Saturday, October 1, 2016

The Life of A Differently Wired Family: "Socially Appropriate"/ Unfair Supports/ "Special Needs"/ Multiple Appointments/ Costs and Family Roles

The MONOLOGUE
"You know what's odd mom?" My eleven year old asked, "That at the park the other day, that old jolly man who was so kind to us, looked at (the younger brother) and kept trying to get him to talk, and he did that with my sister and I too...and we are supposed to be the socially awkward ones according to our diagnosis right? And my (younger brother) is supposed to be the socially appropriate one? I mean he is the one who makes friends quick and who was diagnosed differently than us ( DCD and multiple learning disabilities)...So why is it that when that kind man talked, I knew to look him in the eye but my brother refused to? I didn't want to look him in the eye but he was so nice trying to get us to laugh that I knew he would want me to look him in the eye and at least smile so I did even though I probably could have not.  WHY is it that the people who are diagnosed as inappropriate seem the most appropriate? It happens ALL the time. I've also noticed that people who are not diagnosed with anything and are supposed to be 'normal' are often not very polite or as good at being in a situation like us even though we struggle with it more. It seems odd you know? I think it's because of everything you and dad taught us and especially you because you get it- but it still strikes me as weird sometimes."

True story. Yes my eleven year old monologues like that...he tends to use bigger words than I can sometimes recall but that is as accurate as I can remember. But he is right. I have noticed this in casual conversation observation too. In general, I am usually the most polite, appropriate, please/thank you/social rule insert here/ kind of gal in the room. YET, I will say awkward or silly things that seem perfectly acceptable to me at the time but realize later maybe not but that usually only happens if I try to say a popular idiom or am in a situation where I am uncomfortable. Otherwise I am the prime example of how to make someone feel normal, comfortable, listened to, and follow their social cues. Why? Because I DON'T UNDERSTAND social etiquette at all. I think most rules are pointless, stupid, fake or just plain- why?  Thus, I have had to study them, the reasoning and customs of origin that started them all, and people to see what works.

THE ART OF GETTING WHAT ONE WANTS BY BEING "SOCIALLY APPROPRIATE"


In my early twenties it was a gong show because I had not yet mastered the art of realizing what people want or how to get the most out of professional interactions. For example, at the doctors, the most normal and least paranoid you sound = the more help you will get. Basically I had to take a personal relations course which I thought was ridiculously phoney and fake and did not line up with who I am- but then I realized it's just how one gets results in the world. As long as these PR tactics do not bleed into the most authentic matters of the heart, I have resolved my previous issues with PR.  I learned how to keep it short out in the world but be my normally long winded self where it matters or where I feel comfortable amongst other tactics.

I have now spent over a decade in cognitive therapy. I have read numerous books, self help, how the brain works, and studied people. People are fascinating and perplexing. I love the idea of people. I often feel like I am an alien studying a foreign race. I don't get much of it and yet I understand most of it. If that makes any sense. Because I have had to. In order to thrive in my setting and to get what I need to have my family survive- I have had to learn, understand and become the rules that I regularly break and don't always support in my head. Because that is just what social life is- it's a game that everyone plays to a degree. It's an odd sort of movie. It's not fake. It's not completely real. It just IS.

I have also learned to appreciate some of these odd rules. Some of them enforce kindness while others do expedite a wished outcome, or give the illusion of respect which is sometimes nice to pretend in extended situations even if it's a tad phoney.

So I have taught my children these skills. Focusing more on the two who seemed to need it the most and who were officially diagnosed with conditions that were considered contrary to "socially appropriate." Thus, ironically they SEEM socially adjusted. But that does not mean that their brains are not working on a completely different frequency inside. They have just learned to mask. A subject that I am both massively upset that it needs to be done in the first place, a bit happy about because it gets me what I want, and something that I don't think autistics should have to do, but I also believe it's a skill that when Autistics have it, life IS easier. An unfair fact but true nonetheless. Too much masking and one gets physically sick which was my entire life up until my twenties. Too little masking and one gets bullied, picked on, isolated, ostracized and denied help- which I experienced in my twenties. There is a fine balance to be had.

THE DISPARITY AND UNFAIRNESS IN SUPPORTS AND CIRCUMSTANCES

I have a friend who has a tested low IQ and is about ten years younger in her mind than her age and often I watch her be at the mercy of whomever is helping her. Fortunately, I have a high IQ which helps my case, but otherwise I often see our similarities in what we can do. In fact, she can manage meals a bit more than I, even though it's a struggle for her too. But I see many uncanny similarities in our abilities and ways that we are in the world. The difference, other than the IQ, is that I had support from an early age which enabled me to mask effectively because my other needs were being met. I also am able to communicate what I need more often than not. But ultimately, I have had to learn HOW to communicate which gets me a higher quality of life than she gets. It's unfair. Often I see myself if I had her opportunities and I cringe. I would not have a husband, children and a wonderful home without a few key choices, supports and upbringing. I would be that girl at twenty five, reliant on whomever chooses to help me, having to follow their rules. My twenties came at a steep cost while I learned these lessons the tough way, but I am glad I learned how to work systematic views, places and institutions. Because it gives me a certain level of autonomy even if I am a person who needs to be more dependent on various helps.

EXPECTATIONS BALANCED WITH SAFE PLACES

Basically I have taught my children what people expect. We go over and over it. However, I also have taught my children that with those one loves, authenticity should rule the day and those expectations should be challenged. There should be safe places where the masks are completely down. Our home would be that place which is why we RARELY have anyone in it because we need that safe place when the world infringes their rules on us everywhere else. With differing relationships there will be differing fluctuations of masking. It's simply how we maintain relationships. It's not fake- it's simply learned behaviour- a skill some are better born with and some have to apply more consciously. At it's core, this application is simply a combination of understanding, respect, and self control.

Many professionals do not believe that my children have diagnosis when they first meet them. But going through diagnostics it was clear that we have some severe executive functioning impairments, learning disabilities, quirks, oddities and major differences from the majority of people. It's simply that we study other people regularly and have learned the rules of others even when they don't apply to ourselves directly. My son has been working on eye contact since he was three. I don't believe that Autistics should have to look people in the eye. To be honest it hurts. HERE is a post on that subject. However, I taught it to him with the caveat that, "Some people will not respect you or not help you if you do not look them in the eye. They will think you are rude. While this is ignorant ...it is what it is. You can help yourself and them if you wish by making brief eye contact or looking above their eyebrow and they won't be able tell the difference. If you wish someone to feel kindness from you in a brief interaction this may be a way they may feel it. I know you don't feel it that way- but they do...and perhaps one day - if they become your friend- they will learn alternative ways of extending that kindness to you in your language." Yup, I said that kind of stuff to my four year old because I knew one day he would get it if he didn't already...he was quite verbal plus I am an aspie too...so I tend to use blunt, to the point, concise, non age appropriate language with those closest to me.

My other son is not quite as teachable. With learning disabilities and a low processing speed he is actually at more of a disadvantage in varied situations than we are. Depending on the situation, he can be the most vulnerable. He will not apply the rules as effectively because he can not remember them. He often will fly by the seat of his pants. I have to actively be in tune with his needs which are completely different than my other two children.

Normally I am very censored in general except with a few I hold dear...and even then my self awareness is large indeed. I censor my speech, behaviour, and body language. It's exhausting and I have found the balance between when I can simply be who I am and when I need to censor to appease or speak anothers' language. I'm no longer ashamed that I am different or odd. In fact, I am proud of who I am and think in general that I can be a delight and a danger depending on the situation. I love whom I am and at the same time struggle within my limitations and gifts.

LIFESTYLE DIFFERENCES/ CONTINUAL APPOINTMENTS SIMPLY TO LIVE/ "SPECIAL NEEDS"

But our lifestyle is an odd one indeed. One that requires both a ton of supports and isolation from the general community simultaneously to thrive. A paradox.

Years ago someone pointed out that our family has a ton of appointments. It is especially weird considering our children are not in any organized church, function, or school yet we have a lot of appointments on the calendar. I thought it was normal. It's just who we are. Then I came across posts from other Neurodiverse families who also have as many appointments as we do. I realized it comes with having a minority mind...or what others would coin "special needs."

I suppose it does translate as special needs but I dislike that term simply for all the ableist mindsets that come with it. We have DIFFERING needs. Simply because our needs are not the majority does not make them special but it does make them just as significant as any other person. The only difference is that our needs often go unmet or we have to go out of our way to meet them. Thus the "special."

WHAT EACH APPOINTMENT ENTAILS


The appointments that have been on my calendar since my older children were toddlers are as follows:

- Assessments. These are needed to get funding and every few years they are required again. They are exhausting, require many hours, fortitude, patience and awareness from the parent to be on top of information, understanding of the child and the professionals. They also often come with a steep price tag though sometimes there are ways around this.

- Cognitive Therapy. Every month, every year...we do this to learn about ourselves and the culture we live in. We also have more anxieties than most due to our sensory overload and executive functioning fails thus we need the support.

- Dental. We do not have ordinary dentist appointments. I feel I live at the dentist. They know me by my voice and that I will need a same day appointment for one of my kids because it's generally that serious. I buy the receptionists fruit trays and flowers because I see them often. My children have excellent hygiene and eat very well (see side label) but they have continual unexplainable abscesses, sores in mouths, jaw infections and weird things that happen. Reading about other autistics I have found that even though most dental professionals do not say there is a connection between teeth and autism, MANY autistics have unexplainable issues that are similar to ours. We see the dentist almost monthly. This adds up quick.

- Optometrist. While one child has a heavy prescription along with hearing issues, both of which have contributed to his learning disabilities, the other two children also run into odd eye issues. The receptionist at the eye doctor also knows me well. Unfortunately, this also applies to myself. The amount of eye injury in the last year alone totalled five. Yup. Because of executive functioning issues our depth perception is off a lot. AKA we can be clumsy. There are many dangers that for most people are trivial matters, but for us equal an emergency appointment. This applies to eyes as well. After typing this my eye was lightly punctured by a tree branch and may have to make a trip to emergency again if it doesn't calm down. Sigh...also, What helped us the most was finding the cheaper website zenni optical and ordering cheap frames from them that work well.

- Speech therapy. We no longer attend this and I regret taking my son and daughter as much as I did . I regret getting get rid of his lisp. I miss it and it was a part of him. We could still understand him and I should never have conformed to society on his speech. However, I do believe that communication is important whether by speech, typing, signing or some sort of way to tell other people how to understand how one feels....thus if a child wishes to speak, speech therapy can be helpful. Some children do not wish to speak by voice and that should be respected. I do not think speech therapy should be forced but alternative ways of communicating should then be mastered. Communication and understanding create autonomy and while speech is the ideal way in our culture there are other alternatives that need to be taught. We spent a few years in speech therapy and some of the rules we learned together can still be applied in situations today.

- O.T. We are in O.T. on and off every year. Especially with one of my children. This involves an hour at the hospital throwing a ball, writing with a pen, buttoning up shirts, making things swirl ect. Out of all things we go to, I hate O.T. the most. Yet, I LOVE the gals whom work with us and I feel very lucky to have them on our team. But I still hate it. I hate it because it is painful to watch, exhausting and mind numbing. I also hate it because I am Dyspraxic too, so I struggle with the exact same things my son does, however I have just learned how to avoid said things or work around them. With Dyspraxia or DCD practice DOES NOT make perfect. So why are we practicing? O.T often for us is about learning how to find "work arounds." Thus, if after sufficient time he can still not button up a shirt, we find creative ways and alternatives for him to avoid using buttons ever. If it's something he needs to learn to survive like cutting with scissors we focus on safety despite not using the tool in a standard way. I dislike it because I often have to help him or the ladies ask me to model the behaviour, and although I think they have guessed that the apple does not fall far from the tree, I have not disclosed my disabilities. Why? Because I often find I get less respect in these settings when I do. It's rare that I disclose my condition because I want the focus to be on my child and not my capability or parenting. Thus, I have to pretend to do these things I struggle so deeply with and it's stressful. Dyspraxics can often have brief moments of mastery. Wherein they master something they have struggled with for a moment, but then the skill is once again, gone. It just happens. Luckily my moments have often been during therapy. But it's still mind numbing. I attend for my child. Sometimes we take long breaks from O.T. because we both hate it. Luckily, we both have the freedom to realize when we need a break and apply this. Most children don't have this luxury or can not communicate with their parents on how stressful it is and are forced to sit in these helps day after day. Again, there is a balance between getting the right amount of help and forcing a child to be someone they are not for society's sake. Somewhere in the middle gives a child their best shot.

- Physiotherapy. All of us except my husband have been in physiotherapy. It has honestly been one of the medical interventions that has helped us the most. Fallen arches, turned in legs, weak limbs, nerve path confusion, posture issues, low muscle tone...these are all co conditions that can come with having a different mind. Physio helps us work within what we are. An example would be posture. Most people can have straight posture and in most settings this is encouraged. In our case however, the goal is not straight posture because our muscle and bone do not line up that way. Our goal is to allow the slouchy positions in our children because their muscles are working extra hard all day, so thus they need to slouch to rest, however, training what we can to ease pain is also a goal.

- Psychology meetings. These can go either way depending on the professional involved. Generally though, this support, if appropriate, can be the most helpful.

- Behavioural Specialists. We were lucky enough to have access to the top behavioural specialist in our country. He came to our home and gave us a couple hours worth of options for our child. While all were not applicable, many tips were useful. We were on the waiting list for over a year.

- Doctors appointments. From multiple ear infections until age nine in each of my children, to temperature regulation, to tics, to heart issues...our children have a range of interesting bodily issues that sometimes require specialists who generally can not figure out our kids. From my reading it often comes down to the wiring in the brain causing different misfires in the body. Also the gut difference in children with unique brains involve more mucus which can cause a myriad of issues. While diet CAN help ease some of this, the fact remains that the gut is comprised of different bacteria and mucous thus the body will behave differently and run into more issues. Plus, there are many co conditions that CAN (not always) come with Autism, Dyspraxia ect. Look it up.

- Social workers/ Case workers. Unfortunately, if you want some of these services to be covered, the route involved for free aid often involves social workers. I have met many over the years. While this is probably my least favourite profession in general, there are a few gems in the rocks. We have been lucky enough to have three ladies who were in their job for the right reasons and attitude and whom directed us to some fabulous help.  I also had quite a few appointments that made me want to punch faces...and had me stressing about how to break the connections without putting us on the radar. Luckily it worked out but these appointments are often intrusive and time consuming because they want to make sure that your family is on the up and up. It's exhausting and often feels like an infringement of privacy. Without the right knowledge they can also come to some dire or wrong conclusions. While it has not happened to us yet, it has happened to some of our friends who went in for help and instead were chastised, humiliated or told they were simply bad parents. Social workers are generally rule followers so we have had to learn what rules to follow to meet with optimal results.

- Tests. Blood tests. Cognitive tests. Medical tests. Between the five of us in a year we have more tests than most do in a decade. Some of that is because of chronic illness.

- Nutritionists/ Naturopaths. Diet and gut difference require additional nutritional aid. We are often low on minerals and vitamins despite eating a rich diet, because our guts do no absorb the same as most. We pay out of pocket to be as healthy as we can because if we do not, we are often malnourished even in our part of the world with the resources we have.

- Educational "Special Needs" help. My son is on a specialized program within homeschooling. I was the first person in my district to insist that my children should have the same opportunities as kids in school including access to public learning disability assessment through the school, and access to the local school psychologist. I was the first home visit the school psychologist had in his twenty years of being in the system. It took me almost two years to get to that point. Basically I fought, phoned and put my stubborn willpower and etiquette know how to good use. Finally my son is now included in the "special needs" aspect of education, with access to voice reading on the computer and other helps. My facilitator and I figured it out together because I was her first encounter with mixing homeschooling with special needs. Now she has many of her clients lined up for the same testing and aid.

AT OUR COST OF TIME OR MONEY

As you can see, our time and money add up. Many of these things we have had to travel three hours or less to attend on our cost. I have spent hours on the phone finding resources, learning how to pay for certain things, what is covered, what is not, how to get coverage, how to find good professionals to work with and we have had to take time off work to do these things. I consider it a full time job. Basically I get paid to do it if my results match my expected outcome because my children receive the help they need.

Often my husband also needs to be in attendance which requires less work hours and a flexible job which means we are under the poverty line. Luckily, we don't have too much debt so we can work around this and we seem to have a lot because we find many things for free for our home and have worked hard to make it full of beauty. This is our normal. Most days I don't think too much of it though I do love the weeks I have without random appointments. I honestly don't know how moms who attend church, school and anything extra have the time to attend these constant meetings and events with minority children either. I certainly would not have an easy time managing more than I do. Another reason why I homeschool. I wanted more freedom for my family.

Perhaps I find it both tougher and easier because I am on the scale myself? Being an Autistic, Dyspraxic, ADD, highly sensitive parent I understand what my children are going through. I also understand what they need to get by in life. I am fine if they live with me forever and in fact will probably have a tougher time if they don't. I know what they need and they know what I need.

A WELL OILED MACHINE- OUR FAMILY ROLES

Our family has become a generally well oiled machine where we each make up for a skill in one another that may be lacking. My husband says I am the mentalist. I take care of any stress or issue which involves the mind. I make sure the budget is running, the kids are meeting healthy needs, that everyone is in tune, understanding, learning, growing and being. I brainstorm outside the box thinking to get to wanted outcomes. I counsel or find counsel if I am not up to a task. I set boundaries and find books to aid in whatever current issues are facing us. I find the funds to cover the medical, the appointments, and the assessments. I write up the proposals for funding and research how to get what I need. It's not easy for me sometimes with my disabilities. For instance I also have dyscalculia so the budget has to be read over at least four times before it matches up. I also deal with executive functioning issues so it sometimes takes me awhile to figure out what I am doing, but once I figure it out, I do it well.

 My husband is the body. I would probably fade away without him not because I am reliant on a man but because his skills are the opposite of mine and what I need to live. I can't cook or drive outside of my ordinary route. Because I am prone to accidents there are many physical tasks I am unable to do thus he takes over them. I can't mow the yard or use power tools. My husband can do all these things. He provides enough money to get us by while also being around to drive us to the appointments and make the main meals. He is there to buffer me when I get overwhelmed with the sensory and can not stand up to the doctors or professionals.

My daughter is able to organize us all. Something none of us can do otherwise. She is the mother of the home. She knows when everything is going down, how to get it done and when. She also makes sure that I am using the oven safely or doing a task without injury. She is the Rory to my Lorelie. She is also my buffer when the other one meltdowns at me, yells, and sometimes causes me to be in tears. She helps me stay calm and parent effectively.

My son is the astute observer. He says sage wisdom on a daily basis. He also is the only one who has taken after his dad in the cooking department so we rely on him for most lunches or food ideas when my husband is gone. Due to cognitive functioning fails my brain can not wrap around IDEAS for food- I just can't think of any. I am blank all the time yet I can entertain deep complex ideas. It's a weird conundrum but my son knows the safety rules and is good at following protocol.

My other son is the cheerleader. He is the one whom everyone hugs. He makes cuddles seem ordinary and his hugs don't bother us the way other hugs sometimes do. He is the humorist. He basically pukes rainbows. He makes us laugh, spouts off happy sayings, connects philosophy to our situation, forces us to be a bit more extroverted at times, and reminds us to love life. He is our heart. He can't do many chores, make his own bed without continual direction or even sweep the floors even though we have gone over and over how to do this since he was five, but he can uplift the mood in a room in a matter of minutes.

We each have extensive list of struggles. Every day each of us has things we have to help the other with. We are not a typical family. From tying laces, to making meals, to math, to reading, to attention, communicating, to arguing effectively, to walking down stairs safely, to remembering...normal families do versions of this of course, but for us, EVERY day is a day to help each other get through it within our safe home. I can't imagine doing what we do in a school or professional setting. We are a team. Sometimes we break down completely- some days are a complete write off. However, we are each unique and have something to give. We have created a niche that makes it work. Is the world like this? Generally no, but we will deal with that as it comes. Our goal is not to live for what if's but also to be prepared in some cases. But as with parenthood, most of life is learned in the moment so we are not too stressed about future outcomes.

To be honest another big factor that got us on this path was jealousy. I honestly believe the tougher aspects if feeling can bring us to better feelings. Bad is not all bad and jealousy propelled me to assess my life. Long ago I was jealous of a mom talking about her life. I wanted that peace and love of family life. I learned that jealousy is often a sign of desire and a need to change life in oneself. So I did in this regard gradually and now I'm rarely jealous of anyone. If I am jealous of another's actual life, which is very very, very rare, It means I need to tweak my choices to align with needs and desires. Or I need to find a good place of more privilege or search out my own. Years ago we had very few privileges provided or options yet we stayed in the same place searched them out and have them. It's not easy and takes awareness but it's easier than envying another life.

CONCLUSION

This all seems both natural to me and sometimes surreal. My life is odd. It's good but it's odd. I have adjusted to it but sometimes when I hear other people talk I realize how deviant we are. We are not a norm and I would probably be in an asylum if we had to be "normal". My kids would be not as normal as they seem today and our family would probably already be falling apart. We are what we are because of the decisions we made to be weird together and live parallel to culture. Because we couldn't afford to keep up with all the appointments required in normal lives so we cut them out. From church, to job to school to dance classes. We found ways to build similar supports and enjoyments without the massive commitment factor because we simply can not commit. Our innate understanding into our abilities and our struggles ( or disabilities which is a term I try not to use much even though in our culture what we struggle with DO add up to being disabled unfortunately) gave us a needed boon in the chaos. Our willingness to make drastic and tough changes also helped.

The psychologist who visited our home summed our situation up well, "Looking around your home I see creativity, initiative, uniqueness, quirkiness and a love of learning. I am not concerned if your child can not write his name yet or read a book. That will come if it needs to come and if it doesn't there will be ways to work around it. Of course we want your children to become the best they can be but we also want them to be WHOM they are. We want to help them within their own limits and set a few new, appropriate ones. I print out thirty page assessments but I have dysgraphia so I put all the information into my computer with voice. It may have a few more spelling mistakes but otherwise no one knows that I didn't type it out- and does that really matter? Thus, we want to find ways that your children can communicate their needs to the people that matter in their world, and leave the rest behind. More importantly we just want them to feel important and use their unique selves in the world. Looking around your home I am not concerned that they do not have safety, love, creativity and nurturance. Some milestones will come on their own, others will have to be worked on, but some will have to be left behind in a new definition of "normal."

At that moment I realized how lucky I am. NONE of the psychologists I have had have said anything that lined up to my personal beliefs so accurately. It is rare to find a professional whose ideals closely line up to ours. To have one of the most sought after professional in our province, IN OUR HOME, giving tips, and supporting us, felt like the defining moment of "this is going to work." I have been on the battlefield since my eldest son was a baby. I knew he was wired differently when he screamed instead of cried. As I grew I became more aware that my children needed different things in the world and so did I. To have a winning victory in a crucial moment was an instant boon. To have a knowledgeable guy in our home who even met with our school facilitator to explain to her his thoughts on our goals, was a massive win. I felt like jumping up and down with glee when he left. It was euphoric.

We will have more loses, more misunderstanding, frustrating experiences and meetings with "professionals" we will never want to repeat again. But within that, there WILL be moments where we will be SEEN. When we will find support, healing, and validation in our being. That is what matters to me the most. Those are the moments I want my kids to continue experiencing on occasion into adulthood.

Our government has both failed us and supported us. We have had moments of clear support and moments without anyone else but us fighting for our needs. We have been exhausted and filled, sometimes in the same moment. In the end though, what is the most important fact, is that we have each other and we know we are worthy. We know we are unique and we are honouring that. We have found a safer way of being in a world of those who fear difference or ignore it altogether. We are a team and will continue to be.

For more information see the side links of Musing on Aspie. Not only does this information pertain to only autistics but many who deal with executive functioning, sensory issues, and differences...
Song Choice: This was my children's favourite family movie when toddlers. We watched High School musical over and over...but I see why...see if you can figure it out:)

6 comments:

Ashe said...

It really is quite fascinating what a few wiring configurations can do to the rest of the body. They did finally realize sensory issues often come with autism, so perhaps someday they'll start a more full-body screening for various comorbids.

That home visit psychologist was quite impressive. That was one of the most realistic and sensible things I've heard a professional say! Probably because they dealt with dysgraphia. The best diabetic specialist we ever came across also had diabetes himself. Graphs, charts, and milestones are great and I'm certainly a sucker for them, but there are many times they need to be acknowledged as guidelines rather than rules. Sometimes a body is going to be its unique, cantankerous self whether the mind wants it to or not. :P

Some say giving a kid under the age of 15 any responsibilities beyond taking out the trash is bad, but a long time ago kids did have more responsibility and I should like to think everybody working together is going to be a good confidence boost for your kids and make it easier for them to become healthy adults.

Kmarie A. said...

as he: Yes it is isn't it? That is true for the comorbids...already there is quite a few. Its not typical to just have ONE diagnosis.
Yes he was amazing. I love him. He is jolly and I want him in my house all the time just to pick his brain. He has such good energy and he really matches up to my ideals in many ways. It was the best thing I have ever heard too...and yes his disability probably helped him. I find people who actually live the disabilities are the compassionate and most helpful and least ableist. I agree with milestones ect but at the same time being flexible.

Well, if a kid is in school they have tons of responsibilities in a different way but they should be helping out at home as that will be there life- may as well get used to it.:) I think it's important but I know there are various thoughts on that!:)

As always, I appreciate you leaving your voice here!:) Happy October! It is now the best months of the year...!!!:)

S said...

Its one of your best posts, Kmarie. Very helpful. I can relate to everything that you have written here. Of late, life is getting more difficult for me because the questions are increasing. By questions, I mean the curiosity, enquiry and questions from other "normal " people about my choices in life. They find my life and choices, "strange/abnormal/confusing " ( in their own words). I am also getting more frustrated at this. So, again I go into 'Self searching/soul searching " , whatever it requires to regain the faith in myself. I can understand your struggle because I am in the same place now and have been in similar places before. I have been masking myself also, to the point of being "over polite", in fact, more polite and well behaved than the NTs so that I at least don't get those "strange" looks ! But it has been taking a toll on me. Being polite yet drawing boundaries-is what I do- the balance that you are talking about.
I also want to add that there are certain spaces where I feel very comfortable- creativity, music and dealing with anything non-humans like plants, books, housework or crafts and creative work , also music. Society and social communication is so confusing and frustrating, it is not simple. Simplicity lies in non-humans...in music,book,nature,housework....which does not require human interaction.
Simplifying my life is all I want to do although I love intellectual activities and I question everything...yet having a simple life keeps me balanced.
Since the majority will not understand us, therefore it is up to us to safeguard and nurture ourselves. We have to find out ways. For me it is spiritualism ( not a cult or group but an individual /solitary belief) . We were born for a reason or purpose...maybe to challenge the authority or the established order or to find loopholes in a system that thinks that it can work fine by ignoring the minority. Somewhere I read that "-God created fools, misfits, weirdos, simple people, strange people etc.etc. just to embarrass the intellectual, intelligent and wise." Although I am not saying that low IQ means fool but I want to say that everybody is here for a purpose. Even if u rule out the purpose, I mean Purpose or not, everybody has the right to be happy...and live his life in his or her own way.

Kmarie A. said...

S: Thank you. I am sorry life has been getting tougher for you in that regard. I think the less people in our lives actually speaking physically in them ( not including our online support and close relationships) the better personalities like ours will do. We need a ton of space. A hermit like existence to thrive. Its not typical and in fact I think very few people thrive the way we do with that...but we also like our communication and support...just not in the typical way. AND YES to the non human interaction things like nature, housework, books and music that still involve the history and talent and shared human history but do not actually include the messy opinions of others as such...that is what we thrive on and stay balanced on...For me I also include my children and husband in this...and yet I still need sufficient alone time or I get cranky.
It is up to us to safe guard and yes I agree...lol...that is an interesting quote. I agree that low IQ does not mean fool as the lady with the low IQ had higher emotional intelligence than the "smart" people I know but she simply can't apply most functions to life. There are all sorts of smart as you say..and the purpose of everyone is so varied and lovely. I love people in theory and their messy stories and lovely individuality. I just can't handle interacting with specifics for long periods. but I do enjoy time immensely on rare occasions, spent with a group. :)
Love your thoughts.

Anonymous said...

Wow! A powerful piece.

I think if you were able to distill this further, it would be good to share a 2 page summary with those professionals who interact with you regularly as it paints a clear picture of who you are as a family.

Are you up to distilling this creative piece. I realize it is trying to shrink a large painting by one of the masters onto a postage stamp. But I think it will be worth the effort - it would be something that would be an immense help to those who are struggling to identify with you.

Please give it some thought.

Kmarie A. said...

I could probably condense it at some point for sure:) I am sooooo long winded:) but thank you and if I do I can send you a copy if it will be helpful:) I love that image:)