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  • The Film “Purple Hearts” Parallels the United States Healthcare Crisis (SPOILER ALERT)

    The Film “Purple Hearts” Parallels the United States Healthcare Crisis (SPOILER ALERT)

    Purple Hearts is a movie that is on Netflix. I heard about it in groups for parents of type one diabetics. I thought I would see how it is. Type one diabetes is an autoimmune disease where T cells attack the beta cells. The beta cells are cells in the pancreas that produce insulin. As a parent of a type one diabetic, this whole situation really scares me.

    It’s about a young woman, named Cassie who recently was diagnosed with type one diabetes. She is a singer in a band and is having trouble affording her insulin. Her best friend, Frankie is in the Marines and he is home but ships out soon.

    Cassie’s band never performed original songs because she was afraid to. She only did covers to songs other people wrote.

    Cassie is a leftist, anti conservative and very pro inclusion. She is very outspoken about what she believes. Her mannerisms make me think she is an autistic character, or at the very least neurodivergent.

    Cassie takes five minute breaks while she is working in order to give herself injections in her car. She realized she runs out of insulin and goes to the pharmacy. Her insurance ran out and she cannot afford it. Her mother gives her some money but it isn’t enough. She cannot get her insulin for four days and she just leaves and says she will figure it out.

    The next day, she nearly passes out from a complication of type one diabetes. The movie wasn’t specific if she was low or high. She asks Frankie if they can get married so she can stay healthy. The health benefits would more than cover the things she needs to stay healthy.

    This perfectly illustrates the healthcare crisis in the United States. about 100,000 Americans die every year due to the lack of access to insulin. Some ration their insulin. This means they don’t take their intended dose in order to make it last longer.

    When she asks her best friend, his bunkmate, Luke, says that his dad is military police and they both can get in serious trouble. He would turn his own family members in. They drop it. Frankie has girlfriend and she would not have like that very much.

    Luke is very conservative, pro guns, queer phobic. Essentially, he his Cassie’s polar opposite.

    This does happen a lot. Fake marriages help people get healthcare, citizenship and other things that other people take for granted. Please keep this in mind.

    Before this encounter, Luke gets hunted down by his drug dealer. Luke is a recovering addict and is clean. The dealer, Johnno, chases him down because Luke owes him $15,000. Luke tells Johnno that he ships out in a few days and will get him the money. Johnno playfully threatens his family.

    When people have under the table debts that they cannot pay, the people who lend it often go after the family of the people who owe them. It happens more times than people hear about in this country.

    A few days later, Luke brings Johnno some money and it wasn’t enough for Johnno. Like mentions that he knew a girl who needed health insurance and he could give him the extra $2000 until his debt is paid. He seemed fine with that.

    After thinking about this situation, Luke asks Cassie to marry him. He owes this money and there is a $2000 raise for being married and Cassie needs medical care. They had to go over different details about each other to make sure they would not get caught.

    They do get married by another member of the military. Frankie gives Cassie a ring to get married with. This ring he was going to give to his girlfriend but he wasn’t going to propose until after he comes home from his tour. This ring belonged to his mother. Frankie tells Cassie that she would keep it safe.

    Right after the wedding, the couple meet the rest of the platoon, the group of the marines that Frankie and Luke were serving with. One of the marines made a racist comment, Cassie corrected them. There was a huge argument and Luke stormed out. They had to make it look real. She then followed them and they made it look like they were making up.

    After dinner, Cassie and Luke went to the hotel that the rest of the Platoon were staying at. It was next to the military base. It was just easier. As much as Cassie and Luke do not like each other, they wind up sleeping together anyway.

    During the deployment, Cassie sees an endocrinologist. She gets an insulin pump and CGM. She starts to be able to actually live and not worry about if she will die overnight.

    When A came to us with just a vial of insulin, glucometer and ketone strips we were lost. We brought him right to the hospital to get a baseline on his care. After he received Florida medicaid, he saw an endocrinologist. This is when he was fitted with a Dexcom. Before Dexcom and his pump, he was on two different kinds of insulin. Short acting and long acting. A is insulin sensitive. 1/2 unit of the long acting insulin made him go low every night at 4am. If he didn’t get it, he would be high. We had to judge it for ourselves until he was comfortable with a pump. It isn’t as easy as it might seem. Seeing her with her insulin pump and CGM made me cry.

    Cassie then has to drop off Luke to the base to be deployed. They play up the newly weds in love. They have to play up all the communication. The communication turns into Cassie writing a song for Luke and her singing it for the company. She did it on a day that did not go well for them and it really lifted their spirits.

    Luke pushed Cassie to submit her songs to different record companies. She wound up getting signed and being successful.

    This goes to show that when someone is successful, it is never by themselves. There are always people that help others along the way. The ways they are helped are both large and small. How did people help me with my business? My partner had the idea and it wound up taking off and doing well. It is how we make my money and support my family.

    Luke wound up getting hurt while in action and was sent home. Before Luke was deployed, he was told to talk to his brother but she did not know that his brother and father have the same name. She wound up talking to the wrong Jacob. Oops.

    Luke did not pay Johnno all the money he was promised. Johnno wound up going after Cassie’s family. Cassie’s mother is a Hispanic immigrant and the police wound not coming. Cassie obviously got really angry and kicked Luke out.

    After this, Luke hunted down Johnno, threw the money at him and beat him up. He warned Johnno to stay away from the family. Later on, Johnno reported them to the military.

    Soon came the court martial. Something surprising happened. Luke took the blame for the entire situation. He said that Cassie had no idea it was illegal. This prevented her from being charged and prosecuted. This made her think. He wound up being sentenced to 6 months inprisionment.

    Cassie tried calling him and no answer. She wound up speeding in her car and barely made it to see him before he was taken into custody. She told him that this was a real marriage and she would wait for him. They both realized they both love each other.

    This movie does parallel a lot of the social crisis that this country does face. The most obvious one is the healthcare crisis. Thousands of Americans die every year due to inadequate healthcare. This is usually due to people not being able to afford it for serious health conditions, like Type One Diabetes.

    Another crisis is the addiction crisis. People turn to these substances in order to deal with different circumstances that are not under their control. The unspoken side effect of addition is owing shady people a lot of money. This not only puts the addict in danger but their loved ones instead.

    Another crisis that the movie touches on is the crisis immigrants face when coming into this country. Immigrants can get a job, pay taxes but cannot vote. They cannot vote until they get a green card. A lot of times some immigrants never get their green card and not afforded rights that people who are born here are.

    One myth that the movie touches upon and cracks is that people can be self made. No one is successful by themselves. There are people encouraging, supporting people who are trying to make something work. In this case, Luke was pushing Cassie to submit her songs to record companies and she wound up being successful.

    Please take the lessons that this movie teaches and not cheapen it by hating it because a fake marriage took place. In many situations, these fake marriages are necessary. Until the system changes, these fake marriages will still be happening to help people survive.

  • Systematic Erasure of Jews is Really Obvious When Researching Geneology

    A sense of identity is really important to people of any age, especially children. This can be hard. This is not just gender or sexuality identity. It can mean family history. This can be especially hard for kids who are not being raised by their biological parents.

    My biological kids know they are Jewish from my side and German/Italian from their dad’s side. Because the other kids are biologically related to my partner, it makes it a lot easier. I am in college so I have an ancestry account so it only costs me $5 per month, which is nice.

    I started with my side since I knew more about it first. I started putting in info about my parents, grandparents, uncles, etc. I started to get clues and it was really interesting to see info on my mother’s father. He died the year I was born and she refused to tell me anything about him. I was able to track that line until they emigrated to the United States.

    When I tried to find info about my family before they emigrated, there was a dead end. I later found out a lot of the vital records on Jews have been destroyed during World War 2.

    This left me depressed and sad. I was told that my family left before Hitler came to power. Logically, all my relatives couldn’t have all agreed to board the boat to Ellis Island. I am sure I have family that died in the Holocaust but I have no idea who they are.

    After I run into this dead end, I think of people who say there is no systematic antisemitism. The dead end I ran into was systematic eraser of Jewish people. This makes me sad, angry and depressed. People who want to learn about their families cannot. This is all because of hate. I will never stop trying. I know I will find more but it will take a while.

    In contrast, I started research on my partner’s step mother’s family. This person is his half siblings’ mother. I found out quite a lot actually. Her father was mennonite and they kept amazing records. I found the relative that A was named after and it was interesting to read his obituary. I was able to trace the family back to Switzerland, England and France to the 1300’s. No issues finding info on this family.

    I then researched my partner’s father’s family. I am still going through hints. There are SO MANY. I found they are German, the last name Seigler is German, French, and Irish. His mother’s side I knew because my mother in law talked about her family a lot. Her brothers are helping me trace them back. They are 100% Italian.

    I am unable to trace my family before they emigrated to the United States due to Jewish records being destroyed. This is disgusting erasure of Jewry due to the Nazis. This is the very definition of generational trauma. I am sure the Romani people experience the same.

  • After You Come Out, You See Obvious Signs In Your Past

    Coming out of the LGBTQIA closet is just as hard as coming out of the autistic one. You are afraid people will judge you and not see you for who you are. Coming out of the LGBTQIA closet was really hard because how I was treated in middle school and high school.

    Growing up, I always knew I was “different from other girls.” I knew I was different but there was no name for it or I did not know the name for it. My mother wanted a girly girl but that wasn’t me. She always told me,”You need to meet a nice Jewish Boy.”

    The first sign of dysphoria was when I was 7. This was soon after I was diagnosed with ADHD. I was starting on Ritalin. I remember this because the school nurse showed me how to swallow by putting the pill on the edge of a paper cup and letting the water push the pill down. I really liked the nurse.

    Anyway, it was picture day. I wanted to wear shorts and a baseball shirt because thats what I was always wearing. There as a purple dress my mother wanted me to wear but I did not want to. She literally held me down and forced it on me. Here is the school picture she got:

    I see the pain in my eyes and I remember crying all day. I had just washed my face and I cried after this photo was taken.

    Notice the difference between that and this photo on the baseball field.

    About a few years later, we were all sitting at the table for dinner. My father would always watch the news while we ate. They showed a lesbian wedding. Just keep in mind this was late 1980’s to early 1990’s. I was watching intently and I said,”COOL! Two girls could get married?!” Both of them screamed NO and turned it off. Looking back I laugh at them freaking out over this.

    The next sign of dysphoria was around the time of my bat mitzvah. That was November 11, 1995. This dress was itchy and I was really uncomfortable in it. It came with a jacket. Looking back now, I always felt dysphoria when it came to my chest. I didn’t really develop it here because I was a late bloomer. No period until I was 16. Looking back I am thankful for that.

    Anyway. I said I didn’t want it. I didn’t want a big party. They even used the money I got as gifts to help them pay for the party I DID NOT WANT. In this photo my father’s parents told me I should be grateful they could do this. This is the grandmother who fat shamed me once I developed PCOS symptoms.

    Quickly read the link above about middle school and high school. To give a summary, I was told I needed to go to a dance in 7th grade. I went, my best friend at the time was upset in the bathroom and I went back and forth to check on her. This turned to a rumor being spread around that I am a lesbian. I did not even know what it was so I asked my parents. They asked me how I knew so I told them. They told me I was lying. I was so upset. Due to this rumor, I had NO FRIENDS and I was the outcast. I do believe my gender identity and my sexuality was suppressed due to this experience. They did not believe me until another friend came over when I was home from college and she verified this. It was awful. They told me I must have given them a reason to believe this.

    A clue about how my parents are about being queer happened after I got married but before I had kids. She was visiting and Nick needed the car so she brought me. In the car I asked,”What would you do if I was bi?” She told me she wouldn’t want to know. Then I never brought it up again.

    After moving to Florida I learned more about gender identity and I had a light bulb moment. The term for feeling different than other girls but not feeling like a boy is non binary. I was so excited that I found a term for it and it made me feel whole. But because of the interaction with my mother about being bisexual, I never brought it up outside my husband and his family.

    One thing I am thankful for is that my children will NEVER have to go through this. Two of my children came out to me like it was no big thing and thats the way it should be. No drama, no fear of being kicked out.

    When I made that long post about my history, sexuality and gender identity, my rabbi emailed me and offered to replace our tattered Jewish pride flag. For the first time, I was seen for who I was. A huge weight was lifted but I was left vulnerable. He contacted me in my preferred communication method. He respects us for who we are and I will be forever thankful for him.

  • Bogus Study: Suspected Feigning of Autism in Adults: A clinician Survey, Indications and Proposed Guidelines

    A study was published in the journal Advances in Autism on January 21, 2022. It was an online survey that was targeting a range of autism professionals with varying levels of experience, working in clinical settings.

    Half of these professionals that completed the survey reported experiencing situations of suspected feigning of “adult autism” across a range of clinical contexts and with different motivations. They saw textbook self descriptions and inconsistent problems.

    This can happen but as inaccessible as a diagnosis as an adult is, it is very unlikely.

    By the study’s admission, the survey is limited by a potential sample bias and no information regarding the clinical characteristic of those suspected to have faked. This was an internet survey. Because of this, there was no way to verify the identify the respondents to see if they actually are professionals or not.

    This study was not found on science hub. This is because surveys are not scientific.

    Take my diagnosis for example:

    I had an in depth diagnosis of ADHD when I was 6. Little girls in the 80’s just were not diagnosed with any neurodivergency. This report is 28 pages long and lists all the developmental milestones that my mother answered at the time. The doctor looked at this and had all the information he needed. My autism diagnosis is very unusual because most people do not have a report like this. Thank goodness my mother saved this. If she did not I would not have a diagnosis.

    An example of a survey about autism does that is effective and not biased was done by Autistic Not Weird.

    Survey as Data Collection

    They used a survey for data collection. They had 1183 respondents. The respondents were 16-90 so not all of the respondents were adults. This is a small sample size to represent autistic adults everywhere. Not only that, the demographic was only white, AFAB and have a high school education or higher. This sample size was in no way diverse!

    Why aren’t surveys reliable?

    A survey is not a scientific method. There is no way that the responses of an anonymous survey can be verified. There is not guarantee that people would only answer honestly. It is far too easy for people to misrepresent themselves behind a computer screen. There is often a reason to misrepresent. Because of this fact, a question is raised of whether or not surveys can provide accurate data.

    There is solid evidence that surveys are unreliable and gives skewed results. This is a systematic problem that there are a plethora of studies focused on a phenomena called hypothetical bias.

    This study has so many holes, I could drive an 18 wheeler through it. This is just a tactic to delegitimize last discovered autistic people.

  • When Teaching My Children IFL, The Unexpected Happened

    Identify first language is a cornerstone of the autistic community. It tells people that autism is a part of us and that we cannot “have autism.” I teach all my kids that they are no ill diseased or broken.

    When Boop came home, we had to undo all the ableist nonsense that was put on her. The aunt that she was living with that abused her told her that she couldn’t do certain things because she is autistic. Even denied her to go to J’s and Roo’s b’nai mizvot. The said she couldn’t handle it when she grew up in our shul.

    I explained about the puzzle piece and how harmful it is. I also explained that person first language can be harmful. She calls herself autistic and is proud. Even picked out a shirt I designed. I thought that was adorable. I always reiterate that there is nothing wrong with her. She really got into it.

    She is happier now that she is home and that the people she is surrounded by believe in her. There is a huge shift in her mental health and it’s a beautiful thing.

    What happened At School

    So one day when we were at scouts and we were ready to sit down and complete an activity, Boop looked like something was bothering her. So I asked her. She told me that her PE teacher told her she can’t use identity first language at school. At first I was angry. But I calmed down and waited a day to email the school.

    I didn’t have the PE teacher’s email so I emailed the teacher explaining what IFL is and linked her to an article by ASAN. She responded over the weekend, which I was not expecting. She said she would forward the email to the PE teacher for me. A few minutes later she thanked me for educating her and will respect Boop’s preference.

    A day later I got an email back from the PE teacher. I found out what happened. Boop was correcting other kids and telling them that the way they identify was wrong. She made a lot of the kids upset. I saw this email and I laughed to myself and said,”I created a monster.” I told the PE teacher that I would speak to her.

    Later that day, I spoke to Boop and she understood. I told her that a lot of the kids at school have neurotypical parents who don’t know about neurodiveristy. I told her she was lucky to have neurodivergent parents and siblings. She told me she felt bad for them but won’t tell them how to identify anymore. The PE teacher apologized for upsetting her. She really cares about all the students and Roo didn’t believe it happened and before I wrote the email I promised I would are calm. He loves this teacher.

    After this conversation the PE teacher emailed again. She thanked me for educating her on this and will be more sensitive to this in the future. I took this opportunity to educate the teachers and they were really receptive. I was not angry in the email. I normally would be.

    I guess my point is when you are teaching your kids about IFL, make sure you tell them not to tell other kids at school how to identify. You don’t know what they were taught at home.

  • Type One Diabetes Can Develop In Adulthood, Know the Signs

    Type one diabetes is an autoimmune disease.It is also called juvenile diabetes but it can also develop in adulthood. If you have been reading my blog for a while, you should know I have a son who has type one diabetes. This auto immune disease causes antibodies to attack the insulin producing parts of the pancreas.

    Type one diabetes is an autoimmune disease where antibodies can be tested for. It does not tell you if you have it but if you have a chance of getting it. It can be triggered by an illness or virus.

    What happened?

    As many of you know, about 1.5 years ago our whole family had covid. This was before we were all vaccinated. This was before potato was born (fun fact: her mother was covid positive when she was born and she was covid negative).

    A few months after we all recovered from COVID, my partner went for his normal yearly bloodwork. He logged in and asked me to read bloodwork. It showed his glucose was high. I saw he had diabetes before the doctor did.

    Soon after the bloodwork came back, he talked to the doctor. The doctor told him that he had borderline type 2. They did not want to hear that his biological brother has type 1 and there is a high chance of siblings having it if one already did.

    The doctor put him on a medication called metformin that decreases insulin resistance. He checked his blood sugar daily and changed his eating habits. They refused him a referral to an endocrinologist.

    His blood sugar was still running high and they were ignoring him. One doctor at the practice even told him its because he is overweight. He isn’t even that much overweight. He saw that the doctor was little on the heavier side too. “You don’t have room to talk.” The doctor went silent and left the room.

    He just had his bloodwork done last week, and his fasting glucose was over 300. They called him for an appointment right away. A different doctor saw him. HIs first reaction was “what did they do?” A few of the tests that were supposed to be done were not done. They told him he may have type one because the medication was not helping with his blood sugar at all.

    My partner asked,”You going to send me to an endocrinologist NOW?! I don’t want to sit on it any more.” The doctor thinks this was triggered by COVID.

    They wrote him the referral, sent out for more blood, but the soonest appointment for that is in two weeks. This infuriates me because there is a lot of kidney failure in his family. His mom, his father, brother and grandfather. Our son N was born with VUR.

    After the appointment,he told me he lost 20 pounds in 2 months, have been really thirsty and urinating a lot. He told me the first thing he will say to the endocrinologist is that he wants a deacon because he doesn’t want finger sticks. I laughed a little. He also told me he has been checking ketones regularly because he has seen how sick A has gotten in the past.

    Since we have to wait 2 weeks for the bloodwork, he is monitoring his blood sugar and ketones until he can get to an endocrinologist and get what he needs. I will update as things progress.

    The Signs of Type 1 Diabetes

    • Increased thirst
    • frequent urination
    • bed wetting in children who previously didn’t wet the bed
    • Extreme hunger
    • unintended weight loss
    • irritability and other mood changes
    • fatigue and weakness
    • blurred vision

    Please if you have a combination of these, get checked. Looking a this list of symptoms, he has had most of them. Type one diabetes is a fatal condition, if not properly treated. Thank goodness that we have experience with it to keep my partner safe until he can get to a specialist. I would hate to know what would happen with people who had no idea. The fact that they let it go for so long with no specialist is scary.

  • Disability Hacks: How to Get a Free ADHD/Autism Evaluation if You are in the United States

    Diagnosis access is almost impossible in the United States. Insurance does not cover, a lot of people are uninsured or the evaluations are just for children. A lot of people are not lucky like I was to get an ADHD diagnosis in the 80’s. I was able to get a free free evaluation on Social Security’s dime without needing insurance.

    What Did I Do?

    I was trying to get re evaluated because my only evaluation was when I was 6. When trying to get help or services, I was told that my evaluation was too old. I was uninsured before the affordable care act because through my partner’s insurance, if I was added the price increased 3 times!

    I applied for disability through social security even though I KNEW I would be denied. Why did I do this? I knew if they couldn’t get the right information from my evaluation from the 80’s, they sent me to a neuropsychologist for an ADHD evaluation.

    They only send appointments via US mail. Make sure you watch your mail for your appointment letter because you will need to bring that with you along with any records if you have any.

    This process can take several months but be patient. They don’t tell you that you can request the record from them after you get denied or approved.

    My diagnosis was updated from ADHD in the 80’s, because ADD was a diagnosis at that time, to ADHD, combined type. I did this about 15 years ago.

    I really hope this helps someone!

  • Its OK Not to Be OK, Especially On Mother’s Day

    Not everyone has a great relationship with their parents and that’s ok. It’s hard to love yourself as a parent when you had some pretty bad ones growing up and you grew up in a toxic environment and I want you to know it’s ok not to be ok.

    I did not have the best childhood, in fact it was really shitty. My parents often let me know how much I ruined their life. I was put in ABA to try to make me more like them. I was religiously, physically and verbally abused. I was broken at a young age. I was even told I did not deserve a 16th birthday. They didn’t even acknowledge it until 6 months later. I was a girl and it was a big deal. I was taught at an early age that I was undeserving of help, dignity or anything positive.

    I know I am not alone and I see you.

    It took me a long time to be able to value myself.

    Going No Contact and Obeying Jewish Law

    I went no contact with my parents years ago. This was not an easy decision. It never is. I grew up in a Jewish household where they pounded into me the commandment “Honor Father and Mother.” Any anger or negative feeling I had towards them was turned on me and I was told I was a bad Jew.

    After leaving home and talking to the Rabbi in that town, he reminded me that in the Torah it also says ,”You shall be very watchful of yourselves.” He told me that it was my duty to care for myself and if it meant keep my parents at an arms length, I was to do it.

    He also told me that mental health is health. This was in the year 2000. He was very progressive. He also reminded me of Pikuach Nefesh, the Jewish value of sustaining human life. Mental health can be terminal and it was my duty to care for my mental health. I was really thankful for him.

    I did not do it until many years later. It was when my son Bug started using mouth words and my father was touching him and he didn’t like it. Bug said,”I don’t like that and I don’t like you!” My father asked me if I was going to say something. I said,”Great job for advocating for yourself.” After that, I cut contact.

    Struggling with Mental Health Service

    The toxic environment growing up, I was alway made to feel like I was undeserving of help and that did not end when I left home. When seeking mental health services, I did tell my parents, because I hadn’t gone no contact with them yet. The famous line from my mother,”Did you tell your therapist all what you DID to ME?”

    When I was trying to better myself, but of course my parents made it about them. After hearing this so much, I stopped receiving help. I felt like I didn’t deserve it and I needed to handle it on my own.

    I took hooking up with the autistic community for me to see that I truly was worthy. Nick helped and tried. He did not know how to handle a situation like this but he supported me as much as he could. I love his mom, I never called her by her first name. She filled in part of the void I was missing and showed me what a strong mother was. She even called them up a few times to tell them off. It was great.

    We met one year after I left home. I was just so good at masking, I did not let a lot of it show. It was because of the autistic community, especially Emma, I wasn’t here just to make people miserable. Thank you for that.

    After a while the mask was coming off slowly. I unblocked a lot of the memories from growing up.

    What was the Point In Telling You All This?

    Healing looks different for everyone. Surround yourself with people who support you. You do not have to take negativity and toxicity just because you share DNA with someone. It took me a long time to do this.

    I understand that not everyone can leave home and go no contact. I see you. Do what you can to care for yourself. You matter, you are deserving of love with no strings attached.

    It took me YEARS to accept that I am deserving of help. A therapist helped me gain the courage to tell my parents to take a hike because I knew thats what I wanted. I still did not think I was deserving of meds. I always thought that I did this to myself by leaving them and cutting off contact.

    THIS WAS NOT TRUE

    I have a psychiatry appointment this coming Wednesday. It’s scary but I feel good about it. I always preach about people taking care of themselves and its about time I do it for myself.

    How I Cope On Mothers Day

    1. Take Care of Yourself First

    If you cannot handle being around your mom, don’t do it. If you can for a small amount of time, do that. You should not have to sacrifice yourself for a Hallmark holiday.

    You can spoil yourself on mothers day. If you were your own mother growing up, then the holiday is about you. Get that plushie you always wanted, binge watch your favorite show or play your favorite game. Hell, sleep all day if that is what you need. Self care isn’t always candles and mediation but I find both helpful.

    2. You Can Create Your Own Family

    You don’t have to get pregnant or get your partner pregnant in order to have your own family. If you have a pet, you are a family. If you are by yourself, you are a family. If it’s just you and your partner, you are a family. Do not let society dictate what constitutes a family.

    3. Allow Yourself Time to Grieve

    Grieving isn’t just for when a love one passes away. It’s to help you come to terms with losing your parents that you went no contact with. It is also grieving the fact you will never have the mother you deserve. It is a process. During this process, take care of yourself. You will need it. Take all the time you need because, no two people heal the same way.

    4. You are Deserving of Help

    Yes, you too. Everyone is deserving of help, being able to choose who they keep in their circle and anything to take care of themselves. Remember, battling your brain is not a sign of weakness, it’s a sign of strength. You are still here and remember I love you.

    How I Celebrate it Now

    It’s not easy but it is better. My kids and partner spoil me and I take the day off, mostly. I get to sleep in and my kids give me their handmade gifts and I am so lucky. You can make the day your own too.

  • Autistic History: Grunya Efimovna Sukhavera

    Grunya Kuhavera was a Jewish Ukrainian psychologist who discovered autism almost 20 years before Leo Kanner and Hans Asperger published their work. They did not have the first accounts of autism, Dr. Sukhavera did.

    Dr Sukhavera was born in Kiev to a Jewish family of Kahaim Faitelvich and Rakhil losifovna Sukhavera.

    Dr. Sukhavera graduated medical school in 1915 in Kiev. Upon graduation, she joined a team of epidemiologists that traveled to areas of Ukraine affected by outbreaks of encephalitis and other infectious diseases.

    When the Russian Revolution broke out two years after her graduation and medical professionals fled or died in battle, she joined Kiev’s psychiatric hospital. There was a shortage of doctors, so she helped where she was needed.

    In 1921, Dr. Sukhavera relocated to the Psycho-Neurological and Pedagogical Sanatorium School of the Institute of Physical Training and Medical Pedology(Russian term for psychiatry) in Moscow. This institution was opened to help orphaned, traumatized or displaced children due to World War I. It took a more scientific approach to understanding child development than most clinics at that time.

    The way this clinic was set up may have helped Sukhavera to describe autistic traits as accurately as she did. Her assessments were extremely detailed. They included the psychical health, noting hemoglobin counts, muscle tone, gastric health, skin conditions and other details. She documented small changes in behavior. These were lack of smiles, excessive movements, a nasal voice or a trigger to a meltdown. She spoke to many members of thier families when observing some behaviors that ran in families.

    First Observation of Autism

    In 1924, a 12 year old boy came to her clinic in Moscow for an evaluation. He was different than his peers and other people did not interest him. He preferred the company of adults to children his own age. He didn’t play with toys. He taught himself to read by the time he was 5 years old and spent days reading everything he could. He also had anxiety and frequent stomach aches.

    When Dr. Efimonva (before she was married) saw him, she was carrying and attentive. She saw him as “highly intelligent” and that he loved to engage in philosophical discussions. As a diagnosis, she called him an “introverted type, with an autistic proclivity into himself.”

    Autism was a Term for Describing A Mental Illness

    At the time she called him autistic, it was a new term in psychiatry. 10 years before this, a Swiss psychiatrist, Eugene Bleuler, coined the term to describe social withdrawal and detachment from reality often seen in children who have schizophrenia.

    Showing Autistic Children Were Different Than Schizophrenic Children

    When she saw this 12 year old boy, she used the word autistic like Bleuler did. But as she saw more children who had the same trait, she decided to characterize it more fully.

    Over the next year, she identified five more boys having “autistic tendencies.” All five showed a preference for their “inner world.” Each child had their own quirks and talents. One child was a very gifted violinist but struggled socially. Another child had a gifted memory for numbers but could not recognize faces. Another child had an imaginary friends who lived in the fireplace. None of these children were popular with other children. One child saw interaction with his peers useless. “They are too loud, they are hindering my thinking.”

    In 1925, she published a paper describing in detail the autistic features the six boys shared. Her descriptions were simple enough for the lay person to understand but they were well written.

    Setting Up Schools

    Throughout the years, Dr. Sukhavera launched schools all over Russia. Her reach stopped at the boarders, hindered in part by political and language barriers. Only a small fraction of Russian research from that time was translated into other languages that wasn’t German. Even so, her 1925 paper on autism traits appeared in German the following year but the translation butchered her name and spelled it as “Ssucharewa.” This particular paper did not reach English speaking countries until 1996, 15 years after her death

    Well Before Her Time

    According to Irina Manouienko, a psychiatrist who runs a clinic in Stolkhom, Sweden,”Basically she desribed the criteria in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5).” Dr. Manouilenko translated Dr. Sukhavera’s work from Russian to English in 2013. She then compared them tp the diagnostic criteria described in the DSM 5. She was in awe of the similarities.

    Basically, the Jewish woman doctor could have written the criteria before World War 2 that is written in the most current DSM. It took nearly a century for the DSM 5, in 2013 after years of debate. They just arrived back at the doctor’s list.

    For example, where Dr. Sukhavera wrote about “flattened affective life,” “lack of facial expressiveness and expressive movements,” and “keeping apart from their peers, it is a parallel to what the DSM 5 describes as social deficits.

    Another example is when the doctor descried as “talking in sterotypical ways,” the DSM portrays as stereotyped repetitive behaviors, restricted interests and sensory sensitivities.

    Dr. Sukhavera is not well known in the West but is the most well known name in child psychiatry in Russia, according to Alexander Goryunov, the lead researcher in the child and adolescent psychiatry department at the Mental Health Research Center in Moscow. She saw and evaluated these children when the Society Union was still in power, so there was some isolation.

    Work Reviewed in 2011

    In 2011, on the 120th anniversary of her birth, the Neurology and Psychiatry Journal reviewed her wide ranging contribution to the field. She published more than 150 papers, six monographs and several textbook on topics such as intellectual disability, schizophrenia, and multiple personality disorder and other conditions. She was also a gifted teacher and mentored some doctoral students.

    Why Her Work Was Lost For So Long

    It is not proven but it is certainly possible that Hans Asperger , who Aspergers Syndrome was named for, read Sukhavera’s paper in German and chose not to cite it.

    The first description of autism made by Asperger happened in 1938. Her description was published in 1926.

    In 2018, historians Edith Shiffer and Herwig Czech independently reported that they found evidence of Asperger’s cooperation with the Nazi Party. He sent dozens of disabled children to be murdered.

    It is speculated that that since Sukhavera was Jewish he may not have wanted to give her credit. Manoulienk speculates that he may not have been permitted to give her credit but no one will truly know this.

    Written like a parent, Sukhavera wrote that her goal was to help the children “stay connected with real life, its tempo and movement.” She was sensitive and intuitive as a clinician, it’s unfortunate that it took so long for her work to be accessible.

    Sources:

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5696677/

    https://www.scientificamerican.com/article/how-history-forgot-the-woman-who-defined-autism/

    https://link.springer.com/article/10.1007/s00787-021-01875-7

    https://www.researchgate.net/figure/Grunya-Efi-movna-Sukhareva-reproduced-with-permission-from-AV-Goriunov_fig1_274317752

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    Who I was Using Before

    I was using blogger for a long time. It was fine, very basic. I know HTML so I was able to customize a lot myself. It was no big deal. I was using it for about two years. Then Google decided to take my domain offline for NO REASON.

    After transferring my domain to WordPress, they send me an email that it was back online. It was back online because it was on a different server. ::eyeroll::

    Who I Switched To

    I finally had enough and switched to WordPress. It was a lot of work to get it the way I wanted it. It was A LOT of work but this blog platform is really intuitive and customizable. I was able to have auto forwards to the posts and pages new URL, customize the images, etc. The work was time consuming BUT worth it.

    Anyway, I chose a theme, and updated it like normal. It even allowed me to auto post to all my social media. With my executive dysfunction, this is extremely helpful.

    What Happened with My Site

    Fast forward to yesterday. I was doing some customizations and I saw my theme was acting funny so I chose a different one. I went through all the steps and noticed that it was not updating. I was getting frustrated. Went looking online and followed all the steps.

    How WordPress Stepped In and Helped

    Finally, I went onto the WordPress help chat and they were EXTREMELY helpful.

    Here is a transcript of the chat:

    fierceautieTue, Apr 19, 4:11 AM
    My site isn’t updating at all. I set a new theme and it didnt change at all. 

    WP.comTue, Apr 19, 4:11 AM
    Hi there! Let me take a look at your site/account. 

    fierceautieTue, Apr 19, 4:13 AM
    ok

    WP.comTue, Apr 19, 4:15 AM
    Do you see the correct theme here? https://fierceautie.com/2022/04/15/having-an-automated-smart-home-helps-a-disabled-family/

    fierceautieTue, Apr 19, 4:18 AM
    no

    fierceautieTue, Apr 19, 4:18 AM
    I tried on different devices

    WP.comTue, Apr 19, 4:19 AM
    Here’s a screenshot of what I see when I visit the blog post: https://d.pr/i/eC2VPK

    WP.comTue, Apr 19, 4:19 AM
    Can you take a screenshot of what you see at https://fierceautie.com/2022/04/15/having-an-automated-smart-home-helps-a-disabled-family/ and send it to me? 

    WP.comTue, Apr 19, 4:19 AM
    You can use https://snipboard.io to take and share the screenshot with me. 

    fierceautieTue, Apr 19, 4:19 AM
    thats what you are supposed to see. Why am I not seeing it?

    WP.comTue, Apr 19, 4:20 AM
    It could be caching issues. 

    WP.comTue, Apr 19, 4:20 AM
    I do see the issue with the old theme showing up on the homepage, so I’m investigating it on my end. But I see the correct theme when I visit a blog post. 

    fierceautieTue, Apr 19, 4:22 AM
    https://snipboard.io/e7uJPg.jpg

    fierceautieTue, Apr 19, 4:22 AM
    thank you

    WP.comTue, Apr 19, 4:28 AM
    It looks like we need some more time to investigate the issue. I’d need to follow-up with you via email. Is fierceautisticadvocate@gmail.com the correct email to reach you?

    fierceautieTue, Apr 19, 4:29 AM
    yes thank you!

    WP.comTue, Apr 19, 4:30 AM
    You’re welcome! I’ll send you an email right away and another when I have an update on this. Thanks for your patience!

    fierceautieTue, Apr 19, 4:32 AM
    great! thank you

    WP.comTue, Apr 19, 4:33 AM
    You’re welcome! 

    After I received this confirmation email, I went to bed.

    Sajib (Automattic) Apr 19, 2022, 4:36 UTC Hi there!I’m Sajib, a Happiness Engineer at WordPress.com. I’m writing to you regarding your message on live chat earlier. I wanted to send you a quick message saying we’re looking into the theme issue you reported to us on live chat.We’ll get back to you as soon as we have an update on this. If you have any questions in the meantime, please reply to this email.Thanks for your patience!–Regards,
    Sajib,
    Happiness Engineer,
    WordPress.com – Automattic

    When I woke up, I got this email:

    Norman (Automattic) Apr 19, 2022, 5:59 UTC Hi there,Thanks for your patience.I am now able to see the Dara theme on your website, but it appears broken because one of the plugins on your site is causing the CSS of the site to not load correctly.I recommend deactivating plugins one by one and checking which one brings back the site correctly.I used the Health Check plugin in troubleshooting mode and found the site to be working fine when I disabled all plugins (without affecting anything anything on the live view of the website )https://d.pr/i/jpQ39N Screenshot
    – https://d.pr/i/jpQ39NThis confirms that the issue is caused by one of the plugins. However to determine which one, you will need to run a conflict test by disabling them one by one and checking which one makes the site appear correctly.Thanks,Norman – Happiness Engineer | WooCommerce.com | Automattic Inc. |For free daily live demos on how to get started with your WordPress.com site, including audience Q&A, visit WordPress.com Webinars for details on webinar topics, schedule, and registration.

    After this, I deactivated plugins, one at a time and I found the one that was effecting it and the problem was solved. I replied with this email and I got a great response:

    Alex P (Automattic) 

    Apr 19, 2022, 12:40 UTC 

    Hello there!

    Thank you so much!!! I found the culprit. Thank you for all your help!

    I’m glad to know everything is working as expected now! I’m closing this ticket for now. If you need any further assistance, please reach out again and we’ll be here to help you 🙂

    Best,

    Alex P
    Happiness Engineer @ WordPress.com

    Learn WordPress – register for a free webinar: https://wordpress.com/webinars/
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    Thanks again WordPress, for treating my website with dignity and giving it the attention it deserves. They literally got it up and running while I was sleeping. This does not go unnoticed.