Thursday, April 20, 2017
We’ve had some interesting changes around here lately. I took Ben and Jonah to see a “Lyme Literate Doctor” a few weeks ago. He agreed with me that there is much more going on with all four kiddos than what meet the eye. We spent several hours talking, discussing, and brainstorming about what is going on with the kids and how to help them. I LOVE this doctor. Every single thing that came out of his mouth resonated with me. He talked about all kinds of things I’ve learned about. I kept thinking, “Thank goodness I’ve done as much research as I have, because this is completely overwhelming to me even knowing all that I do! I can’t imagine having this be my first experience with this kind of doctor!” I guess it is a blessing that I have been on this path for so long. It felt like a miracle to finally find a doctor who wants to walk with me on this path!
This doctor, I’m tellin’ ya. So brilliant. He said the boys have yeast overgrowth- a common problem when you have an immune system in overdrive and things going haywire in your body. You have good bacteria and bad bacteria in your gut, and your immune system functions primarily in your gut. When you have too much bad bacteria, this can lead to too much yeast in your body. Too much yeast can cause a zillion problems. Things from brain fog to Irritable Bowel Syndrome to trouble with your bladder. Hello, have you met my four children?? They are the poster kids for yeast overgrowth!! The doctor had me look at the boys’ tongues—they had a white coating on their tongues from the yeast growing out of their intestines up their esophagus’ and into their mouths. Ew! So the first thing the doctor did was to begin to address this yeast issue.
The doctor said the kids definitely have symptoms of tick-borne illnesses. This was passed to them while I was pregnant with them. My tick-borne illnesses most likely caused my babies to be born prematurely. Poor little things. That is something that positively eats me up inside. I have to redirect my thoughts each time this pops in my head, and purposely think about all the things we’re doing to help the kids regain health and happiness. That’s all we can do now. The doctor said he has about 15 families in his practice who are like us- they all have Lyme and co-infections. Pretty interesting. The doctor has found that many children who are diagnosed with things like Autism, tic disorders like Tourette Syndrome, ADHD, PANDAS, and other neurological disorders often have Lyme and yeast overgrowth as well. When families address the underlying problems of yeast and tick-borne illnesses, most often other symptoms improve as well. Fascinating.
When the doctor examined the boys, he asked me why they had red marks on their arms and lower backs. I said I always thought they were stretch marks from being on a medication for that caused them to gain a lot of weight. The doctor told us those are not stretch marks. They are a rash from Bartonella- another tick-borne illness. I. Was. Floored. I could not BELIEVE it. I Googled this rash when we got home, and sure enough, it could be pictures of the boys on those sites about Bartonella. I was shocked. So crazy. To see physical proof of this illness on your child's skin...insane.
The doctor started the kids on a protocol to slowly address their yeast and tick-borne illnesses. The kids have to be gluten free, soy free and dairy free (this one is proving to be very tough, but we just limit what we can and do our best). They have to limit their carbohydrate intake because carbs feed yeast. The treatment is extremely slow and gradual, because this healing process takes time. You can’t just pop some pills for two weeks and feel completely better. It’s going to be a marathon, not a sprint. I have a calendar for each child with their treatment plan. Each child may respond differently to the treatment, so I have to take daily notes or I’ll forget who is doing what. It’s a little intense and complicated, but I’ve been organizing meds for all of us for so many years, it just takes a little adjustment to add in this new protocol. The whole family is also on a bunch of supplements that the doctor recommended based on testing he did with the kids.
Ben and Jonah did further testing- 24 tubes of blood, saliva and urine tests. We will have final results in a couple months. The boys were NOT fans of this testing. For one thing, they can’t spit. I don’t know what it is, maybe it’s the fact that they’re tongue-tied, so they can’t get their tongue to cooperate with what it needs to do to spit. They were supposed to spit in a tube four times during one day. The saliva had to reach a certain line on the tube, and the tubes were little. We’ve done other spit tests and the tubes were huge, but these were little. Still, you wouldn’t beLIEVE the drama we went through that day about those darn spit tubes. OMG. You’d think I was forcing them to cough up and donate a kidney. The tears, the anger, the fussing…my lord. Ultimately, they couldn’t fill the tubes with enough saliva to reach the lines, so I’m not sure if we’ll be able to get accurate results from that test or not. I wrote a little sticky note to the lab, explaining that due to their special needs, the boys did the best they could with the spitting and that was all we could provide. Drama, people, drama.
I was so proud of the boys though, because they have been such troopers through all of this. The doctor alone is almost 2 hours away. So to miss school, drive there, spend about 5 hours with the doctor and nurses, drive the 2 hours home, do all these tests, take all these pills…it’s a lot for anyone, let alone a kid. I keep explaining everything to them so they understand why we’re doing what we’re doing. And they’re so on board with it all! It makes sense to them, they agree with the treatment plan, and best best best of all, they’re already seeing results. It’s going to blow your mind, but it’s really happening.
I’m not sure if you understand what a HUGE, GINORMOUS deal this is for me. I have been searching for help and answers for 14 years for my boys. Every single path I’ve gone down with them has led to something valuable, but not the missing piece of the puzzle. More times than I can count, I have been literally laughed at by doctors. They literally chuckle in my face and tell me my hypothesis is nuts. How is that a healing, compassionate way to treat a child’s mother? I've realized over and over again that how a person reacts to me is more about them and less about me. People ask me why those doctors aren’t in my life anymore, and that’s why. If you can’t at least respect me enough to explore my questions with me, see ya. I have no time, patience or energy for you anymore. I’m not willing to let my children suffer any longer because society thinks I’m nuts because I ask tough questions and think outside the box. Honestly, I’ve never fit into that box, so I’ve learned to embrace that aspect of myself. If others can’t, that’s ok. But then I can’t spend any more energy on those people.
So here’s the deal. We’ve gone totally gluten free. The kids are on board. Alex is doing it too. We’re being triumphant over gluten!! Woohoo! I told the Lyme doctor that I’ve had the family go gluten free twice before, and we have never seen a difference in the kids’ behavior or symptoms. After hearing the doctor explain why, this is how I told Alex about it: a body is like a bicycle wheel. It has spokes. Each spoke represents an aspect of your health. So one spoke is how well you sleep. One spoke is your diet. One is your immune system, etc. All these spokes contribute to the overall well-being of the wheel. Say the spokes on the wheel are all bent and broken. The wheel isn’t going to work efficiently. If you have the genes for gluten sensitivity, this is one spoke that's bent out of shape. If you have Lyme, that’s another spoke that's busted. If you don’t sleep well, that spoke is bent too. Your “wheel” (your body) is going to be all wobbly and won’t function at an optimal level. Say you stop eating gluten, but that’s the only spoke you fix on your dysfunctional wheel. The whole wheel isn’t going to work any better, because it still struggles with not sleeping well, having inattention and hyperactivity, not having enough of the right neurotransmitters to handle life’s stressors efficiently, etc. In the past, we tried to fix one aspect of the big broken wheel by going gluten free, but there are so many other things wrong with the kids’ bodies that just fixing one issue didn’t make a noticeable difference. So now we’re fixing the WHOLE wheel at once. We’re taking a multi-step, multi-faceted approach to healing our bodies.
The only one who is grumpy about this diet change is Aidan. He’s in a bit of a snit about it. He and Ella are super picky about food, so it’s going to take some time before we find things that fit into our diet that they enjoy eating. But we’re committed to it. No if’s, and’s or but’s about it. Not even a “How about..” This is Aidan’s favorite bargaining tool: “Can we have a ‘how about’? How about I eat a huge gluten-filled bun with my hamburger?” Um, no sir. Now we have lettuce wraps with our burgers, because gluten free buns are usually terrible. Surprisingly, some things that I thought would be a big fight are pretty easy. On Mondays, we have a crazy after school schedule, and sometimes Ella and Aidan get to eat Portillo’s for dinner. Last week, I’d prepped them- no gluten! So we have to do lettuce wraps if you want a burger. It took a little convincing, but Aidan ended up loving his lettuce-wrapped burger. And Ella devoured her lettuce-wrapped hot dog. (Gross, if you ask me, but whatever.)
So here’s the best part. Especially for Jonah, there have been crazy improvements in his health. The second day after starting the treatment for yeast, Jonah started changing. He became calmer. He became happier. His brain seems clearer. His bladder issues have gotten better. Constipation took a while to improve, but it’s on the mend also. He is seriously like a different kid. TWICE in the past month, he has said these words to me: “I’m happy.” Ok, people, I haven’t heard my boy say that in probably nine years. Nine years. In the past month, he’s said it twice. This is insanely crazily huge for our family. Can you imagine? Suddenly coming out of a fog, feeling happy once in a while, feeling calmer in your own skin, feeling…just ok with life more often? After an eternity of struggle. It’s blowing my mind to witness this change.
Jonah even went through a self-induced makeover. For many months, he has let his hair grow long. He always looks adorable, but a person’s hair says a lot about what’s going on inside of them emotionally. Jonah’s poor hair looked a little sad. It was all heavy and covered his eyes and ears. Like he wanted to hide a bit. I always try to encourage the kids to be who they want to be, look the way they want to look. But I’ll be honest, Jonah’s hair bugged me.
A week after we started our treatment protocol, Jonah started talking about a haircut. He found a picture of a cut he liked, and I took him to get it done. I thought he’d change his mind, but I didn’t push. That boy walked out of the hair salon a new man. He has this haircut now that is so CUTE! It’s short and styled and off his face. He looks like a model. I know I’m completely biased, but seriously, model material here. Then he asked to buy some new clothes! Then he wanted a new, cool jacket! THEN, I know this will embarrass him but that’s my job as his Mama, he needed a new style of UNDERWEAR!!! Come on! Can you believe this??
For so long, he’s been shlumping through life. Unhappy, uncomfortable, overwhelmed, stressed out. We start treatment, change his diet, get him on supplements, and boom! He’s a new person, inside and out. Not once since we started treatment has he laid on the floor, screaming and crying for more than an hour because he didn’t know how to calm down. I know I cannot express to you the enormity of what this means to me, but let me tell you, this is life- changing stuff. And I have a front row seat to watch this incredible boy blossom. You cannot tell me this treatment didn’t have anything to do with his blooming. Even Jonah’s teachers have noticed changes in him! His math teachers told me yesterday she can’t believe the difference in him—he hardly ever visits the bathroom during class now, and when he does he isn’t gone nearly as long as he used to be. His choir teacher keeps commenting on Jonah’s haircut in class, which makes Jonah feel so special and proud. The teacher said last week, “So class, remember how when we started this year, you were all so shy and quiet? And then Jonah went and got a HAIRCUT and looks like a JUNIOR!” And, “Remember when Jonah first joined our choir this year? He just sat in the corner and kept to himself and was so quiet…and now listen to him!! He SINGS!! You should all be singing like JONAH!” Ben and Jonah are so supported at school. It’s an incredible shift for them.
Now, don’t get me wrong, we still have challenges. Many, many challenges. But who cares? When you add up the incredible positive changes that are happening for this boy, I don't care how many daily challenges we face as long as we’re getting some good in there too.
The other kids are still struggling a bit more than Jonah. Mood issues, anger, irritability…all still hanging around. But the Lyme doctor said there will be times when symptoms flare and get worse. This is expected. We just have to hang in there, find ways to get through the tough spots, and keep loving on those kiddos as best we can. I keep communicating with the kids and tuning in to them, asking them how they feel and trying to support them where I can. They need to be active participants in this healing process. It’s hard to get Aidan and Ella to take the supplement drops they need to take every day. It’s difficult to get Ella to do her two nose sprays every day that her ENT says she MUST do to try to avoid surgery on her ears. It was a challenge to get all four kids through a round of antibiotics for the strep and sinus and ear infections they just got over. It’s tough. We have ongoing, daily drama about all of these things. Along with all the normal drama about homework and showers and bedtimes…but if there is one single ounce of hope that inside those little bodies there is some healing going on, it’s all worth it. I’ll try to stay patient every day and muscle through the drama if I know that my children will be healthier and happier someday because of what we’re doing right now.
Just listen to your Mama Hearts. Never give up if you feel your questions haven’t been adequately answered. Never give in to people who laugh at you and say you’re crazy because you dare question the status quo. Boxes were made to be busted out of. Don’t let anyone try to stuff you back in the box that they feel most comfortable with you in. If you think you need to keep searching for answers, about anything- your own health, your children’s health, anything- just keep digging. You’ll find answers if you keep looking. And then you’ll get to wake up to a new day and watch your children bloom before your very eyes. And you’ll know every excruciating struggle you’ve been through has brought you to this point, and it was all worth it. Because your children are starting to bloom.
Thursday, April 6, 2017
Once in a while, I know the voice of God. It’s not that I hear it. I just know it. Like it has been written on the seat of my soul, on the walls of my heart.
I know, that sounds insane. But before you judge, or criticize, or think I’m loony, just hear me out.
A couple weeks ago, I finally got our school to give my 5th grader an Individualized Education Plan (IEP). This is extremely significant in the life of our family. Our four kids all have special needs, but they are the kind of needs that are “invisible.” If people looked at a snapshot of our family, you would see four adorable, blond, smiling faces, all who look “normal.” But they all have significant challenges, and their appearances are deceiving.
My kiddos struggle. A lot. With so many things that come easily and naturally to other children their ages. My children have a host of diagnoses, including Tourette Syndrome, ADHD, Sensory Processing Disorder, mood disorders, anxiety, and learning disabilities. Even though the kids have these official diagnoses, it is often difficult for me to obtain services for them because they look “normal.” Year after year, our school has said the kids do not need additional services at school because they are functioning well enough, and that their problems must be “home” issues, and parenting issues.
Year after year, I’ve received emails and calls from my children’s teachers, asking for help with my kids. What have we tried at home that is successful? What ideas do I have to help the kids at school? What should the teacher do? I’ve done my best to help guide and educate the teachers about my kids. I’ve racked my brain, trying to come up with more ways to help my kids succeed, both at home and school. Life shouldn’t be this hard for people who are so little.
Despite my best efforts, my kids still struggled at school. Teachers would contact me, at their wits’ end, not knowing how to proceed with my kids. So I would request a meeting with the team at school. We would get to the meeting, and I would express my concerns about my children’s growing troubles. The team would tell me that my child was fine. My child was acting fine, learning fine, doing fine. Implying that I was somehow overreacting, somehow wrong. That my child’s troubles were only at home. That despite the teachers repeatedly contacting me about their concerns, my child was fine and did not need additional services at school.
This message that I was somehow to blame for my children’s disabilities was a tough pill to swallow. Since the day each of my four preemies was born, I have been determined to help them be as happy and healthy as possible. I have spent zillions of hours with the kids at every kind of therapy you can imagine, listening and learning from our amazing therapists. I have been to countless doctors, begging for answers, begging for help. I have had to convince my husband that treatments not covered by insurance are vital to our children’s well-being, and we must find a way to pay for them out of pocket. I have done therapy homework with the kids, day after day. I have had to make the impossible decision about whether to use medication to help my children. I have driven them all over tarnation, looking for answers, searching for help. As all of our friends pile their kids into minivans to go to soccer or basketball, I load my littles in the van to go to more therapies, more doctors.
Don’t get me wrong, we do find time for fun and relaxation. But having a family with special needs is darn hard work. You’re on call ALL. THE. TIME. There is never ever a millisecond where you can disengage from the fact that your kid might need you. Even when they are at school, or with grandparents, or the once-in-a-while-miraculous-babysitter, you never know when you’ll get the call that your kid needs you. That your kid can’t handle life at that moment, and all they need is you. And you drop everything, day or night, and run to them. Because that’s your sole purpose in life- to make sure your babies live well, are happy, are loved and healthy.
When your entire existence revolves around guiding your children who have special needs through life, to have people tell you that your kids’ problems are because of you…that’s soul-shattering. You know it’s not true, but the seed of doubt has been planted. When people tell you that your kids just need a spanking, they just need tougher discipline, you worry that maybe they’re right. Maybe if you had been tougher on them all along, the kids wouldn’t have so many struggles now. You know that’s not true, but you worry just the same. When people tell you you’re crazy for driving an hour to see a special eye doctor and spending a fortune on glasses to help with visual processing disorder, a tiny voice in your head wonders if they’re right. You wonder if all the money you’ve spent on alternative interventions was a waste. You know it’s not true, but you doubt yourself, just a little. When your school says your children's problems are because of their home life, you wonder what you could be doing differently. You wonder why all your exhaustive efforts to do any and everything to help your little darlings isn’t working. All the reward charts, and therapy homework, and therapy visits, and hours in the car driving to appointments, and special glasses, and medication, and massages, and supplements, and…what if everyone is right, and the only problem your child has is you?
What if it’s all your fault?
Since my 5th grade boy was in Kindergarten, teachers have been asking me for help with him. He’s such a sweet boy, he’s got such a huge heart, he makes friends every single place we go, he’s kind and compassionate and sensitive. But he wiggles, he doesn’t pay attention, he can’t get organized, he doesn’t understand math, on and on goes the list of my boy’s alleged shortcomings. For six years, I’ve tried to work with my son’s teachers to help them help him. Each year, I would ask for a meeting when the teacher said he/she was at her wit’s end and didn’t know what else to do for my boy. Each year, I would sit at a meeting with up to fifteen school staff, who would tell me that my son didn’t qualify for more services than his 504 Plan would allow, and that he was fine.
My 5th grade boy is my third child. My twins, who are now freshmen in high school, have similar diagnoses and issues in school as my 5th grader. I had gone through the same run-around with my twins as they went through elementary and middle school. It wasn’t until we spent our own money for a private evaluation, hired a behavior consultant fluent in the diagnoses of Tourette Syndrome and anxiety, consulted a lawyer, and hired an advocate that I was able to educate the school well enough on my children’s needs that they agreed my kids needed more support.
So with my 5th grader, this ain’t my first rodeo. Been here, done this. Twice before. Imagine how many times I’ve been given the message that I’m not a good enough parent. From other people in my life, but also from our school. Imagine the determination and courage it takes to fight that message when it comes at you over and over for so many years. Imagine how hard it is to hold on to your strength and know that you are doing everything under the sun to help your children. Imagine how hard it is to fight that little voice of doubt that the world has planted, saying it’s my fault my children struggle.
I went to my 5th grader’s IEP meeting a couple weeks ago. Once again, I sat around a table with 10 school team members. Once again, I felt outnumbered. Once again, I worried my son wouldn’t qualify for the help he so desperately needs at school. Once again, I worried I might dissolve in a puddle of tears in front of all these people.
The team went through my son’s evaluations. They talked about test scores, performance in the classroom, his deficits. The doctor we hired to do a private evaluation talked about her insight into my son. Finally, after an intense hour, the team said my son qualifies for an IEP. After this announcement, there was silence as everyone looked down at their notes and computers. I waved my fist in the air and joyfully announced, “Hurray!”
My response may have been a little silly, but this jubilant moment that I’ve been fighting so hard for, for six years, deserved some recognition. Finally, my boy will get the help he’s been needing. Finally, he will have his needs better met at school. I truly, maybe naively, believe that our school does the best it can for its students. I admire and respect every teacher my children have had, and I know they work hard every day to help my kids. It’s just difficult for the world to know what to do when your kiddos have “invisible” special needs. But just because the needs are invisible, doesn’t mean they’re nonexistent.
I left my son’s IEP meeting and drove around, frantically running errands before the bus delivered my darlings home from school. I pondered the meeting. I reran the test scores in my head. I thought about the comments teachers and the social worker had made. I thought about what the director of Special Ed had said about what label my son qualified under for his IEP. I silently whispered a blessing of thanks to each member of the team who is helping my boy. I was grateful to our advocate for her patient help with all of my children. I was grateful to the doctor who spoke to the team about my son’s disabilities. I was grateful to all of them.
That’s when it happened, when I knew the voice of God. You can call it whatever you like- intuition, the voice of my soul, it doesn’t matter. It was like someone wrote on the inside of my heart: “YOU did this. YOU did this. It is because of YOU that your little boy got help today. YOU did this.”
I am proud to say this had been one IEP meeting where I had held it together and had not become a sobbing, hysterical mess. But when that message bamboozled its way into my consciousness, I lost it. I burst into tears. I sat in my car and wept. I wept with gratitude for that message, I cried with the relief that comes with knowing- truly believing- you have made a difference in your child’s life. For one moment, I accepted the foreign feeling of being proud of something I have done for my kids.
I realized I am quick to notice other people’s contributions to my children’s lives, but I rarely truly believe that I am doing a good job at being their Mama. I am so thankful for each person who helps my children. I am in awe of our therapists and doctors and teachers. I think they do amazing work with our kids, and we wouldn’t be in the place we are if it weren’t for all those people. But I never take time to pat myself on the back and believe that my children are as happy and healthy as they are in large part to me. I try to find the good in others, to make sure they know how much I love and appreciate them, but I don’t do the same for myself. So to have the knowledge nestled in my soul that the reason my son got an IEP was because I kept pushing, year after year, never giving up no matter how many times I had to sit in a lonely, intimidating, overwhelming meeting, no matter how many times I had to be subtly blamed for my child’s problems, no matter how many people think I’m crazy…the message that this success was because of me was profound.
As parents of kids with special needs, we are often quick to thank the gifted people who help our children. It is much more difficult to realize that we need to take credit too. It’s very hard to sit in a quiet moment and say to yourself, “Great job! You are rocking this parenting thing!” and believe it. We need to remember our children wouldn’t have access to those gifted therapists and doctors if it weren’t for us. Our children wouldn’t know love and acceptance if it weren’t for us. Am I a perfect parent? Absolutely not. But am I doing the best I can, all the time, no matter what the day brings us? Absolutely. We were given special children, and we need to make sure we give ourselves time to acknowledge and appreciate the work we tirelessly, endlessly, lovingly do to help our children be happy and healthy.
Take a moment. Take credit. You’re rockin’ this parenting thing! It’s because of YOU that your child is doing so well today.