Tuesday, August 27, 2013

I have faith

Faith is what gets me through every single day. Not actual faith in God (I'm agnostic, so please, don't take this post to mean that I'm preaching to you.), but faith that things have to be alright. I'm no Pollyanna by any stretch of the imagination. I'm pessimistic, realistic, and fearful. I am riddled by anxieties every second of every day. 

But still, I have faith in Morgan because I feel that's what he is asking of me without ever saying a word.  

I gave birth to my child knowing that I would be entrusted with his care for at least eighteen years. I had no way of knowing that my child would be autistic and that my caring for him might end up looking very different than I imagined. I didn't know that putting faith into my son would serve so many purposes for both of us. 

And I didn't know then that communication comes in many forms.  
Because it's true.

For what seemed like eons, I wasn't listening to anything but doubts coming from my own head or from other people. I have had to learn to shut out those naysayers and have some faith. 

I am continuously proud of the progress my son has made. Every time I allow doubt to creep into the recesses of my mind of whether I have been doing right by my child, he astonishes me by showing me what he can do. There are always setbacks, yes, and some worse than others, but I have faith. In him. 

When the setbacks are bad, I will be right here waiting for Morgan. With open arms and faith that he can do anything.

Last night, Morgan read a one page passage to me about the rain forest and the animals in it. A year ago, this would have been impossible to get through in one sitting, one day, or maybe even one week. I'm not sure how much he comprehended because I didn't ask. I was, honestly, too excited that, even though he stumbled through the words, he diligently stuck with the assignment. He finished reading and I teared up. 

My son can read. 

Another goal  that someone once suggested he would never attain has been achieved. It has made all of those hours of practice, therapies, supports, and ugly tears on both of our parts worth it. 

He, at a very young age, and without saying a thing, asked me to have faith in him. And I do. 

Monday, August 19, 2013

This is not it

There is a sentiment that I come across, not often in my circles, but often enough, that this is "it" for our kids. That a diagnosis of autism is the end all, be all, of their lives and we must be mournful they are not living "normal" lives. Or, that where they are right this second as children will dictate where they will be ten years from now as teenagers or adults. And so, we must mourn what they, as children, and we, as their parents, do not have. 

I don't mourn the life that I always imagined for my son Morgan. It was never his to have, nor was it mine as his mother to give to him. 

I mourn the societal expectations put onto our children, the labels and those expectations that come from labeling, and the thought process that stems from a doctor telling you, "Your child has autism." Autism isn't a death sentence, my friends.

I'm very testy about the misconceptions surrounding autism- whether it's being autistic, parenting an autistic, or the myths surrounding autism. 

I mourn that, as parents, people look askance at us if we dare laugh at our kids' antics and forget that, at the end of the day, they're only kids and we're only parents. In the same vein, it isn't wrong to celebrate what your child has accomplished through hard work. Even if it's something small in appearance such as sitting an extra thirty seconds in a chair. 

I am not going to sit up on my soapbox and pretend there is zero anxiety in me for my son and his future. There is always something lingering in the back of my mind that I feel I must teach him before time runs out. But what stopwatch am I racing? He's not even nine yet. Where he is now will not be the place he'll be standing when he's 18, 25, or 30. There is time to allow him to be a kid, even if my definition of him being a kid might be different than others. 

I will also never say that he doesn't struggle due to his being autistic or that some days look like pure hell on him. The world is overwhelming for him a lot of the time. Most milestones for us have been painstakingly slow at times, but those that he has reached have been sweet. He struggles in school, but that is why we have a great team helping him to learn. 
Pin this. 

I am not saying that a parent cannot be sad over their child being diagnosed as autistic- that is their right. I am saying that this is not "it." Development is not always static. Let your child and not doctors dictate what he or she is capable of doing.

 Don't ever sell your child short. Please, I'm begging you.  

Our children are capable of so much and have unneeded limitations placed on them by doctors, teachers, and other "experts." I struggle daily as to whether I should take a step back and allow Morgan to keep trying something or help him (read: do it for him). He keeps surprising me with what he knows, so I keep taking a step back. 

Don't ever believe everything you read in those books and manuals about what to expect when raising an autistic child. Don't let those (sometimes) wastes of paper steal your hope for your child. 

For those of you new to the world of autism, hang in there. Throw out your expectations of what your child won't be able to do. Your child might surprise you.  

Tuesday, August 13, 2013

Letting him sing

This morning, Morgan was super stimmy. We're talking bouncy house lovin', Tigger was doing shots of expresso and then jumpin' around, plus scripting/singing (loudly) every Thomas the Tank Engine song known to man and then some stimmy. It smells like the new school year around here, folks. 

I was expecting the usual moans and groans from Bay in the backseat. But no, there wasn't a peep. He even sang along a few times. I peered in my review mirror at a stoplight once and saw Bay covering his ears. I cringed, thinking that I would hear, "Mor-GAHN! Stop SINGING! PLEASE!" But... nothing.

We pulled up to the school and Bay told his big brother to have a great day. 

I dropped off the big kid, who went bounding off to his para (sorry for the lack of a warning text, Mrs. S!). I was told by Bay that he could still hear his brother singing (I hear ya, bud!), ran an errand and headed home. On the way, in between chatter about zombies and the park, there was a lull in the conversation. 

"Mama," I heard from the back, "Morgan's the best brother ever. He really needed to sing and bounce this morning, huh?"

"Yeah, sweetie, he really did. He needed to get that out before school."

"Does that hurt him? To need to do that?"

"Why don't you ask him?"



"I hope I'm as smart as my brother. He's the smartest brother ever." 

"I think that's pretty cool of you think."

"Morgan's so good, Mama."

"What do you mean?"

"To me. He's always good to me. He's not mean to me, even when he's sad or being mean to you. He's a good kid to other kids, even mean kids."

"Yes, he is a good kid."

"I'm always going to let him sing before school. I wouldn't want him to hurt. He could lose his awesomeness."

I'm going to admit that I pretty much melted right there because, well, my youngest son is great. He adores his big brother. 

A few weeks ago, during a rare blow up between them, I sat the kids down and told them to say one really great thing and one thing that bothered them about the other one- but to be respectful. Bay's, about Morgan, was that he didn't play enough with him and that he's the smartest boy in the world. That's huge, folks. 

Every time I think that Bailey might be dooming me for insanity, he turns around and surprises the pants off of me. He is, truly, a great child and wonderful brother to Morgan. 

I hope that they always stay this close. And that Bailey always wants his brother to sing. Even if Morgan does sing very loudly. And off key. 

Monday, August 12, 2013

A note for teachers

Dear teachers for the 2013 school year,

Hi. I'm the mom of an autistic third grader who also has sensory processing disorder. I thought I would drop off some tips for you just in case you're going to be working with a kid like mine this year in your mainstreamed or special education classroom. Trust me, these things are gold and might even save you being yelled at by a mom like me (I've been known to get a bit "testy."). You'll thank me later.

First and foremost, please understand that we, as parents, don't want to come into the school year hating you. If we seem defensive, on edge, or other wise squirrely, it's because a lot of us have just gone a portion of, or the entire, summer without some form of school and some of the services we depend on for our children. We're close to losing it, okay?

You are a huge part of our team for the next nine months. Please know that we're needing and wanting to work cordially with you. At least until you give us a reason not to.

We're special needs parents. We save everything including emails and notes from you. Keep that in mind when you're writing something to us about our child.

When getting a child's IEP, don't just glance over it. I want you to know that IEP and know it cold. It is a binding legal document. Don't ever say to a parent, "I don't know," when someone brings up an accommodation. Know what you're speaking of and  follow that IEP to the letter or someone like me will fry you.

Also, speaking of IEPs, if you have a meeting for one coming up, please use correct spelling and ensure that you're speaking about the correct child. It's the small things that touch a parent's heart, truly.

If we're offering up suggestions for your classroom setting, please take them seriously. We've been in this awhile and this is your first time teaching one of our children. If I tell you that it's all of the tacky fuzzy fake fur you have your desk draped in that's causing my son to stand next to your desk and tweak out, you might want to consider taking that sensory object out of the classroom.

Be willing to make some accommodations for your "mainstreamed" autistic students that you don't make for your typical students, like shoe tying. My son is eight years old and still cannot tie his shoes thanks to poor fine motor skills. There is no forcing him to do this; he practices quite a bit and feels embarrassed that he can't tie them. He's tied them twice, but hasn't been able to do it again. So, "forcing" a child who cannot tie his shoes to tie his shoes or else walk around with laces flopping, thus causing the child to fall down, is nothing short of mean.

Take a child's sensory break away from him or her, catch hell from the child and the parents. Just saying.

On that note, get to understand sensory overload. A lot of the "autism" (borrowing a phrase that a teacher once used on me) you think you're seeing with behaviors has to do with a child going into sensory overload. Imagine if you couldn't block out all of those classroom noises, both big and small, plus the lights. Then add in the feeling of that desk, plus the roughness of a uniform or jeans. Then add in smells and anxiety because someone wants you to hurry up, think, and try to answer a question. Or color and cut something out. Meltdown city.

Forget the test scores and look at the child. When I say test scores, I'm also speaking of the clinical ones sitting in my child's file. You know the ones.

Teachers are supposed to be support people. When they aren't, it's a stab in heart. Know that if you dislike our child, we will know. Know that if you treat our child in a disrespectful way, we will find out. If you cover something up, we will know. Your goal should be to help get our children through the school year and treat them with dignity. The bar should never be set so low so that your only goal is to avoid lawsuits, charges, and a CNN appearance. Don't be that teacher. Ever.

Finally, the majority of us are involved and caring parents, just as you would find in a neurotypical classroom. We're not all crazy, so don't judge everyone by me. However, most of us have been in the special education routine long enough to be jaded. We've had some bad teachers and therapists. We love our children more than life itself and are willing to be insane in order for them to receive services.

Don't ever underestimate my child, ever. Don't ever underestimate me as his parent. I'll try to do the same for you as his teacher.

Thank you,

Mom of Morgan,
A third grader with a great personality, fascination with trains and numbers, a deep belly laugh, and autism.

Thursday, August 8, 2013

Welcome, Anxiety my Frenemy

Somehow, I'd almost forgotten this breathless feeling over the summer. This feeling where I cannot breathe from the moment I wake up. But school starts tomorrow and my unwelcome guest, that monster anxiety, is out in full terrorist attack again.

During the summer, I can break things down into what I can sort of control/micromanage (everything that happens under my watch) and what I cannot (other people). Since more happens under my watch, I might even appear to be relaxed and joyful. However, during the school year, I really cannot control anything and so, I worry. A lot. The more I worry, the more anxiety is fed and the more breathless I become.

If anything, I'm a giver when it comes to feeding that monster anxiety during the school year. My brain never shuts up, day or night, and sometimes the most random things will filter through it.

It's like a damned ticker tape in my head.

We had a great year for second grade. Was it too great? Does this mean that, in order to balance the order of events in this world, third grade is going to suck as badly as first grade did? *Mrs M., if you're reading this, no offense. We loved you, but first grade was traumatizing.

Morgan has shown gains, clear gains. But those are clear to me, are they going to be clear to a teacher who does not know him?

Did we have enough fun this summer? I mean, I had fun, but it seems like we could have done more.

I wonder why the kids cannot figure out how the heck to turn off the lights? It's not hard.

When the school does evaluations (He turns nine this year and needs to be re-evaluated.), are they going to find that he's labeled something else? Does that matter? In his gains, has he made too much progress to get the help he very clearly needs?

How are the budget cuts going to directly impact my child's education?

Is Bailey ordering another thing off of Amazon? I need to tell his new teacher. What if that child gets a hold of her cell phone? Oh God.

Please let him learn to self-advocate. 

God, please let him be comfortable in his school's environment. Please.

Maybe this will be the year he makes a friend who will love trains as much as he does. Or at least has an interest in them. And Thomas the Tank Engine stories. Who will also understand Morgan's British/Thomasish slang for things. I might be shooting for the stars on this one, but Thomas doesn't seem to be exiting Morgan's life anytime soon and I'm not booting him out. It'd be nice for Morgan to have a friend with shared interests.

Did I buy him the "right" kind of shoes? This is so stupid. Is he going to get teased for that back pack? Crap, still stupid.

Is that IEP good enough?

He's really having problems with auditory processing. I need to mention that. I cannot forget to mention that. I need to put that in his introduction letter to the teacher.

Who is his teacher? I'm freaking about this one and would really love to know about a month in advance so that I can thoroughly cyber stalk this woman or man. Who,"Hi", if you found this blog because other members of the school's faculty read this! I'm not nuts, I swear. Well, maybe a little "neurotic." I care about my kid, a lot. I'm one of "those moms" who write about a thousand letters a school year. I also then turn around and forget a lot of things. I'm sorry about that. Life is complicated at all times. But my kid? He's great! Also, since my other child is in school this year, too, I can volunteer. A lot.

My mind ping pongs like crazy from subject to subject, sometimes not solving anything, but always worrying on something which, normally, I won't be able to solve or impact in any way. Everyone has stress and mine is no more than most people. I just wish there was an off switch to my brain.

But still, it was nice to breathe for a bit.

Breathing spot, sort of. Before the jellyfish.

Thursday, August 1, 2013

Don't be the mom I want to shank

This is a topic I've been kicking around in my head for a long time, but I have not wanted to really follow through on writing because it's kind of mean. I know I will come off as a sanctimommy at some point, but damn. Just, damn. Some things need to be said, okay? Keep in mind that I'm bouncing around from special needs parenting to typical parenting with this rant, please.

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I asked for input from other moms and received big time. 

For starters, if you take your child to the pool, interact with that child. Go on, do it. It is not my job to watch your child and make sure he isn't drowning, splashing, or krakening the hell out other children. Don't be pissed off whenever I finally get fed up and bring him to you and expect you to do something other than read your magazine, okay? This child came out of your uterus, you get to take care of him, so do it.

Playing off of that, don't ignore your children. It's rude, for starters, and it shows the rest of us the quality of your parenting or lack thereof. Want to know what ignoring your children looks like? Talking about them like they aren't right next to you. Or flat out ignoring requests, bad behavior, and not knowing what's going on in their world. Stop it.

Don't take advantage of people who don't ignore their children and assume that they would love to babysit your spawn. "I'm tired of being the babysitter for the neighborhood because I pay attention to my own kids," says my friend Amanda from Confessions From HouseholdSix.

Don't assume because my child is autistic that he's stupid. Or that because he's wanting to play with your younger child that he's incapable of playing with your older child. Maybe your older child is a jerk.

Get over being a victimommy. Autism and other special needs aren't pretty, I get that. However, your child's autism isn't about you. I know that meltdowns, IEPs, visits to the doctor, etc., are a bitch. But this, at the end of the day, isn't about you. It's about your child. Feel free to cry foul to people who know you best but if you're just meeting someone, don't do that. You sound like someone I might want to avoid.

On that note, venting is always good. There are plenty of Facebook groups, therapists, etc., if you don't have friends. But please, practice some decorum, especially if you're doing this online. 

Of course, sometimes it's the simple things that piss us off.  "Talking. They should just refrain from talking," says my friend Flannery from The Connor Chronicles. She gets it.

Stop the comparisons with special needs. We are each on a different path but on the same planet. You don't know what I go through any more than I do; there is no sense in telling me I have it easier or harder than you and then listing the reasons why.

Stop letting your children get away with asshole behavior. This applies across the board to all parents. I'm a firm believer that parents create asshole kids. You allow you child to get away with asshole behavior once, twice, three times without saying much and guess what? Your child ends up being "that kid" we all tell our kids, special needs or not, to avoid. And you end up being that mom we want to shank- repeatedly.

Saying, "all kids do that." I've heard it, my friends have heard it, we all hate it. When we are discussing our autistic child's habits/obsessions/behaviors and another parent (the clueless wonder) says that, we all feel like that parent is trying to invalidate our experiences. If little Johnny is still obsessively lining up cars at the age of eight, flapping like a bird, and can repeat Nemo line for line... he might be autistic. So bite me.

Offering up prayers or unsolicited advice will make me want to slap you. I've actually had people offer to pray for my son's autism to go away. What is that? Pray for my sanity to stay somewhat intact while I raise him and his little brother, pray we get our house sold soon so I can move out of this apartment, but please, don't pray for my son. He isn't sick, he's autistic.

Giving looks of pity. 'Nuff said.

Allowing your NT kid to have fewer manners and social skills than my autistic kid is bad form. Really. I don't feel like I should have to elaborate, but here we go! This goes back to allowing your kids to be assholes, too. Teach your children manners, it isn't hard. Teach your children that it's mean to be mean. Teach them to respect other people. Want to know how to do this? Practice what you preach.

Don't pull your kids away from my kid when you hear the word "autistic." You're teaching them that autistic is bad. You're telling me that you're a bigot. And an asshole.

Starting a sentence with, "I would never allow my children to..." which is in reference to my child still carrying a lovey, using a pacifier, wearing second hand clothing, or eating food which is probably riddled with dyes and GMOs. Guess what, asshat, I'm doing a lot of things I never thought I would, either. Don't judge. I'm willing to bet you hide in your closet and drink cheap boxed wine at night. That's not organic, just sayin.'

I'm leaving a lot out, but this was turning into a book. What I'm getting at is just be a good person. Be a good parent. I know I practice unconventional parenting, but my children are polite and fairly pleasant creatures. Most of the time.

What would you add to this list? What parenting practices are you seeing that drive you insane and would cause you to not want to interact with another parent?