Tag Archives: special needs parenting

Never Say Never…2016 Year of Surprises

2016 seemed to start of just fine, perhaps a bit more boring than usual. Things seemed on an even keel for once. My oldest son was making strides with his autism and the memories of constant struggles were slowly fading away as all of his (and my) hard work, time, and money over the years seemed to be FINALLY paying off in spades with consistently calm behavior, excellent self-expression and language, increasing social skills, no more potty accidents, and only good days at school. We were badassing autism, I would say. My youngest son had found relief through acupuncture from the tics that tormented and embarrassed him so badly at school due to his Tourette’s disorder. He had become BFFs with the neighbor boy. With our boys doing so much better and both of us working stable jobs, my husband and I were getting along better than ever before and having less heated disagreements over house chores, finances, and such. In early May, we went to a winery and I remember feeling caught by surprise and delight that I was falling back in love with my husband as we watched the sun set drinking glasses of Malbec on the patio. The overall stress level for our family seemed to be getting to that of what most people experience in their normal day to day lives. We had been living in financial and autism crisis mode for so long, I had forgotten what it felt like to just kind of coast through life some days. I posted cute pics of the kids or what new recipe I tried that night on Facebook. I went to yoga class regularly, folded laundry while watching Netflix, squeezed in the occasional coffee with a friend, date night with my husband and juggled the pressures of my jobs like a boss.

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Then, that equilibrium that I hoped would be my new normal slowly disappeared in a domino effect leaving me in utter brokenness, some of the darkest nights of the soul I have ever experienced, on my knees pleading to God, crying my eyes out in my car, calling doctors begging for help for my son, sitting by the lake talking myself out of wanting to swim away and never come back, counseling sessions, trips to multiple specialists for a new medical and mental health condition my son developed called PANDAS (“because moderate autism just isn’t enough is it God?” I lamented) which occurred after a bout of strep throat. He was also starting puberty. Crap. Humbled. Waving the white flag by calling the Marcus Autism Center in Atlanta crying and breaking down begging for someone to help my son and to help me. They did….with a psychiatry appointment. The last thing I ever wanted for my son. Never say never…..

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We had previously experienced so much miraculous success with naturopathic medicine and diet changes, public school special education programs, SonRise program and therapies (Occupational, Speech, Aquatic, and Hippotherapy), that I NEVER thought I would be one of “those parents” (sorry, I was just so ignorant) who put their kids on psych meds. As a mental health professional, I understood theoretically that there is a time and place for meds, but I observed that often parents tend to just jump the gun and go straight for meds rather than trying other treatments first and using meds as a last resort. I still advocate a conservative approach to medication. But, where I went wrong was assuming that because I am a mental health professional, well versed in natural treatments for various ailments as well, that my son would just NEVER need meds. WRONG. Last resort was exactly where we were at. At least I could feel confident I had exhausted all the options first I suppose.

PANDAS (see article) plus the onset of puberty made autism look like a cake walk. PANDAS made debilitating OCD symptoms, insomnia, and aggression appear. These tormented and took over my once sweet and docile son’s daily life and thus my life, my youngest son’s life, my husband’s life, and even affected our extended family and friendships. We had to stop going to church, taking him to the store, visiting friends, or going out to eat as a family. He just couldn’t handle noisy or crowded places anymore. We would spend hours trying to get him to finish up his rituals of closing doors certain ways or counting to 12 over and over. One night, I stayed up until 2am waiting for my son to stop repetitively banging the bathroom door to the count of 12 over and over again for hours. If we tried to get him to stop or even so much as breathed too loudly during these rituals, we would be violently attacked. My son is as tall and weighs as much as I do. I would have heated disagreements with my husband and my mother about medication. I was desperate and wanted to try it for my son, they were adamantly opposed. One day, one of my younger son’s friends came over to visit and made the mistake of “opening the door wrong” and my son went into a rage. When I tried to calmly de-escalate things (even thought I was on the verge of a panic attack) and make sure my younger son’s friend wasn’t attacked, my son started pulling me by my hair to the ground where we wrestled and I had to pin him down just to get him to let go. I am a trauma survivor and every time my son had one of these episodes I would end up going into the bathroom crying and barely able to breathe in the throws of a panic attack. I would have to drink a small glass of wine just to feel like I wasn’t going to hyperventilate. I was worried about one of us being seriously injured or that I would snap. I just wanted it to STOP.

I knew hospitalization was an option people would advise if I told them the truth, but I refused to put my son in a mental hospital where God knows what would happen to him. I saw news reports of children at local mental hospitals dying or being scalded in the bath. I would rather have my ass kicked all day long or let him kill me than risk inhumane and traumatic treatment for my baby. This is how so many parents feel and why so many families end up in tragic situations. We can’t trust the quality of the help and many can’t afford it if they could trust that care would be adequate. “I am a mental health professional, I will make my home my son’s treatment facility”, I decided. I just didn’t have prescribing privileges, so I needed a doctor’s help. That’s when I reached out to Marcus Autism Center. They normally have a 6-8 month wait list for psychiatry. After I told them the truth about what was happening and how I didn’t honestly know how much longer I could take it, they worked us into a cancellation spot 4 days after my call. I just had to hold on 4 days.

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The first medicine, Clonidine, helped so much with sleep. My son sleeping again helped me feel like I might make it after all even though the days continued to be torment. I found the place he raged the least was in the pool, so every day off was spent at the public pool for as long as we could stay. I still had to pull myself together and make it into work looking like my son hadn’t been attacking me and act as if nothing was wrong and do my job as a mental health professional. It doesn’t make good water cooler talk to discuss how your son kicks your ass if you breathe wrong when you work at a domestic violence victim’s services center. I needed to keep my job and my paycheck. Next, we added in Prozac supposedly for the OCD, which made my son violent and manic all of the time. Now, I had a child who was in an irritable mixed state mania plus it didn’t do crap for his OCD and PANDAS. I called the psychiatrist and told her I was stopping the Prozac. She wanted to try increasing his dose at first, but I said hell no as politely as possible (you HAVE to advocate and speak up to survive this thing as a parent) and she made an appt for us to come in the next day for another treatment plan. That’s when the decision was made to put my son on Risperdal. As a hippie, crunchy type mom this was a “big gun” antipsychotic med I did not trust and did not want to try. It was going to make my son diabetic and make him grow breasts, I feared. But, in utter desperation I honestly would have tried a tranquilizer dart for a bear at that point so I said “what the hell? I don’t even know anything anymore, screw everything I think I know” and got the prescription filled. I lied to my husband about it. Within just a few days my son was BACK. He kept getting better day by day, calmer, happier, engaging with us, not zombied out like I had feared. Biting himself less, attacking less, then I realized days had gone by and he hadn’t gotten physical with us, I hadn’t had to tell my younger son to lock himself in his room for safety. It was a MIRACLE. I finally told my husband and he cried because he finally had to admit that our baby did need meds and that they were helping. This isn’t what we had wanted to do. But never say never….

After he was stabilized mentally, I had the energy and strength to start going more hardcore into researching PANDAS and treatment options. I found a pediatrician in Atlanta (Dr. Rodbell) who takes our insurance and is PANDAS informed (many doctors aren’t) and we got on the wait list to see him. We started a treatment protocol of long-term antibiotics. This made me cringe because we avoid antibiotics in our crunchy natural household like the plague. Never say never….

Lots of driving back and forth to Atlanta ensued (about 1.5 hours away from our home). I somehow shuffled my work schedule around to be off some half days to take my son to his specialists and therapies myself and not lose hours. I proceeded to get quietly then loudly pissed off at my husband for working his 9-5 job, going about his business, and not really seeing all that was going on in my world at home in the “mental hospital” I ran while I wasn’t at work at a domestic violence crisis center and all of the stress that I felt was damn near killing me. I said I would never be “martyr mom” who did absolutely nothing for herself, but that’s exactly who I became during the Summer. There was no time for me to even think about what I might like or want to do. I didn’t go to yoga class for weeks. Those who know me know that I need my yoga just to stay sane and that I NEVER miss. I wasn’t sane. I looked like shit. People probably thought I was on drugs or worse. Nope. Hanging in there. Pulling up at the school in my PJs to drop the kids off late. I never imagined I would let myself go like that. I fought so hard to not let that happen, but it did. Never say never…

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I came out of the “Summer of Hell” now embracing the wonders of psychiatric medication (still as a last resort, but one I wish I had tried much sooner before things came to a crisis point when I barely had the will to live left). Never say never. Crunchy hippie natural mama meets hell yes for RisperDONE. That really is the drug name. I joke with my husband that I would gladly make a TV ad for Big Pharma smiling and saying in my sweetest Mary Poppins voice: “RisperDONE…for those times when your child’s aggression and violence make you want to say I’m just DONE son!”

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So, we were back on track with my son’s mental health. We resumed his therapies and he went back to school no longer headbutting the teacher and giving him a bloody nose now that his meds had him stabilized. Life seemed to level out….but that feeling of love for my husband that had surprised and delighted me when we had that winery date watching the sunset on the patio overlooking the vineyards had gone…somewhere…away….we had devolved over the course of that summer into being simply fellow survivors living in the same fresh hell.

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We tried to maintain connection the best we could. We never stopped talking or being physically intimate, if nothing else just for moments of free stress relief….but the connection, the love, the emotion just wasn’t in it. We were both like shell-shocked zombies stuck together by trauma bonding. I found us a marriage retreat for special needs parents and was so excited to go in October. This was going to fix everything, right? We just needed to chill out and really connect. Love would surprise us again…right? Sadly, my precious Grandma had to have emergency open heart surgery to fix several life-threatening issues a month before our retreat. My Mom is our only respite care provider by choice because I have high standards and trust issues. She is the only person I am confident can handle my boys as well as I can over long periods of time. She had to stay in the hospital with my Grandma for over a month. We had to cancel our trip. I cried and soldiered on. I was worried about my Grandma, but she came through and is doing well thank God! We registered for the December retreat instead. We went on the retreat, connected, had fun, laughed, had one spat about housework, but overall it was a fabulous time with new friends who “get” what living the special needs kiddos lifestyle is like. Love didn’t arrive to take us by surprise as it had done at the winery, but something else was happening. It felt cleansing, painful, but good. We did realize how much we still have in common and how much we enjoy each other’s company still after all these years.

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Then, one week after the retreat when I’m walking on cloud 9 all hopeful thinking things are starting to maybe look up for the first time, we had gone out for sushi, picked up the kids at my Moms, and just had to get them put down to bed in order to continue our date night 😉 So, I’m walking into the kitchen all la-ti-da in my pink PJs to get a drink of water after putting the kids to bed when I’m hit square in the face with the fact that my husband is not who he claims to be at all, not Mr. Self-Proclaimed feminist Christian who is sensitive to the fact that I spent years in therapy getting over anorexia and trauma. That every time he portrayed himself as “someone who doesn’t struggle with THAT” he was lying. Nope, he was all of a sudden in a flash of a second none of these things he had so frequently and vehemently claimed to be. He was cheating on me. He was some shady bastard I didn’t even know anymore. I won’t go into the gory details out of respect for him, but there was no mistaking the proof. In this age of technology, it can be confusing what even constitutes “cheating” anymore, but when a husband and wife discuss and agree upon THEIR boundaries, needs, and definitions then anyone who violates that while their wife is looking forward to them coming to bed and paying her some attention is cheating, plain and simple. Cheating your thirsty spouse out of your love, attention, and affection and putting your sexual energies into someone else is cheating. And it makes that person wonder why? Am I not good enough? Do I look bad? Should I start starving myself again and undo the 6 years of therapy that got me to the point of being able to say “I’m no longer anorexic at all and I am actually able to view myself as beautiful FINALLY”? When my husband would support my recovery and tell me he thought I was more beautiful not scary skinny, was he lying to me?

Regardless of how it went down, in that moment I felt everything I believed to be true crumple into a big ole pile of bullshit. I could barely stand. I yelled the first thought that raced through my mind, “Well I guess I’ll just go out and do whatever I damn well please with whoever I damn well please now (expletive) huh!” and ran to the bathroom to throw up. I threw up over and over again all night long. It was like labor. I felt my body, the one thing that has never betrayed me and has always tried to protect me, trying to empty me of whatever was causing me to feel so sick. My body, unlike my husband, was trying its damnedest to protect me and cleanse me of anything noxious or harmful to my health. My mind was whirling around. I always said that I was the type of woman who wouldn’t put up with certain types of bullshit. I won’t put up with disrespect in my own house after I bust my ass at work all day and take care of the kids anytime I’m not working. I won’t put up with cheating when I’ve offered the option of an open marriage. I just won’t abide a liar who claims the highest fidelity in order to coerce loyalty from me. I own my home with only my name on it. I make my own money. I pay my car note. I am by no means stuck, I thought. All bets were off. What was good for the gander might just be good for the goose…..So, I told my husband to get out of the house until I could stop raging and wanting to kill him and go seduce the nearest unmarried person. I alternated between crying so hard my body shook, being so angry I almost broke my hand punching a door, and dolling myself up and flirting a little with strangers out in public. I don’t regret it. I survived being punched in the gut and having the wind knocked out of me, emotionally speaking, so I think its only fair and normal I came up swinging rather than being sweet and doing all the “right” things.

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Finally, one night I was crying in bed alone, my hand outstretched onto my husband’s now vacant side of the bed. Cold crinkled sheets. I can do this. I can survive this. I’ve lost loved ones, lovers before. I know how to suffer. I know how to feel like you are going to die…and yet survive. I started praying. Blubbering crying and praying. God reminded me of everything wrong I had ever done to my husband. How I wouldn’t marry him for so many years because I didn’t know if I could be faithful or not, 99% certain I couldn’t be. How I had messed up just weeks before we said “I Do” due to my fears creating a self-fulfilling prophecy and how, even in spite of my Herculean efforts at recovery, I had grown overly confident that I no longer could be tempted, allowed myself to be in a compromising situation and almost slipped and cheated while I was newly married, catching myself at the last second before going through with it. I realized that my husband had forgiven me much, as had God. But ultimately, the realization that was the most profound was that even if my husband wanted to see other people, I still wanted him to come home and be my best friend. I wanted him to come home to my bed, my body, my table, my food, his children every night.Heartbreak.jpg

There is no rational explanation. Just LOVE. Not co-dependency, because this isn’t insecure need out of fear of being alone (the thought of being alone actually excited me and relieved me in many ways), this is simply what I WANT and what I choose right now at this juncture. His pros outweigh his cons. I forgive him and he has forgiven me. And to me, that is love. 14 years. Plenty of reasons to leave, but more to stay and try. Maybe we could work towards reconciliation, I thought. When we had a heart to heart, he finally acknowledged the truth and shared that in counseling he had realized that he honestly didn’t trust me and thought I was still cheating on him which made it easy for him to do what he did. Maybe, I thought, instead of signing a lease at an apartment using our kids Christmas presents money as a down payment, he could just come home and we could work through this by the grace of God somehow…..It’s been tough…and beautiful…and surprising in so many ways. Surprising like that day at the winery falling back in love over wine. Except this time, we are falling back in love over honest, heart-felt conversations rather than the buzz of wine. I’m still figuring it out and realizing I don’t have to figure it all out. I can just let it unfold. The boys are super happy to have Daddy home. So am I. One thing is sure…I will never say never again after this year’s humbling lessons. I will just continue to wing it…together with my sons, my husband, and you all my sweet friends and strangers 🙂