There's nothing quite as ironic as trying to get your middle-schoolers ready to volunteer at Vacation Bible School while they call you every swear word known to man. Gotta love it. While Alex and I run around trying to help the boys not get overwhelmed by having to do all their morning self-care things, they swear their heads off at us. You can't help but feel angry. Disappointed. Frustrated. Did I mention angry?
I read Facebook posts and blogs all the time that talk about this issue with children who have Tourette Syndrome plus other diagnoses. It's very common to have rages, or neurological storms, as they're called sometimes. It's common to be overwhelmed, to swear, to rage, to be irrational and irritable, to over react, to misunderstand, to be rigid, to not transition well, to cry, to hurt others, to throw things, to yell, to scream, to threaten, to be impulsive. But just because it's common with kids who have these diagnoses does not make it any easier to parent them.
Ben and Jonah had to be at church at 8:15, so Alex dropped the sweary boys off on his way to work. I brought Aidan and Ella at 9. When I got to church, Ben and Jonah were both filled with a light that came from inside of them. Their faces were smiling and excited. Their hearts were joyful. They couldn't wait to volunteer with Ella and Aidan's classes, help their brother and sister not be nervous, and praise God while they did it. Had the people at church seen the boys before 8:15 this morning, they would not have recognized them. They were completely different at 9am. They were their true selves. Their true selves are joyful, kind, helpful, generous, fun and funny. I get so frustrated that their disabilities have to live mostly in our house, infecting us like a poison with anger, irritability, irrationality, and conflict. I wish we got to live with the joyful, lit-up 12-year-olds who are at church right now.
There are a few conclusions Alex and I have come to because of recent events. The kids all went to see the doctor who is treating my mold and tick illnesses. They got blood tests to see whether they suffer from the mold toxicity also, and to see if they have the genes that I have that predispose them to Celiac disease. Sure enough, some of the labs are back, and all three boys have the Celiac gene. That means no gluten for anyone here. I told Alex if he wants to cheat, he has to do it away from us. We're a united front here. No gluten. That means life just got a lot more complicated. When we visit family and friends, we still have to eat gluten free. When we have birthday parties…gluten free. Movies…gluten free snacks. School…gluten free home lunches. It's not impossible, it's just complicated. I'm happy to bring our own food to any and everything we go to. Gluten is poisoning our bodies, and I'm not willing to let that happen anymore. If you are someone who is allergic or sensitive to gluten, it can affect your mood, emotions, mental state, physical state…everything. Everything. I've been starting to educate the kids about why we need to eat gluten free, celiac disease, leaky gut syndrome (which I'm sure they all have), etc. I know that especially the older boys need to know the medical science behind this and that it's not just Mom being crazy and taking away all their favorite foods. I've started weaning in gluten free snacks and breads, to show the kids you can still eat like crap if you want to, there are still delicious things to eat, even if you have to eat gluten free.
Ella, of course, is the one taking this most to heart. The other day we were in the car and she asked for McDonald's. I said no, we're going home for dinner. She thought for a minute and then said "Oh YEAH! McDonald's has gluten anyway, so I can't eat it!!" Love that kid.
The preliminary blood tests for all three boys also show that they probably will be diagnosed with Chronic Inflammatory Response Syndrome- or mold toxicity, like me. Doctors don't know anything about CIRS, as far as if it can be passed from mother to child in utero. We'll know more as the results come in. But this would explain a lot of the boys' chronic illness, inflammation, not feeling well, mood problems, etc.
Another thing we've realized over the past couple months is that although Ben and Jonah are getting older, they are not necessarily built for more independence. This has been super tricky lately. Since they are older, they want to have fewer boundaries. They want to have Facebook accounts. They want to ride their bikes down to the gas station to get a snack. They want to stay home alone when Ella has therapy. I've given them some independence, carefully and slowly. When they screw it up, I reign them back in and push in the boundaries. I've seen them screw it all up a lot lately. Their Facebook accounts have been deactivated. They are not allowed to stay home alone anymore unless it's for a very short amount of time and they are all very stable emotionally. I left the three boys alone for one hour last week. When I came home and heard about all the Crazy that had ensued during my absence, I was just flabbergasted. I don't even know how to parent this. I know the tween-to-teen ages are challenging for all parents, but when you throw a disability into the mix, that makes things even more incredibly challenging. I'm seeing that during this phase of their lives, the tween boys in our house are more impulsive than they have ever been before. And since they are older and have a little bit more freedom, there are more serious repercussions and consequences. It's getting harder to keep them safe.
We have also come to terms with the fact that once again, we have to make some modifications in the way our family handles things. Things like travel, visiting relatives, going on outings. The older boys seem even more sensory-sensitive than in past years. They are even more easily overwhelmed by restaurants, people, fairs, arcades, pools, than they used to be. They also are more impulsive. So they have had several instances where they have had meltdowns with people other than Alex and me. Alex and I have realized this can't happen. Other people don't know how, and shouldn't be expected to know how, to handle rages and meltdowns. So Alex or I have to be with the boys whenever they go anywhere. I feel badly for both the boys and other people, because when others ask the boys if they want to do something that typical kids would love to do- like stay for a week at Grandma's house by themselves- the boys know what people want to hear. People want to hear "Yes! I'd love to do that!" So that's what the boys say. But in reality there is no possibility at all ever in a million years that something like that would be successful. The boys don't know how to communicate that when they're on the spot. So then I get to be the bad guy and explain that although the boys' words are saying they would love to go to a movie without me, or go to the fair without me, or go to the zoo without me, or stay somewhere overnight without me, that is not what they actually mean or are capable of. We have to set them up for success, not failure. So Dad or I have to be with them to help them navigate stress, anxiety, and sensory overwhelm. All. The. Time.
After a recent trip to visit family where we stayed a couple days, we decided that from now on we will bring two cars whenever we leave home for an extended period of time. All three boys cannot handle being away from the comfort and routine of home for very long without melting down, or worse, raging. Some of the boys suffer even more than others. After that last visit, Alex and I were talking, because it was clear that some of our children really needed to go home early. But we only had one car and it wasn't an option to pack up the family at 9pm that night and drive several hours home. I said that if our child used a wheelchair, we wouldn't make him go somewhere that was not wheelchair accessible and expect that he could figure out how to navigate the environment. We would protect him and make sure he was able to succeed and thrive in all environments, despite his disability. We have to think of our kids the same way. It's so hard when their disabilities are not physical. It's so easy to have unrealistic expectations and be angry when the kids fail to meet those expectations. But our children just do not have the capacity right now to succeed in an environment away from home. It has nothing to do with anything else other than our children's disabilities. It's not that they are not having fun at Grandma's. It's not that the fair isn't a blast. It's not that they don't like to go to the zoo. It's just that they have disabilities that require some intervention in order to be successful. I think Alex and I both are guilty of expecting that our kids can handle more than they are capable of. And then we suffer the rages that follow.
If we have two cars wherever we go, kids who are unable to handle a situation can easily go home with one parent, and the kids who are being successful can stay with the other parent. Problem solved. It's not a punishment. It's dealing with a situation and handling it the best way for our kids and their disabilities. It's giving them what they need.
We also decided that if any of the kids are in a particularly bad place emotionally, they will not be required to go to family functions. This goes against everything Alex and I were raised with as far as family expectations, but our family is different and we have to change our expectations. Our kids don't try to be bad. They don't try to have meltdowns or rages to get out of things. Rages are different than tantrums. With a tantrum, the child is trying to manipulate the situation to get something he wants. A rage is a total loss of control, with no end result in mind. Sometimes our kids just can't handle the things other kids can.
It's all just so challenging and frustrating and tiring. It's hard to be weird. It's hard to be a family that can't just do what other families find easy and normal. It's hard to have to tell our relatives that we have different rules for our kids than what we were brought up with. It's hard to explain to others that our kids can't eat gluten and that they probably have mold toxicity. (I know, even your eyes are glazing over as you read this!) I get it. Our life is not glossy and fancy and Pinterest-y. It's gritty and challenging and sometimes out of control. We try our best to make sure we add a huge dose of love and acceptance and support and encouragement too, but sometimes I don't handle the stress very gracefully.
Our chiropractor, who sees our whole family and has known us for years, told me today that I am "avant garde." My parenting, my way of looking at my kids, my way of searching for answers for them that do not fit the norm, my way of thinking outside the box, my way of advocating for them, my feeling of 'there is something we're missing'…he said all of that makes me avant garde. I love that. I'm going to get a bracelet made that says that, to add to my other "message bracelets" that I wear every day to remind me to be brave, be joyful, have courage, have love.
It's extremely hard for me to feel judged by others. That's my biggest fear, my biggest weakness. When you have children, period, you may feel judged. When you have children with disabilities, the judgement from others is even more present. My chiropractor said I'm ahead of the game. I am not the norm, when it comes to parenting, but that's a great thing, he said. I find ways to help my kids that other people may think are completely loony, but will really help my kids heal. Avant garde. This gave me a boost of hope that I really am doing the best I can for my kids, because many times I am at such a loss. How do I parent this? Maybe someday they'll mature a little bit, life won't be so difficult and unpredictable, and I can rest in the peace of knowing I truly did everything I could to help my children be whole and be happy.
