The Rebirth of Me

Today I decided to blow the dust off my blog and give you another window into our life. The kids are being calm and I just turned the TV on at 11 am (huge accomplishment actually) so I’m busting this out before I shut it back off. (Because ya know, the better we are at limiting the better we are at parenting).

Anywho! We left off with the discovery of allergies. Pollen is our enemy #1. (Right after gluten) Malachi’s big spring flare was headed off by antibiotics for sinusitis and constant vigilance with the nasal rinses. Things were much better in the fall. I was nesting like mad and really getting into a good cleaning schedule. We were barely watching TV and homeschool was in full swing. We had discovered a huge trigger in allergies and we were looking forward to building on that with our Neurologist and excited to see what he had planned for future treatment.

Then in September a giant atomic bomb dropped on our family. We lost our doctor. For reasons that arent important to discuss he was closing his office. We had no alternative. That type of doctor is typically cash only so finding another like him would cost hundreds of dollars per appointment. The man who had helped our son so much and still had a ways to go was no longer on our team, and I’d be lying if I said this didnt hit me harder than I realized at the time. This was the first time on our journey that that tiny fire of hope thats been burning in my soul for years had finally went out.

Life goes on, however, and Connor came into this world in the most beautiful and peaceful way. Exactly as I had envisioned it the last nine months. In the middle of the quiet night by the light of the Christmas tree. Smooth and quickly. The most beautiful thing I had ever seen in a Novemeber.

The fire of hope was being stoked once more. I thought, maybe this isnt so bad. Maybe we will be okay. Justin had four weeks off which was more than I could have ever expected. I knew things would be okay because there would be two of us here and that was plenty to do all that needed to be done.

Except I needed to heal. Though the birth was easy it was still a birth and I needed to rest. Which means Justin was thrown into doing everything. Hes always been great about helping when I needed it: do the dishes here, throw a load of laundry in there. Help me clean the house on a random day off. That’s not what I mean. We’re talkin everything. Cleaning. Laundry. Cooking the kids food. Cooking me food. Dishes. Letting the dog out. Sweeping. Grocery shopping. Making sure to take the older two out of the house. Helping me with stuff for Connor.Everything.

The kids had a hard time adjusting. Neither of them felt like they were getting enough attention, and they weren’t. No one came over and played with them. Justin was so busy maintaining the house and cooking he barely could play with them. We just made a huge change to Malachi’s diet so there was a lot more cooking that needed to be done. Pancakes that take forever to cook. Both kids were acting out in their own ways and poor Justin had to handle that on top of everything else.

Worst of all I just sat and watched my life implode. Trying to breastfeed successfully (which if you’ve done it you know how much it takes. It takes everything.) I needed to heal so I could barely get up. My anxiety was through the roof and I became extremely depressed.

Justin went back to work and I had a very hard time adjusting and managing everything on my own. Connor had latch problems, which eventually lead to mastitis. (Have you ever trudged through meijer with a one month old in one hand and a basket full of soup in the other, with mastitis and a pounding headache? Because I have and it really sucked) I was in so much pain and so sick, Justin had to call into work so I could rest and focus on taking care of Connor. The mastitis went away and in its wake came the thrush.

Meanwhile, Malachis diet was becoming so limited that it was actually scaring me. Olyvia was acting out so much I felt like I didn’t even know her anymore. My life was literally spiraling out of my control and I felt like I was watching it all happen from somewhere else. Disassociation, if you will.

Anyway I told you that giant sob story to tell you this: one day I woke up and I remembered something.

I remembered that I’ve been fighting my whole life.

Ive been fighting my whole life and I’ll be damned if I’m going to stop now when it really matters. So I started overdosing on motivation. I started reading motivational books, listening to sermons, praying. I prayed hard and God brought to mind all these tools I had from my life to help me overcome this. I realized that I am in charge of my own life. Did I want it to change? Yes I did. I was sick of just coping and going through the motions. I was sick of being angry and resentful towards people that had let me and our family down.

The point I’m trying to make here is that things get hard. Things get so so hard and I dont even think we realize that we just cope a lot of the time. We just do things to help us get through it without actually changing anything. We revert to the behaviors we learned as children that hurt us. In the last year I’ve dug deep into my past and brought things up and dealt with them so that I could be a better Mom. I’m still digging and I’m still dealing because when things get hard I still revert back to those learned behaviors from my childhood.

Today things are better and I’m better. Today I love all of these kids equally and I find ways to show them each that every day. I have learned that things will happen and I just have to take them as they come and address them as they come. I know that things arent perfect and I know things will be hard, and that I will fail. The important thing is I learn from my failures and am better next time. I hope that my kids will also learn from their failures one day because of it.

They are doing better. Malachi is doing the best he has ever done aside from the eating issues (which I have a plan to try and fix!). He loves his new brother more than I ever would have expected. Olyvia is getting better as well, and learning to be in the middle. A hard place to be. It’s amazing the effects that trickle down once you decide to change your life.

As always, if you want to fix your life you dont need a doctor,medicine, money, friends, family, material things, alcohol, or anything else. Sure, those things may help but what you really need is you. You know in your heart what needs to change you just have to change it.

Today, my hope fire is blazin’ you guys. πŸ’œ

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The Most Glorious Upswing

You’ll learn, as you get older, that rules are made to be broken. Be bold enough to live life on your terms, and never, ever apologize for it. Go against the grain, refuse to conform, take the road less traveled instead of the well-beaten path. ” (Mandy Hale)

I debated for a long time about updating you all on the amazing progress Malachi has made. With PANS, it’s scary to get your hopes up, because any illness or immune system assault can send you right back into a flare. After discussing with a dear friend of mine, I decided I owed it to him to tell you. If he flares again, he flares again. I want to document this time because this boy has done some really amazing things this month!

At the tail end of winter we upped Malachi’s seizure meds and he started progressing really well. His sleep particularly was really good. It was the first time in his life he would just lay down and fall asleep. No more swinging, no more vest, no more drives. He just started laying down and falling asleep like he should be at his age.

It seemed short lived, however, and when early spring hit he became a totally different kid. He started stimming a lot again. Filling his mouth up with water and spitting it out onto the floor multiple times a day. Humming constantly and jumping, running around. He was pretty unreachable. He started staying up late again and waking early. When we went outside it only lasted like five minutes before he was darting towards the road. He started refusing baths because he was terrified of the shower head. He already restricts himself diet-wise but he became even more restricted. He stopped eating scrambled eggs and would only eat like two flavors of fruit pouches. It was our worst nightmare because we felt like we were losing our baby again and we didn’t know why. We had many midnight conversations asking ourselves why we are even doing the things we are doing. He isn’t getting better, hes getting worse. We stopped socializing.

I regretted getting pregnant. My God, I regretted getting pregnant. Why were we having another child when the one we have was still suffering so badly?

This flare lasted from March until the end of June. One of the longest flares he’s had in a long time. We finally seen our neurologist the end of June and we were desperate. We told him what was happening and he said it was from sinusitis. It’s a bacterial infection from the allergens in the air. Kids with PANS have more than your typical sneezy runny nose…..it literally effects their brain and causes extremely detrimental behaviors. Actually, a lot of times they don’t have a runny nose, like in Malachi’s case. We had no idea his allergies were as bad as they were because there were no outward signs. Only dark circles and extreme behaviors.

So desperate for relief for him and us, we decided to do 10 days of a specific antibiotic to help the sinusitis. Also to be more aware and diligent of pollen. Nasal irrigation two times a day to make sure that crap doesnt get stuck in his nose and cause another infection.

This month we did the antibiotic for 10 days. I’ve been extremely diligent about checking the pollen count daily and if its extreme we dont go outside. If it is high, we stay out for a half hour and everyone changes their clothes when we come in. I give the kids a bath and malachi gets his nose irrigated shortly after coming inside. No matter what, I do the irrigation at least twice a day. If allergens are bad we do it three, even four times. I vacuum every day and dust regularly. I wash our bedding once a week. More if the pollen has been high.

As soon as Malachi got off the bactrim he decided he was ready to potty train. All on his own. He brought Justin his undies and refused to wear a diaper. He has actually successfully potty trained his own self in less than a month. The only help he’s had is minor assistance from us and a social story app on his iPad. Hes also been pretty into Daniel tigers potty game. When we go outside, he doesn’t run away. He’s been looking at other people and acknowledging them. We went to the store yesterday and he walked. I’ve seen hardly any stimming whatsoever, and just a few days ago he said a freaking three word sentance. I mean the kid is exploding with new things.

This is him. I always talk about him in my blogs and say “I know who my boy is” and this is what I mean. I’m holding tight that we have discovered the source of his flares and can stop them from happening. Until then, I’m celebrating our boy for finally being able to show us how much he can do and learn. I’m proud that he can be the social, funny boy hes always been. Most of all I’m thankful we have the most brilliant doctor on our team I’ve ever known.

I used that quote at the beginning because, people might think we are dramatic. People have thought we should just shove him into the isd school and live the lives we “should live”. People think we are crazy. But you know what? We do it anyway. We do all this crazy, psycho shit anyway and ya know what? Our son is getting better because of it. You wont always make everyone happy. People will think your mad sometimes but you know what? All the best people are πŸ’œ

Brain On Fire

At Malachi’s last neurology appointment, his Dr was introducing us to his newest nurse. He said “This is Malachi, he has PANS and also a generalized, subclinical seizure disorder”. It hit me on the way home that was the first time I’d ever heard anyone else introduce him without using the word autism.

If you’ve followed my blogs you know that we’ve ventured down many different avenues to figure out what happened to our son. Before we were able to get a referral to a neurologist, it was mostly guessing and checking. Lots of concrete bloodwork, but other than nutrient deficiencies and food intolerances, we were basically going by the latest research and trying everything we could barely afford that was proven to lessen the symptoms of autism.

He made so much progress from the things we were doing, but there was still something we were missing, I could feel it in my bones. We put him in speech, occupational, and applied behavior therapy. He attended them all for a year, making very little progress. In the beginning he was happy to do the trials, and most of the time did well, however, the thing with Malachi is, his behavior has always been up and down. He will do great one week and completely regress the next. So he never was able to move on in his goals because he hasn’t reached the required amount of trials to do so. Occupational therapy was at a standstill as well, because they assumed all of his behaviors were sensory. (Which anyone would, sensory is a huge aspect of autism and he definitely has SPD.) Except they tried sensory technique after sensory technique and nothing seemed to stick. Anything we tried made minimal difference, and he never responded to it for long.

I knew in my gut it wasn’t sensory. I remember having a conversation with his Occupational therapist about how we think it’s “something else”. I brought it up to his doctor and he said yes, it’s all part of autism which is what we’ve been trying to treat. That didn’t satisfy me, and that whole year I literally lost my mind with anxiety trying to research and pinpoint what was causing it. I kept coming up empty handed.

Then, in September of last year, he had his first grand mal seizure. We were meeting my grandma at the gas station, and I was outside the car talking to her. Justin and the kids were waiting in the car, Malachi had fallen asleep. Justin thankfully looked back and he was seizing. I shudder to think of where we would be if Justin hadn’t noticed.

Finally our doctor would write us the referral to see the neurologist. It was there that we found out he was having seizures daily, multiple times a day. We started discovering a correlation between illness and regression, the first time being strep. Then it progressed to sinusitis and environmental triggers. We found out he has PANS, which is an autoimmune disorder where the immune system attacks the brain. At this point, the seizure medicine is controlling the seizures, but he’s having constant discharges (he showed us a 10 sec clip of his recent EEG and there were at least 5-7 of them if that puts it into perspective), which means that any sort of inflammation can bring on a seizure. If he gets the flu, if he eats something he shouldn’t, if he gets stressed out, all of those things have a potential to cause a seizure. He also informed us that the reason he doesn’t talk is because he has had constant, untreated inflammation in the area of the brain where speech comes from for a very long time. This makes it impossible for him to learn how to talk.

You would think all of our family and friends would be jumping for joy that we finally put our finger on it and we can finally start treating the right thing. Sure, we have a few good friends and very little family that are very supportive, but other than that everyone else has deserted us. When Justin was going to his first job at 6 am, working until 4:30, then getting at his next job to work from 5-12, people still scolded him for not mowing our lawn. When I was drowning in research way over my head, grasping to understand my son’s biological makeup without a trace of a medical degree, instead of supporting us they all thought we were crazy. We seen 3 different family doctors, over 10 different therapists, and an entire team of medical professionals in grand rapids and no one believed me that his case was different. Even the good doctors who tried to heal him medically looked at it as “healing autism “.

Malachi’s regression happened at 12 months, right after he had roseola and was also bitten by a plethora of mosquitos outside. Also at this time was when we introduced him to a world of foods we now know he has issues with. The overload was too high and the inflammation caused his immune system to go crazy trying to heal everything. He had strep on and off, ear infections, and was overall sick all the time. Also, he was regressing cognitively, because his immune system was attacking his brain. He slowly stopped playing with toys, he stopped smiling, he stopped sleeping. At one point Justin and I looked at each other and said “what happened to our son?”

I told every single medical professional, teacher and therapist I came into contact with that he wasn’t always this way. I said he was a happy, bubbly, healthy, interactive infant and there was a clear point things started to change. The response I got was “maybe you just don’t remember” or “lots of times you don’t notice it until they are older”. I spent all day every day with this child. I knew him. I knew him better than I knew anyone and I knew who he was. I still, to this day know who he was, and who he still is trapped inside.

Malachi was a happy go lucky child. He was goofy, and sneaky. We always chuckled about how he was “showboatin” because he liked to show off and be the center of attention. He smiled at everyone and was so eager to move around and be social, he nailed all of his milestones early. I remember it like it was yesterday, and I feel sorry for those who don’t.

When we went to have him officially diagnosed with autism, we drove to grand rapids and it cost us $1000. We did it so we could send him to ABA and our insurance would cover it. When we pulled in, it was around 8 in the morning and there were about 200 turkey vultures flying around the building. It was super creepy and I remember Justin mentioning how weird it was. It gave a dark feeling over the entire place, and at that point I should have just packed everyone back up and left. Getting him diagnosed was a mistake, because it caused everyone to stop looking deeper.

When he had his seizure, his health had regressed far enough to bring out a grand mal. He was having constant brain activity because the inflammation was just getting worse and worse. We had no idea he had allergies or chronic sinusitis. We had no idea he had chronic perianal strep. We didn’t look for any of these things because everyone had silenced me that he used to be fine. We assumed vaccines which, yes, that was a factor in the inflammation but there was also so. Much. More.

We don’t speak to family members we used to because they were so unsupportive we had to let them go. People kept telling us to “accept” that this is our life now and to quit “pouring money into a lost cause”. We were ridiculed for feeding our family good food, because we struggle financially (sometimes but not as much now) and we didn’t “need” it. (Even though it’s part of the cause of Malachi’s inflammation, and all of us have effects from inflammation). We have been called “dramatic” and “obsessive”. We lost friends because we can’t attend most events. We figured out finally what happened to him and what he went through, and we try to tell others and still they say we need to “accept it’s always going to be this way”.

If you had cancer, would you do nothing and accept it would always be that way?

If you knew your child was fine and then you suddenly lost them inside themselves, would you just plop them in therapy and the ISD school and move on with your life? Watching them in emotional and physical pain every single day and doing nothing?

We watched the move “Brain In Fire” on netflix last night, which is a true story of a girl who had autoimmune encephalitis and completely lost herself. In the movie she says “a system that is designed to overlook people like me”. That’s exactly what our system is. They are so quick to pin the term autism on anyone who shows the slightest sign. Why aren’t we checking for other things? If you bring up dietary intolerances to certain pediatricians , they will look at you like you are crazy. “There is no proof”. Except millions of mothers who watched the obvious changes in their children after removing it.

The system needs to change. If we would have found out Malachi had PANS when he was 12 months and gotten him the proper treatment, who knows where he would be today. If my pediatrician would have given me the referral the first three times I asked, maybe we would have caught his seizures two years ago. What is it they want us to miss? Why do they ignore things that could help our kids?

We will never stop fighting for Malachi. As always, if you ever have a gut feeling about your child, please fight for it. We are their best, and only advocates. These doctors, they won’t advocate for your kid . That’s your job. These schools, they won’t help your kid unless you fight for it. Kids get pushed to the wayside and swept under the rug in our society and it won’t stop until we make it stop.

Someone once asked, “If you could take it all back, would you?”
At the time I didn’t know. Now I do. I wouldn’t take that terrible experience back for anything in the world. Too much light has come out of my darkness.” -Susannah Cahalan ( author of Brain On Fire)

The Man Who Became My Father

My Grandpa is one of those men you picture when you hear the word “manly man”. He has worked hard his entire life, filled his freezer with food of all different types he has caught himself, heats his barn with a wood stove from wood he chops himself, and has had a truck he bought in ’91 brand new that still runs to this day. (Literally as old as I am). One of those men whom you know can fix anything you bring him, even a broken child.

I came into this world in May of ’91, and from what I hear Pa was smitten with me. A gruff man who is weathered beyond measure, who’s rough hands became soft while holding an infant. My mom brought me into the world on her own, and he gladly stepped into the role of male figure in my life. No one asked him to, he did it because he loved me.

As long as I can remember, I’ve had anxiety. Debilitating, at times . When I was a child it manifested itself as extreme fear of literally everything. We did a lot of fun things with my grandparents, and one of those things was cedar point. Pa absolutely loved cedar point. We used to go and stay at the campground with his brothers and our cousins. I remember being so terrified of literally every single ride except the junior Gemini, (even though I was like 9 years old) and instead of riding rides himself, which I know he wanted to do, he stayed with me while I rode the junior Gemini like 3 times. When we went there on Halloween he carried me through the haunted house while I buried my head in his shoulder. When everyone wanted to ride the haunted train and were clearly getting frustrated with me, he sat on the bench with me and waited for everyone to get back.

We lived with them for a while when I was really young, and I remember laying in my bed watching my mom pull out of the driveway after dark and sneaking into their bed because I was afraid of sleeping alone. They let me sleep in bed with them until I was ready to be done. When I was older I slept on the floor. I remember waking up next to Pa and him joking that I kicked him in the back all night. He was never angry, always smiling about it.

He taught me that I could do whatever I wanted, even whatever the boys did. I wanted to be just like him, and he hunted, fished and shot guns so that’s what I wanted to do. He paid for me to take hunters safety when I was 12 and went to my first class with me because I was nervous. As soon as I passed he took me with him to the sportsman club to shoot clay pidgeons, and even let me shoot all of his brand new guns. He never embarrassed me by acting like I was stupid if I didn’t know, he just calmly told me what to do differently. The first time I wanted to go hunting I was 14 and he gave me gear to use and a gun to use, and sat in the barn watching me every night while I went out. When I shot my first (and only) deer, he helped me clean it and cut it all up. He didn’t even make fun of me when we realized it was actually a button buck instead of a doe (oops. It was kinda dark okay?). He still has my boiled skull hanging in the barn in a Ziploc bag (because it was the only skull that ever fell apart). He taught me how to fish, and let me take his boat out with my friend to fish when we were in high school. He taught me how to clean and cook the fish. He taught me that I could do anything I wanted to do, my gender didn’t define my capabilities.

He also taught me how to drive a car. (We won’t say what age I learned that). Another time that he never lost patience with me, just calmly taught me what to do. He even taught me how to do a proper burnout (in Granny’s car, she wasn’t thrilled). When I turned sixteen he gave me his ’91 Chevy Silverado and I drove it to school every day for a year until he bought me a Chrysler for my graduation present.

He taught me that money was something you earned, and that respect was important. I remember the only time he ever got seriously mad at me was when I lied to him. It made me realize that honesty is important. That is a lesson I will definitely pass on to my kids.

Even into adulthood, Pa just understood what I needed. I don’t tell him a lot about my struggles anymore, but he always gives when I need it most. Everyone else had a hard time knowing how to connect with Malachi and were unsure what to do. Pa never did, he just gets down and plays right next to him without question . He always acknowledges him and never gets offended if it isn’t reciprocated. Even more importantly, he doesn’t push it.

Thanks to him I knew what it was like to be unconditionally loved by a man. I made bad choices while trying to find myself, but underneath I always knew what I deserved, and that’s because he taught me. I never liked the “it takes a village” saying, but it did take a village to raise me and I’m so glad it did.

Growing up we were always asked to answer the question, “who is your hero?” My answer was always Pa. Pa was always my hero, and to this day that still remains. This father’s day I want to honor the man who filled in the role that desperately needed to be filled. The Man Who loved me when I needed it the most, who helped set the foundation for my unconditional, patient love for my children.

Happy Fathers Day, Pa. I’ll never, ever forget what you’ve taught me πŸ’œ

Seizure/Sympathy Awareness

Malachi has an in-home 48 hour EEG this week. Our guy hooked it up around 11:30, so we spent the afternoon out and about to kill some time. As usual, I was struck by how different people looked at us. Sad eyes and sympathy everywhere you turned.

The machine is sort of obnoxious, and the back looks very robotic. It looks like a lot more than what it is. Plus, he had this sweet Ana and Elsa backpack to carry it in (because we have no other small backpack) so maybe he was getting some sympathy for that instead.

I always feel odd after going out in public with the machine. The very first time I thought “wow, so this is what it feels like for the world to believe your child has an injury”. The first time it felt kind of nice to get sympathy stares instead of people looking at us like we are odd. Or someone asking him a question and thinking hes rude for not answering.

Except my son is sick when he isnt wearing the machine too. The machine is to monitor how many seizures he is still having so we can adjust medicine.

When we first found out that Malachi was having seizures, there was a lot of guilt. Why hadn’t we caught this before now? All the times I had sat and wondered what was causing these behaviors, all the times we strapped him into sensory devices, the time in his short stint at preschool when they strapped him to a chair (i pulled him after that), all the times I became frustrated over his hyperness and lack of sleep. All of that guilt hit me pretty hard.

That entire time, it was seizures. The seizures on the EEG correlated with the extreme hyper episodes, and also with the night wakings. The dramatic decrease in hyperness once we started treating the seizures was unbelievable. Nothing he had ever done was his fault. It was medical.

When you think of a seizure, what do you think of? Someone on the ground convulsing? Someone becoming unresponsive for long periods of time even if you pinch them? That’s what i thought too. The fact is, seizures can present themselves in a multitude of ways. You could actually have a seizure while talking to someone and neither of you know it happened. Some seizures present themselves as the person just aimlessly waking around the room. Sound familiar?

This is why it is important to show sympathy to all children. If we would have locked Malachi in his room amd let him cry to sleep, he would have been in his room having seizures alone. If we would have continued preschool, he would have sat in a chair, strapped in, having seizures.

Realizing that so many kids probably have undiagnosed epilepsy, or that kids cry alone in rooms seizing, or even that kids get spanked from behavior that resulted from a seizure, is a really heavy emotional load. It could happen anyones child, it did happen to mine.

Please always give your children the benefit of the doubt. Dont let society tell you your tiny child who functions on basic biological needs is trying to manipulate you. Always assume they are, in fact, crying for a reason. If your child has behavior that seems out of their control, please demand an EEG. Seizures are so misunderstood. Some kids go years undiagnosed, don’t let your child be one of them.

Getting Out Of LimboΒ 

One of our favorite past times is going in our bedroom in the dark and playing with flashlights.  Malachi and Olyvia like to shine them on the wall and make movements with their shadows. When Malachi isn’t flaring, he sometimes will copy my bird shape with his hands. He will hold the flashlight facing the wall while we make cool puppets. Both kids really enjoy playing with flashlights,  and it’s fun to have an activity we can all do together. 

When Malachi is flaring,  he will ask to play with the flashlights,  but when we go into the room and turn off the lights, suddenly Malachi isn’t shining the flashlight at the wall anymore, he is laying on the floor humming and shining it directly in his eye. He is obsessive about this, and no matter how many times you redirect it goes right back to his eye. We have to end the flashlight game early, because he can’t control his obsession with shining it directly in his eye. Both kids are crying.  Olyvia is crying because she doesn’t understand why just a week ago we could play the flashlight game and it was fun, but now this week we cant.  Malachi is crying because he doesn’t understand why last week he had so much self control and now this week he has none. So then he resorts to stimming to cope with the fact that he is randomly out of control of his body and doesn’t understand it, and can’t ask questions.  

We have mistaken a serious illness for autism. Malachi’s immune system doesn’t work right, immunocompromised if you will, so there are triggers that cause his immune system overwork and attack his brain. We beleieve chronic undiagnosed strep is a huge trigger, but it could be anything. Pollen, mold, certain foods, a plethora of viruses that never left, dust, bacteria, anything at all that could potentially hurt a weak immune system. 

When he isn’t flaring, Malachi is the sweetest kid on earth. He cuddles, plays appropriately with all of our toys, laughs with Olyvia, sleeps well, rarely stims, pays attention to what we are doing,  and will even occasionally try a food he hasn’t in a while. A lot of times I will say “I swear if he was talking I’d say he’s typical right now”

When a trigger is present,  (which is frequently because we just started addressing infections and paying attention to patterns) Malachi loses control of himself.  He can’t sit still, he obsessively eats non-food items (PICA), he pees frequently, his SPD is really severe so he acts like his clothes are burning him and he can’t keep them on, he refuses to eat most things, he has a hard time falling and staying asleep, he gets terrible stomach and head aches, sometimes when he pees he acts like its burning him, sometimes he gets so worked up he accidently will bite one of us.( That’s the worst, because he acts ashamed afterwards because he doesn’t have an aggressive bone in his body) He literally turns into a completely different child over night.

Sometimes this lasts days, sometimes it will last a week or two. Our life has to flip flop, because things we could easily do the week before, we cannot this week. I can’t stand leaving the house while he is in a flare and people acting like he’s crazy,  or out of control,  or weird.  He cannot control himself, his immune system is attacking his brain. He needs love and he deserves pity, not repulsion.

We have become withdrawn, because we have to find out what triggers him to have these reactions so we can give him proper medicine. I believe his initial onset of PANS/PANDAS was before he was able to talk, and he has been progressing/regressing on and off with the triggers ever since. Now I feel he knows what he would like to say, just isnt sure how to make himself say it; his body doesn’t cooperate. Now that he is older and more aware, I think there is a lot of anxiety for him when it comes to talking. We set up a mirror in the living room and I see him mouthing words to practice often. 

Unfortunately, he is not speaking yet, which means we have to observe him and record everything if we are ever going to find his triggers. We have to heal every health issue we can find, because he cant tell us he has a stomach ache. He can’t tell us he has a headache. 

We are working so hard. Justin works hard to provide for us and then comes home and jumps right in with me. We stay home most of the time and try to be as relaxed as possible. Olyvia is quite mature for her age, and her and Malachi have a pretty decent relationship. It helps we stay together as often as we can. We actually have a lot of fun together most of the time, it’s just the flaring that is difficult because it is the most depressing thing I’ve ever seen and we feel horrible for him.
This is one of the most unorganized blogs I’ve ever written, but also the easiest way to tell everyone that cares why we are keeping to ourselves a lot right now. Sometimes I feel like I’m treading water in the middle of the ocean, but I know we are so close. Since we have started treating the strep with antibiotics we have seen a lot of improvements in him. I know that we will continue to see more! 
Thank you all for the support.  πŸ’™

Phase Two

It’s been a while since I’ve written a blog that is strictly a Malachi update, and I thought now would be a good time because we just had a doctor’s appointment with our neurologist and learned a lot more information.

It seems we have made the transition from “biomedically treating autism” to “there is something  actually seriously medically wrong with my child “. Before, my understanding was that autism had a lot of underlying contributors, so you just work at them one by one and you see what makes a difference and what doesnt. Some parents start probiotics and their kid begins to talk. Some stop gluten and their kid quits stimming. Some parents begin B12 injections and their kid loses a diagnosis. The underlying cause is different for everyone,  so essentially you treat each thing and see what improvement you get until they are healed. Some people do testing, some people purely go by Behavior. There is a science to this, and it isn’t made up. 

So we were doing all of these things with Malachi, and we started to see a lot of improvement. It seemed that he was following directions and he seemed generally happier than he did when we started. (Which I now believe was mainly due to the change in his diet.)  He also would say a few words here and there , and he was really progressing in therapy.

It was frustrating though, because we would see so many improvements, but then suddenly we would have a week where it felt like we jumped back two years. He would be stimmimg more, would refuse to do things in therapy, would become obsessive over Sweets and his iPad, would virtually seem like we couldn’t reach him. It was here that my PTSD would kick in, and I would start freaking out thinking that we haven’t even done anything and that something we were doing was causing him to go backwards .Then suddenly it would go back to normal and he would act fine again. So then I would think okay, it is working maybe this is just die off maybe this is just part of the process. Then sure enough, we would go backwards again. So this puts a lot of emotional strain on us and our family. Thinking your kid’s getting better and then he regresses, then you think he’s getting better and then he regresses. It’s really hard to know what the right route is to take, because I have a good understanding of what we’re doing, but at the end of the day the thought creeps and that I’m not a doctor. But unfortunately trusting a Dr is mainly what got us into this situation in the first place, so I have to be my child’s advocate and I have to be as knowledgeable as I possibly can be. Which is where google, Facebook groups, and friends of mine come in.

Then, just when I was about to lose my mind and I wasn’t sure what to do, Malachi had his first grand mal seizure. We took him to the ER and found out that he had high amounts of brain activity on his EEG. Then, we started dealing with epilepsy. Initially we believed that was his first, but upon further research we found that he probably had been having seizures for a long time that we weren’t aware of. There is a type of seizure called an absence seizure, where the person can simply stare off into space and be having a seizure. Actually, if you research types of seizures there are a lot of different kinds that a child could have that you would not even know about. Which, with a child who is nonverbal, that could be easily missed. So we started him on a seizure medicine, and we got an appointment with an integrative neurologist in Pontiac. 

So they did a bunch of blood test, and sent him home with an EEG strapped to his head that we kept on for 24 hours. Today we went back and got the results of everything and now I finally have an understanding of what is going on with Malachi. 

Sometimes in the evenings Malachi will randomly get extremely hyper. I’ve tried limiting the TV or leaving it off entirely, I’ve tried doing quiet play, I’ve tried making sure he eats no sugar whatsoever after a certain time. I’ve tried to swing him in his therapy swing, I’ve tried weighted vests. We have tried melatonin, nothing has worked. Then also, sometimes he will jump up in the middle of the night between 1 and 3 a.m. extremely hyper when he didn’t even go to bed until 10 the night before. Which obviously is not enough sleep. Again, nothing we did made any difference in this. Blackout curtains, fans in the room, White Noise everything you can think of. Today, our neurologist showed us on the results how at those times when he had the EEG on and those things were happening, his brain activity was off the charts. I could see on the results normal brain activity all night long and then suddenly at 1 a.m. it was all over the place.

What this means is, Malachi has a genetic susceptibility that causes him to have a weaker immune system. So at some point in his life he contracted a virus that he couldn’t get rid of. The virus may not show any obvious signs that it is there, his nose doesn’t even run when he has a sinus infection, and it flares up at random times, causing his immune system to overreact, attacking his brain. Which is where all of this increased activity comes from, And also why it didn’t seem like anything we were doing was working, because nothing was getting rid of this virus. That’s where the sensory processing disorder comes from, and that’s why it waxes and wanes. 

Right now we are not sure what the virus is or how we are going to treat it. The first thing is to stop the abnormal brain activity, so it doesn’t result in more seizures. To do that we have to increase his seizure medication. Also, to clear out his sinuses because there’s probably lots of stuff that’s stuck in there that’s been there for quite some time. We’re stopping most supplements, and adding a couple different ones. Just to get him to be sleeping better and get him in a good mood so we can begin treating him.

Do I think everything we have done up until now was a mistake? No I do not. I just think that maybe it wasn’t as effective as it could have been, because the underlying virus does not allow his immune system to get better. So, we must get this brain activity under control before we can heal him. Which is what we are going to begin doing. 
Do I still feel vaccines played a large role in my son’s autism? Of course I do. Weather the virus came before the vaccines or not, his immune system was weaker and we didn’t know. Which means that he wasn’t able to handle the insult the vaccines had on his immune system. Whether it was busy fighting a virus and that was why, or whether it was just too weak to begin with, he had reactions to the vaccines because his immune system couldn’t handle it like a normal person. Every single insult he has ever had to his immune system since then has made his health worse.

Either way we’re not giving up the fight. Right now, getting him healthy is what’s most important. Which is why we decided to put off therapy, and even School. Keeping him home with me and keeping him comfortable while we treat him is the best thing for him, we believe. Also, it just gives me the chance to be a mom again and take care of my kids. Play with them, do normal things instead of running around all the time. Take a step back while we address Malachi’s health, and possibly mine too. 

One thing that I want to reiterate is how important it is to trust your instincts when it comes to your children, and never be afraid to dig deeper. We didn’t know Malachi had a weak immune system until it was too late. If your gut tells you there’s more to what your doctor is saying, dig deeper. Don’t let someone tell you that using Google is stupid. Don’t let someone try to convince you to just listen to your doctor and not research yourself.  Every single thing you do matters. Don’t let society, or anyone else, tell you how to care for your kids. Love them, advocate for them, and let them be who they are. 

Until next time …..πŸ’™

 

I’m SorryΒ 

I’m sorry we didn’t make it to your kid’s birthday party. 

We had full intentions to go, honest . Except the night before Malachi or Olyvia (or both) took late naps after a long day of therapy and were up until midnight bouncing off the walls. Justin and I probably spent the entire night shooting dirty looks at each other if the other one so much as looked like they were even trying to sleep.

Then, because of whatever reason, the morning of the party one of our kids was up at 6 am. (After staying up until midnight,  mind you). So, not only are we operating on very little sleep, but now we are also stressing out because our kids didn’t get near enough sleep which will either result in them eventually losing it or another late nap. Which means repeating that entire night, again. 

Not to mention, my kids and I all have celiacs disease. Which means even little amounts if gluten really messes us up big time. So worrying about what is going to be available to eat is huge. Sure, we bring our own stuff everywhere we go and we don’t expect anyone to make us anything special, but will there be a massive tray of cupcakes sitting at a table that’s eye level to my son? Will I spend the entire hour or two that we are at the party trying to keep him away from the cupcakes? Because most likely that is the case. And I’ve dealt with it at enough birthday parties to know that I’m really not trying to do it again.  Especially after a late night/early morning. 

I’m Sorry we didn’t make it to the family gathering 

Let me start this one off by saying that, contrary to what a lot of people may believe, we really truly want to attend these gatherings. It isnt some ploy that we come up with to get out of socializing because GOD KNOWS WE NEED SOME FREAKING SOCIALIZING. 

However,  I have also been to many family gatherings and I know how these things work for us. People try to talk to us and we have to run away after half a sentence because one of our kids is, again, going for the cupcakes (or whatever desert you can think up). Or running out the door. Or trying to tip over the tv. Or falling off the table and bashing their heads. Literally Justin and I have to each take a kid and chase them around the entire time we are there which means zero socializing and a lot of physical activity. Why? To make an appearance? So people know that we were there? So they can get a glimpse of our kids? 

Here’s an idea come over to our house. Then you can see the kids in their own environment and they probably will actually pay attention to you. Then you can actually have a conversation with us instead of watching us chase them around or hold them while they cry. It’s miserable for them, and it’s miserable for us. 

Also, Justin works. He works a lot. (Somehow he works a ton and it’s still not enough but that’s another blog post) sometimes if we want a whole day together we have to request it off. A lot of times, we can’t afford for him to request it off. Most of these events he has to work. And No. Way. In. Hell. Am I doing everything I just mentioned alone.

I’m Sorry I Finally Quit Putting Up With Shit From You. 

If you are one of these people,  I apologize. I spent my whole relationship with you putting your feelings ahead of my own. Forgiving you for lying amd manipulating. Forgiving you for flaking when I needed you most. Putting up with dramatic situation after dramatic situation because I really cared about your well being more than my own. I really was willing to let you suck the life out of me if it meant you were okay. 

Well, this year I realized I need to be well In order to run a happy, successful household.  This last year I’ve stood up to the masses. I’ve stood up to doctors. I’ve been looked in the face and told that my son’s medical care was not good enough and that I was “confused “. I’ve chosen a path that is so overgrown that i need every ounce of strength I have to get through it. 

Which means there is no room left for you. 

You we’re sucking valuable emotional strength from me that I need to emotionally support this family. I spent a lot of my life loving you and trying to be there for you, and I just can’t any longer. 

I’m sorry I didn’t answer your call

These days Malachi is beginning to imitate Olyvia. Which is awesome!!! Except Olyvia is in a very serious attention seeking stage. She’s going through a lot of heavy emotions, and she really needs a lot of attention from me, and she really needs a lot of help working through those emotions. So my days consist of her constantly testing the waters. If I even take my attention off of her for a few minutes, she’s doing something naughty to try and get it back again. I know this is normal, because I remember Malachi going through  the same stage at the same age. However, now that she’s doing that and now that he’s starting to imitate, he is also doing all of these attention-seeking behaviors. So in reality it’s like having twins.

Which means talking on the phone is quite literally impossible most of the time, and honestly I feel bad doing it. I spend so much time on the phone with doctors, giving and measuring supplements, organizing and prepping food for special diets, doing dishes because I cook everything,  and attempting to maintain a relatively clean house that I feel guilty being on the phone ! All of those things I must do and giving them attention while doing them is pretty difficult. So ignoring them even more while I’m on the phone with you is not something that I’m going to do. Not often anyway. 

I know that it may seem like Justin and I have became completely unsocial in the blink of an eye. I know it may seem like our absences are “convenient ” or “planned”. What you must understand though, is nothing about our life is convenient or planned. We changed quickly because our life changed quickly. And all we’re doing is trying to manage it the best we can. Please know that we do feel guilty about the things that we miss. We do feel guilty about all of the decisions that we make that may negatively affect someone outside of our family, But also know this: our family must be our number one priority at this moment in our life. Maybe one day we will be able to do all of those things again with ease. Maybe one day we’ll be Social Butterflies like we both secretly long to be, but at the moment our place is here at home. 

As always …..πŸ’™πŸ’™πŸ’™ 

My Exitus

Last year we were rocked with the news that our child was sick. We grieved the loss of the life we always thought we would have, while trying to adjust to a new one. I learned a lot about myself last year, but this year, I’m learning a lot about you, society. 

My son is non-verbal, which means that he does not speak in words like you or I. I have learned that, to society, this means he simply has nothing to say. Furthermore,  people believe it must mean he has no significant thought processes, no yearning for communication.  This couldn’t be further from the truth. 

Society has became so busy, and so reliant on speech and media alone, that we have lost our ability to pay attention to detail. You say my son is refusing to communicate with you, but while you were on your phone you missed the eye contact and half smile that spoke a million words. While you were busy talking to someone else, you missed my son say his own form of a word.  You missed that he was looking at you and trying so desperately to tell you something.  While you were busy trying to snap photo after photo,  you missed that he looked right into his sister’s eyes and smiled. 

All we are is media. I’m guilty of it myself! Facebook is set up so that we are able to see whatever we want to see. If we are curious about war and politics,  that’s all our feed is filled with. If we are into debating vaccines, that’s all our feed is filled with.  As your interests change, so does your feed. You become angry and hostile about things you want to be angry and  hostile about. You literally create your own world, we all do, that we believe is truth. Then, we get caught up in it. 

Children are so primal. They learn so much about the world before they ever even learn to speak. They learn quickly that we always have a phone attached to our hand. They learn quickly that, to get us away from our phone, they must act out. They must misbehave to gain attention that we should give them without question, but don’t because we are sucked into media instead. Our minds are clogged with the the five different conversations we are having on messenger.  We are trying so desperately to be polite and social and converse with our friends online, we snap at our kids for trying to play with us “because can’t we have just a little time to ourselves?!” In reality that time is all day. That conversation drags,  all day. 

For what?! Why? For us to be stuck in a world that we create? For us to be in constant communication with people that we barely know while we ignore the ones closest to us? We operate under the guise of “advocacy” and “sharing and gaining knowlegde”, but for what price? Is our hunger for more and more knowledge really worth the strain it puts on our relationships? Is it really worth what it is doing to our kids? 

We are addicted. All of us. We share every waking moment of our kids and our lives on media so that we get likes and comments. We all have our heads bent down staring at our phones, watching YouTube videos while the world around us deteriorates and we dont even notice! We post about wanting to help the world and wanting to spread awareness for certain things,  but what are we actually doing to help? How can we be helping when our heads are in our phones?  

Our houses are messy because we read blog after blog about how it’s “Okay to let the house go” because we just have “no time with the kids” but what if you took all the time you spent on your phone in a day  and spent that same time cleaning? Your house would be organized and in turn you would be happier. 

Why are kids entitled? Why is this generation of children the “worst we have ever seen”? Everyone cries that we don’t spank them enough and that’s the problem,  but I beg to differ. The problem is,  they are ignored. They don’t know how to be social because no one has ever taught them.  They have grown up attached to media! Parents want to be on their phones, so they turn on the tv for thier tiny babies and then eventually buy thier kids their own phone.  These teenagers have grown up living in their own social media world that they have created

 What if, instead of arguing on Facebook, instead of replying to comments,  instead of checking our Instagram feed, instead of texting all day long, we took all those oppportunities to teach our kids? What if we had all that time to clean and organize our houses? We could take our two year olds and give them a broom and take a half an hour to sweep the floor. Instead of having five quick minutes and then yelling at them for getting in the way. 

I love updating  everyone on our family. People care, and I love that.  However,  I’m sick of people just caring online. What about in real life? What about coming over and seeing for yourself? I’m done with it. I want to go back to the basics. I’m trading in my “smart” phone for an older phone. We are going to eventually acquire a computer so we can have access to the internet once in awhile, but not at our finger tips. Unplugging is the only way I feel we could ever truely be happy. The only way I can be the absolute best parent I can be. The only way I can give my family the attention they deserve. 

If you are curious about how we are doing, schedule a time to come over! Call me. I want to communicate a more natural way, and trust me I want my kids to be social πŸ˜‰ 

I think people are amazing, I just think we have lost our ability to be free. We are bound by media and it’s impossible to live our lives. Let it go. Let yourself be free. πŸ’™

To the House (and Woman) That Built Me

For so long I have wanted to give you the credit that you deserve for the impact you have had on my life. The part you played has always been silenced so we could appear to be a “typical” family. I have never publicly given you gratitude for what you have done for me for fear of hurting the feelings of others. Today, I am giving that to you, Granny. 

You cared for me as if I was your own from the very beginning. All of my favorite memories of my childhood were with you and Pa. Camping on the infield, pulling sleds behind the fourwheeler, running wild in the field without shoes. I remember when I was young and we lived with you, I would watch my mom pull out at night in my own bed and then sneak into bed with you. I had a different life than most growing up, but I always knew I was loved, and that is because of you. 

I remember when all the cousins would come over and stay the night, and you would make us all a huge breakfast in the morning. I remember when we came in from sledding you always had brownies and hot chocolate ready for us to eat. I remember being so terrified of Pa’s speedboat that we would just float all the way from the boat launch to the island. You guys would do it with smiles on your faces, even though I knew you were dying to go faster! I remember trips to cedar point, and Pa carrying me through the haunted house when I was way too big to be carried because I was terrified but we had to go through. I remember when I was young I was afraid of everything, particularly being alone, and you guys never left me alone. Ever. 

Granny, you are the single only person in my life who has stuck by me the entire time, no matter what.  Since the beginning, it has always been you. No matter what I did, or what I said, you were always there to cheer me up. When I ran away from my mom’s house at 17 you supported me because you understood. When my relationship didn’t work out you were there with open arms and a bed for me to sleep in. When I took too many ativan and ended up in the hospital, you nursed me back to health on your couch for an entire week. I rememeber that was always Pa’s dinner spot on the couch, and when I woke up in the middle of my stupor he was eating his dinner next to me on the floor. 

I remember when my drinking was at its lowest point, you always were checking up on me. You called me an obnoxious amount of times when I wasn’t home, even though I told you not to. Even when I was mean and yelled at you, you still called me to make sure I was okay. When you found all those empty bottles of whisky and vodka under my bed, you didn’t yell at me, you didn’t kick me out. You just picked them up, threw them away, and listened to me with an open mind. Then you offered me your car to take to substance abuse counseling because I wasted all my gas money to fule my addiction. This July will be 4 years sober for me, and you helped me get here. 

I remember you were the third person I told that I was pregnant with Malachi..i still lived with you and you went out and bought me a bunch of healthy food.  You asked me about every appointment and were super supportive. You were the first person to tell me you were proud of how far I had come. 

Through everything in my life, I have always been kind.  I have always known how to love, because you loved me. I grew up going to the grocery store with you and watching you say hello to everyone we passed by. We can’t go anywhere in Brooklyn without you seeing someone you know, and they all absolutely love you. I don’t think you have an enemy in this world. When we go out in public, I watch Olyvia wave and say hello to everyone we pass,  and I smile inside every time because I know that comes from you. She learns it from me, but it comes from you. 

You taught me how to be humble.  We never needed more than what we had because we had love. Sure, we weren’t poor, but we weren’t rich either. Your house is my favorite place on earth, because it is home to me. When I pull onto Wheaton rd in the summer, my windows down, country music blaring with my bare feet, I feel it. When I walk through the front door, and hear you call out “hi!!” I forget for a moment that I’m an adult. For a second, I’m 5 again and I half expect you to have cookies on a plate waiting for me. I half expect Pa and Uncle Mark to be in the living room arguing over whether  Dale Earnhardt or Jeff Gordon is better. Then I snap back to reality because I see my kids run and jump into your arms. I see Olyvia yell “hi Pa!!!!” With a big grin as he walks up from the barn. 

I guess what I’m really trying to say, is thank you. Thank you for being the person you never had to be. Thank you for making me, me. Thank you for giving us random food when you know we wouldn’t ask for it. Thank you for being there for me when no one else would. For my highest of highs and my lowest of lows. You are my absolute best friend. πŸ’™