Simplicity Redesigned

My journey to simplify my life began almost 6 yrs ago in a Baltimore hospital, listed in critical condition. In other words….I got a wake up call from the Universe and I listened to every word of it. I hope you join me in my journey. I am passionate about cooking, real foods, and simplifying my life. I am learning all I can along the way. My life is Simplicity Redesigned….

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Blink of an Eye

Blink of an Eye

Thanksgiving 2018, began as a normal holiday in my home. Amazing food, company, and the promise of Xmas shopping plans. My in-laws came in to enjoy the fun with us. Reine had been acting slightly off. I thought it was just all the excitement of the holiday, my in-laws, and Xmas shopping. On Black Friday, things went from fun to very serious in a “blink of an eye”. Literally. 4:00 pm I walked in the…

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September 19, 2018, is a day that our world changed. Reine had a tonic-clonic seizure in my arms in the middle of the night. She was diagnosed on October 18, 2018. She was placed on medication as soon as she was diagnosed with epilepsy to help try and control them.

I had a lot of information thrown at me over the weeks that followed her first seizure (that I witnessed). There were phone calls, family history taken, tests ordered, appointments all over the place. I was researching things and had so many questions. For every question I had, I was asked 3 more by Reine’s specialists and doctors. I was clueless about the questions I was being asked. I felt stupid and helpless. Neither one I am comfortable being.

Common tells in neurotypicals

Odd feelings, often indescribable

Unusual smells, tastes, or feelings

Unusual experiences – “out-of-body” sensations; feeling detached; body looks or feels different; situations or people look unexpectedly familiar or strange

Feeling spacey, fuzzy, or confused

Periods of forgetfulness or memory lapses

Daydreaming episodes

Jerking movements of an arm, leg, or body

Falling

Tingling, numbness, or feelings of electricity in part of the body

Headaches

Unexplained confusion, sleepiness, weakness

Losing control of urine or stool unexpectedly

When I asked about seizure tells for those on the spectrum with Reine’s types of seizures I was told she wouldn’t have any. Once again I felt helpless. How was I supposed to help her and I navigate this??

We were missing medication doses even though I had alarms set. If we were out of the house or someone shut off the alarms before the meds were taken she missed doses. I  was forgetting questions I needed answers to because there was only so much my brain could retain at once. I was also supposed to be monitoring her side effects from the meds. Everything was scattered in various notebooks and misc pages. Enough was enough.

I created what I call Reine’s Seizure Journal. My husband rolled his eyes when he first saw it. However, it proved to be invaluable for myself and for Reine’s specialists and doctors.

Her journal consists of a yearly glance with her seizure activity, monthly calendars, daily medication trackers that also have her current doses as well as when she began taking that dose. The dates of the progression of meds and any side effects from the meds. It also has a daily journal , trackers, and a notes section for questions/answers/information.

In the beginning, I was using monthly inserts with just enough weeks in them for that month. It became apparent that this was not going to work long term pretty quick. Reine was hospitalized in November of 2018 for several days. Pulling out 3 different inserts to answer their questions was getting the job done but not efficiently as I wanted. When you are in a hospital setting, their time is short in your room. They want the answers or your questions quickly so they can move on to the next patient.

I started using a Japanese planner called Hobonichi Weeks Mega for my own personal everything planner in February of 2018. I love everything about this planner. From the size, the layout of the planner in general, the ability to change things up in the weekly portion, the notes section (that gave me the ability to section off into other things), and that it was a full year in one book. Took me a hot minute to realize that this would also be absolutely perfect for Reine’s Seizure Journal as well but I did not need the over 250 pages of notes in the back. I decided to use a regular Weeks because it only has 69 pages of notes in it. I have spent the past 2 weeks slowly transferring everything from the monthly inserts and the bullet journal system I have been using since December of 2018.

The Setup Yearly Glance Pages I use the yearly important dates pages as a way to see Reine’s seizure activity quickly and all in one place.

Monthly Pages I use the monthly calendars for 3 things 1. Seizures 2. Medication tracking (along with medication and dosage information) 3. Upcoming neurology appointments

Weekly Pages Weeklies are for a quick daily journal and tracking information. Because of the daily journaling, we (doctors and I) saw that Reine does have tells for her seizures and we learned that she has 5 different kinds of seizures. I use the left side of the weeklies for a quick daily recap of her day. The right side of the weeklies have a tracker that I use for her tells with ample space for me to write any notes about the day that I think is very important. I also write when someone is sick in the house. Reine’s white blood count is lowered with the medication she is on. Any illness/seasonal allergies can lead to increased seizure activity). The journal allows me to see when she needs something more from me (like extra patience, extra snuggles, help with communicating her needs, ramping up for her tonic-clonic seizures).

Note Pages This section will be used for any questions I have along with their answers, any research I have done or need to do, and anything pertaining to any testing or hospitalizations that Reine has to have.

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With everything laid out like this, I am able to see patterns, answer any questions, ask my questions and write my answers down and have everything in one easy to grab “book”. Reine’s doctors and specialists have even taken my inserts and books to quickly show other doctors and even parents them in hopes that others will do something like this in the future.

Reine’s Seizure Journal…September 19, 2018, to Present. September 19, 2018, is a day that our world changed. Reine had a tonic-clonic seizure in my arms in the middle of the night.

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When Regression Means More Than You Realize

When Regression Means More Than You Realize

Something changed in Reine in August of 2018. It seemed to come out of nowhere. She just woke up one morning and became a completely different person.

Reine started to pee her bed at night and herself during the day. She became disoriented and “zoned out” a lot. Her ODD tendencies flared without provocation and she reverted back to where she was before behavioral therapy. She was unable to…

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Disclaimer: I have read, heard, and cried at the many many many stories about ABAs, Behavioral Therapy, and the abuse that occurs within the autism world. I have had friends that left Behavioral Therapy because of the treatment of their children by the therapists. At no point was punishment a part of Reine’s therapy. I was never asked to sit in a different room while she was in her sessions. There was never a hand laid on her by myself or the therapist at ANY time nor was it suggested. Nothing was withheld from Reine as a form of discipline or punishment.

Before you blast me with hate emails, negative comments, etc I hope you take the time and read about OUR experience. I have no doubt that we were “lucky” with our therapist. Not all Behavioral Therapists are the same. Ours happened to be extraordinary! I was given permission to post the pics of our incredible therapist with Reine.

The hardest part about therapy is when it ends. You are left on your own, hopefully, with all the tools, you need to be able to navigate the world around you better than when you went in. It is scary when you leave the therapist’s office for the last time.

In January of 2017, Reine began Behavioral Therapy for Oppositional Defiance Disorder (ODD) tendencies.  She was not officially diagnosed with ODD because I stopped almost all contact with the outside world not allowing her to hurt non-family members. I was too afraid of having the police/Child Protective Services called on us or being sued if Reine hurt another child.

Behind closed doors, we were living in a nightmare that seemed to be endless. We were unable to open windows because of the constant screams of anger that erupted out of nowhere or the intense meltdowns that sounded like I was physically hurting Reine to anyone passing by our home. There are holes in many of the doors and walls, door jams splintered, paint scraped off down to the drywall, and so many smashed toys. What seemed like endless bottles and tubes of shampoos, conditioners, dish soap, hand soap, lotions, deodorants, body washes, toilet paper, wipes, and spices to name a few, were being replaced weekly because Reine would hide and empty the contents. Bedroom doors had to be locked at all times. Dinner was started at around 7-8 pm because I could not keep an eye on Reine and cook food at the same time. I refused to accept that this was our lives but in reality, it was.

The Developmental Pediatrician and I went head to head twice in the battle of Momma vs Doc (who sees my child once a year for roughly 10 minutes) when I refused to put Reine on medications, instead, begging for a behavioral therapy referral. The Doc thought that meds were the answer instead. Needless to say, I won this round. We were placed on a 9+ month waitlist twice thanks to issues beyond our control.  I knew in my soul that medications would not solve Reine’s issues, they would only mask it. I wanted to know what the disconnect was that was happening between her and us that was causing the behavior. I wanted the tools and strategies that we needed to correct it.

The day I got a phone call telling me we finally were given an appointment to see someone in behavioral for an evaluation, I cried. I had so many expectations riding on this one appointment and this one therapist. During the evaluation, I laid everything out on the table for the therapist. I do mean everything. If this woman was going to help me, I felt she needed to know it all. I had no one left to turn to for help with the nightmare we living in at that moment, except for her.

After I told her everything, I heard the words that completely and utterly changed my life… “We can do this.” I left that evaluation in tears. I had no idea what to expect beyond this meeting but again, my gut and soul were telling me that this was one of the many missing pieces between Reine’s world and ours. I knew I would give it everything both Reine and I had and then some to help both of us escape the hell that was our lives.

For 10 1/2 months, I drove an hour (sometimes more depending on traffic) one way, almost weekly, for Reine and me to meet with Christine. This petite, beautiful soul of a woman. As I write this, I am in tears. I know that Christine has no idea of the full impact that she has had on my family. I don’t even know how to repay her for everything.

We began with the small stuff that we could easily navigate through first and make solid, quick changes that would be easier to piggyback other more difficult behavioral changes onto. Every session meant homework for us. I took every single thing Christine gave us and implemented it in our daily lives immediately. Some of the things, I am not going to lie, I thought they would never work. But I still did it. I customized what I needed to for Reine to adjust and adapt to make it easier (always with Christine’s knowledge and OK) making it a part of our daily lives. Each day got a little bit easier. Each week got a little bit easier.

Some of the things we did with Reine…

Timeout Bench This was a dedicated bench for Reine to use for timeouts only. When she did something that was not acceptable she was placed or told to go to her time out bench where a timer for 2 minutes was set. This was for her to take a breath as well as us. There was no berating, freaking out, lectures etc. We told her in one to two sentences that her behavior was not acceptable and why. When the timer went off, she came out of the timeout and it was not mentioned again.

My Way, Your Way Cards These cards are used with a timer so that not only did Reine learn that there was more than one way to use something or do something, but to also take turns.

Wait Timer This is a timer we use for her to see a visual countdown so she can wait patiently for someone’s immediate attention. We set it for no more than 3-5 minutes. When the timer goes off, we stop immediately and listen or do whatever Reine needs.

Charts I created several charts for Reine to use that helped her to see things visually but also as a way for her to see the information she was asking me about over and over again.

How Long Until Chart and Calander This set is used to help Reine see a visual countdown until someone comes home, visits, we go on vacation, or for an event.

Ask Mom Chart This chart was amazing because it allowed me to set a number of times Reine was allowed to ask me the same question over and over and over again. It showed her visually how many times I would answer the question before I stopped answering it.

Expressing Wants and Needs Chart This is a reward chart. Each time she expresses her wants and needs to us in a positive way, a circle gets filled in. If she doesn’t then a circle gets unfilled in. When the chart is completely filled in, she gets a reward. The reward is something she really wants. She strives to fill it out and is so proud of the reward that SHE earned.

Following Directions Just like the Expressing Wants and Needs Chart, this chart uses rewards to help her understand the concept of following directions.

Reducing Anxiety This chart is another reward based chart. It is used to help her calm down, taking deep breathes, and telling me or others how she feels and to work through her anxiety. Unlike the other charts, she doesn’t lose circles if she can’t do something on the chart. We repeat the steps over and over until she can.

Who Is Home Today This chart is used to show Reine who is going to be home and who isn’t for the day.

Homeschooling Charts These charts allow Reine to see the progress of the day and how many more things we have to do before she is done with school that day.

Let’s Play Chart This chart allows Reine to pick things to play/do with us in particular. Many times Reine wants to go from one thing to another to another to another without cleaning up and gets frustrated when we do not know these wants.

Now, Next, Later Chart This chart allows Reine to see the big things we are doing in order.

How do you say “THANK YOU” to someone that helped you in ways you can’t begin to describe…You can’t. You can only continue to do the things she helped you to learn and to make her proud of the progress you have continued to make.

As part of Kennedy Krieger Institutes rules, Reine is not allowed to see Christine anymore. It has been a LONG and HARD transition for her. She adored Christine and was so confused by this process. She retaliated and backslid in hopes of seeing her again. She still asks about her and begs to see her on a regular basis. It breaks my heart every.single.time. I have to tell her she is not allowed.

Christine, if you ever come across this post and read it, know that you are so very much loved and missed. I can not begin to tell you what you mean to me personally. I owe more than you know and I can ever repay you for. You are damn good at what you do. Never forget that. Thank you so much!

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Bittersweet Goodbyes Disclaimer: I have read, heard, and cried at the many many many stories about ABAs, Behavioral Therapy, and the abuse that occurs within the autism world.

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AromaRain Bracelet Diffuser Review

I use essential oils daily to help with my PTSD and depression. I have posted about this several times on my blog. This year I found a stainless steel and leather aromatherapy bracelet from AromaRain that I am in LOVE with. I already own a couple of their necklace diffusers and love them. But when they came out with their bracelet diffuser I knew I had to try it as well. It did not disappoint!…

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Stuffed acorn squash.... #realwholefood #realwholefoodobsessed #nochemicalshitstorm #squash #acornsquash #fallcomfortfood

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Mermaid showing off her new skeleton pjs...because we learned about bones this yr. They need to stop thinking only boys want pjs like these #asd #autismlife #autism #homeschooling #learning #boysclothes

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Lining up the crayons by color... #autism

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Hooked on Phonics for the win!!! #learningatyourownpace #homeschooling #asd #autism #learningtoread #hookedonphonics

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Hooked on Phonics for the win! #homeschooling #learningtoread #learningatyourownpace #autism #asd

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You know it's been a LONG week for my Mermaid when the grouping and lining up of things begins. #autism #asd #sensoryprocessingdisorder #spd #stimming #autismlife #needsdowntime #needs

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Carving out her Halloween pineapple. #newtraditions #halloween #asd #sensoryprocessingdisorder #autism #pineapple #exploring #textures

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HAHAHAHA!!! This is what I get for letting my 13 yr old pick the colors on the slow cooker and toaster. #creative #color #slowcooker #toaster #teenager #artlover #colorobsessed

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This face says it all today... Reality hit in and she is working to identify her feelings so that we can begin to week through them together. #soproudofher #autism #asd #workingthroughfeelings

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My Mermaid and her best friend in whole world Moo.... Found this AMAZING selfie on my phone this afternoon. #childhood #stuffies #jellycatcow #jellycat #bestfriend #asd #autism

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# autism

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When your middle takes on a dog walking job rain or shine and the rain hurts your youngest...you make sure she is fully covered with a huge umbrella. #sensoryprocessingdisorder #rain #autism #hugeumbrella #hugeumbrellaforthewin #rainingcatsanddogs