On days like today, I wish I could put my forehead against his and project to him what I am thinking so he could understand. We are having a hard time communicating, and everything is getting lost in translation. No, you cannot keep a magazine that got left in the bathroom and is now covered in pee. No, I do not have a piece of paper without a crease in the middle. No, there is nothing we can do about it. No, we can’t go get a new battery for your watch this very second. No, it is not my fault. “No” does not mean I am being mean. “No” does not mean that I do not love you. Please calm down. Please understand.
Category Archives: Special Needs Parenting
No Time To Be Scared
When The Boy was born, he was two weeks early and a tiny little thing, but he was still considered full term. It was a long labor, but he was deemed a healthy baby boy, who had no problems nursing, and we were sent on our way. Once home, I started to worry about how much he was spitting up, and also by the color of it. We had been assigned a pediatrician through the hospital, and we called with our concerns. We were basically poo-pooed as newbie parents and told not to worry about it. Except that I had done more than a fair share of babysitting in my time, and this was not right. When The Boy projectile vomited across the kitchen (our very large kitchen), we went in. The doctor looked at his bib, with the yellow stain on it, and then all of a sudden she was concerned. She took the bib, walked out of the room, and then came back and told us if it happened again to go to the emergency room. Even as a newbie parent, I was less than satisfied with that response.
We decided to get a second opinion. Same medical system, different doctor. After explaining what had happened in the past two weeks, he asked, very casually, if we had had an “Upper GI”. Umm, nope. The previous doctor told us that would be too invasive. He replied that it wasn’t invasive, the baby drinks some milk-like stuff, and they take an X-ray to track the liquid through his gastrointestinal tract to see if there is a blockage. Made sense, didn’t sound invasive, and one was scheduled ASAP.
We brought The Boy in, fed him the stuff, and then we were met in the waiting room by an intern who told us that our son would be having major intestinal surgery in a matter of four hours.
Words cannot describe the shock and fear we felt, but I appreciated the professionality and care from the staff, and kept thanking the stars, the heavens, God, and whoever else that would listen that we had gotten a second opinion. The Boy had a “malrotation of the intestine” and they told us that if he hadn’t had the surgery within the next 24 hours, he may not have survived.
We went straight to the surgery waiting room and waited. And it was quite possibly the longest and worst day I have ever been through, although we really didn’t have time to be scared, and were still in shock.
He did exceptionally well in the surgery, and was admitted to the hospital where one of us stayed with him round the clock for the next week. He was not allowed to eat or drink anything except sugar water until his system was completely clear, so that they could make sure the surgery was a success. I didn’t realize it at the time, but I look back at the pictures and he looks like a little baby skeleton. My parents hadn’t even met him yet!
I was still healing from childbirth, and taking shifts being there, lack of sleep, worrying… It was a trying time. The surgeon was fantastic, checking up on the little “peanut” as he called him, and pretty soon, we were able to take our baby boy home again for the second time. It was never lost on me how very lucky we were and are that all was well in the end. Except, as the surgeon explained about the scar on his belly, “He’ll never be a Chippendale dancer.” I think we can all live with that.
Most Important
The Passage of Time (Photo credit: ToniVC)
The Boy and I are first to the school every single day, with the exception of the lone morning custodian. He lets us in the door shortly after 7am, and we wait, often for at least 10 minutes, until other faces arrive, children and their parents, but rarely the same ones. And then around 7:15am, the Kids Club staff arrive.
There have been a couple of times when a parent has come in, assumed I worked for Kids Club, and promptly left their children with a quick peck on the cheek. Nevermind my big puffy coat and scarf… Or there are times when a parent comes in, constantly looking at his/her watch, declaring over and over how they have to get to work (as if I don’t). Today, a woman actually pecked her kids and told them she was going to go wait by the door, because she had to “skedaddle”… Yep, that 15 seconds from the gym to the parking lot door is really going to make a difference, Lady.
When I overhear things like this, I often look at the kids, who look embarrassed and sad. All of these parents are sending a message, with their words, actions and body language that no kid could miss — work is more important.
There are times when we have a rough morning, and yes it’s irritating to have to text my boss and tell him I am running late, but he’s my kid. There is nothing on this planet more important than him. And if I have to be a few minutes late to work, so be it.
I hope these parents get a clue before their children are grown and gone, but realistically how will they learn?
Got Your Summer Booked Yet?
One of the biggest anxieties The Boy has about moving is that he will miss his ESY program (that’s Extended School Year, if you weren’t aware). ESY is a service that public schools provide to children who would otherwise take a drastic step backward in their academic and behavioral progress if they did not continue a type of school structure through the summer months. Many districts keep this service on the down-low because if parents don’t know about it, and don’t ask about it, and they don’t happen to mention it at the IEP, they don’t have to have a program and pay for it. I know districts that do this on purpose, intimately. Some districts even go so far as to tell parents that their children don’t need it, just so that they don’t have to have a program…
But The Boy’s district has a fabulous program, although it has scaled back even in the five years The Boy has attended, I’m assuming due to funding cuts. In any case, he digs it. Looks forward to it, and collects the T-shirts (even from years before he attended, thanks to an awesome gift from his amazing ASD teacher). It’s like really, really laid back school. But it’s structure, and school-like, so The Boy can’t get enough.
Now, when we move, from what I can tell, there is nothing like that where we will be. Plan B is a summer program offered either by the Boys and Girls Club or the City Parks and Rec department. If it isn’t Boy-friendly (i.e. they’re not used to having special needs kids participate…), it soon will be. I can guarantee that.
I just hope we can get him in a daily program with enough structure that he will enjoy it, and maybe meet some new friends. It breaks my heart that he won’t be able to attend ESY, but I hope with a little planning and forethought, we can find him the next best thing.
Wish us luck!
Strategy for Meltdown Recovery (For Mom!)
In the immediate aftermath of a “rough morning” (which usually includes some lost thing, screaming, blaming, slammed doors, etc…) I am shaken. Someone will say “Good Morning!” and I can barely respond. I will often cry in the car on the way to work, not for a specific hurt, but because it is a release from the anxiety and tension that were at sky-high levels only moments ago.
Usually, a rough morning means a crappy day, because I am distracted and upset, which leads to less focus on work, which leads to less work getting done, and so on…
But today, I made a split second decision that helped me recover. I decided to take the surface streets to work instead of the express way, and I decided to stop at a convenience store that I know carries my favorite sweet tea. I picked up my tea and some peanut butter crackers, and happily munched and drank on my way to work. By the time I got there, I was MUCH better off than I usually am on a rough morning. I won’t always have the time to do this, because rough mornings often lead to being late to work, but I have found a coping strategy that works, and it makes me happy.
Tackling a Few Myths About Autism
How can there still be so much misinformation about autism? I understand that there is a lot of research going on, and there is still a lot that is unknown, but really? Here are a few common misconceptions:
- People with autism do not have empathy.
My son has empathy. There have been times (like on my birthday a few years ago), where I thought he lacked a shred of it, but there have been times that he has comforted me when I was crying or upset, or just needed a hug. In fact there are many who will say that people on the spectrum have too much empathy, and that is why they have to distance themselves from others, because they just feel too much. I particularly like Diary of a Mom’s post on this subject.
- People with autism are either really good at things or really bad at things.
I believed this one for awhile, too, thinking The Boy was just really, really smart. At everything. And he is extremely bright. But you know what? He doesn’t get math too well. He has a great ear for music, is a wonderful speller, doesn’t like to read a whole bunch, although he can, and at a high level of comprehension. But math is not his best subject. I used to think it was because he didn’t like it, which is partly true. Truth be told, he struggles with it, and I’m not sure I can say it’s just because he’d rather be playing video games. But he doesn’t fail math either. In fact, he usually gets Cs.
- People with autism do not have good eye contact.
This is one of the reasons I was not so sure he was on the spectrum in the very early days. In everything I had heard, this was the number one “sign your child may have autism” and it just didn’t bear true for The Boy. He was a happy, giggly boy, and did not avoid eye contact as an infant, toddler, or small child. It is more apparent now, but this is not a hard and fast rule for all children on the spectrum, by any means.
- People with autism may not have it forever.
This site, which attempts to address some myths about autism, actually has this listed as fact, rather than a myth! This is basic stuff, here people. There is no cure. Autism is a neurological disorder, and you cannot “fix” a neurological disorder. You can, with early intervention and therapy “retrain the brain” to function more typically, but autism is for keeps. And this “research that shows you may outgrow autism” consists of one study. With fewer than 40 participants. What’s really at work here is those early interventions and therapies allowing those with autism to be able to function more typically in society, rather than not having autism anymore. They just hide it better. (Won’t it be a great day when our children don’t have to hide their true selves?)
What are some other myths you’ve encountered?
His Latest Obsession
His latest obsession is killing me. Ever since he returned home from being at his dad’s for two weeks, it has been non-stop cats: dressing like a cat (which consists of sticking a scarf in your pantwaist), meowing, crawling on the floor, and talking about “Gary”, his imaginary cat.
The Boy’s hands after he returned from his dad’s in January…
Today, I snapped. Not feeling well and trying to get some rest, I asked if we could take a break from the meowing. And as soon as the words left my lips I knew what a mistake I had made. You just can’t suggest that he take a break from his obsession. That would be like asking someone to take a break from their career. It’s not that easy.
But it’s driving me batty. Mostly because I can’t really help him make this one useful. And he keeps asking about when he can get a cat, and when I will outgrow my allergy. And I’m not a huge fan of cats to begin with. If the “visitor cat” were coming around, he’d get his fix that way, but I don’t think he’ll be coming around with multiple inches of snow on the ground.
And so. I’m at an impasse. And slowly going insane.
Bec at snagglebox.com wrote an amazing post about this very topic. I think I need to re-read it a few hundred times to get me through this.
Schools and the “Quick-Fix” Solution
I don’t often write about school, neither mine nor The Boy’s because it puts me in a precarious position. And I just don’t want to go there. Yet.
But there is one thing that I think I can safely generalize about public school systems today, and that is the preponderance of “band-aids”: quick-fix measures to address very real, very big problems. These “measures” are often implemented in a hurried fashion, without much forethought, and end up being a patch-as-you-go solution which doesn’t really work for anyone, but is there so that we can say we have it.
For instance, after Newtown, The Boy’s school realized that in the morning and afternoons, they were allowing parents (and virtually anyone) unfettered access to the school due to drop-off and pick-up for Kids Club (but also clubs and other sponsored events after hours). The day following Newtown, the door was locked in the morning. No letter home, no signs on the door. Nothing. Because we are almost always first to school, we had to pound on the door to get the custodian to come and open it up for us. Later that same week was The Boy’s school band concert, held during the school day, and every single parent attending the concert had to be buzzed in, and had to report to the office, sign in, and get a visitors badge. That’s about 100 people!
some old fire alarm bells (by hpeguk via flickr)
After break, they had installed a new bell to push, which rings in the gym so that a kids club worker can answer the door. Can you imagine how often those people are running back and forth (as opposed to, you know, supervising children)? And what if the person is ringing to be let in for some club other than kids club? Do they let them in if they don’t recognize them? And what if there is an event going on in the gym, like a parent meeting, concert, or girls scout ceremony, and that bell rings? Not to mention that the bell is loud, and rings like an old fashioned fire alarm… Yup. A fire alarm sound for all of those kids on the spectrum. Going off about every 4 minutes. How nice.
And the response to people who ask these questions is, “We’re working on it.”
I get it. You want to make your school safe, and you want to make it safe now (although, why this wasn’t considered after Columbine, I don’t know). Except that a little notification, and some planning and forethought (and maybe a little money spent) upfront would go a lot further than a piecemeal, thoughtless plan like this, that is still being “worked on”.
This is where schools look unprofessional, because it really is. And this is only an example of the many “band-aids” I witness myself and hear about from others like this, almost on a daily basis. I know educators are short on time and money, but those are really just excuses. There is no sense in not doing something right the first time, from the get-go, with a carefully thought out plan. And there really is no excuse.
The R-Word, Again
Why am I writing about this again? Because I’m still encountering the word, almost daily. Granted I work with middle schoolers, but really? Most of them know better than to say it, at least around me. It’s the rest of the world that hasn’t gotten the clue, yet…
Here are the most common arguments I see on the internet, about why we special needs moms need to chill out about this:
- It’s just a word. Yep, like the n-word, or any other label for any other minority in the country. If it’s just a word, go into any urban area and start using these words, and then let’s see if it’s still “just a word”.
- Retarded is a medical term. It is actually being replaced in the DMS-5, and is really still only used in insurance paperwork and research. In fact the term “mental retardation” began to be used because the previous term used for the condition was deemed offensive. This argument didn’t work for long back then, either.
- You are trying to be the word police, and I have First Amendment rights. Go ahead and use the word, as long as you use it in job interviews, when you meet your girlfriend’s parents, when trying to get a bank loan, and any other time you want to put your best foot forward. Huh, you say you don’t want to do that? Then maybe that’s a clue that it’s a word that makes you look like you have a stunted vocabulary.
- It’s not really aimed at people with intellectual disabilities. I would never say that term to someone’s face. Well, that’s even better! You would use it behind someone’s back. Continue using it and wearing T-shirts with the word on it, so that I can steer clear of you. If you censor yourself around certain people, who knows what you are saying about your friends behind their backs!
- It doesn’t really hurt anyone. I can still remember being at a family Christmas right around the time when we finally got a diagnosis of autism for The Boy, and his uncle called him a “spaz”. I felt like someone had punched me in the gut. I was thankful that The Boy didn’t hear it, but words really do hurt.
Do you think the people who tweeted these disgusting, nasty things about Gabby Giffords were just using it as a slang term?
Do you want to be lumped in with them? Because you will be. Arguing that you aren’t using it “like that” won’t get you anywhere. It’s time to drop the word from your vocabulary. It’s a losing battle.
The Blame Game
Apparently, being a tween with autism means everything is your mom’s fault. No really. I think it’s a thing. That’s what someone told me. And in our house, it is certainly bearing true.
This week it all started with my gleeful purging of the broken, un-played with junk in The Boy’s room. You see, a little voice told me to either take the trash bags out of the house, or at the very least, tie them up. But no, I don’t need to listen to no stinkin’ little voices… And The Boy promptly raged at me when he figured out I had thrown away some unopened McDonald’s toys from like, eight years ago. So much for my glee. Everything was my fault. I am the meanest mom ever. He wants to move away and not live with me anymore.
He was angry, and I could understand it. But I had reason on my side (fat lot of good that does you when you are arguing with someone on the spectrum). I ended up having to sacrifice three McD’s toys from my plunder, and all was well.
Until today when I picked him up from kids club after school. And he was missing another salvaged dollar store toy, a fake blackberry. And it was all my FAULT. I LOST IT. I am so mean. Why would I throw out his TOY?? Except he had salvaged it and brought it to school, so it clearly wasn’t my fault that it was missing again. There I go with the logic again…
Wouldn’t get into the car. Wouldn’t get out of the car when we got home. Raged some more about how awful I am.
But I don’t just sit there and take it. He loses screen time if he can’t be respectful with me. Therefore he lost screen time both days. Once he was able to calm down, I thought of some chore he could do to earn it back, and again all was well. Until something else will be ALL MY FAULT again.
Sigh.
I hope everything won’t be my fault forever.
Simple. I Just Do. 