Current State of Mind

Turtle has been encouraging me to blog as a way to deal with my stress and anxiety.  I can't fathom how people can be so cold-hearted that they truly don't care when someone else's child has a disease that could kill them but can also be managed with modern medicine.  How do people look themselves in the mirror every day and not have even a smidge of guilt?  How can they truly believe that life should be be every man for himself?  That, because a child is born into poverty (or really just not born into privilege) that it's just too bad that they are sick.

• Sick people who expect everyone else to pay for them are the people who are causing all the problems with insurance.
• Why don't you pay for your healthcare/medicines/life-saving devices with the money you earn?
• Why should I have to give up my "hard-earned money" so that someone else can milk the system?
• The government is just out to take my money.
• It's a shame that people who NEED these social programs (meaning people they care about) can't access it when there are so many undeserving people who "abuse the system."
• Hasn't that person been sick/ill/dealing with that extreme pain for a long time?  Maybe it's time they just accept that's their life now and move on.  Get back to work.  Stop expecting other people to do for them.
• I'm able to push through my pain so anyone can.
• As long as we can afford care for our family, the system is working.
• *Those people* (of a different race, religion, gender, etc.) are just whining and want special attention.  I've never seen anyone actually be discriminated against.

I have seriously heard each of these comments.  I just don't get it.  I can't even respond because of the complete lack of understanding that we have societies because we are stronger together than we are alone.  The lack of basic compassion.  The assumption that they fully understand another person's perspective and situation which of course means that person is somehow lacking.

That's not to mention the people who wield God as a weapon and insist that anyone who has any misfortune in their lives are somehow complicit in their demise because they "aren't right with God."  Are you fucking kidding me?  And these people have managed to get into positions of power in our society.  What the hell?

I. Just. Can't.

Hell in a Handbasket

Hello friends.  I have a feeling I'm about to begin a cascade of political posts.  So much has been bottling up inside me and I've been mostly quiet with the exception of Facebook posts.  With VP Pence breaking today's Senate tie in confirming Betsy DeVos as Secretary of Education I'm done.  I can no longer stay quiet.  I WILL NOT BE QUIET.

I do not understand nor will I ever accept that access to healthcare is anything other than a fundamental right.  This country that deigns to call itself so "great" and yet allows its people to die because they can't afford to seek medical attention; doesn't at all support new parents raising the next generation with paid maternity/paternity leave; and now puts a person in charge of education who has no background in it, has never been to a public education facility or sent her own children to one, who has no idea how to measure student growth (or even that there was more than one way to do so!), and doesn't believe that neurotypical students should have to endure being educated with their atypical peers will NEVER be a GREAT country.  PERIOD.

Don't tell me that I have the right to move if I don't like the school system where I'm located.  Finding a comparable job, picking up and moving (especially with an autistic child who struggles with even the most basic changes in his routine), and having access to quality healthcare in the new location is NOT easy.  Yes, my husband could probably find a job in his field easily enough though I doubt it would allow us to stay together.  We depend so much on our support network.  When you have special needs kids, you have to.  We have two of them.

I've gotten really good at doing just the bare minimum and it takes all of the energy I have to do just that.  Hubby works his ass off like so many other men and women do.  He's a professional and his job doesn't allow for much time with his family.  We knew that when he started this path.  What we didn't know was that we'd end up with major health issues in addition to his grueling schedule.  It wasn't something that could have been foreseen.  Two years into pharmacy school, hubby developed Rheumatoid Arthritis.  His joints are incredibly painful and swell.  His feet and hands are the worst and his job requires standing all day and constantly opening and closing childproof bottles.  Try doing that for 10 or 12 hours a day, 5-6 days a week while your body screams at you to rest.  When he comes home, he has little choice but to listen to his body.  The medicine he takes to keep the RA from destroying his joints only helps the pain minimally and it compromises his immune system and can cause blood problems, heart failure, Multiple Sclerosis, seizures, and cancer.  But it's better than having his joints disintegrate in his 40's.  But it leaves little time for him to enjoy his family or even contribute to the household in any way other than his income.  Changing directions career-wise wasn't an option when he was diagnosed since he had already taken out expensive student loans for his education.  It's still not an option because of those student loans which can't even be discharged if we had to file for bankruptcy.

I have so much going through my head right now that I feel like I have verbal diarrhea as I sit here typing my thoughts as they come to me.  I'm going to take a break for now to go get Sunshine from the bus stop.

Until next time.
Willow

Return to Journaling

I've been needing to journal regularly again for a while.  So much has happenend in the last 8 months and I haven't felt that I've had time to journal but I have so much weight on my shoulders that I really need to get the words out of my head.  The Rainbow was diagnosed on July 9, 2016, with Type 1 Diabetes.  It has affected all of our lives so much in even the most minor ways.  Before her Dx, Sunshine's autism was always my number 1 priority.  Out of necessity, I've had to completely change my focus in life.  His special need makes life harder for him.  Hers can kill her very quickly.  Suddenly, an illness going through the house has now become a panic-inducing life or death situation.  

Type 1 Diabetes is a scary disorder.  I had no idea that it was an autoimmune disorder until The Rainbow developed it.  It's usually triggered by a traumatic life event or a virus.  In her case, I'm pretty sure it was triggered when she developed RSV at 3 months old. So many things just never added up and I always had a gut feeling that something was wrong with her health but I just couldn't put my finger on it....until I decided it was time for potty training boot camp.  

Ironically, the impetus for insisting she finally become potty trained was that I wanted her to start preschool this past fall.  Now that she is a T1D, finding a preschool to take her has been next to impossible.  In our county, we make too much money for her to qualify for public preschool at Sunshine's elementary school and finding a private preschool that has a nurse on staff to give her insulin shots is like the proverbial needle in a haystack. 

So back in June, I decided to push the potty issue.  She was doing really well and I noticed over the course of two days that Rainbow was drinking a lot of water - demanding it really - and was running to the bathroom every 20 minutes or so.  I didn't think much about it the first day.  The second day I began thinking it was odd how often she was going and actually started noting the time but I still passed it off as her just being enthusiastic about having mastered a new skill.  You go girl!  That second night was Friday night/Saturday morning.  Since I cosleep with her I'm in a position to help keep her from having nighttime accidents.  She got up three times that night to pee...and it wasn't a trickle. She had a full bladder each time.  Normally, she only woke up once or occasionally twice to pee so this was a red flag for me.  I was the first one awake Saturday morning and couldn't stop thinking about how much she was peeing.  I knew that excessive thirst and excessive urination were signs of diabetes and Rainbow has always had a really big pot belly and isn't slender in any way.  I began wondering if she could have developed diabetes so I sat on the living room couch and googled "diabetes symptoms in toddlers."   The Mayo Clinic's website was one of the first listed and since it's a legitimate source of medical information I decided to start there.  They had a list of symptoms of Type 1 Diabetes (at this point I'm still thinking she must have developed Type 2) and as I went down the list, I started checking off every symptom:

1. Increased thirst.  Check
2. Extreme hunger.  Check
3. Frequent urination.  Check.
4. Irritability and other mood changes.  Holy Crap, check!
5. Fatigue and weakness.  She had started taking naps again.  Check.
6. In females, vaginal yeast infection.  JACKPOT!

From almost the day she was born, Rainbow had suffered a yeast infection 6 out of 7 days a week.  I had brought it up repeatedly to her pediatrician, but was told that some girls are just more prone to them.  I had also noticed that she seemed to have problems whenever she ate or drank anything with even the slightest amount of dairy in it.  She would have a horrible bowel movement which would trigger an even worse yeast infection.  By now, she had already had one surgery because of a yeast infection that got infected with MRSA and spread to 4 lymph nodes.  When I read that yeast infections could be a symptom of diabetes in toddlers, I finally felt like this HAD to be the issue.  Of course, it was Saturday morning and Hubs had to go to work.  I went up to our room to wake him then followed him into the bathroom.  As he started the shower, I asked, "Do you think Rainbow could have diabetes?"  The look on his face said, "Are you completely crazy woman?" but he was smart enough to say, "I don't know.  Maybe you should take her to see her pediatrician."  I agreed to make an appointment for her on Monday and he left for work.  Throughout the day, I kept researching and was convinced I had found the answer to so many of my questions regarding her health.  

By 3:30 when Hubs came home from work, I was sitting on our bed talking to our housemate when he walked in and tossed a blood glucose meter at me.  I looked at it, then at him with a questioning look.  He said, "The only way to find out is to test her."  I couldn't bring myself to prick her finger with the lancet and asked him to do it.  By then, it was obvious he thought I was off my rocker and he was just doing this to shut me up (those are his words by the way).  He took her sugar and the meter read 478.  The first words out of both our mouths were, "Holy shit."  I felt vindicated and stayed calm because I really didn't understand the gravity of the situation.  Hubs freaked out.  He called the on call service for our pediatrician's office and as we waited for the call back, he convinced himself that the meter must be bad.  Within 5 minutes, we got a call back from the head pediatrician who assured Hubs that if the meter had a problem, it would show "ERROR" instead of a high reading.  He explained that we needed to take her to the ER immediately and that she would be admitted to the hospital.  I started packing an overnight bag for myself.  By the time he hung up the phone, I was ready.  Our housemate was prepared to care for Sunshine and I texted one of my other best friends to tell her what was happening.  
When we got to the ER, we were immediately taken back to a room.  The ER doc took her blood sugar and it came up 418.  That was the confirmation.  So, around 4:30 on July 9, 2016, Rainbow was officially diagnosed with Juvenile (Type 1) Diabetes and our lives changed forever.  We were notified that she would be transferred to another hospital for admitting and were given a choice of three hospitals: Children's D.C., Johns Hopkins, or University of Maryland in Baltimore.  At the time, Hubs had horrible insurance through a very small regional company based in Baltimore and the insurance was VERY strict about staying within network.  He tried calling the member number on the back of his insurance card and reached a recording saying that the office was closed and to call back Monday morning during normal business hours.  I had been to their website before and knew it was awful to navigate and here we only had our cell phones.  I wasn't getting clear reception and the ER doc was pushing us to send her to Childrens because our local hospital has an outpatient telemedicine option for followups.  I stepped out into the hallway to get better reception and desperately searched to see if any of the three hospitals were covered under this insurance plan.  God knows we couldn't afford a $50,000 hospital bill on our own.  Finally, I was able to find Johns Hopkins in their database so I rushed back into her room and told Hubs and the doctor that was where we were sending her.  The ER doc was pissed but grudgingly called the transport company to take her.   As it turns out, the doc had accused Hubs of not wanting what was best for his child because we wouldn't automatically allow them to transfer her to Childrens.  

As soon as I found out we would be heading to Baltimore, I texted our housemate asking her to start packing a bag for Hubs too.  I was still the calmer of the two of us, so I headed back to the house to get his bag and our other friend met him at the hospital with a bag of things to keep Rainbow busy.  I made it back just as the ambulance arrived.  I was still in a better mindset to drive 2.5 hours away and at this point it was around 9 p.m. so Hubs opted to ride with Rainbow in the ambulance and I followed in our car.  

We had to take a long route to Johns Hopkins (which is in downtown Baltimore in not the nicest section) due to a protest being held on the normal route.  Thankfully (or sadly) I know my way around JH as I've taken many friends there for various reasons. I parked in the garage and met Hubs and Rainbow in the pediatric ER where I was informed that they hadn't been notified of our impending arrival.   Thank goodness their ER is wonderful and quickly got us admitted.  They gave her her first dose of insulin and got her admitted and to a private room in the pediatric unit by 2 a.m. 

When you're first dropped into the world of T1D as parents, you are required to go through a crash course in managing diabetes.  Your child will not be discharged until both parents have passed the course.  No pressure.   There is a whole new vocabulary to learn and mathematical calculations to do every few hours.  You have to learn how to use a glucose meter and how to draw and inject insulin properly.  You need to know the signs of low blood sugar, what number indicates a low, and how to treat it depending on how low it is. You have to learn how and when to test ketones in the urine.   There's a special section on what to do when the diabetic is sick because they can end up in the hospital very quickly.  Frankly, it's terrifying and overwhelming and when you have a toddler who really doesn't understand what is happening to her it's horrible and you feel so inadequate as a parent.  It's worse than bringing home a newborn.  Finally, they send you home with a huge bag of supplies and phone numbers and tell you to call in that night with her numbers for the day.   That's the point at which I had my mental breakdown.  I wasn't ready to be her primary caregiver, calculating insulin doses. I hadn't even been able to calculate a single dose correctly compared with the nurses there.  How was I going to keep my child alive by myself?  I begged them to let us stay one more night so we did and we came home Tuesday.  

By then we had called the grandparents to let them know what was going on.  Hubs' parents were halfway across the country at a wedding the night she was diagnosed and were so freaked out, they left the reception early and took a red-eye flight home. They got Sunshine from our house and took him back to their house where they attempted to give him some semblance of "normal".  My parents were shocked and saddened to hear their little girl was looking at a lifetime of dealing with this disease.  

The day after we arrived home, Sunshine became sick and was diagnosed with hand, foot, & mouth disease.  Two days later, Rainbow contracted it.  That's pretty much how our lives go.  When it rains it pours.  Trial by fire.  When sorrows come, they come not single-spies, but in battalions.  About two weeks ago we experienced her first stomach bug since being diagnosed.  That wasn't fun.  We came really close to having to take her to the hospital.  T1D has completely taken over our lives.  Most days it's okay.  It's becoming second nature.  Then there are the days when I feel like I'll never get the hang of it.  It's a pain in the ass and requires so much preparation and forethought.  It really sucks on days when I have migraines.  

I've been experimenting with migraine preventatives for the last few months.  Topamax helped me lose a lot of weight which was great and it did help with the number of and severity of my migraines, but the side effects weren't worth it. Even on "good" days I felt like a zombie and Rainbow's diabetes control slipped.   I'm currently on Zonisamide which seems to be helping without the same side effects.  

It's getting late and I need to get to bed, but I promise to write more soon.

Why Today I'm With Her

This post has been gnawing at me to be written for quite some time now.  Hillary Clinton isn't my candidate in this race.  Mine didn't make it to the final election.  In the past, I have happily and proudly voted third party.  Until a few weeks ago, I planned to do the same this time around.  But that was when I really believed that so much of the population of the United States and so many people that I know and love could not possibly vote for someone I believe is so vile, loathsome, and unethical.  It became clear to me that I needed to do more research into the only two candidates who, at this time, have a legitimate chance of winning the race.  And so I voted today for Hillary Clinton.  I've heard the pro-Trump, anti-Hillary rhetoric so let me explain my reasoning.  

****** GIGANTIC TRIGGER WARNING*************  

THIS POST CONTAINS GRAPHIC PERSONAL INFORMATION WHICH IS NOT APPROPRIATE FOR CHILDREN AND MAY CAUSE PTSD FOR THE READER.  IF YOU CONTINUE, YOU ARE PROCEEDING AT YOUR OWN RISK.  

1.  Donald Trump makes a habit of picking on people he sees as weaker, uglier, lesser, poorer, disabled, etc.  There are videos, soundbites, quote after tweet of him making fun of or tormenting or scorning another human being because he sees them as lesser.  My mother is mentally ill and every single one of her internal demons that tells her why she's unlovable (she's too ugly, too stupid, not feminine enough, not smart enough, doesn't deserve love or admiration) comes out of Trump's mouth regularly.  Guess who she's voting for?  The person who validates every one of her fears.  That makes me angry.  My son is autistic.  Donald Trump has publicly commented that his autism is caused by vaccines.  Science has proven that it isn't.  Is this the person we want appointing heads of scientific boards?  While we're at it...what message is it sending to my son and his friends who have other special needs when his relatives who supposedly love him more than anything VOTE FOR the candidate to PUBLICLY taunts and makes fun of people with special needs?  Don't think my son hasn't noticed.  He's already asked me.  This makes me even angrier because I can't give him a rational answer.

2.  A soundbyte was released where Trump was heard saying something to the effect of, "When you're rich and famous you can gram 'em by the pussy and they let you."  The "they" he was referring to, of course, was women, girls really. Whether he has done it or not, it encourages the kind of rape atmosphere we read about so often today.  Thing is, it's not something that just started now. Let me tell you a personal story to explain why this bothers me so much....

More than 20 years ago, when I was 16, I was a typical curious girl.  I was a virgin who wanted to stay that way but who still wanted to know what it was like to be kissed and cuddled.  I was in a church youth group through school.  What safer place to meet a boy, right? I did.  He was cute.  Taller than me.  Initially, I thought he must be a senior.  Turns out he was actually 14 - younger than I was.  That meant he was even safer, right?  Certainly a younger boy wasn't going to pressure me into having sex.  He'd be willing to take it slow.  His parents were divorced.  I met his dad who was such a kind man.  Like father like son, right?  At the next youth group meeting, I had a strange encounter with one of the leaders.  I don't remember her exact words but she told me to "be careful of him".  She didn't tell me anything specifically and, frankly, I blew her off because my friends and I had given her an unflattering nickname because she was an evangelical who told us a story that when she met her boyfriend she told him she didn't want him to even hold her hand - she just wanted to be friends.  I wanted to hold hands.  I wanted to kiss.  I thought she was being overly ridiculous.  At the same time, I grew up listening to my father talk about women on the news who were raped or assaulted and hearing him say, "What did she expect walking there at night," or, "wearing that outfit," or, "being with that guy," followed with disgusted contempt in his voice, "Stupid slut (Ho bag, whore, cunt)!  She should have known better."  

Anyway, my boyfriend had been, in hindsight, trying to get into my pants for weeks and I kept fending him off.  I thought I had made it clear to him that I was not interested in going that far and that he respected me.  I was wrong.  I had my driver's license so one night we were driving around and he directed me down some roads I was unfamiliar with which led to a dead end.  I was cool with parking and talking and kissing....you know what kids do.  I'd made it clear what my limits were. Surely he would respect them. We started talking.  He took my hand in his.  Then he pushed my hand down his underwear until I touched his erection.  I was so shocked I couldn't talk but I kept trying to pull my hand away while he held it there.  I said no.  Pretty sure I mumbled it because I was freaked out.  This is NOT what I wanted.  I had made that clear.  Why was he doing this????  Eventually he let me go so he could shove his hand down my underwear.  I remember him shoving his fingers inside me.  It wasn't pleasant.  It wasn't romantic.  It damn sure wasn't consentual.  I was frozen in fear and shock.  It was HORRIFYING! I made some excuse about being late for curfew to get out of there. I drove him home then went home myself.  I honestly don't remember what I did when I got home.  I was in shock and that part is a total blank.  I'm sure I curled up in my bed and cried.   I never told my parents because, "What did I expect.  I should have known.  Stupid slut."  Oh yeah, those words echoed through my head.  What's worse?  When I told my best friend the next day, her response was that I disgusted her.  Not that she was disgusted FOR me, but even she believed that it was my fault.  It validated my fear.  Oddly enough, the only other person I told was my closest male friend, who later came out of the closet, and he was the ONLY person who hugged me and told me he was sorry.  HE was the only person who told me it wasn't my fault.  You know who you are and THANK YOU!  I think you kept me sane.  Needless to say, I broke up with that boyfriend the very next day over the phone and I stopped going to the youth group.  

My hands are starting to shake and my eyes are tearing up as I write this and it's been 23 and a half years since that night.  It still affects me.  This culture STILL EXISTS today.  About 4 years ago, I reconnected with another old friend from high school who at that time worked in HR.  Part of her job was to check to make sure candidates weren't on the Sex Offender Registry.  She said, "Didn't you date (boyfriend's name) in high school?  Did you know he's on the Sex Offender Registry?"  I hadn't talked about it to anyone except my husband and one other long-term, serious boyfriend before him.  I don't know what made me decide to start talking about it that day, but it was freeing.  I looked my friend in the eye and said, "I did and I'm not surprised considering he molested me when we were dating."  I don't think her eyes could have gotten any bigger.  My point is, I don't want my daughter growing up in the same environment.  I've seen Trump's pathetic "apology" for his comments.  I don't believe him.  If my ex-boyfriend sat there and said the exact same words Trump said, I would tell him to Go Fuck Himself.  He's on the sex offender registry for good reason.  He did what he did to me when he was 14.  He was put on the list as an adult.  It's not just locker room talk.  You don't "meet people" and suddenly "feel ashamed" for what you said a few years ago.  FUCK YOU, DONALD TRUMP.  FUCK. YOU.  I don't want my daughter to grow up with a president who has ANYTHING in common with the boy who once sexually assaulted me and is now on the sex offender registry.  I don't want my son growing up thinking any of this behavior or language is EVER in ANY WAY acceptable.  I truly believe with all my heart that the only reason Trump isn't on a sex offender registry is because he has money and has been able to pay to stay off of them.

3.  Ethics.  This is a sticky one.  This is why Hillary wasn't initially my candidate so for me it comes down to who is less ethical.  I've heard the argument that Hillary defended a rapist who was guilty of raping a young teen girl and she laughed about it.  I looked into this one.  First, she was appointed to the case.  She didn't want to take it.  She asked the judge to remove her and was denied.  At that point, her JOB was to defend the asshole to the best of her ability whether or not she thinks he's a slimeball.  I listened to the recording of her laughing.  She wasn't laughing at the girl being raped.  She was laughing at the absurdity of the legal system using "lie detector testing" as evidence when her client passed the test even though he lied.  She was questioning whether that evidence should ever be considered trustworthy again.

Liberals like to point out that Trump has had many businesses fail and a conservative I know explained to me that it's not a business failure - it's a tax write-off.  Good point, but is it ethical?  Trump talks about jobs moving elsewhere and about creating jobs but what about the people who depended on those businesses he built then either carelessly or, worse, purposely ran into the ground so he could use them as a tax write-off?  People who had their health insurance through those jobs. People whose income depended on those jobs.  People who were paying for their kids' daycare or college or diabetes supplies with that job.  If he doesn't care about his employees, and he only cares about paying as few taxes as possible, how can he have the best interests of the people of the United States of America at heart?  

This is one that's probably going to piss people off and so be it.  Hillary Clinton has used her talent and power to silence the women who have come forward to accuse her husband of infidelity while in office.  I'm not arguing that she hasn't.  Here's my take on the situation.

Hillary Clinton grew up in a time when women were not supposed to have aspirations.  Suppose she always had a desire to be President or Secretary of State.  Suppose that she saw Bill Clinton as her way of getting there.  Here's the thing. Well behaved women rarely make history.  They're villified.  Kind of like Hillary.  

Have you heard the word "mansplaining"?  You don't have to explain its meaning to a woman.  She gets it.  Men, however, groan and roll their eyes.  "Here we go again," he thinks. He really doesn't care.  *He fixes a patient, patronizing smile on his face* "Please, go ahead.  What is it?"  As a woman, I'm supposed to ignore the patronizing asshole.  If I don't, I'm a shrew.  I must be on the rag.  I'm obviously hormonal.  My female coworkers and I (who worked in a male-dominated field) used to joke that we forgot to bring our penises to work with us).  Yes, we joked because it was that or become rage-bitchy.  I seriously lost count of the number of times one of the women would come up with an idea, propose it in a meeting, have the idea shot down by the male management, then have the EXACT SAME IDEA (often with the same exact wording and sometimes in the same meeting) be proposed by a male colleague and have it applauded, the male colleague patted on the back, and have it publicly announced that the male colleague came up with this wonderful idea that was being implemented.  I even spoke up on several occasions for my fellow women and loudly stated that SHE just said the EXACT SAME THING, only to be told I was wrong or be ignored completely.  Seriously.  It happens a lot.  I even get mansplained by my husband, father, and father-in-law.  Men do it all the time and they don't realize it.  That doesn't even cover the other types of mysogyny females encounter every single day in both subtle and outright ways that men are completely unaware that they do.  And even men who *think* they have progressive attitudes towards women often slip on occasion without realizing it.

So Hillary has made her career in this environment.  The only way for a woman to get to the top is to be a shark.  You can not be a nice woman and make it there.  IT. IS. NOT. POSSIBLE.  Had she not silenced those few women, it's possible she wouldn't have been able to get as close to Washington as she did, riding on her husband's coat tails.  It's not pretty, but it's truth.  While she was there, she rubbed elbows, made friends.  People noticed her.  She began to stand out on her own.  Her own intellect and her own strength stood out.  She made a name for herself.  I doubt that would have happened had she allowed her husband's career to tank because he was a moron who couldn't keep it in his pants.  She's shrewd.  She kept her eyes on the prize.  If she were a man, nobody would be talking about it. But she's not.  She's subject to a different set of rules.  

So, she is a flawed candidate, but I understand where she's coming from and at the end of the day, I can look my children in the eye and tell them that I made my decision based on the ideals that I try to teach and practice for them.  

So, Sunshine and Rainbow, today, I'm with Her.

Dear Parents of the Boy in My Son's Class

I hope you won't think I'm being too forward in writing to you.  I wanted to reach out because I have had the occasional pleasure of working directly with your son when I volunteer in our children's classroom and he is an exceptional, beautiful person.

You see, your son and mine have a lot in common.  My son is autistic and I know yours is too.  They are so similar in so many ways even though your boy is less verbal.  My son started out there too, but where mine is boisterous and acts out when he's on sensory overload, your son crawls into his shell.  I don't know if you know your son is autistic or not and I know it sounds bold of me to diagnose him so quickly.  I see his beautiful mind being overlooked in school and I hope that my forwardness can help him in some way.  My son has a one-on-one aide to help guide him through his day but your son is alone doing the best he can and it's pretty damned impressive what he is able to do on his own.

I know your child has an IEP because, like Sunshine, he is pulled out of class occasionally for services.  My son has only been at this school for a few months so I don't have a feel for the Special Education teachers yet.  I wonder if they discovered what I did the first time I worked with him.

Autistic kids have always had a special place in my heart and ever since my own son's diagnosis, I have read every book and blog written by autistic teens and adults that I can find.  Some of the most powerful books that helped me understand my child were written by individuals who would be considered "low functioning."  Several of them were totally misunderstood, overlooked, and failed early in their education by Special Education professionals who kept them practicing their basic alphabet and very basic words year after year because they were unable to communicate in a typical way.  These kids became angry and frustrated because their intelligence was insulted every day.  And I don't want to see that happen to your son.

The first time I met him, I was asked by our kids' teacher to work with a small group of four children who needed extra help working on the class assignment.  One child was obviously intellectually disabled but tried her best (I've met her mom several times and she confirmed her daughter's diagnosis).  One child obviously had attention problems.  The third has difficulties though they're subtle.  Then there was your son.  He was quiet and never answered any of the questions I asked him.  He appeared to be paying attention and trying his best to do the work though.  He had trouble controlling his pencil but his scribbles looked like more than just random lines and circles. On a whim, I decided to try something I'd read about in one of the books I mentioned above.  I moved around the table to sit next to him and as he wrote, I gently placed my hand over his to steady his movements.  I can't begin to explain how excited I was when, with that small action, your son clearly wrote out the math problem he'd been given and answered it correctly.

The look on your son's face was priceless.  I so very much wanted to hug him and let him know I understood that he was intelligent and capable when given a little support.  A little while later, the Special Education teacher came in to pull your son out of class for some individual instruction.  He grabbed my hand and looked me in the eye.  I'm not sure if he was asking me to go with him or if he was simply saying, "Thank you," but that look has haunted me since that day.

I've seen him several times since then and he has a place in my heart.  I've seen him overwhelmed and needing desperately to leave the chaos of the school play rehearsal.  I told the substitute teacher that he really needed to go for a walk, but I knew I wasn't allowed to take him.  Thankfully, she took my hint and took your son for a drink of water, then hung out with him outside the noisy gym until practice was over.  My son's aide candidly told me one day that she agreed with me that your son could benefit so much from having an aide of his own.  I wonder if you've thought to ask for one and if so, were you rebuffed like I was initially?

It's hard to advocate for our children and successfully navigate the complex world of IEP's.  Then I sometimes wonder if you advocate just as hard for your son, but you're dismissed because of racism.  I am very uncomfortable being so bold and I'm only reaching out to you because I know deep in my soul that your son can succeed in school with the right supports.  If you need guidance in advocating for him, I'm willing to help you.  If you just need a white witness with you in your IEP meetings to help combat racism, I'm here.   I'm not saying that anyone on the IEP team is racist.  I don't know any of them well enough to know one way or another, but I know that racism exists and the only way to stop it is for those of us with privilege to speak up on your behalf.

I really hope I haven't offended you with this letter.  If you would like to talk - even just to have another autism parent to talk to - please feel free to call or email me.

Respectfully Yours,
Willow

Ch..Ch...Changes

I need to get better about posting more often.  So very much has changed in a year.  Most notably that Sunshine FINALLY got a one-on-one aide written into his IEP in December (just after his birthday).  Also, we moved to a beautiful new house that's approximately three times the size of our old one in a neighboring county.  Because it takes Sunshine so long to settle into a new school environment, Hubs and I petitioned to allow our son to stay in the school he's been in since he was 3 until the end of the school year.  We ended up paying tuition but that was expected and we were happy to do so if it meant not disrupting his Kindergarten year.

After a few months of Sunshine escaping from his classroom, the IEP team readily agreed that he needed an aide.  Because the county had to hire someone to fill this slot, but he needed the change immediately, his Special Education teacher (whom I will call Miracle Worker) spent her days by his side.  We immediately saw a huge improvement.  Miracle Worker earned that title fair and square.  I've never seen Sunshine respond so well to anyone and she certainly taught me that humor goes much further with him than anger, seriousness, and threats.  She also began customizing Sunshine's work based on his abilities instead of holding him back and boring him to death.  By the end of the school year, he was consistently doing reading/comprehension at a 2nd grade level and was doing 1st grade Math.  Occasionally he would ask to read something at the 3rd grade level and was doing pretty well.

One thing that just reinforced the idiocy of the No Child Left Behind/Race to the Top/Common Core testing is that Sunshine's teacher told me when she was testing him at the end of the year, he had technically answered a question incorrectly, but he gave a reason for his answer that not only showed he understood the concept the test was trying to ascertain his mastery of, but that he also thinks outside the box and was technically correct.  She technically shouldn't have, but she marked that he answered it correctly.  With so much focus on standardizing and computerizing tests these days, there is no longer any room for educators to take alternate answers into consideration.  And that's a shame.  I'm pretty sure the brightest minds that we know today didn't always find the easy or obvious answer.  Bill Gates.  Steve Jobs.  Mark Zuckerberg.  Stephen Hawking.  I'm going to go out on a limb and say that none of them would have excelled in the current educational culture in our country.

Anyhow...

Now it's summer and it's the first summer I've spent being a SAHM.  In some ways I love it so much and in others, I get why some moms can't wait to go back to work.  Most of all I see a huge change in Sunshine and Rainbow.   This past year he made so many friends at school.  Yes, he has the kids who are the children of our friends, but they're not "his people."  He misses the friends he made on his own and it's already occurred to him that he won't be seeing them again come September since he'll be transferring to the elementary school just a few miles from our new house.  We took a tour of the new one towards the end of the year.  We met the principal, the special education teachers, the speech therapist, the music teacher, and the librarian.  Overall, I think this change is going to be a positive one but we are REALLY going to miss Miracle Worker.  The new school is much larger.  There were 535 students in the school this past year and they had five 1st grade classes.  It's about the size of the middle school I attended so it's a bit intimidating, but there are 5 or 6 other kids with autism who go there.  The school and the principal seem to be very progressive about autism.  The principal is even going so far as to get a sensory swing installed for his autistic students over the summer.  I was initially worried about them fighting us on Sunshine's aide, but the look on Mr. Principal's face when I explained that he elopes and has been known to try to flee the school even with his aide pretty much guaranteed they will make it happen.

On that note, it's time to wake Rainbow from her nap and Sunshine is about to try using my vacuum so I'll keep you posted.

My Thoughts on the Current State of Education

**This post originally written September 4, 2014**

This is going to be a wildly unpopular post, but I feel strongly this message needs to be said.  The education system in this country as it currently stands is terribly broken.  The bigger problem, however, is that nobody agrees on how best to fix it.

When I was a child, the kids in each grade were separated into smaller groups according to their innate abilities.  Those who struggled more were put in one group for reading and math.  There was another group who was considered "on grade," a third group who was about 1/2 a year "ahead," and a fourth group who were considered "advanced."  In my school, I was in all of the advanced groups but most of my closest friends....the ones I chose to play with and eat lunch with and sat next to in specials....were in the remedial groups.  I don't ever remember thinking they were stupid.  On the contrary, they were incredibly smart...they just struggled with learning certain things.  Overall, however, when I look at those friends today, they show the hallmarks of having had a good education.  They are literate.  They have good jobs.  They are making a difference in society (moreso than I am).  They have basic problem-solving skills.  And they work well in teams.

In contrast, I look at the majority of the kids entering college these days and they are woefully underprepared.  I believe this goes back to the earliest levels of education and how the system is broken.  Now, a student in any grade isn't grouped according to his or her innate abilities to learn.  Everyone is supposed to be the same.  I've heard this is because of several studies which supposedly proved that kids who are struggling at the bottom of the class do better on assessments when they're educated along side their peers for whom learning comes more easily. This has coincided with the mainstreaming of kids in special education.  What I've seen anecdotally is that this approach is failing dismally.

I have a unique perspective in that I have a child who has special needs yet is intelligent and when in the right atmosphere, learns quickly.   Here's the problem in our particular circumstance:

My son is autistic.  He struggles in large groups.  He gets easily excited and OVERexcited. Circle time (which is kind of a hallmark of traditional early learning) is torture for him.  Emotionally, he's immature compared to his peers.  Intellectually, however, he is years ahead.  He taught himself how to read before he could even communicate effectively.  He understands basic concepts quickly and is a sponge wanting to learn more advanced information.  In the current system, he is mainstreamed in Kindergarten and here's the problem with that.  The system is set up for him to fail.  And when he fails, he drags the other kids in his class down into his emotional hurricane.

Imagine being expected to learn in the middle of a rock concert.  That's essentially what a regular classroom is like for my son.  Now, take a child who is eager to learn and is naturally curious, stick them in that rock concert, and then drill them over and over and OVER on the same information they've been "taught" for the last three years.  Information that they already knew before coming to this hell.  What do you think is going to happen...particularly to a child who is emotionally immature for a 5-year-old?  Behavior problems.  Sometimes to escape the chaos.  Sometimes to escape the boredom.  In my son's case, I mean escape in the literal sense. 

Sunshine has been in Kindergarten for a total of 6 days now and in that time he has run out of his class a minimum of 3 times.  Each time his teacher has to stop what she's doing to chase after him.  This means disrupting another teacher to watch over her class while she does so.  Not only is this disruptive to two entire classes, but I fail to see how this is benefiting my child either.  You have a kid who has trouble regulating his emotions, put him in a stressful situation, and when he struggles or fails he gets to do so in front of all of his peers.  This adds to his stress.  I'm already seeing signs of depression in my Kindergartener.  How is this the best course of action for him?  For the others?

I have more, but Mommy duties call.  Until next time.... 

The Haves and the Have-nots

I've been sitting on this post for a while, but finally have the time to put my thoughts into writing.  If you've never read Autism Daddy's blog, you should. His post entitled Minorities, Late Autism Diagnosis, & IEP Meetings... is an eye opener.

I often have similar thoughts.  I live in the poorest county in our state.  The majority of people are lucky to have jobs and barely eke out a living.  Most parents are not highly educated nor do they think much of getting an education.  I sat at a Parent Advisory Committee meeting one night and heard a parent say (I kid you not), "I don't think kids should have to go to school after age 16 anyway unless they're plannin' to go to college."

When my son first started getting services at age 3, I was frankly shocked by how much and how often the teacher gushed about how wonderful it was that we were willing to be an active part of Sunshine's IEP team.  I was told that the vast majority of students' parents in special education never bothered to attend IEP meetings or even contribute information to them.  At first, I blamed the parents, but then I realized that most of them probably can't afford to take leave from work to make these middle-of-the-day meetings.  I'm sure most of them don't have the resources we have to take their kid to specialists like we do who help guide us through the complex, mind-numbing special ed system.

But what about the kids whose parents aren't educated and who just believe a good beating will set their child straight?  Sunshine is pretty high-functioning all things considered, but when he was mainstreamed at the beginning of this school year, he was struggling so much that he began having violent outbursts that increased in frequency.  When the teacher (who is a 20-year veteran teacher) approached us about the situation, there was a definite attitude that he was just "acting out" and I could tell that she expected us to take her expertise at face value.  She was visibly taken aback when we told her and the rest of the team, "What is causing these outbursts?  There has to be *something* triggering them.  Our son is not violent normally."  It took me a while to realize this wasn't the standard response they're used to getting from parents and it makes me sad that so many parents don't really advocate for their child.

We eventually got an IEP in place that works for Sunshine. We also have an IEP team who is genuinely willing to work with us and I know we're lucky in that respect.  He hasn't had a single violent outburst since it was implemented.  I'm not sure what is causing his current shutdown, but at least he's not being punished for his inability to focus and process information.  But what about his classmates?  The ones who do slip through the cracks? 

I can only hope that my educating the other team members on what makes Sunshine tick might help them gain a window into other childrens' behavior problems.