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Tuesday, April 17, 2018

Finding Hope Through The Hard Stuff

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I'm not one to complain, but I have to be honestsometimes I feel a little resentful about being a special needs parent. Throughout the years, I have had to learn so many new things in order to successfully parent my four sweet children who have special needs. Sometimes I’m tired of having to learn new things. It’s not that I don’t like to learn, it’s the kind of things I have to learn. Sometimes these things are not fun. I wish for my kids that they could have peace and health and ease. But often, the things our family goes through are difficult, and it's hard to watch my babies struggle.

When my kids were little, I loaded them in the van after school every day for therapies of all kinds, while my friends loaded their kids into their vans for soccer, baseball, basketball. I learned all kinds of tools while sitting in on therapy sessions. I learned about sensory diets, brushing, stretches for hip flexors that are too tight, how to deal with a child’s anxiety and not feed into it, how to build strength in cheek muscles so words can be pronounced correctly. I've had to learn how to navigate IEP's, how to hire lawyers and educational advocates, where to get the best neuropsychological exams. I've researched what types of holistic interventions will help with anxiety, ADHD, Tourette Syndrome. When I started making weighted blankets, I realized that some families have never heard of such a thing! I wished I had never had to search for ways to calm my children down, or help them sleep or focus.  

Sometimes I wish I didn’t know everything this journey has taught me. Because sometimes this journey is hard. 

In the past couple months, I’ve had a crash course in all kinds of new things. I’ve had to learn about what to do when one of my boys refused to go to school because of extreme anxiety. I’ve had to learn new ways to work with the system to get my son what he needs, which is out of the realm of “normal.” I’ve had to learn about therapeutic day schools. I’ve had to dig into anxiety even further and figure out how to help my boy adapt to a new environment. Even though the new school is a perfect fit for my son, it’s new. He doesn’t do ‘new’ well, so it’s been a journey. It feel like two steps forward, one step back, every day. But I comfort myself with the tiny little baby steps forward, because at least we’re making progress. 

Just when I think there can’t possibly be anything else drastically, devastatingly hard and new to learn, life comes up with new surprises.  

Just when I think I should be able to take a breath and be done learning about hard things, something new pops up. More anxiety, in a different kid, showing up in a different way. I’ve had to figure out what kind of documentation a school needs in order to have a child medically excused because his PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders associated with strep) is causing so much anxiety he can’t even function. Just when I’ve got one kid situated in his new therapeutic school, and I think we’ll get a break from crises, I’ve had to put my Advocating Pants right back on and go to work solving the problems of another kiddo.  

Last fall, my 15 year old twins did a 5-week course of IV treatments for their Lyme, Chronic Inflammatory Response Syndrome (CIRS, also known as mold toxicity) and PANDAS, called ozone therapy. One of my boys sailed through the treatment and has done amazing since finishing the protocol. Anxiety is reduced, there’s no more sensory overwhelm, his tics have gone. My other boy is a different story. I thought for certain that I’ve royally screwed him up by having him do the treatment, because he’s feeling SO much worse than before the treatment. It’s got to be my fault that he is suffering, living in a tortured, anxious body. I made him do the treatment and now he’s worse, while his twin brother is doing amazing after the very same treatment. As parents to special kids, how many times do we second guess ourselves? How many times do we wonder if our decisions are the right ones?

My boys did blood tests before and after the IV treatments. The results shocked me. The labs showed that the IV treatment has healed both of my sons from some very major infections that they could not get rid of no matter what treatment we tried prior to the ozone. I was dumbfounded and elated. And confused. How could the labs be so great, and my one boy be feeling so terrible? The doctor said our boy still has some infections that need to be treated. He has some things that need to be addressed, some inflammation that needs to be dealt with. And then maybe he will find the elusive healing we so desperately search for.  

But, at least I know that ozone was the right choice. On paper, my son is healing. Now we just have to get his body to a place where he feels like he is healing. I’m grateful that I can pack up my guilt about the ozone and ship it off. That treatment was the right decision. 

My boy with the anxiety started having panic attacks every day. On the bus to school. At school. At church. Anytime he was away from home. We were in crisis mode again. When we heard about partial hospitalization programs, and it was recommended that our boy attend one, I thought, “How can there be anything left in the world for a special needs kid that I don’t know about? How have I never heard of this before?” But sure enough, this was something new I needed to learn about.  

Frankly, I didn’t want to. I’m raw. I’m worn out from all the learning of all the things I don’t want to have to know. I don’t want to know about therapies and meds and special schools and special diets. I don’t want to know about all the kinds of supplements that might help anxiety. I don’t want to know about special programs for kids who can’t live life because of too much anxiety. Enough. I want someone else to do this hard stuff for me. Usually I can get through our tough spots pretty gracefully, but there are times when the days seem long, dark and lonely. On those days, I sometimes wonder-- when can I be done learning the hard stuff?

Our boy was number one on the waiting list at a top notch partial hospitalization program. We waited for three weeks for the call that would admit him. We finally got The Call, and our boy will start the program for teens with anxiety and OCD this week. He will go to this outpatient program every day for a few weeks. They will help us tweak meds, keep up with school, and learn new coping skills. I know this is what my boy needs.  

While driving my younger son the hour to his therapeutic school (because he’s too anxious to take a special school-appointed cab) I’ve had a lot of time to sit with my exhaustion and grief. I whined to myself, when will it be my turn to just have a “normal” week? I know, I know, there’s no such thing as normal. But in my funk, I fussed that my life certainly can’t be normal. 

Last week I confronted a fork in my road. I realized I could let this crazy season of life drown me and I could fall apart, or I can find a way to take care of myself and start swimmingI threw a ton of resources and self care at my worn out body and soul. A friend told me, once again, that these beautiful children were given to me for a reason. I was chosen for them. I’m not sure I’m qualified for this task I was “chosen” for, but I pulled my Advocating Pants right on up again and decided that I’ll meet the challenge as best I can, like I always do after a period of grief and exhaustion.  

Sometimes I wonder why I have to keep learning about all these things that make life so hard. I ask, “Why me?”  

Then I remember the time when I was running a support group for families whose children had Sensory Processing Disorder. Once, I met with a family who had just found out their little girl had SPD. They were scared and worried and overwhelmed. Going into the meeting, I was concerned that I wouldn’t know how to help the parents. Who was I to know how to help them?  

When I sat down with the family and they began asking questions, I had an answer for every single one. I had ideas they could try. I had advice to give. I had experiences to share. I surprised myself. I didn’t know how much I knew.  

You never know how much you know until someone needs to know what you know. Then you try to help them by brainstorming about all the things you’ve done with your own kiddos, and you realize what a wealth of knowledge you’ve accumulated. So in some ways, it is a gift to keep learning, even when the learning is hard. 

I think this is why my life path keeps me learning new things about the special needs world: so I can share what I know with other families and help them find hope. Otherwise, what’s the point? While I’m struggling through the quicksand of trying to find answers to our latest crisis, I don’t realize how much I’m learning. Once we’re through the crisis and I find myself in a position where someone asks a question about how to help their own child, I often find I have been in their shoes and can empathize. I often have some experience to share. If nothing else, I can be a safe place for others to vent, question, lament, grieve…and maybe I can help them find hope.  

Although I struggle with our family’s challenges and crises, when we’re back on solid ground I am invariably grateful for the journey we’ve taken, because it leads me to be able to help others. 

Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia!  
Want to join in on next month's Voices of Special Needs Hop? Click here! 

Thursday, April 12, 2018

Soft Spots

A few weeks ago, I went back to church. I haven’t been there for a while, because of a lot of things. Kids, craft shows, exhaustion…lots of things. Our kids are very involved in our church community, which I love, so I decided I need to step up and show up again.

The second I walked into our lovely, joyful, wonderful church, I second guessed my decision. As a friend wrapped me in a bear hug, I remembered the real reason I haven’t been to church very much recently.

My church makes me cry.

Our church is “contemporary.” Which means we have a rock band to lead our anthems and our pastor wears jeans and has a message that welcomes everyone in any walk of life. I love it. Everything about our church gives me the feels.

But when I get a case of the feels, I feel weak and vulnerable. I feel like there’s a chink in my armor and the fa├žade that I have carefully put together in order to carry on under unimaginable stress begins to crumple. It feels uncomfortable. From the songs we sing, to the hugs friends give, to the message the pastor speaks about hope and unconditional love— it all makes me feel. Which makes me feel like sobbing big, ugly sobs through the whole service.

I was chatting with my parents after this particular Sunday when I went back to church. I told them how I feel like crying every time I go. My dad, who is a pastor, said that’s because church is a soft spot, and my life is hard. So when I find a soft spot, it makes me a little weepy.

A lot of things make me cry when our family is in crisis mode. I try my best to stay away from those things that crack my hard candy shell and reveal my raw vulnerability. I try to stay away from them because I worry that once I crack and start letting out the feelings, they’ll overtake me and I’ll never recover, never stop crying. It’s better, easier, to just stay strong and carry on.

I had been able to have a part time job that I absolutely loved during the past couple months. But then the pieces of my life began to unravel as not one, but two, children fell into crisis. I had to scramble to pull out our resources, to figure out how to help my kids, to get their needs met. I had to figure out what schools needed for documentation to excuse my boy from school because he is in a PANDAS flare and anxiety is through the roof, making it difficult for him to function. I had a crash course in therapeutic day schools and partial hospitalization programs for teens who have anxiety and OCD. I hit the ground running and am doing the best I can to meet everyone’s needs.

In the midst of all this chaos, my coworkers were incredible. They understood me and empathized with me. One day, I drove my son to his therapeutic school- an hour away. He had a very tough morning because of anxiety and it was extremely difficult to get him to stay at his school. I finally got him situated, and drove the hour back home to work until it was time to pick my boy up again.

I cried most of that hour-long ride home. This is hard, people! This whole parenting, grieving, figuring out how to help your kids thing is the hardest thing I’ve ever had to do! To watch your babies suffer is torture.

I pulled myself together and leaned my head out the window into the cold wind as I drove the last few minutes to work, so my eyes would look somewhat normal again. When I got to work, my three supervisors were in the front office. One pulled me aside and gave me a gift bag. She said, “I want you to know I care about you.” I said, “Listen, don’t make me cry again. I just got done weeping for an hour.” I pulled out a beautiful gift, and read the tiny card attached to it. I burst into tears. My sweet friend said, “Maybe you should read the big card when you get home.” I laughed through my tears and gave her a hug. And then went into the bathroom to pull myself together, again.

I came out of the bathroom and tried to hold in my tears as I popped in the front office to apologize once more for being late. My friends all said they understood, not to worry. One supervisor said, “We have such a soft spot for you, Carrie.” They went on to say thoughtful, beautiful, kind things. To which I responded by completely breaking down again. I sobbed, “I already told all of you, you’re not supposed to be so nice to me because then I cry!!”

Then a coworker from the classroom I worked in stuck her head in the office. She saw me crying and enveloped me in her nurturing, supportive arms. I cried more. I went into my classroom and my other two coworkers were equally as kind to me, so I cried some more. I told them it’s so hard for me to hold it together when I’m confronted with pockets of kindness and empathy. They said it’s ok to cry, you can’t hold it in all the time.

I felt like explaining that if I start crying, I’ll just keep crying. And I could cry all day every day, at this point. Because our family is facing some scary, intimidating, dark stuff.

I’ve realized that whenever I hit a soft spot in my life, a place where I don’t have to keep my armor up, it’s uncomfortable because I feel vulnerable and so emotional. I guess we need soft spots once in a while, to let out our feels, to let out the stress. But when I find myself in a soft spot, I feel so emotional that I’m worried I’ll never recover, never be able to stop crying.

I’m a work in progress. I’m trying to find a balance between being strong and letting in softness. I’m not good at navigating the soft spots, but I’m so grateful for the bits of beauty and grace in my life that show me what it means to be soft.

I’ll keep practicing.