We're here... the bottom of the cliff that we jumped off of over eight months ago. A choice we made as a family to give our second son an opportunity to try a new program of sensory, gross motor, and cognitive training. I vividly remember talking with our family helper after coming back from Ben's evaluation meeting and saying the words, "It's gonna be a crazy six months." Crazy didn't even scratch the surface.
The Brain Balance Program required us to completely alter our family culture in order to give Ben the best odds at successful outcomes. As if I needed a reason to become more structured! HA! But there we were. Hoarding TV time so we could do family movie night and not go over Ben's screentime limits (1 hour/weekday, 2 hours/weekend day). Buying special foods to accommodate the egg-free, dairy-free, gluten-free, sugar-free, low-soy, low-corn diet (peanut-free too since we found out Ben was allergic two months into the program). Not going out to eat for MONTHS because it just wasn't worth it when we realized how little if anything Ben could have at a restaurant. Cooking. every. night. Because there were very few people in the world that felt able to cook for a child with such a restricted diet (and NO judgment here because I felt the same way before that child was mine). Driving an hour away three days a week to sessions at the Center. Doing exercises with a less-than-cooperative Ben twice a day for at least 30 minutes each time... more if he decided to celebrate Defiance Day (which just happens to be a pretty frequent holiday around here... bummer, right?). There was truly no moment, no aspect of our lives that remained the same. And to be honest, that wasn't all bad.
We became open with friends and family about times when we needed help with school pick-ups, childcare for our daughters, and a night out to just get away from the craziness we signed up for. And we learned to lean on the family of God to pray for us, cry with us, and show up when we needed them the most. Our girls formed sweet friendships with other children they would not have known as well if we hadn't truly needed a home for them while I drove Ben to the Center. They even got to spend more time with their cousins and grandparents due to my inability to do all things for all my children all the time. And there's the rub...
The vast number of hours the program absorbed meant that so many of the wonderful vital things in our family life that we would normally say "yes" to, had to be given "no's." Our children had to be told, "I'm sorry, but I just can't right now." Had to receive whatever was leftover. And there wasn't much. Quiet lunches where we would talk about the funny and the important (and the funny stuff that's important to a preschooler) were replaced by lunches eaten in the car while driving to a session. Naptimes were replaced to sleeping on the go. Playdates became rare and few since we had to get exercises in twice a day, and every other day we had to leave by 11 for Ben's session. Ministries I love got the dregs of my energy, and David dropped a ministry commitment he was passionate about because he could see me falling apart. Moments spent just snuggling a baby girl through her first year of life gave way to frenzied feedings in the Fort Wayne Public Library as we squeezed in a feeding in our only available time window for her to eat. The sacrifices we made this year have been heavy and hard.
With that kind of commitment, we held on to the promise that the returns would be as great as the investment. Maybe even greater. Promises of progress were made to us at the beginning of our time at the BBC, and reports of children making incredible strides were frequently voiced. With that said, I want to say that Ben DID make progress. He did grow stronger, learn new skills, and make strides in the right direction. His attention span and memory are much longer and stronger. His balance and coordination are more controlled. He runs with a better stride and responds to authority with more maturity.
At least for our family, there seemed to be an invisible wall where progress stopped and our efforts felt unrewarded. When the director of our Center pursued answers, she was told again and again by other directors that Ben's infant reflexes had not been satisfied and he just needed to do his exercises consistently and perhaps even 3 times a day. Oh, dear friend, please imagine a mom who hasn't slept through the night in months being told to just squeeze in 30 more minutes of crazy each day. It just wasn't possible. We needed to be human again. To relax. To breathe. So Ben finished the course before him. He did his exercises at home as we had been doing them. He finished the last of his sessions, and I am so proud of this boy who has become disciplined, goal-focused, and more flexible than ever. Ben has tried new things and been successful. He has accomplished all the goals we set for him to achieve before kindergarten. I am so very grateful for that. Was this program worth the investment of time, money, sweat, tears, and sanity? I'm not sure I'll ever really know this side of eternity, but I do know that Ben needed and deserved our focused attention this year, and I'm so glad we poured into him.
Several of you have told me that you've seen ads for the BBC on TV or that you have a friend considering enrollment at a local Center. Here's my take:
The changes to family culture and diet are GOOD, but please make them before you even try the Center. Take a month to remove screens from your child's daily routine. That means your phone, the television, the internet, Minecraft, FB, everything. That 1 hour a day goes in a hurry as children watch screens at the doctor's office, friends' homes, and even checking the score of their favorite baseball teams. After that piece is in place, use a month to eliminate gluten, dairy, sugar, and eggs from your diet and see how your child responds. Then buy a copy of Disconnected Kids by Robert Melillo and do the infant reflex exercises with your child once or twice a day (take Sunday off because... it's Sunday) for a month. Record any changes you see in your child (behavioral, physical, academic, social). Now you're ready. If the above changes have had positive results, give the 3x weekly sessions at the Center a try!
When our family did all of the above in a three week period with a 5 month old and a 2 year old at home, it was just too much. Neither my husband nor I remember the diet, exercise, and lifestyle changes that the program requires being thoroughly explained to us before we made the leap. Not wanting Ben to miss out on an ounce of success, we complied with the program but found ourselves with far more work than we could possibly complete while also raising and loving our other three children (and even really loving Ben beyond giving him the benefits of this program). We've been parenting from a position of exhaustion and the hearts of our children have definitely been affected. I have lost my temper more times in this last year than I can remember in. my. life. It's been humbling to see my limits, and my opportunities to ask the forgiveness of my children have been daily.
Today is a pretty special day in our home. It marks Ben's third day in kindergarten (not at home!), and he loves it. While we still limit screen time for our whole family, the vice grip has loosened. Yes, he's still dairy, egg, and peanut free; but gluten (Oh, glorious GLUTEN!!) has come back into our lives and we've noticed no detrimental effects in Ben. The exercise notebook that we so faithfully used twice a day hasn't been touched all summer. And our visits to Fort Wayne are no more. I calculated 17 hours of hands-on work that the Brain Balance Program added to my weekly schedule so removing it has gifted me with AN ENTIRE DAY to invest in all four of my children with their unique passions and needs. And sometimes, I even get to make myself a cuppa and just sit with a book for 30 minutes. Be still, my heart.
I've typed this post in multiple sittings because (believe it or not) I still don't get enough time in one sitting to write uninterrupted and have my writing make sense. Even as I re-read these paragraphs, the flow isn't what I want it to be, but I've needed to answer the questions and give you an update on our family. If you have more specific questions, I'd be happy to answer them via email or I'd even share my French press of coffee with you if you'd like to talk face-to-face.
And in case I haven't thanked you for your prayers and support, THANK YOU! From the bottom of my heart, thank you! For the recipes, the meals, cards, and the prayers... I will never be able to tell you how needed your encouragement was to this momma who so frequently felt like I was in way over my head. Thank you for loving us well, friends. We know we haven't taken this leap alone.
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Wednesday, August 17, 2016
Thursday, May 5, 2016
What to say...
Dear ones,
It's hard to know what to write at this moment. Sometimes silence seems safer. Sometimes silence happens because there is just no time to form the words. In my case, it's a mixture of both. It wasn't until I chatted with a friend a couple nights ago that I realized that I haven't even kept my prayer warriors up-to-date on the new challenges we've been experiencing. Communication like this is a commitment I just have not been able to squeeze in, a fact that I regret and hope I can fix in the forty minutes I have right now.
For the past two months, we've been struggling as a family as we watch Ben regress physically and continue to struggle with many of the issues that led us to pursue the Brain Balance Center. As chief cook of all his crazy food and head chauffeur of our trips to the Center in Fort Wayne, it's been hard to keep motivation for all the facets of this program as we have seen so little progress since our initial couple of months. For those familiar with the program, let me just share that we have been very faithful to the food, environment, and exercise components that we are responsible for. But at this time, we are struggling with the meager returns for what has been a monumental investment of time, money, and sanity for our family.
With this conflict in my heart, I met with the director of the Center two weeks ago for Ben's third quarter review. She confirmed everything that we'd been feeling. Ben hadn't had the results that they were accustomed to seeing at the BBC. When she consulted with headquarters concerning Ben's case, they suggested that we probably had not been following the at-home components of the program. When she assured them that this was NOT true, they were baffled as well and suggested a few adaptations.
First of these changes being an adjustment in the focus of Ben's sessions. Normally each hour-long session is half sensory exercises and half cognitive skills. Since Ben's cognitive skills are off-the-charts, his time at the BBC will be adjust to 45 minutes of sensory and 15 minutes of cognitive work.
Second, we will relax a bit at home. Instead of calling Ben in from the great outdoors to do exercises twice a day, we're allowing him to be outside, play baseball, swing, run, and just be a kid in the afternoons. We'll commit to doing exercises at least once a day on nice days (and might get to it twice on rainy days), but our entire family just needs to take a step back from 60 minutes of daily torture... I mean, exercises with Ben. We can definitely stay positive through 30 minutes though.
Third (and HUGE for this momma), we'll be introducing gluten back into Ben's diet. So far Ben has had gluten for over a week and has been doing fine with it. We haven't seen a significant change in behavior, sleep, or attitude; however, I am a much more sane person since I'm not juggling one more ingredient to avoid.
Fourth, and this is where I started to cry in the meeting, Brain Balance is offering us another month of sessions (free of charge) to give Ben the opportunity to finish more of his goals. While this may seem like a great thing (and it IS a kind offer), I wept from exhaustion at the thought of yet another month being taken over with trips back and forth to Fort Wayne. At this point though, I'm already feeling better about moving forward with June since the cutback in exercises and diet restrictions has lifted HUGE burdens off of my shoulders.
We'll finish what they are offering us and will give it our best, but our best at this point is a reduced version of what we started with. We are a far less energetic version of what we were at the beginning of this adventure, and for the emotional health of our family, we just can't keep up the same pace any more. It's taken over 6 months for us to finish 62 sessions (with 10 more to go this month), and I just need to take a breath of fresh air, have FUN with my kids, and eat a cookie... a delicious, gluten-filled cookie.
I'm intentionally looking for ways to redeem our trips to Fort Wayne in June, including frequent trips to the zoo and parks in the morning before our sessions in the afternoon and picnics in the park rather than our worn-out tradition of stuffing food in our faces as we drive the hour to the Center. Also, we're taking a two-week break at the beginning of June to allow the three oldest to enjoy swim lessons.
If you're one of the precious ones that has been burdened to pray for us, I thank you from the bottom of my heart and please keep praying for strength and grace to flow in our home. If you're one of the dear ones who has learned to cook a GF, DF, EF meal for our family, you have blessed my socks off! And if you're one of the many people who have handed me a Starbucks card with a smile and a hug, you have probably saved our lives as we drive home from Fort Wayne during what is normally naptime. I swiped my very last Starbucks card yesterday. Miraculously, when one runs out, another one appears from an unexpected source. If that isn't a miracle of loaves and fishes proportions, I don't know what is!!!!
We are STILL praying that he will have a breakthrough in his last two months, but we know that regardless of outcomes, we have learned to walk with our Savior in a new and desperate way. Thank you for showing His love and for holding us up in this journey. You are loved and appreciated! Gotta run...
It's hard to know what to write at this moment. Sometimes silence seems safer. Sometimes silence happens because there is just no time to form the words. In my case, it's a mixture of both. It wasn't until I chatted with a friend a couple nights ago that I realized that I haven't even kept my prayer warriors up-to-date on the new challenges we've been experiencing. Communication like this is a commitment I just have not been able to squeeze in, a fact that I regret and hope I can fix in the forty minutes I have right now.
For the past two months, we've been struggling as a family as we watch Ben regress physically and continue to struggle with many of the issues that led us to pursue the Brain Balance Center. As chief cook of all his crazy food and head chauffeur of our trips to the Center in Fort Wayne, it's been hard to keep motivation for all the facets of this program as we have seen so little progress since our initial couple of months. For those familiar with the program, let me just share that we have been very faithful to the food, environment, and exercise components that we are responsible for. But at this time, we are struggling with the meager returns for what has been a monumental investment of time, money, and sanity for our family.
With this conflict in my heart, I met with the director of the Center two weeks ago for Ben's third quarter review. She confirmed everything that we'd been feeling. Ben hadn't had the results that they were accustomed to seeing at the BBC. When she consulted with headquarters concerning Ben's case, they suggested that we probably had not been following the at-home components of the program. When she assured them that this was NOT true, they were baffled as well and suggested a few adaptations.
First of these changes being an adjustment in the focus of Ben's sessions. Normally each hour-long session is half sensory exercises and half cognitive skills. Since Ben's cognitive skills are off-the-charts, his time at the BBC will be adjust to 45 minutes of sensory and 15 minutes of cognitive work.
Second, we will relax a bit at home. Instead of calling Ben in from the great outdoors to do exercises twice a day, we're allowing him to be outside, play baseball, swing, run, and just be a kid in the afternoons. We'll commit to doing exercises at least once a day on nice days (and might get to it twice on rainy days), but our entire family just needs to take a step back from 60 minutes of daily torture... I mean, exercises with Ben. We can definitely stay positive through 30 minutes though.
Third (and HUGE for this momma), we'll be introducing gluten back into Ben's diet. So far Ben has had gluten for over a week and has been doing fine with it. We haven't seen a significant change in behavior, sleep, or attitude; however, I am a much more sane person since I'm not juggling one more ingredient to avoid.
Fourth, and this is where I started to cry in the meeting, Brain Balance is offering us another month of sessions (free of charge) to give Ben the opportunity to finish more of his goals. While this may seem like a great thing (and it IS a kind offer), I wept from exhaustion at the thought of yet another month being taken over with trips back and forth to Fort Wayne. At this point though, I'm already feeling better about moving forward with June since the cutback in exercises and diet restrictions has lifted HUGE burdens off of my shoulders.
We'll finish what they are offering us and will give it our best, but our best at this point is a reduced version of what we started with. We are a far less energetic version of what we were at the beginning of this adventure, and for the emotional health of our family, we just can't keep up the same pace any more. It's taken over 6 months for us to finish 62 sessions (with 10 more to go this month), and I just need to take a breath of fresh air, have FUN with my kids, and eat a cookie... a delicious, gluten-filled cookie.
I'm intentionally looking for ways to redeem our trips to Fort Wayne in June, including frequent trips to the zoo and parks in the morning before our sessions in the afternoon and picnics in the park rather than our worn-out tradition of stuffing food in our faces as we drive the hour to the Center. Also, we're taking a two-week break at the beginning of June to allow the three oldest to enjoy swim lessons.
If you're one of the precious ones that has been burdened to pray for us, I thank you from the bottom of my heart and please keep praying for strength and grace to flow in our home. If you're one of the dear ones who has learned to cook a GF, DF, EF meal for our family, you have blessed my socks off! And if you're one of the many people who have handed me a Starbucks card with a smile and a hug, you have probably saved our lives as we drive home from Fort Wayne during what is normally naptime. I swiped my very last Starbucks card yesterday. Miraculously, when one runs out, another one appears from an unexpected source. If that isn't a miracle of loaves and fishes proportions, I don't know what is!!!!
We are STILL praying that he will have a breakthrough in his last two months, but we know that regardless of outcomes, we have learned to walk with our Savior in a new and desperate way. Thank you for showing His love and for holding us up in this journey. You are loved and appreciated! Gotta run...
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