I always felt destined that I would have a child with special needs. I felt that because of my love for special needs children it would be completely natural for me to love and raise such a unique child. This was not a fantasy…I never imagined it would be easy or that I could do it alone, but I felt by the grace of God I could and would handle it. I knew from an early age I had a special talent or gift in working with children with special needs. The first thing I told others I wanted to be when I grew up was a special education teacher. I would spend my recess playing with Lacey and Albert, whom both had Down’s Syndrome, helping them learn to see-saw (I know, I am dating myself!) or play ball. From an early age I had the gift of patience. And even then I remember after spending time with Lacey and Albert, I felt full, renewed, satisfied that I had done something that day that mattered. As I got older my dream of becoming a special education teacher changed to wanting to become a speech-language pathologist, which is what I ended up getting my master’s degree in from WVU (Go Mountaineers!). This profession has fit me perfectly. I get to play with children every day that I work all while helping them achieve one of the greatest gifts we too often take for granted, communication.
So after graduating, getting my first job and getting married it was soon time to start discussing children with my husband. We started our family and after 3 healthy children were born we decided we were complete. Despite them all being healthy, I still had this urge that I was meant to mother a special needs child.
While my second child, Big O (as we lovingly call him, he was 9lbs. 4 oz at birth!), has never officially been diagnosed with a medical condition, he has taught me A LOT about unique challenges in his short 5 years of existence. All the things I did right (and had no guilt over) in raising his older sister were all WRONG with him. He didn’t sleep as well as she did, he nursed ALL the time, he didn’t respond to traditional discipline methods and he wasn’t (and still isn’t) scared of my “angry” voice. While he stole hearts with his unique look and deep toddler voice, he had a tendency toward ornery-ness and everyone described him as “all boy”. The day he turned two, something changed in him. He upped his game. But I just regarded it as the terrible two’s and didn’t give his acting out much more thought than that. Then he turned 3…and he upped his game even more. But I just attributed his behavior fluctuations to the tumultuous threes, and blamed the fact that he was about to become a middle child and that we had just moved into a new house, neighborhood and state. Then he turned 4. My third child had just been born a couple of months before so his world had been turned upside down, I was hormonal and definitely more impatient than normal and he was just (very) strong willed. Needless to say, over the past year or so we (my husband and I) have begun figuring out the puzzle of our Big O.
Allow me to elaborate:
Owen is strong willed, he was described by his preschool teacher (with 15+ years experience) as the strongest willed child she had ever worked with…thanks, I guess. He had his own ideas and there was no persuading, bribing or convincing him otherwise. I found nothing that motivated him consistently, nor did I find a discipline method/punishment that worked consistently. I searched, discussed, cried, prayed and felt ashamed that I, being a person who works with young children daily, couldn’t figure out my own child. After my third child was born I hit a breaking point. I couldn’t do it anymore. I wasn’t myself. I had become so impatient with my children and husband, some mornings I didn’t want to get out of bed for fear it would be another “bad” day for Owen/me/us. He argued with me over EVERYTHING…what to eat for breakfast, what to wear, whether or not he would brush his teeth, leaving for preschool was a fight, drop off at preschool was sometimes difficult, and the list goes on. At its peak, he began to have small outbursts where he would get upset over something that made no sense to me and there seemed to be no trigger…I couldn’t figure it out.
I started where most parents turn for help – Books. I read books on strong willed children and talked to friends about discipline methods they recommended. The Strong Willed Child, You Can’t Make Me But I Can Be Persuaded, 1-2-3 Magic (for the 3rd time!) all resonated in me. I gathered different tips from all of their talented authors but none “fixed” our situation completely.
God bless my BFF and business partner, Nicole and my mother. They spent hours on the phone with me counseling, encouraging and listening. Finally during a phone conversation with Nicole on a weekday morning after an awful weekend of trying soccer with Owen, she helped me realize I had to reach out for help. What was going on was more than I could figure out on my own. My ego was bruised, but I felt relief at the same time. It was time to surrender. Sometimes you just have to know when to fold ‘em.
We started with our pediatrician at O’s yearly well visit. After O left the room she and I had a lengthy discussion about what was going on with Owen’s behavior. She was wonderful, attentive and concerned. She reassured me by saying she felt it was mostly a matter of maturation and that she didn’t believe any diet out there would help transform his behavior. Whew…I was off the hook with the whole diet thing. I had heard of a diet that could possibly help kids with symptoms similar to O’s but I was afraid to try it. It would be a lot of work and I mean, seriously, if my pediatrician doesn’t believe in it, then really, it must not be worth even a try…or was it?
So I walked away not feeling like that was the end of the story. That wasn’t enough for me. So I decided it was time to reach out to the wonderful women I am blessed to work with every day in my job as an early interventionist. I contacted Leslie, one of the most awesome and knowledgeable Occupational Therapists I have ever known. She recommended a brushing program to address O’s sensory needs.
Next, I spoke to Chrissy, the most patient, wise and amazing behavior analyst EVER! She sacrificed 4 hours on a Saturday afternoon to discuss our concerns and get to know O. Her suggested behavioral strategies were so simple, yet so profoundly impactful. She educated me on “the beast” that made it hard for O to listen, follow through, and give up control. Understanding how his mind was working helped me to understand why what we were doing wasn’t working and why what she was suggesting would work. I wish she could move in with us!
I knew if we were going to give O (and us) the best chance for positive change, we had to go full throttle. It was a combination of my years working as a therapist and hearing of parents doing the Feingold diet, Leslie’s experience using the diet with her children and Chrissy’s encouragement (You can do anything for 30 days!) that drove us to give Feingold a shot.
Except for the little I knew about the diet through my work, I didn’t really have a good understanding of the Feingold diet. I overheard some moms at the local book fair discussing how red dye made their sons “crazy”. My ears perked up as I eavesdropped on their conversation and the wheels in my head began to turn…could this be something that might help O? Did he really get that much red and yellow food dye anyway? In December 2012 my husband and I began reading food labels and eliminating anything that had red dye #40 and yellow #5. These two food dyes have the worst reputation of the bunch, so it was obvious for us to cut them out first. After a couple of weeks we noticed a change; O was more in tune with us and what was going on in his environment. Hmmmm…this is when we began to wonder if there was something to this.
January started out good with preschool and O’s overall behavior at home. Then about half way through the month things started getting back to his “normal”. All in one month, his teacher asked me to stay so she could speak with me about O’s day, I broke down in front of his teachers, and I lost my cool with O in the car after a not-so-good note came home from school. I couldn’t keep keeping on like this…
When I would speak to O about what “bad” things happened at school or at home during the day he would say to me, “But mom, it’s just so hard for me to be nice” or “It’s just too hard for me to do my work”. And after hearing this a few times I began to believe him. I finally began to realize there was something in him that he couldn’t control. He knew he should resist, he knew right from wrong, but something wouldn’t allow him to do the right thing. Something inside his little mind wouldn’t allow him to give up the control.
So by now it was March. We were still cutting out obvious food dyes and I had just been in contact with Chrissy, my behavior analyst friend who encouraged me to give Feingold a try for at least 30 days. Because if I didn’t, I would always wonder, “What if…”. So nearly kicking and screaming I borrowed the materials from a friend who had done the diet with her boys in the past. And they sat on my office desk for weeks…then one day I picked them up. This turned out to be one of the best moves of my life, and O’s.
My first trip to the grocery store was grueling. Book in hand, Coke (my indulgent beverage of choice!) in cart, and cash, lots of cash in my wallet I made it through the organic aisle and walked out with a cart full of what I hoped were Feingold friendly groceries. The next day I visited Whole Foods…whoa…cha-ching! I have only made two trips there in 8 months. There are certainly a few things I can only get from there, but thankfully my local store can supply most of our weekly essentials and Whole Foods is proving to be only a quarterly necessity. My budget is thankful for that!
After those first trips my head hurt! I had decided that for this to work the whole family had to go on the diet in the beginning, for at least the first 6 weeks (stage 1 of the Feingold Diet). It certainly wouldn’t hurt any of us to eat a little cleaner! So that’s where we started. All in. Feingold followers we were all becoming!
It has been nearly 10 months since we began following Feingold. We will not turn back now. With each passing week the food shopping and planning becomes easier and the change in my son is all I need to know we are doing the right thing. As thankful as I am for the verbal support and encouragement I received in the beginning, I longed for more practical tips, recipes and guidance to get me started. That’s why I wanted to write this blog.
As moms we all belong to each other, I believe. What I know about raising kids I am happy to share with someone who is struggling. And what I don’t know (diet, behavior strategies, sensory help, etc.) I want others to share with me. That was the motivation behind Nicole and I developing 1-2-3 Just Play With Me; a resource that shares with others what we know helps infants and toddlers grow, develop and build bonds with their families. As we have pushed forward promoting our product we have remained mothers at home to our collective 5 children, who daily teach us MORE that we want to share.
I hope this blog encourages all those that can identify with our story. I pray that you too reach out for help, lighten the load on your own shoulders, stop blaming yourself for what you can’t fix and find support in those you call upon. In the weeks to follow I will be posting more from our Feingold journey thus far. If you are on a similar journey, we would love to hear from you. We all belong to each other…we are all in this together!
O enjoying a red Hug Jug pre-Feingold!
To learn more about the Feingold Diet and The Feingold Association of the United States please visit www.feingold.org.