Dear Autism Parents

This post is for all autism parents out there. It is not an accusation against any of you. It is not an attack. It is not an attempt to silence you. It is a request from another parent. It is a call to action. It is a plea for justice and fairness.

In light of the recent Dr Phil interview of K. Stapleton regarding her murder attempt against her autistic daughter Issy there has been a hashtag introduced on social media: #JusticeForIssy. It was created to bring awareness to the injustice that exists when disabled children are murdered or abused. Some parents have been highjacking #JusticeForIssy to demand sympathy for Issy's abuser/mother or to demand more services. That's not okay.

Disabled people have value. Disabled people matter. It is not okay to kill disabled people. It is not okay to demand that someone who abused, murdered, or attempted to murder a disabled person be given lenience because the victim is disabled. If anything, we should demand harsher punishments for those who harm disabled people. It is not okay to demand that we be sympathetic to people who harm their disabled children.

Don't try to turn this into a discussion about services, either. When you do that you are saying that the safety and well-being of disabled children is contingent upon the services their parents are getting. You are taking the lives of disabled children hostage. You are metaphorically putting a gun to your child's head and telling the world "services now or I kill the kid!" That's how it comes across when you use crimes against disabled kids as a rallying call for services. It is dehumanizing to say the right of disabled people to live is contingent upon the services their parents receive. And that's not okay.

I'm not saying you can't have your discussion on services. You can absolutely have your discussion on services. You should have your discussion about services. But do not try and tie the services banner on this train. It devalues disabled lives. Have you discussion about services but don't bring up Issy Stapleton, Alex Spourdalakis, or any other disabled child who was abused or murdered by a parent or caregiver. And if someone else tries to bring up an abuse/murder case as justification of services SHUT THEM DOWN. Tell them it's not okay. Lack of services does not excuse murder or abuse. Don't let anyone say otherwise.

I know that I'm not saying anything new here. I know that many autistic adults have made this point before. But some parents have this fetish for walking in the shoes of abusers and murderers before judging. So I am saying this to you as the mother of a child like Issy. My son is like Issy Stapleton. I will not give you a list of the things my son has done when during meltdowns, but I will tell you my son is like Issy.

I will never harm my child. I will judge anyone who harms a child. Because if you are not actively part of the solution you are part of the problem!

Respecting my son's wishes

Recently I was looking at the photos of my son I have stored on my computer and I realized that there are none from 2014. I then looked at my camera & phone to find that I have taken only 18 photos of my son in 2014. It's not because I've forgotten, it's because my son doesn't want me taking his picture. He doesn't have a problem with being photographed in general, but he would rather have me playing with him than photographing him. I would like to have more pictures of him, it actually makes me feel sad and somewhat guilty that I don't, but respecting my son's wishes is more important. And one of his wishes is for me to put the camera away and live in the moment. He doesn't care about have his life documented, he cares about enjoying his life with the people he loves.

There are other things my son doesn't enjoy, like holiday celebrations and birthday parties. So we don't do them. The only holiday my son does enjoy is Halloween, and that's because he loves going for walks. He won't wear a costume, though, he just wears a hat with ears on it. I would love to make him a ridiculously elaborate Halloween costume, but he doesn't want to wear one, so I don't. He just doesn't have any interest in any other holidays, and that's fine.

I've actually been harassed by other people for not forcing my son to participate in activities he doesn't like. A woman actually told me that I was abusing my son because I didn't take him Easter egg hunting against his will. And yes, the woman knew my son didn't want to go hunt eggs, but she thought I should force him to anyway, because it's a "right of passage." That's ridiculous. It's not abusive to respect my son's wishes, not respecting his wishes would be abuse.

But you're not REALLY autistic!

I have decided to present a list of reasons why I am not autistic, according to people who have no idea what they're talking about. Why? Because I hear it all the time. I've even been told my son and some of my other autistic friends and family aren't really autistic. So, here it is.

"You're not really autistic because ..."

"You can talk!"
Yes, I can. So can many other autistic people. In fact, most of the autistic people I know cane speak. Being autistic and being verbal are not mutually exclusive. My son is the only non-verbal autistic I know personally, and he's only 6. I know of a few non-verbal autistic adults, but I have not met any of them.

"You can make eye contact!"
Yup. This is a learned skill for some of us. I learned to make eye contact because if I don't people yell at me for not listening. Which is quite ironic, considering I listen better when I'm NOT making eye contact. My son makes eye contact naturally. Very intense eye contact, in fact. He's always been that way. That doesn't mean he isn't autistic.

"You have friends!"
Well, yes, I have friends. Or, more accurately, one friend. I've known her since I was 7. We became friends after I pulled her hair the first day we met because I thought she was someone else. I have quite a few acquaintances, but only one friend. My son has friends, too. He has a lot of friends, actually.

"You're too pretty/handsome!"
This one has never been leveled at me, actually. Only at my son. All the damn time. Autistic does not mean ugly and it's really freaking offensive to imply that it does.

"You're too happy!"
Again, this is one that has never been leveled at me. I have bitchy resting face so nobody accuses me of happiness. My son, on the other hand, is the happiest person I have ever met. He's all smiles and giggles 99% of the time. It doesn't mean he's not autistic, it just means he's happy. The reason he's so happy is because he is loved and accepted as he is.

"You're too smart!"
Again with the offensive shit. Being autistic doesn't mean you can't be smart. I can't even with this.

"You're too dumb!"
This is what my father was told. Well, more accurately, what I was told about my father. Granted, my father has never been formally diagnosed, but he is clearly autistic.

"You're too nice!" 
 No, I'm not. I'm a bitch. But I have been told I'm too nice to be autistic because I can be polite. I'm not only capable of being polite, I'm well versed in etiquette. I could dine with the queen without acting out of order.

What a week...

Last week was interesting. There was some good and some bad. It started off bad. My son got sick, just a cold, but for a while I was worried it might be something more. And at some point last week our sink sprung a leak and flooded the living room. It still hasn't dried and our carpet is moldy. On the bright side, the manager here actually fixes things within a reasonable time frame.


Then my sister got sued by our former home town. It's a retaliatory lawsuit in response to my father suing them. He's winning his lawsuit, so the city is suing my sister to try and force my dad to drop his suit. And to make it worse, my sister tried to get an attorney through legal aid and they refuse to help her and won't say why. Aren't small town politics great?

And I finally got the bill from my son's last doctor's appointment. It's almost $700 because it was a one hour visit plus lab work and vaccines. And, thanks to the ACA, our insurance won't cover his visits to his regular doc so I'm stuck paying it all myself. I also have a $600 electric bill due on the first, so that's fun.

In good news, he's getting a referral to a neurologist from the doctor who saw him at the hospital after his seizure. I thought I would have to argue with to get it, but I didn't. The doctor just put in the referral to the top rated pediatric neurologist in the state.

Scariest day ever

Last Thursday, January 30th, my son had a seizure. It was the most terrifying moment of my life. He woke up later than usual but seemed fine. About an hour later he vomited a little. At 10 am he had a seizure. He then stopped breathing. We were able to get him breathing again in less than a minute. We (my sister and I) then wrapped my son in a blanket and set off looking for someone with a car to take us to the ER. You see, we don't have an ambulance here, and it's an hour wait for one to show up and then another hour to the hospital, so driving to the hospital is faster. Luckily, the first neighbor we asked gave us a ride. We made the one hour trip in about forty minutes, during which time I ran through every possible scenario in my head and most weren't good. By the time we reached the hospital my son was coming around a little bit. He had been out for over an hour at this point and had a second seizure while we were driving.

At the hospital he drifted back out. They did a CT scan, lumbar puncture, chest x-ray, and blood tests. All came back normal. My son had two seizures in one day, and everything was fine. He was lying there, drifting in and out of consciousness but nothing was wrong. He didn't completely regain consciousness until 11pm. But nothing was wrong on any of the tests. He didn't get an MRI because the hospital we went to doesn't have an MRI machine. He will be getting an MRI, but we have to wait three weeks for him to see his doctor and get a referral. In the meantime, I am terrified every second of every day.

To make matters worse, there are some people (his father among them) who don't believe he had a seizure. Some people (none of whom were present during the seizures) think he was just "shivering" after vomiting. He wasn't. There's a huge difference between shivering and seizing. I know the difference.

Thanks, Obamacare! :/

The new healthcare law in the USA has screwed me over. My son's general pediatric visits are not longer covered by our insurance because the doctor is located too far from our home. The insurance rep tried to justify the change by saying that I shouldn't have to be inconvenienced with driving so far to get my son to his doctor.

But I'm inconvenienced by those long drives to get my son to the doctor. I don't consider it an inconvenience to provide my son with the best care available, I consider it good parenting. And, anyway, shouldn't it be up to me if I want the added inconvenience of driving a longer distance to get my son to a better doctor?

I chose the clinic I chose for a reason. They're the best in the state and they have my son's general, dental, and specialty providers all in the same building. Plus, everyone on the staff is well versed in treating special needs children with respect. But now I have to either find him a new pediatrician or pay for his appointments out of pocket.

It's annoying, I managed to get my son both an amazing doctor and an amazing school and now I have to choose which one to keep.