6 Basics I Sometimes Forget from Autism 101

Posted on February 17, 2015 by simpleijustdo

One of the hardest parts of being an autism parent, especially in the beginning is deciphering your kid and his behavior. Why in the world is he doing that? What is he so angry about? Is this a tantrum or a meltdown? Why can’t I get him to (insert any activity here)?

As you grow as a unit, you begin to understand more about how your kid works. You get better at predicting behaviors, and identifying triggers (more on that in another post this week). Your skills and knowledge increase exponentially.

And yet, as I’ve written before, you will always have your moments of complete and utter dumbfoundedness (is that a word? If it wasn’t, it is now), and better yet, you forget sometimes about stuff I like to call “Autism 101”.

So what are the “Autism 101” basics I forget from time to time?

One of the biggest culprits for negative behaviors is a virus. I will get phone calls or emails from the school, out of the blue about work refusal from The Boy, or escaping from class, or any number of negative behaviors. My first instinct is still defensive, i.e. “What did you (the teacher or aide) do to trigger his behavior?”. And that is simply because he is a good kid, and doesn’t act out. He hates displeasing me or The Man or his grandparents, and when this behavior happens, there’s a reason. What I often forget is that a common reason has nothing to do with action and reaction, and everything to do with cold and flu. Viruses do a number on his system, and much like a computer, he starts acting very strangely indeed.
Another big culprit for negative behavior is (forgive me) an upcoming bowl movement. You see, The Boy had surgery as an infant, in which they removed part of his intestine, and moved some things around in there. As a result, well… let’s just say that if there was a super-duty (heh, heh… I said “doody”) wide-throated toilet, we’d have it. And much like the wonder of childbirth, I really don’t understand the physics of how something so big can come out of something so small. As a result, poops are not regular, nor are they fun. And I have found that sometimes they are preceded by some really wonky behavior.
He may say he’s not hungry, but give The Boy a snack because hungry turns into negative behavior. This is one instance where trying to respect your child’s independence, and listen to their voice and burgeoning self-advocacy does not work. If you don’t give him anything, he will become even more absorbed in what he is doing until his body forces him to react to the hunger, and it’s rarely in a good way.
The Boy is verbal, but still lacks language. The Boy loves words, finds words funny and punny, and is able to express and receive language. He is in a high-functioning autism pilot program, even though he would not have been classified as having Asperger’s Syndrome. He had language delays as a toddler – I had to teach him language with flashcards, and he went to speech therapy twice a week for a long time. He does really well now, but he still lacks language to express himself appropriately sometimes. There are situations where he cannot find words to say what he wants to say, so he leads me to the right guess. But sometimes I can’t guess, and I have to remember that even though he has high functioning language skills, they were hard-earned, and this is not natural for him.
Pictures, pictures, pictures, pictures, pictures. Sometimes I will ask myself, “Why is he not understanding this?” and I have a “Doh!” moment and think, “Maybe because you just told him about it, and didn’t use any pictures, dummy!” There’s a reason well-respected autism professionals talk about picture schedules until they are blue in the face – it’s because they work. Our kiddos are generally very visual learners, and if something just isn’t sinking in, a video or picture will usually do the trick.
Intrinsic Motivation just isn’t it. Rewards and motivators are king. And I’ll be honest – I don’t forget this one (as sometimes The Boy’s teachers at school seem to), but I do forget to have a ready supply of rewards and motivators in my bag of tricks. When I don’t have something at the ready, I sometimes resort to taking away privileges, which doesn’t work nearly as well. More on this in the upcoming behaviors and triggers post…

How is it possible to forget this basic stuff that one should know after 13 years of experience? Because there are peaks and valleys to child development, and even bigger peaks and valleys in the development of a young person on the spectrum (in my personal experience). There’s a lot of backtracking, having to recoup skills that were considered mastered, and as they grow more independent, you forget they are still kids, still learning.

There is no mastering of parenting, I’m convinced. It’s Murphy’s Law – once you think you know everything, you will be quickly shown that you do not.

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?

5 Tips for Autism Parents for “Dealing with the School”

Posted on February 3, 2015 by simpleijustdo

I’m a latecomer to this. We were very lucky with The Boy’s elementary school, and his elementary teachers, in particular his ASD teachers who really acted like caseworkers, made sure everything ran as smoothly as possible. They advocated for the kids with other teachers and with administration, they handled little problems as they came up, they didn’t think the world was ending with every not-so-good day, and thank goodness they were the foundation, the bedrock if you will, of The Boy’s education.

They spoiled us, but they also showed us how it was supposed to be.

When we moved south, I was shocked at how bad a school could handle it’s special education students. So I fought to get a better placement for The Boy, because I knew it existed, and I knew we would lose him if we didn’t. And we got it.

Better, but not perfect. If you follow my blog regularly, you know that even now we have issues with certain teachers who just don’t get it, strange schedule changes that don’t make sense, and administrators all too quick to wash their hands of anything that comes up. In short, I still have to “deal with the school” from time to time, and the following are some of the best strategies I have found over the years for getting what you want from them.

1. Listen and watch to determine who your allies are. Before we moved here, I contacted the local autism society who put me in touch with the autism specialist for the county. She was supposed to be this fantastic resource, but I’ve watched her and listened to her, and to this day, I don’t consider her an ally. She almost prevented The Boy from switching schools, and I’ve seen how she has handled other situations with other parents, and I’m not impressed. On the other hand, through that placement process, I was impressed with the assistant superintendent for special education – she cut through the bull on the second day of our IEP meeting (with 14 members present), and brought some chart paper to illustrate that this really was a no-brainer, and the best placement was at his current school. If you watch and listen, you can determine who might be a good resource, and someone to turn to when something’s not right.

2. Never trust anyone 100%. Unfortunately, you always have to be wary, because in a school setting, people are not always at liberty to say what they really want to say, and sometimes, due to the nature of autism, they will bend the truth about something that happened (or didn’t happen), or not tell you at all. A friend recently had a conference with two teachers, one of whom was a revered special ed teacher. The friend and her son walked into the meeting, expecting to meet with cooperative teachers trying to find a solution, and the revered teacher began to yell at the son for disrespecting his mom at home. My friend was so taken aback, she asked her son to leave the room, and in her words, “if that was supposed to be support for me, it definitely didn’t feel like it!” People are people, and they make mistakes. They also change, and teachers get tired. It’s a tough lesson to learn, but just because you could depend on someone “on the inside” in the past, doesn’t mean that will always be the case.

3. Don’t belittle the teachers. I read on another autism blog’s Facebook page recently something about actual quotes from IEPs she’s been involved in, and it said something like “I am a taxpayer and I pay your salary!” Ummm, no. As a former teacher, this is just about the worst and most alienating thing you can say. Many times, teachers’ hands are so bound by mandates and the wishes of the district and administration that they have little to no power, even over what happens in their own classrooms. Saying things like this ensures that they will not be your allies, and that can turn out really badly, in the end.

4. Keep a poker face. It’s ok, and even advisable to play dumb from time to time. Earlier this year, The Boy got in trouble for making noises when entering his last class, which is supposed to be a social skills class with his autism teacher. She had decided it was going to be a silent class, and you can imagine how well that went over with The Boy, who understandably feels like he can let loose a little at the end of the day in his little autism community. And his teacher escalated the situation, making him more and more angry and upset. She emailed me with a long list of all the things he had done. Rather than retaliate, and explain to her about autism (as she clearly had forgotten all of her training for that hour), i suggested that The Boy may have needed to *insert any usual autistic reaction here*. I could have gone off on her, asking her what the hell she was thinking, and didn’t she know that kids on the spectrum stim and make noises, and to make a social skills class a silent period is the definition of stupidity, but I didn’t. I simply let her know that The Boy may have had a hard time with it. Don’t tell them how to do their jobs, even if you know better than they do. Play dumb, and remind them that your kid is a kid, and will make mistakes from time to time. Together we have to teach them what’s appropriate sometimes.

5. Pick your battles. Most autism parents are very familiar with this, but realizing school is not the be-all, end-all was a big a-ha moment for me. I don’t care so much about grades, because they are based on a standardized norm, and my kid is not standardized, and definitely not the norm. I care if he learns the content more, but again, our home life is more important than the Types of Energy and the Pharaohs of Egypt. I have given up on the science teacher this year, who rather than modify assignments, is choosing to give my child grades based on effort. I can’t teach him science, so I guess he just won’t get much out of the class this year. Disappointing, but not the end of the world. The teachers (even the autism teacher) are still giving us only a day’s notice about tests and quizzes, so when that happens, we do what we can but I don’t stress. He usually does pretty well, and what do tests show, anyway? Sometimes you bang your head on a brick wall until you realize it hurts, and then you move on.

Some of these tips seem contradictory, but they aren’t. They’ve all helped me navigate for better resources and understanding for The Boy, and I hope you can use them too. Do you have any tips of your own? Share them in the comments, please!

Shared on amamasstory.com – visit her Mama Moments Monday Link-up!

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*

On-Again, Off-Again Dad

Posted on December 12, 2014 by simpleijustdo

The ex has called a couple of times over the past month or so, after a couple of months of not calling. He said, “I get him for Christmas this year, right?” Ummm, ok. So after making use of your liberal visitation schedule for two weeks out of the last 104, you want to stake your claim? Sure. Yes, you actually are supposed to have him starting on Christmas Eve, as it is an odd year. “I’ll try to get some time off, then,” he said. Sure, I thought. Like last Christmas.

He called once more, spoke to The Boy only for a little while, and that was the last we heard anything about Christmas. The Boy’s birthday was Wednesday, and his mom had sent gifts, one from her, and one from his dad. Her card said they were looking forward to seeing him at Christmas. But the ex didn’t even call his son on his birthday.

What?

My mom told me that recently, she and The Boy were at Walmart and he said he really hoped he’d get to see his dad at Christmas, because he hadn’t seen him since April. Yes, it hurts him more than he’ll admit to me, and yes, he does keep track.

As The Man says, kids are only young once. He’s going to miss it completely.

Angry for The Boy and pity for the ex. And partly angry for me too, really, because I have my own life and family that will be affected by his inadequacy. But mostly angry for The Boy.

Life Gets In the Way

Posted on December 11, 2014 by simpleijustdo

I wish I had a better excuse for not blogging. I wish I could say I won NaNoWriMo this year. Unfortunately, life gets in the way sometimes, and, well, we’ve been having a rough go of it lately, behaviorally. It’s hard to write when you have no idea what is going on with your kid. It becomes harder to find time when you struggle to get him to do any homework at all, and really homework is torture for you, as well, and you just need some downtime.

But I’m not one for excuses, except to say that it is what it is. I have missed blogging, and it is something I need to do for my own well-being. Ergo, it shall be done. I may not write every day, but I will write, and I just hope that there are a few of you still out there to read it. If not, that’s ok, too.

Be prepared, though. I’m not going to sugarcoat it. Puberty + Autism = Nothing for the faint of heart. I sure hope puberty is the culprit here, because if this isn’t temporary and transitional… I’m not sure I’ll make it.

Thanks for sticking by me. I’m back on the wagon again.

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.