A year in a day

 I once had said that a bad can seem like a year long. That day seemed like a bad year. I was in a similar situation today. It started out simple enough. Then it got pretty complicated. When I look back on this I can see the gains made during this period. Rather than the stress that it caused at the time. 

  I have a profoundly autistic child and an autistic that is considered high functioning. My situation is quite different. As my profoundly autistic is, well, easy. She rarely is out of happy mode. She basically does what I ask of her. This is as long as she understands what I'm asking. Although she has very low communication, she understands a lot. Mostly the trouble we have is her need to have everything in order. I mean everything. If I put her fork on the wrong side it is met with a squak of disapproval. If I don't have my glasses on, she will not relent until they are back on my face. This might seem overwhelming. However, this is very patterned behavior. I can anticipate what is going to upset her. We can't perfectly match her very ridged life expectations. I have to help her with almost all her daily tasks and prompt her on what to do next even at 18 years old. I am not bothered by this. I enjoy interacting with her as we are taking care of her personal care together. I might have a thought about what it would be like if she was a normal 18 year old. I just have to remember that all children come with different sets of worries. I don't compare her to peers her age anymore. I think about where she was a year, 10 years ago and how much she has progressed. I think about the work we put in and how much it has paid off. I think about everything we have learned together in that time. I can't feel anything but blessed with the lifetimes of knowledge I gained.

   My 'high functioning' child is far more complicated. 

The misconception with high functioning children is "whew you dodge a bullet". They can do things like sing on stage. They can have conversation with you. The main differences are ability to talk and more social awareness. However, awareness is not understanding. They often deal with awkwardness in a social setting. Pretending they knew what was going on. While being completely lost. Misinterpreted what was said and feeling hurt. It is a constant battle. They also have much more expectations placed on them. Most have above average intelligence. That does not mean an average ability to process. They get overwhelmed by their environment. Most of them have the same ridged routines. We often think that they can just use their intelligence to work past it. It doesn't work that way. Also while a normal brain will think of the big picture and dwindle down to details. An autistic will focus on details and build to the bigger picture. Sometimes the details might be muddled and they can't get to the big picture. The detail might be wholly overwhelming. This process is bottom up thinking. This is why a high functioning autistic are very good with math and art. They have trouble regulating their emotions. Impulsively reacting to it in a very disruptive way. I could amass a book about the complications. I will sum this up. They have a processing disorder, even though they speak well it takes time for them to process language, they focus on details mixed with emotional dysfunction. This is all hiding in their head. Also their nervous system is reactive like no one else's. Leaving them in a life threatening state of panic the majority of the time.  

    My high functioning child is about 10x more difficult to parent. She has also taught me the most. Drove me to better myself everyday. Along with her medical complications we have our hands full. When she is disregulated it can seem like a roller-coaster in a tornado. There are peaks and valleys with impeding disaster. This is why as a person in charge of getting through the day feels battle fatigue. It feels like decades have past in a bad period.  

     This leaves the main caregiver in the same state of life threatening state. We are operating in a survival state. In this we can get an idea of what our child feels. However, I have better access to the top of my brain and able to process the bigger picture.  

     Life teaches you what you need to know. It also along the way gives you different perspectives. No body is the same. Based on what has nurtured you through your existence. 

     While some people can have a pessimistic view on life. Others will have a positive view. I am more of a realistic view point. Both my children are quite disabled. That is reality. That doesn't mean I don't think that they have their own superpower. They can see and do things that I can't. I don't view their autistic brain as a damaged part of them. They process bottom up in a world that works top down. They feel things more fully. They are honest and more genuine. You know where you stand with them.  

They can't hold in their emotions. Which can cause chaos. I don't try and prevent this chaos. We have to walk through it together. This is an extreme struggle. Even so it is eye opening and rewarding to win our way to the other side.  

  I feel blessed. I can see things that are hidden to others. I was given this gift. God gave me a look into a part of His view point. In His perfection the human creation is disabled in their unperfected selves. How He must look at us down here making wrong decision after wrong decision. He even gave us a book of instruction! Yet we fail over and over again. We fall short. We need Him to fix our issues. He is the ultimate caregiver. Giving us Jesus, His son as a way to rectify our failings so we can be viewed perfect in His sight. We need Jesus. We all fall completely short. Our perception of disability is less than and not up to snuff. His perception is we all are in a way, disabled. He views us as we view a disability. Something that needs to be fixed. Something that shouldn't of happened. Something that needs to be mourned. While God has given us in His grace our salvation in Jesus. What of the disabled? They are a way to see our own imperfections mirrored. How God views all mankind. Broken in need of saving. I was given this insight so clearly in this work He had given to me. I am closer to Him because I know by my life. In this I do not mourn or moan about my circumstances. Rather rejoice in the knowledge that He has given to me through my children. Praise be to God for the year in a day.  

Cause and Effect

 This is a biblical post. 

   I made my peace a very long time ago with my children having high needs autism. I am writing in the perspective of a mother of a profoundly autistic child. Also a mother of one dealing with what is considered  a milder form. However, with the coexisting conditions makes her high needs. 

That being said I am at peace with their autistic brains and how they function. I'm at peace with the fact they will not lead a normal life or be able to live on their own. 

We have had a lot of news about autism recently. What causes it. Why is it effecting our children. What can we do to stop it. 

This is a very scary scenario for me. I know that my children were born autistic. I know it was an inherited. We had genetic testing, all of it done. We looked at their mapped out design. It was right there in black and white what caused our families autism. I don't need research studies telling me it was the Tylenol or some other random thing. I'm not discounting that. I am not saying that environmental causes have no effect on autistics making them sick. There are things in this world that is making everyone sick. I am saying that the autism is separate from that. The autistic brain is innate. I can go on and on for hours proving it is innate. However, that is not the purpose of this particular post. I will say that it is very much like an apple versus android. A different brain with a different operating system. Still human with the same everything but it functions completely different from the typical. An apple and android can do almost the same things however their programming is different. This world is mostly an apple world and it seems as though their is something is wrong with the android. The apple can get glitches and so can the android. Those glitches effect the apple differently than the android. The android is hard to figure out because everyone is used to the apple. So the android must be completely damaged. It isn't. We are just having a communication problem 

This is to say that I have a profoundly autistic child. Her brain can't communicate like a typical brain. We don't have a good line of communication. Also a brain and body communication issue. My other daughter's brain is opposite. Her brain communicates too much and she can't keep up. I have an understanding of this. I also know that I can help translate somethings for them. I don't have the answers for everything. That is God's domain. 

I spoke about my children designed this way. I have science backing me up on that. Also I know that God designed us to be different. It is evident in the environments in which he put them. We are built differently based on where we are put. I know that God made disabilities as a human experience. 

John 9:1-5 

As He went along, He saw a man blind from birth. His disciples asked Him, "Rabbi, who sinned, this man or his parents, that he was born blind?" 

  Neither this man nor his parents sinned," said Jesus "but this happened so that the works of God might be displayed in him.  As long as it is day, we must do the works of Him who sent me. Night is coming, when no one can work. While I am in the world, I am the light of the world." 

From this text we can see that the disciples want to know why? Jesus explains that this disability was created for the purpose of displaying God's work. 'As long as it is day, We must do the works of Him who sent me'  This is saying that this will continue to happen. These disabilities, so that we do the works of Him who sent me.  'As long as it is day'. So as long as we are here on this Earth. Then he goes on to say "While I am in the world , I am the light of the world."  Jesus during His ministry healed a lot of disabled individuals. A lot of them have been recorded in scriptures. Most of His dealing were with disabled people. 

  As long as God has work for us, we will see disability. We can't cure what God has created. I just put the reason why it exists. It is also a call to faith. 

Luke 5: 18-25 

Some men came carrying a paralyzed man on a mat and tried to take him into the house to lay him before Jesus. When they could not find a way to do this of because of the crowd, they went up on the roof and lowered him on his mat through the tiles into the middle of the crowd, right in front of Jesus. 

 When Jesus saw their faith He said, " Friend, your sins are forgiven." 

The Pharisees and the teachers of the law began thinking to themselves, "Who is this fellow who speaks blasphemy? Who can forgive sins but God alone?" 

 Jesus knew what they were thinking and asked, " Why are you thinking these things in your hearts? Which is easier, to say, 'Your sins are forgiven,' or to say, 'Get up and walk'? But I want you to know the Son of Man has authority on earth to forgive sins." So he said to the paralyzed man, " I tell you get up, take your mat and go home. Immediately he stood in front of them, took what had been lying on and went home praising God. 

In this example this man wasn't born paralyzed. Some happened to cause it. His sins needed forgiving. His sins were forgiven because his friends were faithful. His friends had faith that Jesus would help him. That He was the only one that had authority to do so. As Jesus mentioned later in the text. We search and search for a way to lessen our afflictions. We as a creation do not have this power. Only the Son of man does. Is this hard for me to say? That my children will suffer and I can help them but not fix everything? Absolutely. I also know this is the work God has given me. You might asked how can God do this? I would refer you to the entire book of Job. I will also attest that I can only speak to what God has revealed to me. I am but a creature of His creation. I have not a inkling of the workings of God. I do know that He doesn't make mistakes. He has authority over all the happenings of His creation. He allows and moves according to His glory. 

 2 Cor: 12: 6-10

Even if I should choose to boast, I would not be a fool, because I would be speaking the truth. But I refrain, so no one will think more of me than is warranted by what I do or say, or because surpassingly great revelations. Therefore, in order to keep me from becoming conceited, a messenger of Satan, to torment me. Three times I pleaded with the Lord to take it away from me. But He said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. 

  That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. 

  This is my favorite passage. Paul was given a 'messenger of Satan'. A thorn in the side. He was given a disability. God allowed this to happen to Paul. God pointed out first My grace is sufficient. Then God said that His power is made perfect in weakness. He was saying that He allowed the disability so that His power can be made perfect. Paul communicates that he now delights in his weakness, in all of his suffering. When he is weak, he is strong. 

When we think about suffering know that God's power is made perfect in it. I can only speak for myself but in the hardships is when I feel the strongest. I'm at the mercy of the Cross. I'm not depending on myself but relying on God to carry me. 

I'm not going to argue about how Autism got here. It is considered a weakness. You might want this thorn to be taken away. Which is completely valid. As for me I do not. I do not worry about it. I know only God has the authority to "cure" it. For His grace is sufficient. That work has to be done. That His power can be made perfect. I will draw strength from my weaknesses. I delight in it. 

~Kandi

The hardest part as a caregiver

 I wear many hats. I am a follower of Christ, wife, mother, advocate and somewhat of a word smith. However, I am a caregiver. The guardian of lives and it will become very legal soon. That particular job is probably the hardest. My time is not mine. It's separated into the ones I care for. 

   The hardest part of being a caregiver is allowing time just for myself. Most people have to force themselves to exercise. Force themselves to eat healthy. I have to force myself to sit. To not move to the next thing. Even my time with God is during exercise. I spend an hour and a half a day exercising. My mind is never at rest. 

  I'm writing this because I did just sit this morning. However I feel guilty. Beyond guilty for doing so. I could be doing so many things rather than just sit here. I was fine when the cat was laying on me. I after all am giving my lap to the cat. So it would be so rude to move him. 

  I am constantly thinking of ways I could be more efficient. I could of done this day better. What went wrong with this situation? How can I be better for the next time it happens? Worried that I made a poor choice in a decision when it comes to my girls. 

  I have been making decisions for Sharon nearly 18 years. When she hits that milestone very soon, I will still be making decisions for her.  It is very taunting, In this rest period I am still not relaxed. I am thinking about this mountain of responsibility now legally required of me. Forgive me, my processing this openly. 

 I know several things. God is my strength. He is the Captain of this very broken ship of mine. I know in Him I can rest. In some ways I do. I know that whatever happens in a day, I'm going to get through it. Some days it feels impossible. I can tell you some wild stories that you wouldn't believe. I had days where I couldn't believe that I got through it. The faith it takes to let God drive your ship to shore is hard. However, I cling to that because I have to. 

 God is the ultimate caregiver. I can only imagine with the small responsibility I have. It leaves me in awe and gratitude. He wants me to rest. He set aside a day for rest. One of the things I am not obedient in at all. I want to be though. I want to realize that taking time for myself isn't bad. It is necessary for my health. 

 I was asked if I would tell a friend the things I tell myself. I obviously said no. It would be rude and hurtful to do so. I am writing this now and it came to me. I am also harming what is God's. I am His. That is the crux of it. 

 I need to work on that. I need to be a caregiver to myself. 

 I hope that we as caregivers can learn to rest. We go at such a pace that it is astounding. We are on call 24/7. There is not a day off. However, moments can be spared. We can allow ourselves rest in those moments. 

~Kandi

Joy in a neurodiverse family

 I learned my child was autistic when she was 3 years and 3 months. She is now 17 years and 8 months old. A lot has happened in those years. 

  My second child is autistic as well. Then with genetic testing and pure observation, my husband. I am the only one that would be considered "normal". In my household I'm not. I'm the exception. I'm confusing at times to my family. They sometimes have a hard time with my "normal" emotions and my inability to remember the order of the day. I often change things up. The audacity of this is voiced in unison. 

 I'm not frustrated nor looking for answers to the order in my life. I didn't plan my life as going as such. However, I'm grateful for how it turned out. Through my family I have a driven purpose. I wake up in the morning knowing the mission. I don't question what I'm doing with my life. I'm not wondering what will I do. Progress and success is different in our household but it is there. We strive for it everyday like a missile. 

  I take offense to my children being called damaged or being called an epidemic. As if they're a well planned invasion on a utopia of a world. I would like to point out that if you look around; my children and others like them are the least of societies problem. Simply it's not true. My children are not damaged. They are just different. People may not like their differences. However, it is not up to them to consider them damaged because of it. 

  How are they going to contribute to society with all those differences? They already have in so many ways. I have done so many things that I wouldn't have done hadn't been for their differences. 

  When my children were young it was hard to keep up with them being extremely overweight. I decided I needed to lose weight so I can keep them safe. I've lost over 150lbs. They were my motivation and purpose. I've learned about psychology, behavior, genetics. I've learned law and how to translate non verbal and verbal communication. I've learned how to stay calm in horrible situations to a positive outcome. I've learned how to advocate and be bold in it.  I've learned diplomacy and different points of view. The list goes on. 

  The most important thing I've learned is the beauty of this world through them. They have a much different view point. they discover things that I can't. This leaves me in awe and wonder. I'm very thankful, blessed to be able to have this. 

  I don't mourn what I didn't have in the first place. I wonder what life would have offered if my children were not autistic. I would probably still be obese. I would lack the knowledge I have now. I would still probably desire for more every single day not knowing my purpose. I would be sad and miserable in my own chronic pain that is a constant. If I'm honest would I still be here because of that constant pain? NO. I'm sorry I don't want that life. That life is damaged. 

  My girls have taught me so much in their short life. I love them for who they are. Not because they are my children. I love them for the individual value and love they bring to my life. 

  So yes I take offense when somebody calls my family damaged. I can speak of the wonderful benefits of having a neurodiverse family for an entire book. 

   Some based on my words, will assume that I must not have children that are severely effected. By society's version of that is, yes they are. My oldest might not be able to live on her own. My youngest has an opportunity to flourish on her own but might not either. Both are unique in their neuro presentation. One struggles with cognitive delays and the other emotional regulation. They are very much different. Which is a blessing. They are so unique. 

  God gave me this opportunity. I could certainly hate this life. I know many who do. I know many who are desperate to change it. Who would love to have a different life. I simply don't feel that way. I feel blessed to be able to serve God with what He has given me. In this He has blessed me with peace. Peace and joy in the life had laid out for me. I know how and why my children are autistic. It wouldn't matter in the way God had delivered it so to me. Because it is what He had for me. How do I know that? Because I'm living it. That's the honest brutal truth. The question to be answered is how I react to it? That is my free will. I hope and pray I am favorable in His sight. 

Harsh realities

 I am an unpaid caregiver. I don't have time to have a job. Could I use more income for my family? 

Absolutely. However,  We have to make sacrifices for our children. This is something I can do. I have 

the knowledge and know how to get them the things they need. I spend my time doing a ridiculous 

amount of paperwork, calling or emailing providers, read and listen to books. I had to learn and am still 

taking classes, attending conferences to navigate a system that is awful. I am being very generous with 

 the awful remark. 

  The mental health system is deeply flawed. We still have a stigma when it comes to mental health. In 

society we completely down play it. We don't worry about what impact our language or actions cause 

for ones mental health. We expect people to be mentally strong or we brush off problems based on 

someone's gender or demographic. We also blame not having a spiritual strength to get through a hard 

time.  This is barrier to access help. However, It is one barrier. 

  The next barrier is cost to get help. Therapies are expensive and a lot of the time not covered by 

insurance. Most people do not have the knowledge to work around this. There is funding for mental 

health services per state. Here in WI that is CCS (comprehensive community services).  CCS requires 

you to first know of them. Second you need to fill out complicated paperwork and provide medical 

history. This is a big barrier for those who lack knowledge in this area. It is overwhelming to a person 

with full mental compacity. Let alone those who are suffering from executive function, anxiety and or 

learning disabilities. 

  After you fill out paperwork that requires a legal degree to decipher. You wait for approval. You wait 

on a waiting list for nearly a year or longer. Now you have access to a limited amount of providers. 

Those providers have paperwork much the same. The providers have a wait list too just as long. Which

you can't get on until you are approved. After you get off the waiting list from provider, you will wait 

for an appointment that is scheduled up to 8 months out. In the meantime you might be in absolute

mental crisis. In which will not get treated until you do something drastic. This is the problem. 

   We will not address these problems because we are distracted by easier options other than treating

people who might be vulnerable. We say lets make it less accessible to get tools to do something 

drastic. However, a person with full mental compacity that is healthy won't bother if these barriers are

place. A person who is in mental crisis, desperate for change it won't matter. It is like telling a starving 

person that Ritz cracker over there is not for you. Is that person going for the Ritz cracker 

anyway? Absolutely. 

  When a person is in crisis it takes multiple people or a person willing to do everything it takes to keep 

the person in crisis safe. This is a full time job. I know how full on it is because I was in this position. 

It's unpaid, 24/7, -110/10 experience. Who is honestly going to do all of this? 

 The other barrier is that most people are unaware of the difficulties placed in front of those seeking 

help. It is completely understandable that often times caregivers think that there is nothing they can do. 

We have to systematically change the system. Even though it is better than say 10 years ago. We have a 

long way to go. Also as much as mental health has improved, living with a mental illness has become

10 fold harder. 

   We have social media. We have 24/7 negative news cycles that 100 percent incite emotional 

response. Cancel culture. Reels and videos everywhere meant to degrade and dehumanize. This is in 

our faces every single day. Mental health for a every single person is dwindling.  Teenagers are the

most vulnerable. They are also the hardest to get Mental health coverage for. A parent or caregiver

might voice there concerns. They get shot down with 'they are just teenager'. They are hormonal. They 

are just a boy. Relax. Then to try and buck the system which can take a legal degree. They have to 

follow the above. 

  Advocating for better mental health should be a major priority. Caregivers only can do so much. 

Although I am taking precious I don't have writing this. If this is something I can do, I will do it. 

I don't have time to advocate on a bigger scale. The smaller scale which is my own children is 

overwhelming. I am hoping and praying that this speaks with someone. That it will help people 

understand in a very small way.  We need help. We are in Crisis. We are exhausted. 

Love is an action

 The Maze Game

We play our game

In the maze we are safe

Fear leads the field 

Yet the walls are high

No way to lose the fight

Everything we have is inside

Sheltered as it seems

In the light we are frail as can be

Time does not stand still

We must show our might

And step outside

Our courage saves the tears from falling in vain. 

Kandi K Wolfmeyer, 2002

I write words. Words that are void of emptiness. Verbs are meant for action. We say them to state the purpose. An action we are going to take. What if we treated love as an action? A verb rather than just a noun. We throw it out with no purpose. However, it has a purpose. It requires action. 

   A word. It's just a word. However, some words matter. A word that can save and destroy. Destroy when it's used as just a word. Expectations are placed when we use this word. It requires action. 

    We place walls so high. We might say we love but act as if we don't. Are we there? Like a mother to a child? Ready to battle the struggles? Ready to stand firm, mercifully in that love. Do we just leave when things get rough? Do we think this is beyond my ability? We have lost sight of what love really means. 

    I have watched over several days. Love poured out for a person who recently died. Where was this love when they were alive? Would it save the outcome? If a person is actually loved it saves. When we use it emptily it destroys. We say I love you but are never there. It can be thrown out so much in that emptiness. A person would eventually believe love is nothing. They are nothing. When love is given correctly, they have no trust in it. 

  Have we given love and it was not returned? Do we remember that feeling? Have we said I love you and weren't there? Surely we are all guilty. It is just a word. 

    I'm a mother. My children are different. When you use words they better not be empty. They use words as an absolute. My youngest says she loves me. She will absolutely prove it in her action. My other daughter does not use many words. Her actions say her words. I ponder this. They know what love is. The proper use of the this word. Even though they have come across the misuse. When somebody is not there. Yet have said this word. They have no understanding of being empty in words. It is completely foreign. 

    Are we going to funerals regretful? We wished that we showed, proved our feelings. We play a game. Keep are walls high. All those times where empty love given. We add bricks. The bricks prevent us from acting. 

    I learned this early on. I want to love like it's the only action I need to do. I want to love like Jesus loved Peter. Knowing He will be disappointed. Knowing Peter can't return it the same way. Can we take those bricks down. What is on the other side? Are we willing to risk it? 

     My daughters don't know how to build this wall. They don't have those abilities. This leaves them vulnerable. However, we can help. We can help those vulnerable. When we use that word show it. In fact, we can just use our actions and they don't need the word. We should feel it pouring out. Love is an action. 

Neurodiversity: physical touch

  Every single person that lives on this planet needs physical touch. The ability to receive the touch is different. However, the need is there. The stipulation in some circles is that neurodivergent individuals do not like touch. It simply is not true. While some have sensory issues with touch and have to be careful on receiving it, need physical touch. Our family uses physical touch as a grounder and communicator. I will be discussing this today. 

  My daughters both have communication issues. It is important to use physical touch to reinforce the verbal response you give them. It can be as simple as a touch to the arm or a turn of the head. It grounds them to the conversation. They now have two or more sensory inputs when communicating. If we are dealing with an individual with ADHD this is very important. They need a grounding point. Depending on your relationship with them a light or heavy touch will help them stay with you. I usually will play with Leah's hair as I am speaking with her. I with stroke her arm. This might seem very odd to an outside viewer. I am simply helping navigating her through a conversation so she remembers. I also will rub Sharon's back as we are talking about something. Our family is very physical. It is all about the communication aspect. Sharon often will reach out. She is the most physical communicator. She will often use touch to communicate her needs. She often wants to be grounded through it. Sharon is often lacking in words. She will find a way to communicate through her body. 

  Physical touch is a way to ground oneself. What exactly does that mean. Everyone feels overwhelmed at times. The world does comes to fast and swallows you up. Neurodivergent individuals have this happen more often as they have a hyper awareness. Physical touch helps ground your sensory system. We have so many things to simulate this action. We have weighted blankets, hug blankets, and compression clothing. It is replacing what natural personal touch would do. We will often cuddle our teenage daughters. They need that physical touch. This prevents a lot of meltdown and sensory overloads. 

  We hold ourselves back with physical touch. However, physical touch is many things. It can be an effective tool in communication. It can help ease anxiety in those who are feeling overwhelmed. We can also use it as a way to communicate on how to touch. What would be the best way to touch? Some people like hugs but some don't. The key is to open the communication. Physical touch is one of those lines.