Making Money on Autism

Posted on February 11, 2015 by simpleijustdo

There are lots of autism bloggers, and lots of single moms with kiddos on the spectrum. Lots of us have learned so much from experience, and lots of us want to share that because we know how hard it can be. And there a few of us who have the ability to make a few bucks doing this.

Way back when I started this blog, one of the things that inspired me was the inability to find existing social stories online that weren’t for sale. I was tired of being nickel-and-dimed for every little resource I needed for The Boy. Others had experienced just what we were going through, and someone had to have a social story already written, so that I wouldn’t have to re-create the wheel every time, but they were all for sale. And money is hard to come by when your paying for uninsured therapies, prescriptions, diapers or your 5 year old… It’s tough.

I have long considered trying to take this blog to the next level, and maybe “go pro” which means trying to attract companies to advertise here. Most bloggers do this, and I don’t see it as trying to make money off of other autism or special needs parents. Advertising is everywhere, and I don’t think anyone would see this as a blogger trying to take advantage of her audience.

There are other bloggers that sell stuff on their sites, as well. And I think we have to be very careful when we head in that direction. T-shirts are one thing. Resources are another. Trust me – I understand the sentiment behind it – when you work hard to create something, you have a tendency to want to protect it, and while you want to share it with the world, you feel you deserve something in return. I get it. But we cannot forget that person on the other end, spending money on therapy, weighted blankets, chewies, and special gluten-free ingredients. Our community needs to remain one in which we share resources at little cost, and respect each other’s struggles. If we forget that, we’ve lost our way.

5 Ways to Support the Newly Diagnosed

Posted on February 10, 2015 by simpleijustdo

I often think back to the day we got The Boy’s diagnosis. The ex and I went our separate ways – he went back to work, and I drove to a nearby Kmart parking lot to process (i.e. cry my eyes out, hyperventilate, ask myself over and over “What are we going to do?” and eventually call a close friend to talk me through it. Thank God for her.) The psychologist we had seen had written “Autism Society of America” on the back of a business card, suggested we look them up, and said goodbye.

Once I collected myself, I still didn’t know what I needed, or what our next steps were. As I think most do, I went to the internet. Unfortunately, the internet is a big place, and I’m not sure the right tools and support are readily accessible to someone doing their first post-diagnosis search.

So how can we support parents who are new to this whole kit and caboodle?

1. Support local nonprofits that directly help our kiddos. The more those groups are supported, the more visible they can be in the community, and the more likely it will be that someone hearing that diagnosis for the first time will recognize the group as a resource they can use. This means supporting them with money, with attendance at events and workshops, and with your volunteer hours. Yes, volunteer hours. It may seem like we have the perfect excuse not to volunteer, but we have to give back if only to our own community – if we don’t, who will?

2. Make your presence known at the school. Kids with a new diagnosis will have parents with questions. They will most likely be asking those questions at the school. If you have maintained a good relationship with staff while dealing with the school, they may just see you as a resource for parents who are new to this whole shindig, and may pass your name along. Or if there is a group of you parents, even a social group, that goes for you, too. Schools really do want to help, and may attempt to connect someone with questions to those who may have answers (that’s you!).

3. Use social media to post “the good stuff” to your friends, and encourage them to share it. Parents who have questions will inevitably be some of your friends, or friends of friends, and so on. The more “the good stuff” gets shared and posted, the more people will see it, the more it will be found by those searching for it. That’s how the interwebs works for good.

4. When they come to your group, be welcoming. You may think this goes without saying, but groups are a funny thing. Sometimes, a group can get an attitude with newbies, and can be judgmental. You don’t have to like everyone who comes to the group for help and support, but the fact remains they need help (and they may need more help than others!).

5. Respect the process. People react differently to the news of a diagnosis. Some will immediately seek out others for help, while others will remain private and need to sort through things on their own. Don’t be pushy. Allow them to come to terms with it, and just be a friend. Just knowing there are others who are going through what you are going through goes a long way, especially at the beginning.

Special needs parents have many, many roles. One of them should be “guide to others who have just joined the group.” What would you add to this list?

CHIP: It needs to be on your radar

Posted on February 5, 2015 by simpleijustdo

CHIP stands for Child Health Insurance Program and is a federal program administered by each state, and funded by both federal and state governments. Sometimes it goes by a different name, but essentially it is for children in families who don’t qualify for Medicaid, but still are low income enough to struggle paying for health insurance for their child. It came into existence before the ACA was passed, but it continues to exist because it is a widely popular program that provides a needed service to many, many families.

Through the ACA, the terms of CHIP eligibility were extended through 2019, but the funding was not. Funding expires for the current incarnation of CHIP through this September.

Here’s why it matters. If funding is not extended, many, many children will lose their healthcare. The Boy included.

The other night, I happened to click on an article on Facebook, that happened to include the information above, and left me upset and worried. Why hadn’t I heard anything about this? Shouldn’t this be national news? What the hell is going on?

I did a little more research, and found that it will most likely receive extended funding, but no one knows for how long. The problem is that some want it replaced with plans offered by the health exchanges. I can tell you that this would place healthcare on the other side of affordable for our family, because our state neither expanded medicaid, nor started their own exchange. As a result, there is one company providing healthcare plans in the my state (through the federal exchange), and therefore they can set whatever rates they want – there is no competition, which was the whole point of the ACA. The ACA is perverted here, and therefore, we are not being served the way we should be by this law.

There are many people who think families should have a choice between an ACA plan and CHIP, and there are others who think having CHIP and the ACA separate is just fine. Needless to say, there will probably be a great deal of debate on September 30th of this year.

I wonder if we will hear anything about it?

I wonder if it will be used as a bargaining chip (no pun intended) for something else?

I wonder, and I worry. CHIP gives me piece of mind about my son’s healthcare, and I would really prefer to have an educated public and a compassionate legislative body making decisions about its future.

Posting Embarrassing Stuff About Our Kids on the Spectrum

Posted on February 4, 2015 by simpleijustdo

So many times I see something on Facebook or twitter, and without me realizing it, it starts me thinking. Thinking leads to writing, and then when I want to refer back to what triggered the thinking, I have no idea where it is, was, or will be. I apologize for that because I feel I should link back to the source, and if I find it, I will. Sometimes I wonder if its better not to include it, because I don’t want to criticize anyone in particular, just highlight my take on it…

The other day, someone posted on Facebook about how we autism bloggers have a responsibility to our kiddos not to post embarrassing stuff about them on our blogs. Things their friends may read, things no one would really want posted on the world-wide inter webs for everyone to see. This is what started me thinking.

This person pointed out the distinction that some blogs take great pains to mask the identity of their kiddo, as I feel I do. No clear pictures of faces, no names, no locations. There are people who know The Boy directly who read this blog, but they are all adults who care about him as a person, and would never think differently about him no matter what I posted.

I did a mental review of the types of things I post and could only come up with a handful that might be considered embarrassing for The Boy. And I started to feel a little guilty despite the fact that none of his friends would be able to know this blog was about him.

As long as his identity is a secret, he can do anything!

But I thought some more. Mostly about why I started this blog in the first place. It really is astounding when you hear people’s stories about getting “The Diagnosis” – in every single one I have ever read or heard, they felt like they were handed the information and ushered to the door with a “Have a nice day!” and a door slammed in their face. This is apparently still a problem. People are given this life-altering information and no help. I started this blog to share my experiences, so that we could navigate this thing called autism together, so that there would be somewhere someone could go to find out more than what’s in the pamphlet you’re handed as the psychologist turns to the next patient to diagnose.

And some of that stuff is embarrassing. Our kiddos have deficits in areas neuro-typical kids don’t have to worry about – potty training until 5, or 7, or 12, not knowing bathroom etiquette, puberty… Yes, it’s not stuff a typical kid would like plastered all of the web. But you have to balance that with the community’s need for strategies, their need to share, their need to brainstorm.

I hope I can walk that tightrope of sharing without invading my son’s privacy. After all, I am his mom, and capable of making lots of decisions about his life. As he grows older, I do need to get out of the way and let him advocate for himself and have some independence, but in this case, I think he would be all for helping someone else like him who was struggling, as long as I continue to maintain his anonymity.

This is a grey area for sure. And I may not be right, but it’s the best decision I can make with the information and values I have at my disposal. Thoughts?

Mornings Suck in Autism Households

Posted on January 14, 2015 by simpleijustdo

That is my theory based on the anecdotal evidence I have encountered. Maybe not for everyone, but for a lot of people I know that have loved ones on the spectrum.

One morning this week, everything was running along splendidly until I suggested to The Boy that it might be a jacket day as it was below 50 degrees. No problem! Yes, he agreed. A jacket was a good idea.

And then we got to the couch, the time to put on socks and shoes, and wait for the bus. And the bus was early, and The Boy couldn’t find his hat. And there was NO WAY he was going to school without his hat…

Add in the stray kitten who had hung outside of the house since the previous evening, meowing away – he was trying to get in while I was marching out to the bus in my robe and slippers to plead for a few more minutes, and Raphael was anxious to get out because he always is, and because he was very curious about this kitten. Add all of that to The (intransigent) Boy stuffing his feet, face, and hands into the couch cushions to ensure he couldn’t go to school without his hat.

Finally, he’s out the door, but not without a stream of under-the-breath curses about hats and school and buses. I climb back into bed, and The Man says, “Maybe you should set that stuff out the night before.”

(Can you imagine the dark look?)

Yep. Mornings suck.

PS – Guess where the hat was? Right next to his bed. *facepalm*

An Open Letter to the Ex

Posted on December 23, 2014 by simpleijustdo

Our son is thirteen now. I wonder if you are shocked by how much he has grown every time you see him. The last time it had been over a year. This time, eight months. I know he’s grown because I have to buy him new pants for every band concert. The size 18’s from last spring were way too short last week so we bought some 29/30’s. I wonder if headlines with autism catch your eye, or if you’ve ever read anything about it. I wonder if you remember anything from the year and a half between the diagnosis and when you left. I wonder how you spend time with him when he’s with you – do you try to connect or do you just coexist? Feeling a little schadenfreude as I hope you experience some of the pubescent rage we have witnessed this fall. But not too much because I wonder if you could handle it, and know I’d rather not find out. In a few years we will have been divorced longer than we were married and the boy will have lived longer without you than with you. That should scare the bejesus out of you, but it doesn’t seem to even register on your radar. Shocking to realize his speech teacher at his school last year who saw him once a week spent more time with him than you have in the last year, and knows him infinitely more than you do.

I wonder a lot, but it isn’t my place to know. That’s between you and him. The question I will never get an answer to is how. How do you live without him?

So I shake my head, sigh, give him to you for Christmas and cross my fingers. This never gets easier.

What Stress Does to Me

Posted on December 17, 2014 by simpleijustdo

I’ve mentioned how stressful the fall has been. Know what happens when I get stressed?

First is my back-shoulders-neck-head. Mostly shoulders-neck-head. Tension-soreness-headaches-migraines happen to my shoulders-neck-head. It can get bad, where I need to consciously lie on back at night (normally, I’m a side sleeper, curled into a fetal position), take too much tension headache medicine, be in a darkened quiet room, etc.

Second is my stomach. Polite way of saying I need to run to the bathroom every two seconds. Again, not fun, but uncontrollable, and a sure sign that something (or someone) has me stressed out.

Third, I begin to shake. Somewhere between a shiver and a quake. Deep breaths help, but again, it’s uncontrollable.

All the while, I worry it, shake it like a rag doll in my brain. In other words, I get a bit obsessive about whatever or whoever it is in my brain, and I can’t let go. Probably one of the reasons, “Don’t worry about it,” sounds just as awful as nails on a chalkboard to me. It’s just not even practical, not even a realistic goal. Shut up.

Why do I know this much about how stress affects me physically? Because I was a teacher for over 17 years. No, that was not a sarcastic answer. It’s the truth. And I’ve paid attention to my own body.

What helps alleviate some of these? Regular yoga (oops, need to get back on that wagon, too). Me-time. Deep breathing (goes along with the yoga). A massage now and then. Reading (to some extent). Being able to vent to someone about my source of stress (but not too much, because that can get me ramped up again). And a realization that This Too Shall Pass. I forget that a lot. Maybe I should get it tattooed somewhere I’ll see it all the time.

What does stress do to you? What do you do to alleviate it?

The Formula

Posted on November 18, 2014 by simpleijustdo

More and more, this school year, I am wondering what the heck The Boy is communicating through all of this behavior. My sweet little boy is refusing to do work, refusing to go to class, refusing to go to school… like someone has flipped a switch. When we experience a negative behavior (i.e. when all hell breaks loose), after the initial shock (Who is that demon child and where did he put my son?), I am left to figure. Autism parents are familiar with this. Determine the trigger and try to eliminate or decrease it so you can better manage the fallout, and predict when it might happen again. Except when you cannot for the life of you figure out the trigger. Could it be puberty? That magical ingredient that changes body chemistry and is our current prime suspect? Is it medication that needs tweaking? Is it a virus, which always makes The Boy’s behavior completely wonky? Is it someone at school making fun of him? Is it a teacher? Is it..? Is it..? We are trying to take this thing and try to determine its formula, its ingredients. And it’s a difficult, difficult thing.

Who are you and what have you done with The Boy??

Shared here at Mama Moments Mondays – check it out!

Helpless and Dumb

Posted on November 5, 2014 by simpleijustdo

Whenever I was sick as a child, my mom would say, “I hate it when you’re sick,” and I never truly understood the depth of that until I had my own child. Today, I looked at The Boy and said, “I hate it when you’re upset,” and burst into tears. “Why are you crying, Mom?” he asked.

I cry because I’m helpless and I know nothing. I had to come and pick you up at school today because you wouldn’t go to class, and then tried to escape school. I don’t know why. No one does, and when we ask you, you start talking about your bus driver from last year, and how he must have retired because he doesn’t come to pick you up anymore. You talk about not going back to school until next week, or returning to that other middle school you went to for a quarter last year until I screamed enough to get you into a better one, the one you go to now.

I cry because I don’t understand your motivations, and I just want to make it better and easier for you. Can we clarify the bus rules for you? Let’s make a checklist so you don’t forget your band binder again. How can I make it better? And I get no answer.

I cry because you are my only son, and I can’t see past this very day for you. I hope I can get you on the bus tomorrow, but I don’t know if you will go. I don’t know what will happen then. I don’t even know if I will be able to return to work later today, if you will be able to calm down, if we will be able to come up with a reasonable plan to get you back to school and going to class.

I cry because there are no answers. All of us autism parents just throw stuff onto the wall to see if it sticks every damn day. Some of it sticks, and a whole hell of a lot of it doesn’t and you go back to the drawing board. If I had a dollar for every time I said or thought “I don’t know what to do…”

All I can do is rely on experience, try, try, try, and hope, hope, hope. But in the meantime, I hate it when he’s upset. 😦