Peeking into another world

I belong to several parent communities, on Facebook as well as LJ and they are all for parents of children with special needs. Some focus on developmental delays, others on mental issues and all of them welcome ANY parents of ANY child to join. The communities primarily exist for the parents to exchange information, give advice and vent or cry to other parents who understand the difference in parenting a child with special needs.

I joined those communities long before Lil Miss was born because I have TWO sons who are on the Autism spectrum. I have been parenting them for a long time now and most of what I have learned and accomplished was on my own, without the internet. I think it is AWESOME to have the internet available now for parents of special needs kids. Parenting a child with special needs can be scary and lonely and painful too.

I remember how scared and alone I felt in my early days. I *was* alone. I didn’t have any groups, real life or online, to go to with my questions or fears. I only had a few knowledgeable professionals I’d see on occasion who could answer my medical and developmental questions. But they couldn’t help me know how to navigate being a parent. When I was raising my boys? There was almost no one to ask for help.

These communities are what I needed back then, what I could have really used when times were dark and I wasn’t sure whether I was doing anything right. Because these communities are created for exactly those times. Members go and ask questions, post doubts, and check for clarifications. I had no place like that to go when I wanted to ask for help. So that’s why I’m in these communities. Because whenever I see a parent crying or asking for help, I want to give them what I needed back then. Whether its real life advice, technical questions (to help clarify confusing situations) or just commiseration, I never hesitate to join in when someone seems like they need help. Or commiseration. There’s a lot of commiseration. A LOT.

Let me explain something about commiseration. When you are the parent of a special needs child, one recurring issue you wrestle with is whether you’re “allowed” to be frustrated or afraid or angry about anything having to do with your child. Parents in general get a lot of guilt trips heaped on them by society but parents of special needs children get an extra helping. People are always telling us cute little homilies that are supposed to inspire us or something, I was never sure but usually all the do is bring us down. Because those cute little homilies (much like the advice we get on a CONSTANT basis) usually make it clear the person giving them has absolutely no clue as to what we are going through. Its much like if you wanted to give a “get well soon!” card to a person dying of cancer. You think that’s sweet but to them, it underscores that you really do not understand the dire reality of their situation. So we tend to be quiet about our struggles and shrug them off in mixed company. If we aren’t getting pithy little saying to lift our spirits (we’ve heard them ALL) then we’re being told that we’re doing everything all wrong, that our children are just horrible little brats who need a good spanking. Or that we’re too harsh on our darling children who only act up because they need attention. Or we’re just trying to avoid being REAL parents (whatever that means) because there’s no such thing as (whatever diagnosis you let them know your child has). We have probably heard every blame-shift saying imaginable. So we tend to shy away from other non-parents and grow thicker skin. But that’s hard when you are lonely. Parents are like anyone else; they need companionship. They need socializing too. But for many of us, socializing is a difficult chimera. Some parents of special needs children can actually leave their child in carefully constructed circumstances but some cannot even do that. For some parents, online is the ONLY socializing they get for long stretches of time. These communities serve us in so many ways. They are precious.

In all my years of being online, I’ve been in many communities for different reasons but I have ended up staying only in the special needs parenting communities. Because in no other community have I ever known a group of people more loving, supportive and understanding than parents of special needs children.  I have made lifelong friends and had some really amazing times with these people – people I have never met in real life and probably never will. Because we share some experiences that NO ONE can really understand without having been there – so we don’t judge. Ever.

We don’t ever tell someone they are doing something “wrong” or “bad” with their children. Never. We believe that “support” means lifting someone up. Even when we feel someone is making questionable choices, we discuss them lovingly, give advice gently and are always ready to step back and accept that we may be the ones who are wrong. Because when you parent a child with special needs, you find out very quickly that no one can possibly really know someone elses situation. So we are there for each other, even when someone is losing their mind, screaming, ranting, venting, crying maybe even shaking their fists in rage at the universe for their troubles.

We don’t care.

We hold them up anyway and wait for the end of the tears. Because we understand that sometimes its all you can do.

We recognize every parent as being fallible and human.

We know that because you are in this community, you care. You love your child, you want to do right by them and you are ready to be helped by others. You’re humble. You’re accepting. You’re loving.

Because if you can’t be those things, you can’t parent a child with special needs. Its part of the territory and we know it.

So if you see me make comments occasionally that seem callous or cold and clinical… if you see me tell someone its okay that they freaked out on their child… if you see me admit to losing my shit or raging against the universe too.. understand, this is who we are. Its how we manage to do what we do day after day, year after year and still keep hope alive. It’s not negativity, it’s honesty and acceptance. Acceptance of what we are dealing with and who we are.

We laugh whenever we can, bite our tongue when we have to and pick ourselves up off the floor more times than you can possibly imagine. Trust me, its not the same as parenting a “normal” child. It’s really not. It’s hard in many ways. It’s joyful in many ways. But it’s our unique journey and we navigate it best for us. If you see a glimpse of it, watch us for a few seconds, you might not understand what we are about.

Just trust us.


A Special Journey

I want you to look at something for a minute. Not a long time, just a minute or two then come back here.  Pictures of people

This is a special place. When I say “special” I mean that in many ways. It’s a summer camp for “special” people AKA People with Special Needs most commonly the Developmentally Disabled.  Not children, though it may look like some are children, this camp is actually for people who have “aged” out of the usual summer camp programs offered in their area. These are all actually technically and legally adults.

Look at those faces. Some of them are laughing and happy, aren’t they? But some of them don’t look like that… they look slack, unaware or unimpressed. Some even look unhappy. But the people with them, doing activities right next to them are happy, smiling even so. In some ways, looking at those pictures is disturbing to people because they are incongruent, the pieces don’t add up to a familiar whole and that tends to make human beings uncomfortable. Its okay if those pictures make you uncomfortable. Its even okay if those kinds of people make you uncomfortable. Let’s not worry about that right now. Just listen to me for a little while.

Those people, those adults are “special” as I’ve said. They aren’t cute little children and they aren’t people with clearly defined issues that you can spot right away and know how to handle. Many of them have multiple disabilities. Many of them have physical as well as developmental and intellectual disabilities. Of course everyone knows that this does not make them any less human beings. Everyone knows that people like this deserve to have a decent life with as much help as we can give them. Everyone knows that people like this can be joyful, happy, kind and curious.

What many people do not realize is that people like this can also be scared, angry, anxious and sad. They can also feel sexual, compassionate, depressed and rageful. They are not as limited as their faces make them out to be. They are, in fact, adults in more ways than you can see, even if some of them are “stunted” or “slow” or have lagged behind. Even the ones who cannot talk, cannot walk, cannot hold your hand – they still grow, change and feel just like everyone else. This is something that many people do not realize as well: those “special” children that you see on TV or commercials or even in the park do not stop growing.  Yes, all those cute-as-a-button kids you see and feel moved by continue to grow even after you stop seeing them on TV an commercials and the park. They turn into adults.

Look at them again. Maybe you can see more expression than you saw the first time. Perhaps when you look again, you can see beyond some of the frowns, the grimaces, the slack-jaws and the inattentiveness. Can you see the rest of their expression? Can you see how their faces change ever so slightly? or maybe their body language shifts? No? It’s alright if you still don’t see it. Trust me…

Those people are spending three days and nights at a summer camp especially created for them. There is a volunteer for every single camper. There are supervisors for the volunteers. There are nurses and a clinic. There are therapists and guides and sometimes there’s an interpreter too. They all eat in the cafeteria together, they go swimming, fishing, boating and there’s even a miniature train to take them for a ride. Some of them are not able to ride anything so there is a pier with benches bolted down so they can sit on the lake still and feel the gentle waves moving beneath them without fear. Some of them cannot swim so there are special floats they can lie in that allow them to sit partially up but stay strapped to their volunteer. There’s so many things to do…. activites too – some go on horseback rides with horses specially trained to be gentle and careful and patient. Some go on nature trails that are paved wide enough for a wheelchair. So many things and yet even if they stay in the pavillion they can listen to music, dance, shoot a ball at a hoop or do crafts. Each night is a group activity: karaoke, water fight, sing-along…

This camp is rightly named: Camp Dream.

Look at them one last time for me please. Look at the volunteers with each person. See how happy they are? Sometimes it seems like only the volunteer is happy. But that’s just the camera lying.

You see, each camper has their own assigned volunteer. Many times volunteers return again and again. So they get to know the campers (even though it is mandated that they change campers every time) and the campers get to know them. They know about pushing a wheelchair, carrying someone with dystrophy, holding someone with palsy and guiding someone who can’t see. More than anything else they learn, they learn how to help each camper find what they enjoy. They learn how to help each camper find their own smile. And the volunteers smile so wide even when the camper isn’t smiling because they know, that camper IS smiling.

Everything about this place is so special. They take people who are too old to go to public program campes, the people who aren’t “cute” anymore and they let those adults enjoy their childhood a little bit longer. With something everyone needs sometimes: absolutely devoted individual care and love.

These Special Adults are moving into the adult world. Some of them will stay with their caretakers for the rest of their lives. Some will end up in hospice care. Some will end up in specialized homes and programs specifically for their particular issues. Some will get small jobs and live in assisted homes with friends. Some won’t make it to later adulthood. All of them are expected in some degree or another, to stop being children. Even though in many ways they are NOT children, they still respond like anyone would to child-like delights of play, outdoors and exploring,

And this place does not turn anyone away for lack of funds. They find sponsors. Most of those sponsors will remain anonymous. Some will get a small mention in literature. But its not a commercial effort of any kind. This camp is really all about giving.

Look at those people. You may still feel uncomfortable, that’s okay. They are strangers and they don’t trip your social meter the way you are used to. But I know should you ever meet one, you will at least give them the basic courtesy, respect and dignity you would give any other adult human being. If you don’t know how to adjust your behavior with someone like this, you can ask. Ask whoever they are with, ask someone you know, ask the person themselves. You might end up spending more time with that person than you had imagined you could. You might discover your discomfort melts away into a special kind of wonder, joy and giving.

You might be surprised to find out that maybe you can smile that same smile the volunteers have discovered.

manners and school

so I talked to a counsellor again today. Geeziz. They’re going to take him out of the Honor’s classes he is in (and he’s auditing those classes, being excused from the first half of the semestre so quality of his work isn’t important, just completion) because his refusal to do the science fair guarantees his failing. They want to put him in regular classes and reduce his classload by one so he can spend one period a day with the parapro learning organization and study skills.

I told he we weren’t convinced that changing his class was the best approach and at this point we were leaning towards letting him repeat ninth grade. In deeper discussion she had to agree that the problem really isn’t his organization or study skills (although I agree they need work) its wholly his attitude. I told her we’ve been trying to make him understand the consequences of his actions and failing the ninth grade and repeating it SHOULD be a natural consequence but she hemmed and hawed and eventually let loose that his demeanor in the honor’s class has become an issue as well; he is overly sarcastic and dismissive of the class to the point of making the entire class uncomfortable. Let’s put this in plain ENglish: he’s being an ass and making fun of the class thinking he’s being terribly clever but what he’s really doing is insulting everyone there.


So its not just that they think he doesn’t belong, he’s actually disrupting the class. Fan-fucking-tastic.

This isn’t a new thing. His perception of his humor and the reality of his humor are two different things. And don’t think I’m giving excuses because of his Aspergers because I’m most decidedly NOT. He’s been warned about this tendancy to be insulting before. its been a problem before and we’ve had many careful, instructive discussions before about the proper attitude around others and how to judge other’s reactions.

So commence a nice angry conversation here at home with him. It goes in the same damned circles and i end up getting really fucking mad at him. I just feel like he’s deliberately ignoring everything we say every damned time. I look at him and I can tell that he’s just not believing anything we say.

“Son” if you try to finish other people’s sentences, that’s rude.”
“Son when you say general sarcastic things, you are actually making fun of the subject matter”
“Son if you don’t act pleasant towards your teacher or pay attention, you are basically being rude to them; you are telling them you don’t respect what is important to them”

and on and on while he just nods his head and looks at us with that blank stare. This is reminescent of the hygeine problem with Son Number One. It didn’t matter how many fucking times we told him “YOU STINK. TAKE A SHOWER, WEAR CLEAN CLOTHES AND USE DEODERANT” he kept ignoring us. until he was kicked out of class for smelling too bad
After that incident, he got his shit together and starting being clean.

SO what’s it going to take for Son Number Three and his snarky attitude? I just told him that he was upsetting other students, insulting them. “you think you’re being clever and funny but really you are OFFENDING them”

he looked surprised, but I have no way of knowing whether its going to sink in. WTF

I actually ended up yelling at him “I raised you better than this! you are a kind considerate boy! BUT NOW YOU ARE INSULTING PEOPLE! YOU KNOW BETTER!”


Tonight’s dinner was just me and Son Number Two.

I asked him how school was going. He mentioned he talked to his teacher about changing class. He seemed put out by the fact that he’d probably have to stay in her class. I found it puzzling since he has always liked his teacher.
“Why do you want to change class? are you angry with your teacher?”
“no, just disappointed” [he meant disappointed in the outcome. he missed my real question]
“You really want to change class, I see that. Is it because of Ms King?”
“Oh! no…”
“okay, do you like the other class better?”
“no, I don’t know..” [he’s flustered, I asked a question that requires subjective judgement but its bears an assumption that isn’t true so he has no answer]
“oh, you haven’t been in another class?”
“oh, okay. Is there a friend you want to be with? in another class?”
“maybe” [he has to remember who his friends are and whether they are in a class he wants to be in but he hasn’t noted other people’s class outside of his, and which friend am I taking about?]
“okay. you just want to leave Ms King’s class.”
“yes. I don’t like it there”
“you don’t? Do you like Ms King?”
“yes, but I don’t like my class” [he means his classmates]
“is someone bothering you?”
“everybody bothers me” [he’s annoyed now,remembering how bothered he is. that means its general, not specific]
“what do they do?” [he looks at me space-eyed] “the people in your class bother you because…”
“because they are always loud and bugging me and they’re Autistic”
“they’re autistic?”
“but, Son, you’re autistic”
“No I’m not!” [surprise, mild affront]
“yes you are. we talked about this. Son Number Three’s talked about it. Its not bad”
“its not bad”
“no, its different. Remember, SNTh went to visit his friend and he talked about being autistic. Its okay. Its not bad its different.”
“oh. Its not bad!”
“no, its different. It just means your brain works differently”
“uh huh” [he is not really listening now. he’s processing]
“Yes, SNTh has it too. It’s okay. It means there are some things that are hard for you to do. Like talking… and reading…. and saying the right thing to people..”
“but not singing”
“right. there are some things you do really well, better than most people like drawing”
“and singing”
“yes and singing” [okay so that is embellishment. he’s my son, i’m allowed]
“BUT if you want to be a singer, like you keep talking about, you NEED to learn to read.”

Thus ensues a very nice discussion about his advancements in reading skills. He becomes animated and interested. The topic of Autism is no longer important nor does it bother him. Its all worked out in his mind. Things degenerated a tad when I brought up Aspergers “ass-burgers?” “no, asPERgers” “oh” [smirk] He’s a teenager. He’s allowed to smirk at a funny name still.