Autism: Finding My Voice

Pretty ironic actually, but for a communication disorder, autism sure gets parents talking. I don't think there's an Autism Mom out there who hasn't had to learn to speak up, whether it is something they liked to do in the past or not. Being a special needs parent means encountering special situations, and, let's be frank...encountering a lot of ignorance along the way!
A list of examples would be countless...from cashiers weighing in when I'm speaking to my boy to the portrait studio lady who asked my little guy why he couldn't just sit still like his cousins...it's annoying. REALLY annoying.
But it's not these little brush ups that get my tongue wagging. With all invisible disabilities, parents are used to people not being very understanding of their child's behaviour. You get used to people not getting it.
What really bothers me, is that I have found I've had to be most assertive in places where you think you'd find more support!!! (Oh..fellow autism parents...I just know you are nodding your heads right now.) There are sometimes professionals who aren't being professional, service agencies who forget who they're servicing, other autism parents who think that their kids are the only one with needs....etc. etc.
Here's one example...at a soccer game this summer, some other child's home therapist actually interrupted me while I was talking to Aiden about an incident, and proceeded to speak to him herself. And next thing you know, I was hearing myself say, "Excuse me, but I don't need your help to parent my child." OH MY GOD! I couldn't believe I had said that to someone! Was I right in saying it? Yip. No doubt. What made me feel crappy is that I have gotten so used to having to speak up, that it now happened as second nature. I don't want to always be on the defense, always ready to step in and defend. I feel like Mommy Wolf sometimes.
But that's it, all parents have to look out for their kids. All parents have to speak up for their kids. We just have to do it a little more often.

Paint Me a Picture

Sometimes I think that if I just knew what the future would look like for Aiden, I"d feel better. It's just that all this guess work, and trying to forecast issues that may or may not arise is exhausting. I could handle all of these young years better maybe if I knew that everything was just going to be okay.

That's the thing about the autism spectrum, it's a spectrum. No 2 kids are alike. And while it is interesting, and maybe partially informative to hear how so-and-so's kid is making out, it doesn't tell me how my child will make out. It's all up in the air, and I find that really hard to handle. I am the type who needs to know what has to be done, so I can get to work and do it. This uncertainty is painful to me. I want to be able to make the best decisions for him NOW. It's all this waiting and seeing.

Aiden can change so much from week to week, and month to month, I can't get a clear picture! Some days I don't think people would believe me if I told them he has autism. Other days, it is very, very obvious.

I would love so much for someone to paint me a picture of his future. I'd love to see a picture of a young man, who's used his smarts to their best ability and has a solid career. I'd like to see him with friends, places to go, things to do.

But most of all, I'd love someone to paint me a picture of a man who is happy.

And loved.

...maybe that's one way I'm like every other parent out there.

The "A" Word

My son is not autistic. He has autism.

When people say "autistic" is just feels like my skin wrinkles and crawls and tingles in horrible, unspeakable ways. It is a word that I hate. It is not a word that I use.

I used to think that I was overly sensitive perhaps, but it turns out there are a lot of people like me out there. In fact, I've met few parents who use the 'A' word in reference to their kids. Our kids have autism. It is just one characteristic of them, not the be all, end all, all-defining characteristic of them. If you meet Aiden, and you heard that awful word first, you'd miss the opportunity for so many of his other great characteristics to take centre stage in how you view him. If I had to use an adjective for him, I'd say he's my creative kid...who has autism.

Now don't go feeling all bad if you're a regular in spitting out the 'A' word, and perhaps you're a parent who doesn't mind the word at all. That's fine...to each his own. Maybe you'll rethink it and agree with me maybe you'll rethink it and disagree with me, or maybe you'll just give your wording some thought. It's all good.

But as for me, I want to use language that puts the child first, and the label second. I think it's one of the reasons that some parents have such a big problem with labeling their children, they really believe that once they have a label, people won't see past it. Sadly, that is true in some cases, no doubt.

So, whether we're talking about a child with a heart condition, a child who has diabetes, a child with a hearing impairment, or a child with Asperger's Syndrome...let's let them be children first. Let's call them children first. And maybe, just maybe, everyone will see them, and appreciate them, first and foremost, as children.

Sometimes when you're sleeping...

Sometimes when you're sleeping, I just stare into your beautiful, silent face. So still, so restful. You just seem so small, and so young. It seems that I must have imagined that such a small, beautiful boy could have had me run ragged today, or that there could ever possibly be something "different" about you. When you sleep, you look like all others, somewhere else.

Everyone is in their own world when they're sleeping.

And, when you're sleeping, I feel the desire to gather you up, hold you so close, drink deeply your freshly-bathed scent. I am able to trace the outline of your cheek, without being brushed away.

Your little hands folded and quiet, your feet finally finished their day's journey.

In the morning you will rise, and your first couple of minutes will tell me which kind of day we will have. But for now, you sleep. And I continue my dreams for you...

House-bound

I don't get out much. No joking, I just don't get out much. Every time I'm invited somewhere, I have to go through a list of possible scenarios, and factors which will have to be negotiated, and decide whether or not it's worth the risk. Or if I'm just setting him up for failure. This is what is called by some as "stepping on eggshells". I call it being proactive.

Will there be too many people? Will it be too loud? Will a source of anxiety be present? Will I be able to handle the two of them on my own? Will I be able to peel him away when the time comes to go home? Did something happen here the last time that he'll expect to happen again?

The list goes on. Now, that's not to say that we stay home all the time. I often take a deep breath, say an abundance of prayers, and go anyway. I really try to get Aiden out out out, so that life will just get easier. We eat out once a week, and can now get through an entire meal!!! (Yay!) BUT, I go at off times to restaurants, so they're not too crowded. And, you will never, never, never find me at McDonald's playroom. (whole OTHER story) We survive birthday parties, skating, swimming, soccer, music classes, shopping trips, playgrounds, etc, etc. But it takes a lot out of me.

But, there's lots I don't get to go to. If you're one of my friends from Outer Cove, you'll notice I missed the Folk Festival today. Not doable. Way too loud, and if it weren't, he'd want to be in the playground the whole time, so I'd either have to hang out there away from the crowd all day, or have him crying to be at the playground part. No fun. I also had to miss my special cousin's birthday supper tonight. Hubby was working, so would have had to take kiddies, very close to bedtime, and kind of restaurant where it takes a while to get served, also too peak a time, and too many people at our table. Would have been bad too.

I've gotten used to missing out on things, but sometimes I really wish I could go. I also fear that people will stop inviting me places, because I can never go. I also worry that I hurt people's feelings with my "no shows" sometimes. What I really hate, is when people try to convince me that I should go anyway. I don't do that anymore, if I know something is going to end terribly, then I avoid it. I need Aiden to experience social success, and I refuse to set him up to fail because I don't want to miss out.

So, if I blew off an event you invited me too, I'm sorry. And maybe I'll see you at next year's Festival..maybe.

Autism Advocacy

I am posting here a copy of a letter I have sent to Ms. Yvonne Jones, leader of the opposition in our provincial government. She has shown herself to be an advocate for children with autism, and I wanted to share with her some of my own opinions concerning early intervention. I know lots of you out there share some of my views, and others may disagree as well. I urge you to contact her yourself, she seems to have "good listening ears"!!!
Contact her at yvonnejones@gov.nl.ca

Dear Ms. Jones,

As the mother of a 4 year old boy diagnosed with autism, I would like to thank you for the attention you have been bringing to autism in our province. It is clear to me that you serve as an advocate for our children. With all the struggles inherent in parenting autism, all support is appreciated, and yours does not go unnoticed.

I heard on CBC radio today that you have been addressing the wait time for diagnoses of autism, and the subsequent wait for early interrvention services. Early intervention services is a topic of great interest to me. While children in Newfoundland and Labrador do not have to wait for ABA services when first diagnosed, they do have to wait for speech and occupational therapy services. ABA uses programs based on behavioural modification, and while many children with autism have severe sensory processing issues, ABA is not the best first step to meaningful intervention. We cannot discipline from our children behaviours that are based on sensory input need, we need instead to give them proper exercises and input activities which will take the place of "troublesome behaviours."Also, there are families like my own who do not feel that ABA is the proper intervention for their child.

My son has Asperger's Syndrome, and my husband and I found that ABA did not address his individual needs. As our understanding of the autism spectrum broadens, there will continue to be more and more higher functioning autism, and Asperger Syndrome diagnosed. We too feel that our children deserve immediate, and meaningful interventions. Parents of children with autism often face tough choices in terms of their ability to have two parents working full time. Yet, the costs of having our children benefit from private OT, of private speech while painfully waiting for these services is not cheap. I know, because I have had to pay for them out of my own pocket, like many other families. We all want what is best for our children, so we make these sacrifices. But, they are sacrifices.

So thank you for your voice in autism advocacy, and I encourage you to look deeply into our current early interventions, and to see the gaping holes that us parents must traverse.I will be sharing this letter with my blog about parenting Asperger's Syndrome, listed below under my signature.

Warm Regards,
Natalie Dalton

http://myyellowapple.blogspot.com

Large black please.

Just when you think things are going good....whammo, you get a couple of bad days right in a row to put you in your place. The last few days have had their share of strife around here. My poor little guy's body is on bust. If you're familiar with sensory issues, you'll understand what it means to be on bust. If you're not familiar with sensory issues, consider yourself to live a very charmed life, at least on that front. ( I may write about it at some point, but I honestly don't know where to start.)

After a very long, very trying day yesterday, which involved one disastrous shopping trip, and one meltdown to end all meltdowns, and a baby sister whose nap got cut way too short....I never thought bedtime would arrive. But arrive it did, and I got to tell ya, Francis and I were some happy with ourselves to have survived the day! But...at 4 a.m. this morning, when himself came slinking into our room...I had no idea that he would be up for the day. But, alas, he was. What can I say? There's only so much you can do with no sleep. And I feel like I can handle an awful lot with the disrupted sleep that I get. But, no sleep? Just too hard. Just too painful. Just too true.

We get these nights sometimes, not all the time, but more often than I'd wish. You try going to work all day after being up since 2 a.m. Ouch.

It's funny, whenever I meet parents of kids with autism, we always ask each other two things...how they sleep, and how they eat. Every time. I am not the only mom to suffer like this. Far from it. I remember my own personal 'take back the night' campaign a few years ago, which involved ditching his nap, because if Aiden slept at all during the day, he'd be up til all hours at night.

So, I can hardly wait to hit the hay tonight. I'd better get down early, because God only knows what time I'll be getting up. No wonder I'm addicted to Tim's coffee.

Meltdowns vs. Tantrums

Just to clarify things, in my opinion, a meltdown and a tantrum are two different beasts. In all fairness, both are really hard to deal with, cause great embarrassment when brandished in public and make you question your decision to have become a parent in the first place! Although, if you're new to being humiliated publicly, you may find comfort in the knowledge that you do actually get used to it, and it is possible to reach that place where you no longer care what other people think! Honest.

Now, I don't want to give the impression that Aiden is constantly having public meltdowns, because he's not. BUT, when they happen, they're doozies! Like, awful. But, that's all in a day's work.

Back to my distinctions...and this is all opinion here folks, but I do believe I am right nonetheless. A tantrum, which can be thrown by any manner of child, old, young, typical, atypical..whatever....is usually a plea to get their own way. It is an attempt to outlast you,shame you, overcome you, possibly scare you...all with the ultimate goal of getting their own way. If their tantrum works...you're in big trouble, because they'll come faster, and more furiously in the future!

A meltdown however is when the child has actually lost all ability to handle their emotions. Whatever it is that is bugging them is now center stage in their life, and they just need to break free. Meltdowns can happen when they're overtired, overstimulated, overstressed, of over-anythinged. ( I think I just invented a word.) Aiden typically melts down when he has an idea that he can't materialize. For example, he has an image of a craft he'd like to make, but without Martha Stewart on site, it is just way beyond the realm of possible. Well, look out! There's no soothing possible, no nothing. The only thing I find that works is to take away whatever is agitating him, often by way of pulling from his abnormally strong grasp. BUT, when whatever has him overwhelmed is gone, instead of being angry, as he would be with a tantrum, he is almost RELIEVED to be freed from the stress.

Now, that's a meltdown.

And it's exhausting.

And it's a big part of autism.