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Thursday, March 5, 2015

Rock Bottom

Have you ever really thought about what it means to hit "rock bottom"? When we hit Rock Bottom, it's excruciating. We've hit it several times during the past 12 years. Sometimes our boys spiral out of control in every way imaginable, and it's pretty much up to me, with Alex supporting my every move, to figure out how to get our family back on track. Pretty daunting.

Rock Bottom happens slowly. You suddenly realize you're not floating under the blue sky and warm sunshine. All of a sudden, all you can see is water that becomes more and more murky, which is why it's hard to find a way out. It's hard to know where you are; it's confusing and frustrating and overwhelming. As you begin to panic and flail in all directions, you fall deeper, sinking into the depths of dark, heavy water that fills your lungs and covers your body with silt. It's hard to move. You become frozen, immobilized with fear. You don't know which way to turn to escape, water fills your throat as you try to call for help. Then you feel your shins scraping against the knife-sharp rocks at the very bottom. Torture. How did you get here? You don't belong here. How could you have let things get this far? How will you ever get out now? You have trouble moving, trouble figuring out where to look for support to bring you back to the surface. Rock Bottom. It's not a nice place to be. Dark, dense, lonely, scary.

Since I always try to find a positive in the midst of challenge, I guess it's a good thing that we've been to Rock Bottom so many times. Now I know what to do when we get there. Now I know where to find help to rescue our family and bring us back to the sunshine and blue skies. The weird thing is that I never notice that we're slowly dipping deeper, heading lower and lower, until we actually hit those rocks at the bottom and I realize how bad things have become and that we need immediate help, right now. 

It's like when Ben and Jonah were toddlers. They got so many ear infections. When the infections first began, I wouldn't realize how hard the boys were to take care of and comfort, because it got worse so slowly. Finally, once it was obvious that things were very different and very bad, I would take them to the doctor. Of course it was an ear infection. They would get meds and turn the corner within 24 hours, and I would be shocked at how easy it was to take care of my little twinsies when they were healthier. The difficulty sneaks up on you. It's like how you don't notice that your child is growing, because it happens so slowly. And then one day you realize they can reach the counter! And then you realize they can open the drawer and reach inside! And then you realize they're just a couple inches shorter than you! When did that happen? Rock Bottom sneaks up on you like that.

So for months, our family has been slowly sinking. Challenging behavior, unstable emotions, anxiety, panic attacks, rages, rigidity, lack of ability to transition, sensory problems, more anger, physical ailments, illness, oh and did I mention the anger? Yeah, that, and more, has been our life for the past several months. I wondered if we were heading for Crisis Mode, but kept trying interventions in hopes that I could ward off the inevitable Rock Bottom on my own. 

My attempts didn't work. 

So now that I'm quite familiar with Rock Bottom, I mobilized our rescue team. I called our counselor. One by one we all got back into therapy. I called our psychiatrist. We dealt with some concerns I had about Ben and Jonah's medications that didn't seem to be doing what they should be doing. Each boy added another medication to deal with their bipolar symptoms. I got Aidan scheduled for a neuropsychological exam. I worked with the schools to see if they could make sure the kids didn't fall through the cracks. I reached out to individual teachers, working to make sure the boys got their work done and letting teachers know when we were struggling. I talked with our pediatrician. I got sick kids to the doctor. Over and over and over. I took Aidan to the GI doctor. I got Jonah scheduled for a neuropsych exam. I got all four kids into the therapies they need now. I got all 8 eyes checked by the developmental optometrist. I got Ella's cavity filled and Jonah's tooth pulled. And I tried to take care of my own body that is struggling to stay afloat on its own, given the lovely illnesses that it has. Oh, and I tried to still be a good wife, mom, daughter, sister, friend…

So Miss Ella. She has been struggling in a couple areas over the past few months. Her OT has seen that she is regressing in some areas, physically, that she used to not have trouble with. First we thought it was because nerves along her spine were being impinged. But then the intuitive, amazing OT realized that the nerves and muscles along Ella's spine are actually relaxing for the first time in her life. Since they have never been relaxed, they have never been used correctly. This has caused them to be weak, bringing weakness to Ella's arms, shoulders, core, and hips. This is why she freaked out at gymnastics one week recently and refused to do it. She said the warm up was too hard. I believe my kids when they say things like this, and knowing what the OT had told me, I understood that my poor little Ella was so sad because she desperately wanted to do gymnastics, but her tiny body couldn't keep up with the other girls. So I pulled her out of the program, at least for a while. She's been doing gymnastics since she was a baby, and she loves it, so this made me sad. The saddest thing was that Ella wants to do gymnastics but her body is betraying her. 

Then I talked to a friend who had the MOST wonderful suggestion. She knew of a place where an OT would do gymnastics, at the regular gym we always went to, one-on-one with Ella! It's an OT session while doing gymnastics! Incredible! I called and got Ella into the program. So now she will see our regular OT every other week, and on alternating weeks she gets to go to gymnastics and do it at her own pace! She is thrilled. She is counting the days until she starts. I can't believe how perfect this is for her. 

I also reached out to Ella's dance teacher to let her know what Ella is struggling with, and how it may be affecting her in dance. The teacher is 100% on the same page with me, supportive, nurturing, loving. She said she doesn't notice Ella struggling in class, but if she does the teacher will modify things so that Ella can keep up. She said she sees Ella sort of pull away from the other girls sometimes, and she may be struggling a little at those points, but that she joins back in when she is ready and keeps going. She is a good student, a leader, and sweet to those around her. 

I don't know how we got this incredible circle of incredible people who support us through all our Ups and all our Rock Bottoms. We are seriously blessed.

Ella is seeing the chiropractor for therapeutic massage and adjustments to help her muscles all do what they're supposed to do. The OT has already noticed some positive changes from this, so that is a good sign.

I also got Ella into counseling to work on her anxiety. It's been very high again these past few months. When she has to leave me, it's a lot harder than it should be. In speech therapy, she's working on pronunciation of words, muscle tone in her cheeks and lips, and past tense of words. When she says "Today I goed…" I say supportively "Today I went…" to which she says "That's not right! That sounds dumb." 

Ok... I'm passing you off to our dear speech therapist. My work here is obviously done. Someone else try to help Ella speak correctly because apparently Mama is just ridiculous.

AND last but not least, Ella is having MAJOR food sensory problems. So our lucky speech therapist gets to work on with Ella too, who is extremely reluctant to do anything with food during therapy. 

Ella is also having more tics. She's had tics on and off since she was three years old. She meets the qualifications to be diagnosed with Tourette's, but since we haven't needed a diagnosis to get services at school, we haven't had her diagnosed yet. The other night, we were doing our ritual of snuggling and watching "Teen Titans" before bed. Ella started crying. She has been talking to me a lot lately about how her underwear don't fit right, how they need to be at a certain level on her belly and they never stay there and then she has to pull them up. She has done this little twitchy thing for a long, long time, all the time, all day. She sort of twitches her body, her core. Her OT has noticed it, and she agreed with me that it was a tic. But if my kids don't notice their tics, or the tics don't bother them, I don't talk about it. I don't mention their tics unless they bring them up or I can see they're in distress. 

Well, that night, Ella was in distress. She said her underwear wouldn't stay at the right place on her tummy. So she had to keep pulling them up. She didn't want to keep doing that, so she twitches her tummy sometimes to pull the underwear up. But that doesn't work. Then she said, in tears, "It's a tic. And I hate it." 

Whoa. You have to understand, at our house we joke that we have our own support group for Tourette's right under our roof. We are open about our challenges, our diagnoses, how they affect us, etc. We talk about anything and everything that the kids need to talk about. So Ella has heard about tics since birth. Some people may think that she just wants to be like all the boys in the family, so she is copying them. That this is a learned behavior. I can tell you it is not. I know when my kid is choosing to do something and when they are suffering because they don't have control over their body. And little Ella, squirming and crying in my lap, said it perfectly. She said it is a tic. She knows what a tic is. But she would never copy one just to be like the boys. Trust me on that. I asked her "Do you feel like you want to stop doing the tummy twitch, but you can't?" And she wailed "Yesss!" I felt so badly for her. I was so hoping that my little girl would escape the torture that is Tourette Syndrome. Apparently she has not. She fell asleep that night in my lap, holding her underwear at the place on her tummy where they feel just right. I felt so sad for her.

I told a good friend about what had happened that night. She said it is sad, but it's not the end of the world. And it startled me. In that moment I knew she was so right! Yes, it's sad that Ella has tics that are hard for her to live with. But guess what? Life goes on. So I can feel sad for my daughter, but it really isn't the end of the world. How many other people live under this roof with tics they can't control and hate, and still manage to find happiness? (Well, at least some of the time.) People who have Tourette Syndrome can do anything a person who doesn't have it can. Ella can be anything, do anything, accomplish anything. Yes, the road will be harder for her. Yes, she'll have to overcome things that most people don't have to. But that gives a person strength and character and grace and compassion.

Plus she'll always have a pack of brothers and a daddy who tic, and a mama who fiercely loves them all. She'll always have that.

Whew. This kid alone would be a challenge, but guess what? I have three more.

Aidan. Sweet Aidan. He's struggling in school, academically and with executive functioning and impulsivity and math and…the list goes on. He got in trouble a couple weeks ago because -at least these are the details I know for sure- he was put in the hallway to work on his assignment in a quiet environment. A teacher walked by and saw that instead of working on his assignment, my darling was drawing on the floor with his pencil. Now, does my darling know that this is not acceptable? Absolutely. Is there any excuse for that behavior? No way. Oh wait, unless he has executive functioning problems, focus problems, ADHD, visual processing problems, a math learning disability, Tourette Syndrome…of course he shouldn't have been doing something so stupid. But the kid has some major struggles, so I can see how he got off task and didn't think through the consequences of his behavior. Oy.

Aidan has had chronic diarrhea and constipation since he was potty trained. Which actually made potty training quite difficult, in addition to the fact that he had sensory issues that impeded the process. Over the years we've tried a host of different solutions to help Aidan with his discomfort. Dairy-free diet. Nope. Eliminate juice. Didn't help. Drink more water. Still having problems. We did poop studies, blood tests, different diets. Nothing has helped. So I decided we'd take him to the GI doctor who has worked with Jonah and Ella. The doctor ordered an x-ray of Aidan's belly to see what was up with his intestines. 

She told me that "Aidan is full of poop." If she hadn't been a GI doctor, I would have been offended. Apparently, Aidan is actually constipated. Diarrhea sneaks around the hard poop and gets out. But really, the problem is that he's constipated. (Didn't think you'd get a lesson on poop here, did ya?) So he's on Miralax for a month until we see the doctor again. 

I talked with the doctor about how I have celiac disease. And Alex is gluten-sensitive, whether he's willing to admit it or not. So doesn't that make a great case for our kids (who all, coincidentally have the same poop problems that Aidan does) being off gluten? The doctor was not impressed with my theory. She said to try the Miralax first and see what happens. I disagree. I think there's a reason the kids are all full of poop and their bodies aren't working correctly to eliminate it. I think they need to be off gluten. So that's what Alex and I decided to do. I'm all for using a medicine, temporarily, that will help our little people poop big poops for a month, but there is a root problem that isn't being addressed with the laxative. That's just my Dr. Mom theory. Not that I'm an expert on poop or anything.

So Aidan is struggling at school, he's getting into trouble, he's having physical problems…the poor thing has had strep three times this winter! He's never had it before! He's also had two other illnesses in between the strep, and two bouts of rashes. This latest one the doctor said was not contagious, and would last three to eight weeks. Ouch. It's all just weird. I can't figure out the rash, but I can figure out the brain.

I had Aidan complete a neuropsych eval to see what we may be missing. The doctor had some surprises for me. She said Aidan has a pretty significant learning disability in math. He has problems with auditory processing, and especially visual processing. His glasses are addressing the visual piece of things, but it is a gradual process of improvement, not a quick fix. He has very high anxiety- higher than I was aware. He has trouble with comprehension although he is a good reader. He's an organizational mess. Organization of not only his physical things but also his thoughts, predictions, knowledge…He's got ADHD, which I wasn't sure of before since he hasn't responded well to any of the ADHD meds we've tried. So pretty much, he's a mess. 

But the fantastic news is that he feels secure in relationships. He is positive. He is funny and kind. He loves people and feels loved by people. He trusts. He is super bright. He has so many great things going for him, which makes it that much harder to know how much he is struggling. The other good thing is that we can help him with all these things. We can get him help with math. I got him into speech therapy again, to work on skills like chunking, finding the main idea, remembering information. It's funny, actually, Aidan has been asking to go back to speech therapy for a couple months. Whenever one of my kids makes an unusual request like that, I chat about it with them but don't take it too seriously. But if they keep bringing it up, then I know I need to figure out what is going on and address it. 

One thing I've learned over these years is that I always, always, have to listen to my kids and pay attention to what they're telling me. Sometimes they're great at verbalizing what is going on and what they need. A lot of times, Aidan struggles with putting thoughts into words, so I have to sort of intuitively put together the answer to what he needs. If he asks for speech therapy, more than once, that means he knows something about himself and his needs that I have to take into consideration. Last week we ran into the speech therapist in the hallway of our clinic. She asked Aidan and Ella if they wanted to smell some essential oils and put a drop on a tissue to take with them to the waiting room while we waited for Ben and Jonah to finish therapy. While sitting with her, Aidan asked our awesome speech therapist if he could come and see her again. She told him she would talk with Mom and we'd figure it out. So she was able to fit him into an appointment time and he'll start next week. It's ironic to now know the results of Aidan's neuropsych, and to know that he does in fact need speech therapy in order to learn skills that he has deficits in. What a smart, intuitive kid.

I also got Aidan into counseling to help with his anxiety. The neuropsych doctor will call our psychiatrist to talk with him about her findings, and to tell him about Aidan's significant anxiety and ADHD. Then the psychiatrist and I will work to create a medicinal plan to help Aidan. We're going to get him more help at school with the areas he's struggling in also. 

Whew. That's kid #2.

Kid #3. Mr. Ben. For months now, his rage has been more than he can control. We were back to having rages, sometimes multiple rages, every day. He couldn't keep it in. His rage is his nemesis. It is his biggest disability, he feels. He feels betrayed by his body when he has a rage, because rage is not my boy. My boy is so kind that it hurts your heart and brings tears to your eyes. Rage is not who my boy is, it is his disability. Rage punctures the tapestry of our family, creating ragged holes and knots. Rage is my nemesis too. Not my own rage, but that of my boys. 

But something magical has happened to me during this last bout of Rock Bottom. For some reason, when the rage comes at me from one of my boys, it doesn't get into my body and poison me, causing stomach aches, heart palpitations, inability to catch my breath. Instead, I can almost see the wave of rage coming at me, reaching my stomach like it used to, and then just sailing right up and over the top of my head. I have a protective shield now that I have never had before. I attribute this magical, incredible change to all the energy work I've been getting for myself. It has changed me, and I'm so much better equipped to handle my nemesis now. Bring it on. The rage poison cannot hurt me anymore. 

I talked to our counselor about Ben's challenges. I talked to the psychiatrist about Ben's medication. We decided which medication to add to Ben's daily cocktail, after weighing the pros and cons (of which there are many) of the meds we haven't tried yet (of which there are few). Ben is back in counseling. I'm continuously working with his school to make sure he's getting what he needs and doesn't fall through the cracks.

On to the fourth and final kid. Jonah. Jonah is intuitive and sensitive, a lethal combination when you live in a toxically ragey environment. Add to that his own internal demons, and you have a big problem. He internalizes his depression and anxiety. He shuts down. At school he is "a happy-go-lucky kid" who no one would think is suffering. He has had more anger, more meltdowns, these past few months than ever before. He is unpredictable and emotional. All just part of bipolar and Tourette's. But not ok. So the psychiatrist and I put another med into Jonah's cocktail too, to help with his depression and mood instability. 

I've scheduled Jonah for a neuropsych eval too. I'm wondering what pieces of the puzzle will come to light this year during the exam. I have a feeling we'll get some surprises with him too. School is hard for him. He struggles to get things done. He struggles in so many areas. And he's such a genuine, earnest, hard-working, great kid, he shouldn't have to struggle so much. We'll get him help. He's back in counseling too, which has already helped improve his depressed outlook on life. He's also seeing the chiropractor to address some physical challenges that affect the way his body moves in the world.

This past Monday, the kids had a day off from school. Alex had to work. I was dreading the day, as I do any day we're home together. I swear I have PTSD- I never know when a rage will happen, who it will target, what it will manifest as. I never know when someone will have a meltdown. I never know when there will be a catastrophic mistake made by a child that I have to contain, fix, explain, apologize for. I never know what will happen, but I can guarantee a day spent at home together is filled with mines waiting to blow up in my face. It can be terrifying and exhausting to live on edge like that all the time, for years and years.

But as I sat that morning, finally eating my breakfast and having my coffee, I listened to the movement of the house. No one was fighting. No one was raging. No one was emotionally unstable and ready to head over the ledge into Insanity. 

I heard children laughing together. I heard children talking together calmly. CALMLY.

Wait, could this be real??

The kids were playing together. PLAYING TOGETHER without fighting and raging. There was calm and peace in my house. There was happiness and contentment. I made the kids pay attention to what was happening- that there was no fighting and anger and screaming and raging. We let out a collective sigh of relief that there was no instability in sight at the moment. Maybe all our efforts were beginning to pay off. Maybe meds were starting to work, just a little bit. Maybe therapy was already helping. If I could have moments like this, even once a month, I'd be happy, I thought. Think of all the things our family could do if this was our constant, if this was always who we were. Think how easy life would be. I couldn't believe it. To live without rage imposing its enormous weight on our family, that would be a miraculous thing.

That's kid # 4. And that's what the plan is. Alex and I are both in counseling again too, to gain support and clarity as to how to best parent our little village of special children. 

Luckily, when we hit Rock Bottom now, I know what the plan of action needs to be. I know who to call for what, I know how to find the life jackets for our crazy little family. Don't get me wrong, it's still so so hard. It's still scary and lonely. I still cry when no one else is around to worry. I still worry, every second of every day. Am I doing the right things? Am I doing enough? Have I thought of everything? What have I missed? I think about every child every day, and I go through their needs, what I have done to help their needs, what else I could do…it's mentally exhausting. Even though I have the map to lead us away from the Rock Bottom that has snuck up on us, it is still a long, long way back to the sunshine. But we will get there. I will bring us back to the sunshine. The Easy Way, or the Hard Way, as I tell the kids about things they don't necessarily want to do (like any daily task. toothbrushing. showers. getting clothes on. getting on the bus. you name it, i can 'Hard Way' it. and the kids know i can, so they know i mean business. so they better get their little behinds back up to the sunshine asap. or we'll be doing it the Hard Way.).

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