight, but instead to one side.If you watch him talk now you can see that his mouth slants one way. As for his "red flags" for being on the spectrum, he loved being swaddled way beyond what normal babies are swaddled, I'm talking to nearly two and the we would tuck him into a sleep sack and he would squish himself into the corner of his crib. Jacob avoided eye contact, rarely laughed, didn't answer or look when you called him, preferred playing with things to people, he didn't use words, he at one point actually lost some wordish sounds that he did make. There were other things too but it is just alot to write here so I give you the general gist of things.  In her early notes, his EI special teacher even states that she can't believe that we saw these "red flags" so young and she believes that he is on the spectrum, by the time we "graduated" from her she writes that "she cannot believe how Jacob has turned on a dime, from a child she believed to be on the spectrum to a child that is functioning almost normally".  In looking back we also realized that all the visits we made to the neurologist because of his plagiochepaly, touched on things that we should have picked up on also, mostly dealing with his preference for using only one side of his body. The doctor left the practice and we graduated from the helmet so we just didn't go back (another mistake).
     So now that we start putting these things together the pediatrician thinks that we should look into the possibility that perhaps he had a stroke during birth or that maybe he has mild cerebral palsy or perhaps both. This is an issues we are still in the process of seeking out answers for but in the meantime we did the PT eval and also went through our school district and had OT, speech, and psych. evals. done as well.
     The PT was the first one who felt SPD (Sensory Processing Disorder) was one of Jacobs issues. She said things that at the time we just smiled and nodded (and took mental notes) through, but later ran home and began researching. Things like sensory seeking, proprioception, low tone, heavy work, a whole list of things that answered so many questions. Up to this point the term I was using was "strong willed", but I will save that post for another time. His OT, PT, and speech evaluations came back showing that Jacob had significant delays in almost all areas, including ; fine motor, self help, gross motor, eating, oral motor, swallowing, and sensory processing. Most of his test scores (at 39 months) placed him between 17 and 23 months. He has trouble with focus and now see all the ways he is a sensory seeker (again best left for a future post). The phych. eval came back with some pretty significant delays in daily living skills, coping skills, and fine and gross motor skills. The bright spot in this for us was that his cognitive skills come back at the 6yr 9month age range, again this answers quite a few questions and leads to some pretty interesting monents.
    We took Jacob to another neurologist in late November and among other things he feels Jacob has Dyspraxia which we can understand. He asked to do some other tests but we have decided to hold off and instead take Jacob to a developmental pediatrician first, we just didn't feel "right" about all the tests the neuro wanted to do, and before we do them we want a second opinion. Appointment yet to come.
  Jacob started therapy in mid-November, he goes for PT and OT twice a week and speech/feeding once a week, I do alot at home to reinforce the therapies he receives.  It's only been a few months so we haven't seen huge leaps but I did for the first time get a kiss with a somewhat rounded pucker and after waiting 3 1/2 years, it was the best kiss I've ever gotten! 
     I don't use the terms special needs or 2E very much, I have a hard time, because of all I've read, despite Jacob's many needs, we don't really deal with nearly as much as other parents do. We have a long road ahead, and some days that road seems almost endless, when he is finally down for the night I sit and wonder if it will ever get any easier, I don't have those answers but for the time being I'm patient to wait.